RE: Elevated PSA

[Guest guest]

At the low levels, measuring errors and lab differences can play a part. Thus, waiting until or if the level increases to 1, at which point, measurement errors are no longer a factor, makes sense. With radiation, the use of hormone blockade therapy works in synergy to increase the effect of radiation. Now, if radiation instead of surgery were used as the first line of treatment, your situation would have been different and worse, as post radiation salvage surgery is so tricky that few surgeons will do it. Cryosurgery is usually the preferred salvage ablation when radiation treatment fails.Louis. . . To: ProstateCancerSupport Sent: Thu, September 9, 2010 6:09:18 PMSubject: Elevated PSA

Seeking

advice and information- In

5/09 I was diagnosed with PCa. I was 60 years old at the time of diagnosis, and

will turn 62 in January. The biopsy indicated that there were 2 of 12 samples

with cancer, on the right side of the prostate. My Gleason Score was 6 (3+3). One

block was <5% and the other was approximately 15%. I had robotic surgery in

August of ’09. The doctor said that the cancer was contained within the

prostate. He sampled the lymph nodes and did not find anything. The pathology

came back with a Gleason Score of 7 (3+4). I had a follow-up in 11/09 and had a

PSA of 0.11, in 2/10 the PSA was 0.19, and I went back today and it was 0.3. I

have another appointment in March to see where my level is. My

doctor suggested that I schedule an appt. with a radiologist, which is

scheduled for the 19th of this month. He said that usually the

radiologist won’t treat until the PSA is between 0.5 and 1.0, but said

that I could talk to him for input. He also said that the level of my PSA is

too small for a bone scan to detect anything. He also said that he would not

suggest hormone therapy unless the radiation was attempted and my PSA levels

were higher. I’ve

been following this site since I was first diagnosed, and have been reading of

issues with radiation—burns and bowel issues. I don’t want to rush

into anything, but I am concerned with the fact that my PSA has almost tripled

since November of last year. Any

advice and/or suggestions would be appreciated. Tks-Dennis

Dennis J dennisp42@... Seffner, FL 33584

[Guest guest]

Thanks,

Louis. The reason that I chose surgery was if there was a reoccurrence, there

would be follow-up treatment available. So, you’re saying that if I have

radiation, then hormone blockage therapy could be done at the same time? I’ll

have to keep that in mind when I speak to the radiation doctor.

tks-Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Louis

Carliner

Sent: Thursday, September 09, 2010 18:21

To: ProstateCancerSupport

Subject: Re: Elevated PSA

At the low

levels, measuring errors and lab differences can play a part. Thus, waiting

until or if the level increases to 1, at which point, measurement errors are no

longer a factor, makes sense. With radiation, the use of hormone blockade

therapy works in synergy to increase the effect of radiation. Now, if radiation

instead of surgery were used as the first line of treatment, your situation

would have been different and worse, as post radiation salvage surgery is so

tricky that few surgeons will do it. Cryosurgery is usually the preferred

salvage ablation when radiation treatment fails.

Louis. . .

From: D

To: ProstateCancerSupport

Sent: Thu, September 9, 2010 6:09:18 PM

Subject: Elevated PSA

Seeking advice and information-

In 5/09 I was diagnosed with PCa. I was 60 years old at

the time of diagnosis, and will turn 62 in January. The biopsy indicated that

there were 2 of 12 samples with cancer, on the right side of the prostate. My

Gleason Score was 6 (3+3). One block was <5% and the other was approximately

15%. I had robotic surgery in August of ’09. The doctor said that the cancer

was contained within the prostate. He sampled the lymph nodes and did not find

anything. The pathology came back with a Gleason Score of 7 (3+4). I had a

follow-up in 11/09 and had a PSA of 0.11, in 2/10 the PSA was 0.19, and I

went back today and it was 0.3. I have another appointment in March to see

where my level is.

My doctor suggested that I schedule an appt. with a

radiologist, which is scheduled for the 19th of this month. He said

that usually the radiologist won’t treat until the PSA is between 0.5 and 1.0,

but said that I could talk to him for input. He also said that the level of my

PSA is too small for a bone scan to detect anything. He also said that he would

not suggest hormone therapy unless the radiation was attempted and my PSA

levels were higher.

I’ve been following this site since I was first

diagnosed, and have been reading of issues with radiation—burns and bowel

issues. I don’t want to rush into anything, but I am concerned with the fact

that my PSA has almost tripled since November of last year.

Any advice and/or suggestions would be appreciated.

Tks-Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

[Guest guest]

In fact, I was going to consider brachytherapy until the urologist told me that I would have to be on lupron for some three months prior to that. That was plan changer, and I went for surgery. With any form of radiation treatment, hormone blockage treatment works in synergy to heighten the effectiveness of radiation treatment. Hormone blockade therapy is used even with proton beam therapy, which is reported to have the least incidence of side effects.Louis. . . To: ProstateCancerSupport Sent: Thu, September 9, 2010 6:56:12 PMSubject: RE: Elevated PSA

Thanks,

Louis. The reason that I chose surgery was if there was a reoccurrence, there

would be follow-up treatment available. So, you’re saying that if I have

radiation, then hormone blockage therapy could be done at the same time? I’ll

have to keep that in mind when I speak to the radiation doctor. tks-Dennis

Dennis J dennisp42@... Seffner, FL 33584

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Louis

Carliner

Sent: Thursday, September 09, 2010 18:21

To: ProstateCancerSupport

Subject: Re: Elevated PSA

At the low

levels, measuring errors and lab differences can play a part. Thus, waiting

until or if the level increases to 1, at which point, measurement errors are no

longer a factor, makes sense. With radiation, the use of hormone blockade

therapy works in synergy to increase the effect of radiation. Now, if radiation

instead of surgery were used as the first line of treatment, your situation

would have been different and worse, as post radiation salvage surgery is so

tricky that few surgeons will do it. Cryosurgery is usually the preferred

salvage ablation when radiation treatment fails.

Louis. . .

From: D

To: ProstateCancerSupport

Sent: Thu, September 9, 2010 6:09:18 PM

Subject: Elevated PSA

Seeking advice and information- In 5/09 I was diagnosed with PCa. I was 60 years old at

the time of diagnosis, and will turn 62 in January. The biopsy indicated that

there were 2 of 12 samples with cancer, on the right side of the prostate. My

Gleason Score was 6 (3+3). One block was <5% and the other was approximately

15%. I had robotic surgery in August of ’09. The doctor said that the cancer

was contained within the prostate. He sampled the lymph nodes and did not find

anything. The pathology came back with a Gleason Score of 7 (3+4). I had a

follow-up in 11/09 and had a PSA of 0.11, in 2/10 the PSA was 0.19, and I

went back today and it was 0.3. I have another appointment in March to see

where my level is. My doctor suggested that I schedule an appt. with a

radiologist, which is scheduled for the 19th of this month. He said

that usually the radiologist won’t treat until the PSA is between 0.5 and 1.0,

but said that I could talk to him for input. He also said that the level of my

PSA is too small for a bone scan to detect anything. He also said that he would

not suggest hormone therapy unless the radiation was attempted and my PSA

levels were higher. I’ve been following this site since I was first

diagnosed, and have been reading of issues with radiation—burns and bowel

issues. I don’t want to rush into anything, but I am concerned with the fact

that my PSA has almost tripled since November of last year. Any advice and/or suggestions would be appreciated. Tks-Dennis

Dennis J dennisp42@... Seffner, FL 33584

[Guest guest]

> Seeking advice and information-

The Gleason 3+4=7 on the pathological examination is moderately

risky and requires close attention.

The rate of increase of your PSA is a matter for great concern.

For a " doctor " to tell you to wait *six months* before checking

it again makes me want to tear my hair out.

As B. Strum, MD, one of the best and brightest, has

written, " There is NOWHERE in oncology where waiting for the

tumor cell population to increase (and to mutate) is in the

better interests of the patient. " (emphasis his)

Like surgery, radiation is a local treatment, used when one knows

where the cancer is, which is not the case here. BTW, the tales

about awful side effects from radiation are, to the extent they

are true, based primarily upon older modes of delivering the

radiation.

Urologists are surgeons, and many times surgeons rush to a

treatment without

really understanding what they are doing. Once your uro had

performed his job, he should have had nothing further to do with

it. But, again quoting Strum, " unfortunately,

we appear to be living in a time when physician income is more

important than patient outcome. "

(Strum tends to speak his mind freely; this upsets some medics,

especially uros)

Regards,

Steve J

" Empowerment: taking responsibility for and authority over one's own

outcomes based on education and knowledge of the consequences and

contingencies involved in one's own decisions. This focus

provides the

uplifting energy that can sustain in the face of crisis. "

--Donna Pogliano, co-author of _A Primer on Prostate Cancer_,

subtitled

" The Empowered Patient's Guide. "

[Guest guest]

Dennis,

Have you looked at Proton radiation treatment. I did , and am sure

glad I did. No burnt colon, No ED,

No incontinence. And I started with a psa of 20 3years ago. Psa is

now <.1.

d.

Thanks,

Louis. The reason that I chose surgery was if there

was a reoccurrence, there

would be follow-up treatment available. So, you’re

saying that if I have

radiation, then hormone blockage therapy could be done

at the same time? I’ll

have to keep that in mind when I speak to the

radiation doctor.

tks-Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On

Behalf Of Louis

Carliner

Sent: Thursday, September 09, 2010 18:21

To: ProstateCancerSupport

Subject: Re:

Elevated PSA

At the low

levels, measuring errors and lab differences

can play a part. Thus, waiting

until or if the level increases to 1, at which

point, measurement errors are no

longer a factor, makes sense. With radiation,

the use of hormone blockade

therapy works in synergy to increase the

effect of radiation. Now, if radiation

instead of surgery were used as the first line

of treatment, your situation

would have been different and worse, as post

radiation salvage surgery is so

tricky that few surgeons will do it.

Cryosurgery is usually the preferred

salvage ablation when radiation treatment

fails.

Louis. . .

From: D

To:

ProstateCancerSupport

Sent: Thu, September 9, 2010

6:09:18 PM

Subject:

Elevated PSA

Seeking advice and

information-

In 5/09 I was

diagnosed with PCa. I was 60 years old

at

the time of diagnosis, and will turn

62 in January. The biopsy indicated

that

there were 2 of 12 samples with

cancer, on the right side of the

prostate. My

Gleason Score was 6 (3+3). One block

was <5% and the other was

approximately

15%. I had robotic surgery in August

of ’09. The doctor said that the

cancer

was contained within the prostate. He

sampled the lymph nodes and did not

find

anything. The pathology came back with

a Gleason Score of 7 (3+4). I had a

follow-up in 11/09 and had a PSA of

0.11, in 2/10 the PSA was 0.19, and I

went back today and it was 0.3. I have

another appointment in March to see

where my level is.

My doctor suggested

that I schedule an appt. with a

radiologist, which is scheduled for

the 19th of this month. He

said

that usually the radiologist won’t

treat until the PSA is between 0.5 and

1.0,

but said that I could talk to him for

input. He also said that the level of

my

PSA is too small for a bone scan to

detect anything. He also said that he

would

not suggest hormone therapy unless the

radiation was attempted and my PSA

levels were higher.

I’ve been

following this site since I was first

diagnosed, and have been reading of

issues with radiation—burns and

bowel

issues. I don’t want to rush into

anything, but I am concerned with the

fact

that my PSA has almost tripled since

November of last year.

Any advice and/or

suggestions would be appreciated.

Tks-Dennis

Dennis J

dennisp42@...

Seffner, FL

33584

[Guest guest]



Loius,

I would like to point out that Androgen deprivation therapy, or Hormone Blockade Therapy as you term it, is NOT always used in conjunction with any form of radiation. I had 44 sessions of Image Guided Radiation Therapy (IGRT - photon beam external radiation) and did not have any form of ADT. I correspond with several guys who have had Proton therapy as their choice of treatment and none of them have had ADT before, during or after Proton treatment (ie neo, adjuvant or post TX ADT therapy).

I don't think it is wise to say that ' if radiation instead of surgery.... your situation would have been worse'. You cannot know that for sure, you're not his doctor and can't second guess how Dennis's Tx would have turned out if he had chosen a different path. His situation may have been worse but it may have been better; the inaccuracy (3-7mm) of most forms of radiation may have destroyed any cancer cells that surgery (which only removes cancer cells within the margin of where the scalpel cuts) could have missed.

Malaga, Spain

Elevated PSA

Seeking advice and information-

In 5/09 I was diagnosed with PCa. I was 60 years old at the time of diagnosis, and will turn 62 in January. The biopsy indicated that there were 2 of 12 samples with cancer, on the right side of the prostate. My Gleason Score was 6 (3+3). One block was <5% and the other was approximately 15%. I had robotic surgery in August of ’09. The doctor said that the cancer was contained within the prostate. He sampled the lymph nodes and did not find anything. The pathology came back with a Gleason Score of 7 (3+4). I had a follow-up in 11/09 and had a PSA of 0.11, in 2/10 the PSA was 0.19, and I went back today and it was 0.3. I have another appointment in March to see where my level is.

My doctor suggested that I schedule an appt. with a radiologist, which is scheduled for the 19th of this month. He said that usually the radiologist won’t treat until the PSA is between 0.5 and 1.0, but said that I could talk to him for input. He also said that the level of my PSA is too small for a bone scan to detect anything. He also said that he would not suggest hormone therapy unless the radiation was attempted and my PSA levels were higher.

I’ve been following this site since I was first diagnosed, and have been reading of issues with radiation—burns and bowel issues. I don’t want to rush into anything, but I am concerned with the fact that my PSA has almost tripled since November of last year.

Any advice and/or suggestions would be appreciated.

Tks-Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

[Guest guest]

One thing that I have learned during my

journey with PCa is you only get one chance at attacking it and once it gets

loose you can’t cure it, you can only slow it down. Once surgery is

over and your PSA is on the rise start visiting an Oncologist. Talk with

a radiation oncologist and a medical oncologist and see what they have to

say. Don’t let the treatments scare you. They are not always

pleasant but they are only a small hitch in your life’s journey. I can

say this since I am sitting here after just completing radiation treatments.

Yes, there are more side effects that come

along with radiation but they do go away. I was also told by my

oncologist that he wants to keep me on hormones for a year or two after the

treatments to have the best chances of positive results. Am I happy about

it? Not really but if that is what I need to do to increase my chances I guess

that is what I am going to do. My cancer was aggressive towards me so I

am going to treat it aggressively. In the mean time I am still living a

fairly normal life. I don’t have too many changes to my routine and

I have had some pretty good times this past year.

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of D

Sent: Thursday, September 09, 2010

6:09 PM

To: ProstateCancerSupport

Subject:

Elevated PSA

Seeking advice and information-

In 5/09 I was diagnosed with PCa. I was 60 years old at the time

of diagnosis, and will turn 62 in January. The biopsy indicated that there were

2 of 12 samples with cancer, on the right side of the prostate. My Gleason

Score was 6 (3+3). One block was <5% and the other was approximately 15%. I

had robotic surgery in August of ’09. The doctor said that the cancer was

contained within the prostate. He sampled the lymph nodes and did not find

anything. The pathology came back with a Gleason Score of 7 (3+4). I had a

follow-up in 11/09 and had a PSA of 0.11, in 2/10 the PSA was 0.19, and I

went back today and it was 0.3. I have another appointment in March to see

where my level is.

My doctor suggested that I schedule an appt. with a radiologist,

which is scheduled for the 19th of this month. He said that usually

the radiologist won’t treat until the PSA is between 0.5 and 1.0, but

said that I could talk to him for input. He also said that the level of my PSA

is too small for a bone scan to detect anything. He also said that he would not

suggest hormone therapy unless the radiation was attempted and my PSA levels

were higher.

I’ve been following this site since I was first diagnosed,

and have been reading of issues with radiation—burns and bowel issues. I

don’t want to rush into anything, but I am concerned with the fact that

my PSA has almost tripled since November of last year.

Any advice and/or suggestions would be appreciated.

Tks-Dennis

Dennis J

dennisp42@...

Seffner,

FL 33584

[Guest guest]

Sorry for the long post, but this shows you're not alone with this type of decision.

I was diagnosed in 3/07 (age 53) and had a perineal prostatectomy in 5/07. Pre-surgery PSA was 7.4 and pre and post Gleason was 3+3 with nothing within the margins (he did not check the lymph nodes). A month after surgery PSA was down to .51. Two months later it went to .28, but by 11/07 it went up to .41 and then 12/07 .54. The surgeon wanted to start radiation treatments before the PSA got back to 1.0, so I did 33 IMRT treatments from 1/08-3/08. I had no real side effects from the IMRT other than getting tired towards the end and that lasted about 6 months. In 4/08 PSA was down to .21, and then .1 in 9/08 and I thought things were looking better. In 1/09 it went to 0.12, by 8/09 .17, 1/10 .24, and 6/10 .28. My surgeon/urologist feels we will wait for a ‘real’ increase before anything (most likely hormone treatment), is attempted. I think it may be time to bring on a prostate

cancer oncologist, maybe at Hopkins or the Mayo clinic at least to have a baseline established when some form of treatment begins. It can be difficult to determine when to take action based on your own feelings or research as opposed to the doctor watching your case.

Good Luck to us all.. -

Subject: Elevated PSATo: ProstateCancerSupport Date: Thursday, September 9, 2010, 6:09 PM

Seeking advice and information-

In 5/09 I was diagnosed with PCa. I was 60 years old at the time of diagnosis, and will turn 62 in January. The biopsy indicated that there were 2 of 12 samples with cancer, on the right side of the prostate. My Gleason Score was 6 (3+3). One block was <5% and the other was approximately 15%. I had robotic surgery in August of ’09. The doctor said that the cancer was contained within the prostate. He sampled the lymph nodes and did not find anything. The pathology came back with a Gleason Score of 7 (3+4). I had a follow-up in 11/09 and had a PSA of 0.11, in 2/10 the PSA was 0.19, and I went back today and it was 0.3. I have another appointment in March to see where my level is.

My doctor suggested that I schedule an appt. with a radiologist, which is scheduled for the 19th of this month. He said that usually the radiologist won’t treat until the PSA is between 0.5 and 1.0, but said that I could talk to him for input. He also said that the level of my PSA is too small for a bone scan to detect anything. He also said that he would not suggest hormone therapy unless the radiation was attempted and my PSA levels were higher.

I’ve been following this site since I was first diagnosed, and have been reading of issues with radiation—burns and bowel issues. I don’t want to rush into anything, but I am concerned with the fact that my PSA has almost tripled since November of last year.

Any advice and/or suggestions would be appreciated.

Tks-Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

[Guest guest]

My perineal prostatectomy was done in Sept. 1006. Pre-op PSA was at least 9. 6 weeks post surgery, the PSA was below limits of measurement, and has stayed that way to this date. Pre-op Gleason was 6, but I do not know the post op Gleason.Louis. . . To: ProstateCancerSupport Sent: Fri, September 10, 2010 2:08:20

PMSubject: Re: Elevated PSA

Sorry for the long post, but this shows you're not alone with this type of decision. I was diagnosed in 3/07 (age 53) and had a perineal prostatectomy in 5/07. Pre-surgery PSA was 7.4 and pre and post Gleason was 3+3 with nothing within the margins (he did not check the lymph nodes). A month after surgery PSA was down to .51. Two months later it went to .28, but by 11/07 it went up to .41 and then 12/07 .54. The surgeon wanted to start radiation treatments before the PSA got back to 1.0, so I did 33 IMRT treatments from 1/08-3/08. I had no real side effects from the IMRT other than getting tired towards the end and that lasted about 6 months. In 4/08 PSA was down to .21, and then .1 in 9/08 and I thought things were looking better. In 1/09 it went to 0.12, by 8/09 .17, 1/10 .24, and 6/10 .28. My surgeon/urologist feels we will wait for a ‘real’ increase before anything (most likely hormone treatment), is attempted. I think it may be time to bring on a prostate

cancer oncologist, maybe at Hopkins or the Mayo clinic at least to have a baseline established when some form of treatment begins. It can be difficult to determine when to take action based on your own feelings or research as opposed to the doctor watching your case.

Good Luck to us all.. -

Subject: Elevated PSATo: ProstateCancerSupport Date: Thursday, September 9, 2010, 6:09 PM

Seeking advice and information-

In 5/09 I was diagnosed with PCa. I was 60 years old at the time of diagnosis, and will turn 62 in January. The biopsy indicated that there were 2 of 12 samples with cancer, on the right side of the prostate. My Gleason Score was 6 (3+3). One block was <5% and the other was approximately 15%. I had robotic surgery in August of ’09. The doctor said that the cancer was contained within the prostate. He sampled the lymph nodes and did not find anything. The pathology came back with a Gleason Score of 7 (3+4). I had a follow-up in 11/09 and had a PSA of 0.11, in 2/10 the PSA was 0.19, and I went back today and it was 0.3. I have another appointment in March to see where my level is.

My doctor suggested that I schedule an appt. with a radiologist, which is scheduled for the 19th of this month. He said that usually the radiologist won’t treat until the PSA is between 0.5 and 1.0, but said that I could talk to him for input. He also said that the level of my PSA is too small for a bone scan to detect anything. He also said that he would not suggest hormone therapy unless the radiation was attempted and my PSA levels were higher.

I’ve been following this site since I was first diagnosed, and have been reading of issues with radiation—burns and bowel issues. I don’t want to rush into anything, but I am concerned with the fact that my PSA has almost tripled since November of last year.

Any advice and/or suggestions would be appreciated.

Tks-Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

[Guest guest]

My perineal prostatectomy was done in Sept. 1006. Pre-op PSA was at least 9. 6 weeks post surgery, the PSA was below limits of measurement, and has stayed that way to this date. Pre-op Gleason was 6, but I do not know the post op Gleason.Louis. . . To: ProstateCancerSupport Sent: Fri, September 10, 2010 2:08:20

PMSubject: Re: Elevated PSA

Sorry for the long post, but this shows you're not alone with this type of decision. I was diagnosed in 3/07 (age 53) and had a perineal prostatectomy in 5/07. Pre-surgery PSA was 7.4 and pre and post Gleason was 3+3 with nothing within the margins (he did not check the lymph nodes). A month after surgery PSA was down to .51. Two months later it went to .28, but by 11/07 it went up to .41 and then 12/07 .54. The surgeon wanted to start radiation treatments before the PSA got back to 1.0, so I did 33 IMRT treatments from 1/08-3/08. I had no real side effects from the IMRT other than getting tired towards the end and that lasted about 6 months. In 4/08 PSA was down to .21, and then .1 in 9/08 and I thought things were looking better. In 1/09 it went to 0.12, by 8/09 .17, 1/10 .24, and 6/10 .28. My surgeon/urologist feels we will wait for a ‘real’ increase before anything (most likely hormone treatment), is attempted. I think it may be time to bring on a prostate

cancer oncologist, maybe at Hopkins or the Mayo clinic at least to have a baseline established when some form of treatment begins. It can be difficult to determine when to take action based on your own feelings or research as opposed to the doctor watching your case.

Good Luck to us all.. -

Subject: Elevated PSATo: ProstateCancerSupport Date: Thursday, September 9, 2010, 6:09 PM

Seeking advice and information-

In 5/09 I was diagnosed with PCa. I was 60 years old at the time of diagnosis, and will turn 62 in January. The biopsy indicated that there were 2 of 12 samples with cancer, on the right side of the prostate. My Gleason Score was 6 (3+3). One block was <5% and the other was approximately 15%. I had robotic surgery in August of ’09. The doctor said that the cancer was contained within the prostate. He sampled the lymph nodes and did not find anything. The pathology came back with a Gleason Score of 7 (3+4). I had a follow-up in 11/09 and had a PSA of 0.11, in 2/10 the PSA was 0.19, and I went back today and it was 0.3. I have another appointment in March to see where my level is.

My doctor suggested that I schedule an appt. with a radiologist, which is scheduled for the 19th of this month. He said that usually the radiologist won’t treat until the PSA is between 0.5 and 1.0, but said that I could talk to him for input. He also said that the level of my PSA is too small for a bone scan to detect anything. He also said that he would not suggest hormone therapy unless the radiation was attempted and my PSA levels were higher.

I’ve been following this site since I was first diagnosed, and have been reading of issues with radiation—burns and bowel issues. I don’t want to rush into anything, but I am concerned with the fact that my PSA has almost tripled since November of last year.

Any advice and/or suggestions would be appreciated.

Tks-Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

[Guest guest]

Hey Louis;

If you had your surgery in 1006, you are pretty darn OLD!!! LOL!

Thanks for the unintensional smile,

Dan Harriman

Orange, TexasIf at first you don't succeed, maybe you shouldn't try sky diving!

Subject: Elevated PSATo: ProstateCancerSupport Date: Thursday, September 9, 2010, 6:09 PM

Seeking advice and information-

In 5/09 I was diagnosed with PCa. I was 60 years old at the time of diagnosis, and will turn 62 in January. The biopsy indicated that there were 2 of 12 samples with cancer, on the right side of the prostate. My Gleason Score was 6 (3+3). One block was <5% and the other was approximately 15%. I had robotic surgery in August of ’09. The doctor said that the cancer was contained within the prostate. He sampled the lymph nodes and did not find anything. The pathology came back with a Gleason Score of 7 (3+4). I had a follow-up in 11/09 and had a PSA of 0.11, in 2/10 the PSA was 0.19, and I went back today and it was 0.3. I have another appointment in March to see where my level is.

My doctor suggested that I schedule an appt. with a radiologist, which is scheduled for the 19th of this month. He said that usually the radiologist won’t treat until the PSA is between 0.5 and 1.0, but said that I could talk to him for input. He also said that the level of my PSA is too small for a bone scan to detect anything. He also said that he would not suggest hormone therapy unless the radiation was attempted and my PSA levels were higher. I’ve been following this site since I was first diagnosed, and have been reading of issues with radiation—burns and bowel issues. I don’t want to rush into anything, but I am concerned with the fact that my PSA has almost tripled since November of last year. Any advice and/or suggestions would be appreciated. Tks-Dennis

Dennis J

dennisp42@... Seffner, FL 33584

[Guest guest]

Typo error! The year is 2006!Louis. . . To: ProstateCancerSupport Sent: Fri, September 10, 2010 2:30:05 PMSubject: Re: Elevated PSA

Hey Louis;

If you had your surgery in 1006, you are pretty darn OLD!!! LOL!

Thanks for the unintensional smile,

Dan Harriman

Orange, TexasIf at first you don't succeed, maybe you shouldn't try sky diving!

Subject: Elevated PSATo: ProstateCancerSupport Date: Thursday, September 9, 2010, 6:09 PM

Seeking advice and information-

In 5/09 I was diagnosed with PCa. I was 60 years old at the time of diagnosis, and will turn 62 in January. The biopsy indicated that there were 2 of 12 samples with cancer, on the right side of the prostate. My Gleason Score was 6 (3+3). One block was <5% and the other was approximately 15%. I had robotic surgery in August of ’09. The doctor said that the cancer was contained within the prostate. He sampled the lymph nodes and did not find anything. The pathology came back with a Gleason Score of 7 (3+4). I had a follow-up in 11/09 and had a PSA of 0.11, in 2/10 the PSA was 0.19, and I went back today and it was 0.3. I have another appointment in March to see where my level is.

My doctor suggested that I schedule an appt. with a radiologist, which is scheduled for the 19th of this month. He said that usually the radiologist won’t treat until the PSA is between 0.5 and 1.0, but said that I could talk to him for input. He also said that the level of my PSA is too small for a bone scan to detect anything. He also said that he would not suggest hormone therapy unless the radiation was attempted and my PSA levels were higher. I’ve been following this site since I was first diagnosed, and have been reading of issues with radiation—burns and bowel issues. I don’t want to rush into anything, but I am concerned with the fact that my PSA has almost tripled since November of last year. Any advice and/or suggestions would be appreciated. Tks-Dennis

Dennis J

dennisp42@... Seffner, FL 33584

[Guest guest]

I’m

sorry for the delay in getting back and I thank all that responded to my post. I’ll

be going to the radiation oncologist tomorrow and will be interested in what he

has to say. Your comments and suggestions helped me come up with questions to

ask.

I

was reading Garry Rudd’s email and it reminded me of a conversation I had Sunday

with a friend at church. He’s a recently retired oncologist. I was asking his

impression about what is happening. His comment was don’t go to the oncologist.

It’s like going to a car dealership and asking if your car needs an oil change.

You know they’re going to say yes. He also said to stop having PSA tests. He

said that chances are that I won’t have any issues—that’s no guarantee he

added, but more and more research is showing that PCa is being over treated. I

look at Garry’s remark that his PSA was 2000, and how it was brought down with

hormones, so I wonder if it will be better to just live my life and stop

worrying about it. If I start showing symptoms, I can go get it checked out.

I’ll

see the oncologist tomorrow and see what he has to say.

Thanks

again to all, Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Louis

Carliner

Sent: Friday, September 10, 2010 14:25

To: ProstateCancerSupport

Subject: Re: Elevated PSA

My perineal

prostatectomy was done in Sept. 1006. Pre-op PSA was at least 9. 6 weeks post

surgery, the PSA was below limits of measurement, and has stayed that way to this

date. Pre-op Gleason was 6, but I do not know the post op Gleason.

Louis. . .

From: Bechtold

To: ProstateCancerSupport

Sent: Fri, September 10, 2010 2:08:20 PM

Subject: Re: Elevated PSA

Sorry for the long post, but this shows you're not

alone with this type of decision.

I was diagnosed in 3/07 (age 53)

and had a perineal prostatectomy in 5/07. Pre-surgery PSA was 7.4 and pre and

post Gleason was 3+3 with nothing within the margins (he did not check the

lymph nodes). A month after surgery PSA was down to .51. Two months later it

went to .28, but by 11/07 it went up to .41 and then 12/07 .54. The surgeon

wanted to start radiation treatments before the PSA got back to 1.0, so I did

33 IMRT treatments from 1/08-3/08. I had no real side effects from the IMRT

other than getting tired towards the end and that lasted about 6 months. In

4/08 PSA was down to .21, and then .1 in 9/08 and I thought things were

looking better. In 1/09 it went to 0.12, by 8/09 .17, 1/10 .24, and 6/10 .28.

My surgeon/urologist feels we will wait for a ‘real’ increase before anything

(most likely hormone treatment), is attempted. I think it may be time to

bring on a prostate cancer oncologist, maybe at Hopkins or the Mayo

clinic at least to have a baseline established when some form of treatment

begins. It can be difficult to determine when to take action based on your

own feelings or research as opposed to the doctor watching your case.

Good Luck to us all.. -

Subject: Elevated PSA

To: ProstateCancerSupport

Date: Thursday, September 9, 2010, 6:09 PM

Seeking advice and

information-

In 5/09 I was

diagnosed with PCa. I was 60 years old at the time of diagnosis, and will

turn 62 in January. The biopsy indicated that there were 2 of 12 samples with

cancer, on the right side of the prostate. My Gleason Score was 6 (3+3). One

block was <5% and the other was approximately 15%. I had robotic surgery

in August of ’09. The doctor said that the cancer was contained within the

prostate. He sampled the lymph nodes and did not find anything. The pathology

came back with a Gleason Score of 7 (3+4). I had a follow-up in 11/09 and had

a PSA of 0.11, in 2/10 the PSA was 0.19, and I went back today and it

was 0.3. I have another appointment in March to see where my level is.

My doctor suggested

that I schedule an appt. with a radiologist, which is scheduled for the 19th

of this month. He said that usually the radiologist won’t treat until the PSA

is between 0.5 and 1.0, but said that I could talk to him for input. He also

said that the level of my PSA is too small for a bone scan to detect

anything. He also said that he would not suggest hormone therapy unless the

radiation was attempted and my PSA levels were higher.  

I’ve been following

this site since I was first diagnosed, and have been reading of issues with

radiation—burns and bowel issues. I don’t want to rush into anything, but I

am concerned with the fact that my PSA has almost tripled since November of

last year.

Any advice and/or

suggestions would be appreciated.

Tks-Dennis

Dennis

J

dennisp42@...

Seffner,

FL 33584

[Guest guest]

D wrote:

> I was reading Garry Rudd’s email and it reminded me of a

> conversation I had Sunday with a friend at church. He’s a

> recently retired oncologist. I was asking his impression about

> what is happening. His comment was don’t go to the oncologist.

> It’s like going to a car dealership and asking if your car

> needs an oil change. You know they’re going to say yes. He also

> said to stop having PSA tests. He said that chances are that I

> won’t have any issues—that’s no guarantee he added, but more

> and more research is showing that PCa is being over treated. I

> look at Garry’s remark that his PSA was 2000, and how it was

> brought down with hormones, so I wonder if it will be better to

> just live my life and stop worrying about it. If I start

> showing symptoms, I can go get it checked out.

> I’ll see the oncologist tomorrow and see what he has to say.

Dennis,

I strongly disagree with your friend. Sometimes, in fact, your

car does need an oil change, and if you don't do it the engine

will sieze and be destroyed. I've seen it happen.

It is true that some doctors recommend treatment when you don't

need it. However there are also honest doctors who will tell you

the truth. I think you're much better off trying to find an

honest and competent doctor than avoiding doctors altogether.

(Surprising as it may seem, I've met some honest car mechanics

too :^)

As I recall, there is an excellent article about salvage

radiation at PCRI (the Prostate Cancer Research Institute.) See:

http://www.prostate-cancer.org/pcricms/sites/default/files/PDFs/Is13-2_p8-17.pdf

The link didn't work when I just tried it. It looks like PCRI's

server is down. But if you don't get through, try again later.

I found the article very useful.

We don't know why your surgery failed. It is possible that small

amounts of cancer were left behind in the area of the prostate.

If so, radiation may cure you. It is also possible that small

amounts have metastasized to other places in the body. In that

case, radiation can't cure you. Unfortunately, there are

currently no tests that can tell you which is the case because,

as your surgeon said, a bone scan can't detect tiny amounts of

cancer, only larger tumors.

Finally, it is also possible that your cancer is so slow growing

that it won't kill you - but that depends on how slowly it's

growing, how long you might live, and whether, if the cancer does

grow, it responds to medical treatment (mainly hormones at this

time.)

If radiation can cure you, I think there is considerable evidence

that it has the best chance when performed very early, before the

cancer has a chance to spread.

Best of luck.

Alan

[Guest guest]

Alan,

Thanks

for your reply and the link. I just printed it out and will read it.

Regarding

my friends comment. I think the point he was trying to make is exactly what you

said in the second paragraph. Sometimes you need the oil change, but some dealers

will tell you that you need it even if you just changed it.

I

went to the radiation specialist today. He’s putting me on two weeks of

antibiotics, then a PSA. I’m scheduled for a CT Simulation on the 29th,

if the PSA is still elevated. He did give me a script for a whole body bone

scan and a MRI of the pelvis. I have to schedule that. After that, we’ll see. I’m

still hoping that the Cipro will bring the PSA down, but he says that he doubts

that it will. He senses my reluctance in having this treatment.

The

treatment he uses is IMRT. He’s saying about 30 daily treatments—Monday thru

Friday, of low dose radiation over a 6 or 7 week period. He said the only issue

I might face is more frequent urination.

He

is concerned about the fact that my PSA almost tripled in less than a year. When

I asked directly if he thought this is an aggressive form, he said yes.

I’ll

know more in a couple of weeks and will report back on this group.

Again,

thanks to all that have responded.

Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Alan Meyer

Sent: Wednesday, September 15, 2010 12:33

To: ProstateCancerSupport

Subject: Re: Elevated PSA

D wrote:

> I was reading Garry Rudd’s email and it reminded me of a

> conversation I had Sunday with a friend at church. He’s a

> recently retired oncologist. I was asking his impression about

> what is happening. His comment was don’t go to the oncologist.

> It’s like going to a car dealership and asking if your car

> needs an oil change. You know they’re going to say yes. He also

> said to stop having PSA tests. He said that chances are that I

> won’t have any issues—that’s no guarantee he added, but more

> and more research is showing that PCa is being over treated. I

> look at Garry’s remark that his PSA was 2000, and how it was

> brought down with hormones, so I wonder if it will be better to

> just live my life and stop worrying about it. If I start

> showing symptoms, I can go get it checked out.

> I’ll see the oncologist tomorrow and see what he has to say.

Dennis,

I strongly disagree with your friend. Sometimes, in fact, your

car does need an oil change, and if you don't do it the engine

will sieze and be destroyed. I've seen it happen.

It is true that some doctors recommend treatment when you don't

need it. However there are also honest doctors who will tell you

the truth. I think you're much better off trying to find an

honest and competent doctor than avoiding doctors altogether.

(Surprising as it may seem, I've met some honest car mechanics

too :^)

As I recall, there is an excellent article about salvage

radiation at PCRI (the Prostate Cancer Research Institute.) See:

http://www.prostate-cancer.org/pcricms/sites/default/files/PDFs/Is13-2_p8-17.pdf

The link didn't work when I just tried it. It looks like PCRI's

server is down. But if you don't get through, try again later.

I found the article very useful.

We don't know why your surgery failed. It is possible that small

amounts of cancer were left behind in the area of the prostate.

If so, radiation may cure you. It is also possible that small

amounts have metastasized to other places in the body. In that

case, radiation can't cure you. Unfortunately, there are

currently no tests that can tell you which is the case because,

as your surgeon said, a bone scan can't detect tiny amounts of

cancer, only larger tumors.

Finally, it is also possible that your cancer is so slow growing

that it won't kill you - but that depends on how slowly it's

growing, how long you might live, and whether, if the cancer does

grow, it responds to medical treatment (mainly hormones at this

time.)

If radiation can cure you, I think there is considerable evidence

that it has the best chance when performed very early, before the

cancer has a chance to spread.

Best of luck.

Alan

[Guest guest]

D wrote:

>Alan,

>

>Thanks for your reply and the link. I just printed it out and

>will read it.

>

>Regarding my friends comment. I think the point he was trying to

>make is exactly what you said in the second paragraph. Sometimes

>you need the oil change, but some dealers will tell you that you

>need it even if you just changed it.

My comment about your friend's comment may have been too strong.

As a retired oncologist, he knows a lot more than I do.

Treatment for this disease is so poorly understood that's it's

hard to know what's right.

I don't recall how old you are, but I think if it were me, I

would be guided, in some part, by how long I expected to live.

If I thought I had a good chance of living another 20 years, I'd

want to try radiation. If I thought I'd die within 10, I might

forgo treatment. In between, well, I don't know what I'd do.

In the end it's hard to keep from making an emotional decision.

And of course none of us knows how long we'll live. We could

undergo expensive, time consuming and invasive treatments to keep

from dying 15 years from now, and then die of a heart attack next

year.

>I went to the radiation specialist today. He’s putting me on two

>weeks of antibiotics, then a PSA. I’m scheduled for a CT

>Simulation on the 29th, if the PSA is still elevated. He did

>give me a script for a whole body bone scan and a MRI of the

>pelvis. I have to schedule that. After that, we’ll see. I’m

>still hoping that the Cipro will bring the PSA down, but he says

>that he doubts that it will. He senses my reluctance in having

>this treatment.

Hmmm. I've heard of antibiotics being used to treat prostate

infections, but you don't have much of a prostate after your

surgery. I've not heard of anyone being given antibiotics to

bring PSA down _after_ a prostatectomy.

But I'm not a doctor and my second guessing isn't expert advice.

Obviously the doc doesn't expect the Cipro to work, but he's

grasping at a slender straw in the small hope that it might save

you from a more serious treatment.

>The treatment he uses is IMRT. He’s saying about 30 daily

>treatments—Monday thru Friday, of low dose radiation over a 6 or

>7 week period. He said the only issue I might face is more

>frequent urination.

I'm a little concerned about the radiation oncologist's statement

that the only issue you might face is frequent urination. Long

term, you will very likely have reduced potency - assuming you

have any left after the surgery. You may also experience some

rectal scarring and possibly other effects.

The doctor's statement that a temporary period of more frequent

urination after the treatment being the main side effect is

probably right, but I don't think it's a good idea to assume

everything will be hunky dory. Radiation, like surgery, is a

pretty invasive treatment. We hope for the best but we should

not blind ourselves to the fact that s--t sometimes happens.

>He is concerned about the fact that my PSA almost tripled in

>less than a year. When I asked directly if he thought this is

>an aggressive form, he said yes.

I don't know how well PSA increases at different points in the

disease extrapolate to the future. However, if we assume

tripling each year, we might see something like this:

Year PSA

1 .2

2 .6

3 1.8

4 5.4

5 16

6 48

7 146

Year 7 is starting to look serious, and very metastatic.

8 440

One might be experiencing symptoms by year 8.

But that's not the whole story since ADT drugs can slow the

whole process down. It might be that starting ADT somewhere

between year 3 and 6 could make a big difference in where you'd

be in years 8, 9, and 10.

Or it might be that the tripling we see now is not predictive for

the future.

>

>I’ll know more in a couple of weeks and will report back on this

>group.

>

>Again, thanks to all that have responded.

> ...

One final comment.

Radiation, like surgery, requires great expertise. If you

incline towards getting it, you don't have to get it from the

first rad onc that offers it to you.

You might ask him for a complete treatment plan: How many greys

of radiation? What targets? Will he radiate the seminal

vesicles? Will he radiate the lymph nodes? How many millimeters

around the prostate bed will be targeted? What imaging

technique will he use to locate the targets? How often will he

check the positioning, e.g., by additional x-rays, CT scan, MRI,

or whatever imaging he's planning to use?

Also, how many prostate radiations does he do in a year? Some

radiation oncologists specialize in other diseases and don't

necessarily have a lot prostate cancer experience.

Then you might find another rad onc and ask the same questions of

him for a second opinion. A good place to start might be one of

the National Cancer Institute's designated cancer centers. See:

https://cissecure.nci.nih.gov/factsheet/FactSheetSearch1_2.aspx

I said I " might " do these things. If I were really impressed

with the first guy I saw and trusted him, then I might not seek a

second opinion. Sometimes we listen to our gut, so to speak, and

do what it tells us.

Best of luck.

Alan

[Guest guest]

D wrote:

>Alan,

>

>Thanks for your reply and the link. I just printed it out and

>will read it.

>

>Regarding my friends comment. I think the point he was trying to

>make is exactly what you said in the second paragraph. Sometimes

>you need the oil change, but some dealers will tell you that you

>need it even if you just changed it.

My comment about your friend's comment may have been too strong.

As a retired oncologist, he knows a lot more than I do.

Treatment for this disease is so poorly understood that's it's

hard to know what's right.

I don't recall how old you are, but I think if it were me, I

would be guided, in some part, by how long I expected to live.

If I thought I had a good chance of living another 20 years, I'd

want to try radiation. If I thought I'd die within 10, I might

forgo treatment. In between, well, I don't know what I'd do.

In the end it's hard to keep from making an emotional decision.

And of course none of us knows how long we'll live. We could

undergo expensive, time consuming and invasive treatments to keep

from dying 15 years from now, and then die of a heart attack next

year.

>I went to the radiation specialist today. He’s putting me on two

>weeks of antibiotics, then a PSA. I’m scheduled for a CT

>Simulation on the 29th, if the PSA is still elevated. He did

>give me a script for a whole body bone scan and a MRI of the

>pelvis. I have to schedule that. After that, we’ll see. I’m

>still hoping that the Cipro will bring the PSA down, but he says

>that he doubts that it will. He senses my reluctance in having

>this treatment.

Hmmm. I've heard of antibiotics being used to treat prostate

infections, but you don't have much of a prostate after your

surgery. I've not heard of anyone being given antibiotics to

bring PSA down _after_ a prostatectomy.

But I'm not a doctor and my second guessing isn't expert advice.

Obviously the doc doesn't expect the Cipro to work, but he's

grasping at a slender straw in the small hope that it might save

you from a more serious treatment.

>The treatment he uses is IMRT. He’s saying about 30 daily

>treatments—Monday thru Friday, of low dose radiation over a 6 or

>7 week period. He said the only issue I might face is more

>frequent urination.

I'm a little concerned about the radiation oncologist's statement

that the only issue you might face is frequent urination. Long

term, you will very likely have reduced potency - assuming you

have any left after the surgery. You may also experience some

rectal scarring and possibly other effects.

The doctor's statement that a temporary period of more frequent

urination after the treatment being the main side effect is

probably right, but I don't think it's a good idea to assume

everything will be hunky dory. Radiation, like surgery, is a

pretty invasive treatment. We hope for the best but we should

not blind ourselves to the fact that s--t sometimes happens.

>He is concerned about the fact that my PSA almost tripled in

>less than a year. When I asked directly if he thought this is

>an aggressive form, he said yes.

I don't know how well PSA increases at different points in the

disease extrapolate to the future. However, if we assume

tripling each year, we might see something like this:

Year PSA

1 .2

2 .6

3 1.8

4 5.4

5 16

6 48

7 146

Year 7 is starting to look serious, and very metastatic.

8 440

One might be experiencing symptoms by year 8.

But that's not the whole story since ADT drugs can slow the

whole process down. It might be that starting ADT somewhere

between year 3 and 6 could make a big difference in where you'd

be in years 8, 9, and 10.

Or it might be that the tripling we see now is not predictive for

the future.

>

>I’ll know more in a couple of weeks and will report back on this

>group.

>

>Again, thanks to all that have responded.

> ...

One final comment.

Radiation, like surgery, requires great expertise. If you

incline towards getting it, you don't have to get it from the

first rad onc that offers it to you.

You might ask him for a complete treatment plan: How many greys

of radiation? What targets? Will he radiate the seminal

vesicles? Will he radiate the lymph nodes? How many millimeters

around the prostate bed will be targeted? What imaging

technique will he use to locate the targets? How often will he

check the positioning, e.g., by additional x-rays, CT scan, MRI,

or whatever imaging he's planning to use?

Also, how many prostate radiations does he do in a year? Some

radiation oncologists specialize in other diseases and don't

necessarily have a lot prostate cancer experience.

Then you might find another rad onc and ask the same questions of

him for a second opinion. A good place to start might be one of

the National Cancer Institute's designated cancer centers. See:

https://cissecure.nci.nih.gov/factsheet/FactSheetSearch1_2.aspx

I said I " might " do these things. If I were really impressed

with the first guy I saw and trusted him, then I might not seek a

second opinion. Sometimes we listen to our gut, so to speak, and

do what it tells us.

Best of luck.

Alan

[Guest guest]

The treatment he uses is IMRT. He’s saying about 30 daily

treatments—Monday thru Friday, of low dose radiation over a 6 or 7 week

period. He said the only issue I might face is more frequent urination.

I have some serious issues with this statement. I

know everybody is a little different and the intricacies of each therapy can

have a lot of different outcomes and side effects. I just finished 35 sessions

of IMRT and I am involved with a cancer support group. I have talked to a lot

of people who went through radiation and no one had just one “issue”.

I have a little trouble believing your doctor would say this. It might be enough

of a warning sign to make me want to talk with another radiation oncologist to

see what he has to say about your case.

While waiting my turn on the machine I was

talking with one of my techs and he mentioned at how much better RT is

now. The side effects have been reduced, but not eliminated. IMRT reduces

the effects of zapping near by organs but some of them need to be zapped or are

in the path of the beam. The most common side effect you would feel is

fatigue. This is common with just about all people going through radiation

treatments no matter where they are receiving it. Digestive disorders are

next on the list. Nausea is common but diarrhea is the biggie. Plan to go

shopping in the baby isle. Wipes and diaper rash ointments will be your

friend. Imodium and being careful in what you eat complete your arsenal of that

side effect. More frequent urination is part of it but so is painful

urination or worse unable to urinate or incontinence. Having your bladder

inflated during the treatment will help minimize some of these effects so make

sure you drink lots before each treatment. The good news most of these

side effects won’t appear until after the 2nd week. The bad

news is they will continue for 2 to 6 months after the treatments have been

completed.

With all that said IMRT is doable. The

treatments themselves you can’t feel but you laying on a hard (cold)

table with your pants down (a towel over the vitals) and the techs move you

into position on the table so you are not always in the most comfortable

position. Don’t forget you need to pee (see above) and then they tell you

not to move. I never timed mine but it was around 10 minutes. I

found bringing an iPod to listen to while the treatments are going on help to

pass the time.

No matter what your choice is I wish you

the best of luck.

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of D

Sent: Wednesday, September 15, 2010

7:13 PM

To:

ProstateCancerSupport

Subject: RE:

Elevated PSA

Alan,

Thanks for your reply and the link. I just printed it out and

will read it.

Regarding my friends comment. I think the point he was trying to

make is exactly what you said in the second paragraph. Sometimes you need the

oil change, but some dealers will tell you that you need it even if you just

changed it.

I went to the radiation specialist today. He’s putting me

on two weeks of antibiotics, then a PSA. I’m scheduled for a CT

Simulation on the 29th, if the PSA is still elevated. He did give me

a script for a whole body bone scan and a MRI of the pelvis. I have to schedule

that. After that, we’ll see. I’m still hoping that the Cipro will

bring the PSA down, but he says that he doubts that it will. He senses my

reluctance in having this treatment.

The treatment he uses is IMRT. He’s saying about 30 daily

treatments—Monday thru Friday, of low dose radiation over a 6 or 7 week

period. He said the only issue I might face is more frequent urination.

He is concerned about the fact that my PSA almost tripled in

less than a year. When I asked directly if he thought this is an aggressive

form, he said yes.

I’ll know more in a couple of weeks and will report back

on this group.

Again, thanks to all that have responded.

Dennis

Dennis J

dennisp42@...

Seffner,

FL 33584

From: ProstateCancerSupport [mailto:ProstateCancerSupport ]

On Behalf Of Alan Meyer

Sent: Wednesday, September 15,

2010 12:33

To:

ProstateCancerSupport

Subject: Re:

Elevated PSA

D

wrote:

> I was reading Garry Rudd’s email and it reminded me of a

> conversation I had Sunday with a friend at church. He’s a

> recently retired oncologist. I was asking his impression about

> what is happening. His comment was don’t go to the oncologist.

> It’s like going to a car dealership and asking if your car

> needs an oil change. You know they’re going to say yes. He also

> said to stop having PSA tests. He said that chances are that I

> won’t have any issues—that’s no guarantee he added, but

more

> and more research is showing that PCa is being over treated. I

> look at Garry’s remark that his PSA was 2000, and how it was

> brought down with hormones, so I wonder if it will be better to

> just live my life and stop worrying about it. If I start

> showing symptoms, I can go get it checked out.

> I’ll see the oncologist tomorrow and see what he has to say.

Dennis,

I strongly disagree with your friend. Sometimes, in fact, your

car does need an oil change, and if you don't do it the engine

will sieze and be destroyed. I've seen it happen.

It is true that some doctors recommend treatment when you don't

need it. However there are also honest doctors who will tell you

the truth. I think you're much better off trying to find an

honest and competent doctor than avoiding doctors altogether.

(Surprising as it may seem, I've met some honest car mechanics

too :^)

As I recall, there is an excellent article about salvage

radiation at PCRI (the Prostate Cancer Research Institute.) See:

http://www.prostate-cancer.org/pcricms/sites/default/files/PDFs/Is13-2_p8-17.pdf

The link didn't work when I just tried it. It looks like PCRI's

server is down. But if you don't get through, try again later.

I found the article very useful.

We don't know why your surgery failed. It is possible that small

amounts of cancer were left behind in the area of the prostate.

If so, radiation may cure you. It is also possible that small

amounts have metastasized to other places in the body. In that

case, radiation can't cure you. Unfortunately, there are

currently no tests that can tell you which is the case because,

as your surgeon said, a bone scan can't detect tiny amounts of

cancer, only larger tumors.

Finally, it is also possible that your cancer is so slow growing

that it won't kill you - but that depends on how slowly it's

growing, how long you might live, and whether, if the cancer does

grow, it responds to medical treatment (mainly hormones at this

time.)

If radiation can cure you, I think there is considerable evidence

that it has the best chance when performed very early, before the

cancer has a chance to spread.

Best of luck.

Alan

[Guest guest]

I would just like to point out that diarrhea is my no means a certainty as a side effect. I had mild constipation throughout my 40 IGRT sessions. Radiation Oncologist advised taking 2 tablespoons of flax seeds a day during the TX. Flax produces a mucolaginous gel in the gut which helps protect against the drying out effect radiation can have (it affects the mucous lining of your gut). I was also prescribed daily Cicatridine suppositories during TX.

Malaga, Spain

RE: Elevated PSA

The treatment he uses is IMRT. He’s saying about 30 daily treatments—Monday thru Friday, of low dose radiation over a 6 or 7 week period. He said the only issue I might face is more frequent urination.

I have some serious issues with this statement. I know everybody is a little different and the intricacies of each therapy can have a lot of different outcomes and side effects. I just finished 35 sessions of IMRT and I am involved with a cancer support group. I have talked to a lot of people who went through radiation and no one had just one “issue”. I have a little trouble believing your doctor would say this. It might be enough of a warning sign to make me want to talk with another radiation oncologist to see what he has to say about your case.

While waiting my turn on the machine I was talking with one of my techs and he mentioned at how much better RT is now. The side effects have been reduced, but not eliminated. IMRT reduces the effects of zapping near by organs but some of them need to be zapped or are in the path of the beam. The most common side effect you would feel is fatigue. This is common with just about all people going through radiation treatments no matter where they are receiving it. Digestive disorders are next on the list. Nausea is common but diarrhea is the biggie. Plan to go shopping in the baby isle. Wipes and diaper rash ointments will be your friend. Imodium and being careful in what you eat complete your arsenal of that side effect. More frequent urination is part of it but so is painful urination or worse unable to urinate or incontinence. Having your bladder inflated during the treatment will help minimize some of these effects so make sure you drink lots before each treatment. The good news most of these side effects won’t appear until after the 2nd week. The bad news is they will continue for 2 to 6 months after the treatments have been completed.

With all that said IMRT is doable. The treatments themselves you can’t feel but you laying on a hard (cold) table with your pants down (a towel over the vitals) and the techs move you into position on the table so you are not always in the most comfortable position. Don’t forget you need to pee (see above) and then they tell you not to move. I never timed mine but it was around 10 minutes. I found bringing an iPod to listen to while the treatments are going on help to pass the time.

No matter what your choice is I wish you the best of luck.

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of D Sent: Wednesday, September 15, 2010 7:13 PMTo: ProstateCancerSupport Subject: RE: Elevated PSA

Alan,

Thanks for your reply and the link. I just printed it out and will read it.

Regarding my friends comment. I think the point he was trying to make is exactly what you said in the second paragraph. Sometimes you need the oil change, but some dealers will tell you that you need it even if you just changed it.

I went to the radiation specialist today. He’s putting me on two weeks of antibiotics, then a PSA. I’m scheduled for a CT Simulation on the 29th, if the PSA is still elevated. He did give me a script for a whole body bone scan and a MRI of the pelvis. I have to schedule that. After that, we’ll see. I’m still hoping that the Cipro will bring the PSA down, but he says that he doubts that it will. He senses my reluctance in having this treatment.

The treatment he uses is IMRT. He’s saying about 30 daily treatments—Monday thru Friday, of low dose radiation over a 6 or 7 week period. He said the only issue I might face is more frequent urination.

He is concerned about the fact that my PSA almost tripled in less than a year. When I asked directly if he thought this is an aggressive form, he said yes.

I’ll know more in a couple of weeks and will report back on this group.

Again, thanks to all that have responded.

Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan MeyerSent: Wednesday, September 15, 2010 12:33To: ProstateCancerSupport Subject: Re: Elevated PSA

D wrote:> I was reading Garry Rudd’s email and it reminded me of a> conversation I had Sunday with a friend at church. He’s a> recently retired oncologist. I was asking his impression about> what is happening. His comment was don’t go to the oncologist.> It’s like going to a car dealership and asking if your car> needs an oil change. You know they’re going to say yes. He also> said to stop having PSA tests. He said that chances are that I> won’t have any issues—that’s no guarantee he added, but more> and more research is showing that PCa is being over treated. I> look at Garry’s remark that his PSA was 2000, and how it was> brought down with hormones, so I wonder if it will be better to> just live my life and stop worrying about it. If I start> showing symptoms, I can go get it checked out.> I’ll see the oncologist tomorrow and see what he has to say.Dennis,I strongly disagree with your friend. Sometimes, in fact, yourcar does need an oil change, and if you don't do it the enginewill sieze and be destroyed. I've seen it happen.It is true that some doctors recommend treatment when you don'tneed it. However there are also honest doctors who will tell youthe truth. I think you're much better off trying to find anhonest and competent doctor than avoiding doctors altogether.(Surprising as it may seem, I've met some honest car mechanicstoo :^)As I recall, there is an excellent article about salvageradiation at PCRI (the Prostate Cancer Research Institute.) See:http://www.prostate-cancer.org/pcricms/sites/default/files/PDFs/Is13-2_p8-17.pdfThe link didn't work when I just tried it. It looks like PCRI'sserver is down. But if you don't get through, try again later.I found the article very useful.We don't know why your surgery failed. It is possible that smallamounts of cancer were left behind in the area of the prostate.If so, radiation may cure you. It is also possible that smallamounts have metastasized to other places in the body. In thatcase, radiation can't cure you. Unfortunately, there arecurrently no tests that can tell you which is the case because,as your surgeon said, a bone scan can't detect tiny amounts ofcancer, only larger tumors.Finally, it is also possible that your cancer is so slow growingthat it won't kill you - but that depends on how slowly it'sgrowing, how long you might live, and whether, if the cancer doesgrow, it responds to medical treatment (mainly hormones at thistime.)If radiation can cure you, I think there is considerable evidencethat it has the best chance when performed very early, before thecancer has a chance to spread.Best of luck.Alan

[Guest guest]

I would just like to point out that diarrhea is my no means a certainty as a side effect. I had mild constipation throughout my 40 IGRT sessions. Radiation Oncologist advised taking 2 tablespoons of flax seeds a day during the TX. Flax produces a mucolaginous gel in the gut which helps protect against the drying out effect radiation can have (it affects the mucous lining of your gut). I was also prescribed daily Cicatridine suppositories during TX.

Malaga, Spain

RE: Elevated PSA

The treatment he uses is IMRT. He’s saying about 30 daily treatments—Monday thru Friday, of low dose radiation over a 6 or 7 week period. He said the only issue I might face is more frequent urination.

I have some serious issues with this statement. I know everybody is a little different and the intricacies of each therapy can have a lot of different outcomes and side effects. I just finished 35 sessions of IMRT and I am involved with a cancer support group. I have talked to a lot of people who went through radiation and no one had just one “issue”. I have a little trouble believing your doctor would say this. It might be enough of a warning sign to make me want to talk with another radiation oncologist to see what he has to say about your case.

While waiting my turn on the machine I was talking with one of my techs and he mentioned at how much better RT is now. The side effects have been reduced, but not eliminated. IMRT reduces the effects of zapping near by organs but some of them need to be zapped or are in the path of the beam. The most common side effect you would feel is fatigue. This is common with just about all people going through radiation treatments no matter where they are receiving it. Digestive disorders are next on the list. Nausea is common but diarrhea is the biggie. Plan to go shopping in the baby isle. Wipes and diaper rash ointments will be your friend. Imodium and being careful in what you eat complete your arsenal of that side effect. More frequent urination is part of it but so is painful urination or worse unable to urinate or incontinence. Having your bladder inflated during the treatment will help minimize some of these effects so make sure you drink lots before each treatment. The good news most of these side effects won’t appear until after the 2nd week. The bad news is they will continue for 2 to 6 months after the treatments have been completed.

With all that said IMRT is doable. The treatments themselves you can’t feel but you laying on a hard (cold) table with your pants down (a towel over the vitals) and the techs move you into position on the table so you are not always in the most comfortable position. Don’t forget you need to pee (see above) and then they tell you not to move. I never timed mine but it was around 10 minutes. I found bringing an iPod to listen to while the treatments are going on help to pass the time.

No matter what your choice is I wish you the best of luck.

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of D Sent: Wednesday, September 15, 2010 7:13 PMTo: ProstateCancerSupport Subject: RE: Elevated PSA

Alan,

Thanks for your reply and the link. I just printed it out and will read it.

Regarding my friends comment. I think the point he was trying to make is exactly what you said in the second paragraph. Sometimes you need the oil change, but some dealers will tell you that you need it even if you just changed it.

I went to the radiation specialist today. He’s putting me on two weeks of antibiotics, then a PSA. I’m scheduled for a CT Simulation on the 29th, if the PSA is still elevated. He did give me a script for a whole body bone scan and a MRI of the pelvis. I have to schedule that. After that, we’ll see. I’m still hoping that the Cipro will bring the PSA down, but he says that he doubts that it will. He senses my reluctance in having this treatment.

The treatment he uses is IMRT. He’s saying about 30 daily treatments—Monday thru Friday, of low dose radiation over a 6 or 7 week period. He said the only issue I might face is more frequent urination.

He is concerned about the fact that my PSA almost tripled in less than a year. When I asked directly if he thought this is an aggressive form, he said yes.

I’ll know more in a couple of weeks and will report back on this group.

Again, thanks to all that have responded.

Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan MeyerSent: Wednesday, September 15, 2010 12:33To: ProstateCancerSupport Subject: Re: Elevated PSA

D wrote:> I was reading Garry Rudd’s email and it reminded me of a> conversation I had Sunday with a friend at church. He’s a> recently retired oncologist. I was asking his impression about> what is happening. His comment was don’t go to the oncologist.> It’s like going to a car dealership and asking if your car> needs an oil change. You know they’re going to say yes. He also> said to stop having PSA tests. He said that chances are that I> won’t have any issues—that’s no guarantee he added, but more> and more research is showing that PCa is being over treated. I> look at Garry’s remark that his PSA was 2000, and how it was> brought down with hormones, so I wonder if it will be better to> just live my life and stop worrying about it. If I start> showing symptoms, I can go get it checked out.> I’ll see the oncologist tomorrow and see what he has to say.Dennis,I strongly disagree with your friend. Sometimes, in fact, yourcar does need an oil change, and if you don't do it the enginewill sieze and be destroyed. I've seen it happen.It is true that some doctors recommend treatment when you don'tneed it. However there are also honest doctors who will tell youthe truth. I think you're much better off trying to find anhonest and competent doctor than avoiding doctors altogether.(Surprising as it may seem, I've met some honest car mechanicstoo :^)As I recall, there is an excellent article about salvageradiation at PCRI (the Prostate Cancer Research Institute.) See:http://www.prostate-cancer.org/pcricms/sites/default/files/PDFs/Is13-2_p8-17.pdfThe link didn't work when I just tried it. It looks like PCRI'sserver is down. But if you don't get through, try again later.I found the article very useful.We don't know why your surgery failed. It is possible that smallamounts of cancer were left behind in the area of the prostate.If so, radiation may cure you. It is also possible that smallamounts have metastasized to other places in the body. In thatcase, radiation can't cure you. Unfortunately, there arecurrently no tests that can tell you which is the case because,as your surgeon said, a bone scan can't detect tiny amounts ofcancer, only larger tumors.Finally, it is also possible that your cancer is so slow growingthat it won't kill you - but that depends on how slowly it'sgrowing, how long you might live, and whether, if the cancer doesgrow, it responds to medical treatment (mainly hormones at thistime.)If radiation can cure you, I think there is considerable evidencethat it has the best chance when performed very early, before thecancer has a chance to spread.Best of luck.Alan

[Guest guest]

Alan,

thanks again for your response. It is good to be able to discuss this with

someone that has been through it, and to receive the feedback.

Dennis

Answers

below in text…..

Dennis J

dennisp42@...

Seffner, FL 33584

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Alan Meyer

Sent: Wednesday, September 15, 2010 21:03

To: ProstateCancerSupport

Subject: Re: Elevated PSA

D wrote:

>Alan,

>

>Thanks for your reply and the link. I just printed it out and

>will read it.

>

>Regarding my friends comment. I think the point he was trying to

>make is exactly what you said in the second paragraph. Sometimes

>you need the oil change, but some dealers will tell you that you

>need it even if you just changed it.

My comment about your friend's comment may have been too strong.

As a retired oncologist, he knows a lot more than I do.

Treatment for this disease is so poorly understood that's it's

hard to know what's right.

I don't recall how old you are, but I think if it were me, I

would be guided, in some part, by how long I expected to live.

If I thought I had a good chance of living another 20 years, I'd

want to try radiation. If I thought I'd die within 10, I might

forgo treatment. In between, well, I don't know what I'd do.

In the end it's hard to keep from making an emotional decision.

And of course none of us knows how long we'll live. We could

undergo expensive, time consuming and invasive treatments to keep

from dying 15 years from now, and then die of a heart attack next

year.

[D  ] Alan, I’m turning 62 in January. I think that my

being unable to decide on whether to treat or not has to do with how long I’ll

live. I do have diabetes, but it is treated and gives no problem with a pill. I’m

on heart preventative, mainly because of heart issues in my family and the

diabetes, however it is also under control and my blood pressure is normal, and

all tests have been normal. If I thought the radiation would give me another 20

years, then I think it might be worth doing, but with the other issues I have,

and family history, I’m not sure.

The other issue is the quality of life. If I’m going to spend

the rest of my life with a burned rectum, impotent and incontinent, is that worth

it?

>I went to the radiation specialist today. He’s putting me on two

>weeks of antibiotics, then a PSA. I’m scheduled for a CT

>Simulation on the 29th, if the PSA is still elevated. He did

>give me a script for a whole body bone scan and a MRI of the

>pelvis. I have to schedule that. After that, we’ll see. I’m

>still hoping that the Cipro will bring the PSA down, but he says

>that he doubts that it will. He senses my reluctance in having

>this treatment.

Hmmm. I've heard of antibiotics being used to treat prostate

infections, but you don't have much of a prostate after your

surgery. I've not heard of anyone being given antibiotics to

bring PSA down _after_ a prostatectomy.

But I'm not a doctor and my second guessing isn't expert advice.

Obviously the doc doesn't expect the Cipro to work, but he's

grasping at a slender straw in the small hope that it might save

you from a more serious treatment.

[D  ] The doctor said that in some cases the PSA can be

elevated because there is an infection in whatever prostate is left. He said he

is giving me the cipro basically to address my concerns that this might not be

caused by a reoccurrence of the cancer.

>The treatment he uses is IMRT. He’s saying about 30 daily

>treatments—Monday thru Friday, of low dose radiation over a 6 or

>7 week period. He said the only issue I might face is more

>frequent urination.

I'm a little concerned about the radiation oncologist's statement

that the only issue you might face is frequent urination. Long

term, you will very likely have reduced potency - assuming you

have any left after the surgery. You may also experience some

rectal scarring and possibly other effects.

[D  ] I already am impotent from the surgery. I don’t see

that coming back. My urologist suggested shots for that, but the oncologist

wants me to hold off on that until this is over. He did say there will be

increased urination and a mild case of diarrhea. He did say that this should go

away in a matter of months. I noticed that Larry, in his reply, stated the

diarrhea is a major issue. The rectal scarring is a serious concern.

The doctor's statement that a temporary period of more frequent

urination after the treatment being the main side effect is

probably right, but I don't think it's a good idea to assume

everything will be hunky dory. Radiation, like surgery, is a

pretty invasive treatment. We hope for the best but we should

not blind ourselves to the fact that s--t sometimes happens.

[D  ] The fact that s—t sometimes happens is a major concern.

I had surgery because I figured that taking out the prostate would resolve my

problem. The fact that it has come back strongly and quickly, makes me wonder

if this is what will continue. If it came back so quick, might I have issues

with radiation. Reading the link you sent, if cells escaped from that prostate

could they be in the bone and this treatment would be a non-issue. The doctor

gave me a prescription for a bone scan and MRI. I’m trying to get those

scheduled, and will have to call BCBS to see where I can go. I couldn’t find an

approved site in my area for some reason. I know there are several, but no

names came up. I’ll probably have to call them.

>He is concerned about the fact that my PSA almost tripled in

>less than a year. When I asked directly if he thought this is

>an aggressive form, he said yes.

I don't know how well PSA increases at different points in the

disease extrapolate to the future. However, if we assume

tripling each year, we might see something like this:

Year PSA

1 .2

2 .6

3 1.8

4 5.4

5 16

6 48

7 146

Year 7 is starting to look serious, and very metastatic.

8 440

One might be experiencing symptoms by year 8.

[D  ] The fact that my PSA tripled in a year is another of

my major concerns. The doctor also stated this. He said that the fact that it

tripled shows that this might be an aggressive form.

But that's not the whole story since ADT drugs can slow the

whole process down. It might be that starting ADT somewhere

between year 3 and 6 could make a big difference in where you'd

be in years 8, 9, and 10.

Or it might be that the tripling we see now is not predictive for

the future.

>

>I’ll know more in a couple of weeks and will report back on this

>group.

>

>Again, thanks to all that have responded.

> ...

One final comment.

Radiation, like surgery, requires great expertise. If you

incline towards getting it, you don't have to get it from the

first rad onc that offers it to you.

You might ask him for a complete treatment plan: How many greys

of radiation? What targets? Will he radiate the seminal

vesicles? Will he radiate the lymph nodes? How many millimeters

around the prostate bed will be targeted? What imaging

technique will he use to locate the targets? How often will he

check the positioning, e.g., by additional x-rays, CT scan, MRI,

or whatever imaging he's planning to use?

[D  ] I’m going on the 29th for testing. They

are to take the measurements at that point and work up a procedure that the

doctor will present to me that should give me this information. This doctor

comes highly recommended. I trust him and what he is saying. I like the fact

that he doesn’t beat around the bush with his answers and is very direct.

Also, how many prostate radiations does he do in a year? Some

radiation oncologists specialize in other diseases and don't

necessarily have a lot prostate cancer experience.

Then you might find another rad onc and ask the same questions of

him for a second opinion. A good place to start might be one of

the National Cancer Institute's designated cancer centers. See:

https://cissecure.nci.nih.gov/factsheet/FactSheetSearch1_2.aspx

[D  ] I went to this link. In Florida, Moffit is listed.

This doctor lists Moffit as one of the hospitals he works with.

I said I " might " do these things. If I were really impressed

with the first guy I saw and trusted him, then I might not seek a

second opinion. Sometimes we listen to our gut, so to speak, and

do what it tells us.

Best of luck.

Alan

[Guest guest]

Hi

Larry,

Some

of the points you made were also made by the doctor. They slipped my mind until

you mentioned them. He did mention the diarrhea and fatigue, but he said that

the diarrhea wouldn’t be bad. I don’t recall him mentioning the

digestive issues or nausea. He might have, but I think I had “shell shock”

from what I was hearing. I’m glad my wife was with me. She was able to

ask some questions that I wasn’t in a frame of mind to think of.

Thanks

for the response and information. All this has been very helpful.

Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Larry Helber

Sent: Thursday, September 16, 2010 01:59

To: ProstateCancerSupport

Subject: RE: Elevated PSA

The treatment he uses is IMRT. He’s saying about 30

daily treatments—Monday thru Friday, of low dose radiation over a 6 or 7

week period. He said the only issue I might face is more frequent urination.

I have some serious

issues with this statement. I know everybody is a little different and

the intricacies of each therapy can have a lot of different outcomes and side

effects. I just finished 35 sessions of IMRT and I am involved with a cancer

support group. I have talked to a lot of people who went through radiation and

no one had just one “issue”. I have a little trouble

believing your doctor would say this. It might be enough of a warning sign to

make me want to talk with another radiation oncologist to see what he has to

say about your case.

While

waiting my turn on the machine I was talking with one of my techs and he

mentioned at how much better RT is now. The side effects have been

reduced, but not eliminated. IMRT reduces the effects of zapping near by organs

but some of them need to be zapped or are in the path of the beam. The

most common side effect you would feel is fatigue. This is common with

just about all people going through radiation treatments no matter where they

are receiving it. Digestive disorders are next on the list. Nausea is

common but diarrhea is the biggie. Plan to go shopping in the baby isle.

Wipes and diaper rash ointments will be your friend. Imodium and being

careful in what you eat complete your arsenal of that side effect. More

frequent urination is part of it but so is painful urination or worse unable to

urinate or incontinence. Having your bladder inflated during the treatment will

help minimize some of these effects so make sure you drink lots before each

treatment. The good news most of these side effects won’t appear

until after the 2nd week. The bad news is they will continue

for 2 to 6 months after the treatments have been completed.

With all

that said IMRT is doable. The treatments themselves you can’t feel but

you laying on a hard (cold) table with your pants down (a towel over the

vitals) and the techs move you into position on the table so you are not always

in the most comfortable position. Don’t forget you need to pee (see

above) and then they tell you not to move. I never timed mine but it was

around 10 minutes. I found bringing an iPod to listen to while the

treatments are going on help to pass the time.

No matter

what your choice is I wish you the best of luck.

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of D

Sent: Wednesday, September 15, 2010 7:13 PM

To: ProstateCancerSupport

Subject: RE: Elevated PSA

Alan,

Thanks for your reply and the link. I just printed it out

and will read it.

Regarding my friends comment. I think the point he was

trying to make is exactly what you said in the second paragraph. Sometimes you

need the oil change, but some dealers will tell you that you need it even if

you just changed it.

I went to the radiation specialist today. He’s

putting me on two weeks of antibiotics, then a PSA. I’m scheduled for a

CT Simulation on the 29th, if the PSA is still elevated. He did give

me a script for a whole body bone scan and a MRI of the pelvis. I have to

schedule that. After that, we’ll see. I’m still hoping that the

Cipro will bring the PSA down, but he says that he doubts that it will. He

senses my reluctance in having this treatment.

The treatment he uses is IMRT. He’s saying about 30

daily treatments—Monday thru Friday, of low dose radiation over a 6 or 7

week period. He said the only issue I might face is more frequent urination.

He is concerned about the fact that my PSA almost tripled

in less than a year. When I asked directly if he thought this is an aggressive

form, he said yes.

I’ll know more in a couple of weeks and will report

back on this group.

Again, thanks to all that have responded.

Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Alan Meyer

Sent: Wednesday, September 15, 2010 12:33

To: ProstateCancerSupport

Subject: Re: Elevated PSA

D

wrote:

> I was reading Garry Rudd’s email and it reminded me of a

> conversation I had Sunday with a friend at church. He’s a

> recently retired oncologist. I was asking his impression about

> what is happening. His comment was don’t go to the oncologist.

> It’s like going to a car dealership and asking if your car

> needs an oil change. You know they’re going to say yes. He also

> said to stop having PSA tests. He said that chances are that I

> won’t have any issues—that’s no guarantee he added, but

more

> and more research is showing that PCa is being over treated. I

> look at Garry’s remark that his PSA was 2000, and how it was

> brought down with hormones, so I wonder if it will be better to

> just live my life and stop worrying about it. If I start

> showing symptoms, I can go get it checked out.

> I’ll see the oncologist tomorrow and see what he has to say.

Dennis,

I strongly disagree with your friend. Sometimes, in fact, your

car does need an oil change, and if you don't do it the engine

will sieze and be destroyed. I've seen it happen.

It is true that some doctors recommend treatment when you don't

need it. However there are also honest doctors who will tell you

the truth. I think you're much better off trying to find an

honest and competent doctor than avoiding doctors altogether.

(Surprising as it may seem, I've met some honest car mechanics

too :^)

As I recall, there is an excellent article about salvage

radiation at PCRI (the Prostate Cancer Research Institute.) See:

http://www.prostate-cancer.org/pcricms/sites/default/files/PDFs/Is13-2_p8-17.pdf

The link didn't work when I just tried it. It looks like PCRI's

server is down. But if you don't get through, try again later.

I found the article very useful.

We don't know why your surgery failed. It is possible that small

amounts of cancer were left behind in the area of the prostate.

If so, radiation may cure you. It is also possible that small

amounts have metastasized to other places in the body. In that

case, radiation can't cure you. Unfortunately, there are

currently no tests that can tell you which is the case because,

as your surgeon said, a bone scan can't detect tiny amounts of

cancer, only larger tumors.

Finally, it is also possible that your cancer is so slow growing

that it won't kill you - but that depends on how slowly it's

growing, how long you might live, and whether, if the cancer does

grow, it responds to medical treatment (mainly hormones at this

time.)

If radiation can cure you, I think there is considerable evidence

that it has the best chance when performed very early, before the

cancer has a chance to spread.

Best of luck.

Alan

[Guest guest]

Dennis,

If you haven't already done so, I recommend you visit the very excellent website

run by our own Terry Herbert and have a look at the experiences of the men

there.

See: http://www.yananow.net/Experiences.html

When you reach the page, search for " EBRT " . You'll see links to stories from a

large number of men who have experienced external beam radiation.

It's hard to generalize from what you read there because different men had

different experiences, but you'll see something of the range of experience.

My own experience was relatively benign. I had HDR brachytherapy plus Lupron

plus EBRT almost 7 years ago. I have rectal scarring, visible on a proctoscope,

but it doesn't give me any problems. My most significant short term side effect

was frequent urination, getting up as many as 6-7 times a night and taking about

5 months to return to normal. My most significant longer term side effects (so

far anyway) are reduced potency and some Peyronie's disease. I can still have

sex without penetration (perfectly satisfying too), but real penetration

requires a really lucky day and some help from Viagra. However, knock on wood,

my disease has not returned. I have high hopes of dying of a graceful heart

attack :^)

I guess the key question for you now is, what are the chances that radiation

will cure you.

The theory says that if you had no positive margins, then the cancer causing

your recurrence is not likely in the prostate bed but outside it. However it's

always possible that the surgeon or the pathologist were wrong about your

margins, or that the cancer is in the lymph nodes or seminal vesicles - places

that (I think) are within reach of radiation and are common places for the

cancer to spread first.

Best of luck.

Alan

[Guest guest]

Dennis,It is good that so many people have responded to your question, but it does make it hard to follow all the answers.  If I was successful in following the comments I think that the over all opinion you have received is that you should delay the radiation.  If this is not your conclusion just ignore what I have to say.

Radiation post surgery can still totally resolve the problem, but for any shot to accomplish this you MUST have the radiation ASAP.  At the PCRI conference 3 years ago there was a number of presentations that pounded home the belief that at the time of a recurrence (3 PSA rises post surgery which you have now had) in order to contain the cancer radiation must be used prior to obtaining a PSA of 1.0. 

Although many of the answers were trying to help, salvage  radiation post failed surgery is different than radiation as a primary treatment.  Since there is no way of knowing where the cancer cells that have remained are hiding, salvage radiation targets the  broader area of the prostate bed. 

Personally, I would not wait.  The sooner you have the radiation treatments the better chance you have of stopping the little buggers. 

Since you do have recurrent prostate cancer I would also suggest that you enlist the care of a medical oncologist who works with prostate cancer.  Urologist are great, but in most cases their knowledge and experiences in dealing with advanced disease is more limited than you want. 

You should also join the advanced prostate cancer support group at: 

http://health.groups.yahoo.com/group/advancedprostatecancer/joinStop in at the advanced prostate cancer blog and search for articles that speak to your situation (www.advancedprostatecancer.net)

 

Seeking

advice and information-

 

In

5/09 I was diagnosed with PCa. I was 60 years old at the time of diagnosis, and

will turn 62 in January. The biopsy indicated that there were 2 of 12 samples

with cancer, on the right side of the prostate. My Gleason Score was 6 (3+3). One

block was <5% and the other was approximately 15%. I had robotic surgery in

August of ’09. The doctor said that the cancer was contained within the

prostate. He sampled the lymph nodes and did not find anything. The pathology

came back with a Gleason Score of 7 (3+4). I had a follow-up in 11/09 and had  a

PSA of 0.11, in 2/10 the PSA was 0.19, and I went back today and it was 0.3. I

have another appointment in March to see where my level is.

 

My

doctor suggested that I schedule an appt. with a radiologist, which is

scheduled for the 19th of this month. He said that usually the

radiologist won’t treat until the PSA is between 0.5 and 1.0, but said

that I could talk to him for input. He also said that the level of my PSA is

too small for a bone scan to detect anything. He also said that he would not

suggest hormone therapy unless the radiation was attempted and my PSA levels

were higher.

 

I’ve

been following this site since I was first diagnosed, and have been reading of

issues with radiation—burns and bowel issues. I don’t want to rush

into anything, but I am concerned with the fact that my PSA has almost tripled

since November of last year.

 

Any

advice and/or suggestions would be appreciated.

 

Tks-Dennis

 

Dennis J

dennisp42@...

Seffner, FL 33584

-- T Nowak, MA, MSWDirector for Advocacy and  Advanced Prostate Cancer Programs, Malecare Inc. Men Fighting Cancer, TogetherSurvivor - Recurrent Prostate, Thyroid, Melanoma and Renal Cancers

www.advancedprostatecancer.net - A blog about advanced and recurrent prostate cancerwww.malecare.com - information and support about prostate cancer

http://health.groups.yahoo.com/group/advancedprostatecancer/ - an online support group for men and their families diagnosed with advanced and recurrent prostate cancer

[Guest guest]

Larry Helber wrote:

> I agree with that you should not wait too long to get the

> radiation. Studies have shown that the soon you get the

> treatments the better the chances of positive outcomes. Once

> the cancer escapes the pelvic bed there is nothing the doctors

> can do for a " cure " .

....

I'm no expert and I really don't know what you should do but, as

far as I know, Larry and are correct. I seem to remember

reading an article abstract once, I can't remember the citation,

that said that the highest success rates for salvage radiation

occur when the PSA is under 0.4, and they get much worse when the

PSA is above 1.0.

Now having said that, I'll qualify it by saying that the same

article was reporting something like 45% success rates when the

PSA is under 0.4. So your chances of success probably make it

worth taking a shot, but you may still not succeed. If I

understood the article I cited earlier from PCRI, your odds are

better if you had positive margins because that constitutes

evidence that there is cancer in the prostate bed, and worse if

you had negative margins, because the cancer is more likely to be

distant.

I should think that if you do take a shot at radiation, it's

better to do it sooner rather than later. It's better to get a

really good radiation oncologist who is experienced, who knows

whether and why he's going to treat seminal vesicles and lymph

nodes (or exactly why not if he isn't going to do that - a reason

like, " I don't usually do that " is not a reason), who has dosage

and targeting planned based on the latest research, who has good

equipment, and who appears to be on top of the problem.

....

> Don’t’ dwell too much on the side effects of the radiation

> treatments. For the most part they will only be around a

> couple of months and then fade away.

....

I think Larry is also right about side effects. I will add that

the danger of side effects, as well as the effectiveness of the

treatment, is strongly related to the experience and skill of the

rad onc and his staff. The rad onc himself won't administer the

radiation. He'll plan it, but his technicians will do the actual

zapping. It's important that they be careful, experienced,

conscientious people who are committed to doing a good job, even

when the waiting room is full of people or they're tired or

hungry or have sick children at home or whatever.

Bad things can and sometimes do happen. But if you are treated

at a good place by good people, the odds for manageable side

effects are in your favor.

Best of luck.

Alan