Introduction

[Guest guest]

Hi Georgia,

My name is . Welcome to the family. Everyone here is great and full of helpfull information. I was diagnosed with lupus about 15 years ago and have been enjoying the rollercoaster ride ever since. (not). I live in NY. My aunt lives in Sacramento. I've only been to CA once and I loved it!

Ihope you're feeling better soon. Please take time to rest!

[Guest guest]

MM, we must live fairly close. I am in Los Banos,

California, near Merced. I think we are about 2 hours

from San Francisco. Thanks for your support. I can

sure use it right now. So far, I just have the

fibromyalgia, arthritis, and compressed dics in my

neck. Also, I get rashes on my arms, heart valve

disease, asthma. My son died of type l diabetes at

the age of 19. My healthy daughter(a kindergarten

teacher) is having her first baby in April, so got to

learn all that I can to sort all this out before then.

It is a very new feeling knowing that something

different could happen with this disease at any time.

I feel so out of control, (and I am a control freak)

I think it would be easier just having one disease and

coping with it instead of the worry for something

else to happen. Georgia

--- minniemyno@... wrote:

---------------------------------

Georgia, Welcome. Where do you live? There must be

more than one

rheumatologist

near you. Maybe not, though, since I don't know your

location. However, I

would be

very careful about taking any herbal remedies, or

vitamins, except for a good

one-a-

day with calcium. For information about treatments,

symptoms, and how to

talk to

the doctors, go to the main board and click on the

sites listed at the bottom

of the

page. You will find lots of articles there, and can

get a lot of answers to

your questions. As far as medications are concerned,

every Lupus patient

presents in a

unique way. Many of us share a similarity of

symptoms, especially rashes, sun

sensitivity, fatigue and pain, but how those things

manifest themselves can

differ

greatly from patient to patient. That is one of the

major reasons that Lupus

is so

difficult to diagnose.

It really helps to write to the group often, as a way

to gain information,

vent our

frustrations with this disease, share a laugh, cry a

little, whine (with or

without

cheese to go with it), and sometimes just be silly.

We are here so that all

of us can

go to a place where we are understood, accepted, and

believed. We all know

what it

is to seek help, some of us for years, and to be told

it is all in our heads.

That is

the number one pet peeve among Lupus patients, I

think. So, again, welcome,

ask

away, and if one member doesn't have an answer,

another may. Someone will

know

where to look, at least.

Oh, by the way, I live in no. California, about 50

miles from San Francisco.

I am the

adoptive, single mother of four, grandmother of two,

soon to be 54 years

young.

I have SLE, Rheumatoid Arthritis, Sjogren's,

Fibromyalgia, Lyme Disease, and

Diabetes

(non insulin dependent). I have had symptoms since I

was ten years old.

Kinda a scary, huh? Hugs, MM aka: Mike, one of

the moderators

[Guest guest]

Georgia, Glad to meet you! I am 34 and diagnosed with fibromyalgia, My sister

has lupus. I will say that for me, when I try to push and push to get things

done, It can quarantee a flare up. On days when it's okay to do so, I will

change appointments or cancel an unnessesary one and slow down a bit. Lately

with our daughters surgery, we were not able to do that so I have a couple of

flares this past week and then yesterday and today. If you are in a position

to slow down when you need to, I would go for it.

a c

[Guest guest]

Bren, Welcome to the group. I have four adopted kids and two grandchildren.

I live

in No. Calif. about 50 miles from San Francisco. I am 54, and have been dx'd

with

SLE, RA, Sjogren's, Fibromyalgia, Lyme Disease (contracted years ago and went

un-dx'd for six years, so it is chronic and flares like the others),

non-insulin dependent

diabetes. All of these were discovered or suspected from age 30- 45, but,

really, I

started having weird symptoms when I was about ten years old. Long time to

wait

for a dx, but " it was all in my head " for years. LOL

One of our founding moderators, in Florida, re-posted a little Lupies

Prayer

that our owner, Deanna is also fond of quoting: " Lord, grant me the serenity

to accept

the things I cannot change, the courage to change the things I can, and the

wisdom

to know where to bury the bodies of the doctors I shot because they told me

it was

all in my head. " So, you see, we've been there/done that. In spades.

Again, welcome, and do keep writing to the group. It helps relieve the

frustration,

fear, isolation, and is a good place to go for answers to questions you may

have. You

will find the people, here, to be intelligent, well informed, eager to share,

very caring, funny, and supportive. We, unlike people who do not have this

disease, have

the experiences to understand, and the patience to listen and commiserate.

So, moan,

groan, cry, laugh, even whine (we offer cheese with that), we are here 24/7.

Since we have members around the world, there is almost always somebody

online. Weekends can get slow sometimes, but not often. So, write away, and

keep us posted

on what you find out. Hugs, MM aka: Mike, one of the moderators

[Guest guest]

Bren, I have been there... done that. I pray that your doctor, will be wrong... I it is so hard to try to work and deal with Lupus. I know that I ended up having to stop working. I really miss my job but there is no way I could work... I have a hard time just folding the laundry. But I have lupus, fibromylagia, RA, Burstis and TMJ.

I did work for almost 13 years after I was dxs. Sorry Idid not mean for this to be a long note.... I'll be praying for you... Carol

introduction

i hope i'm sending this to the right address, so here goes.i just turned 40 in September. i've been divorced for two years and i have 9 kids(7 biological, 2 adopted). i live approximately 1 block from my ex and 5 of the kids live with me, 4 with him. We try to keep the kids with at least one parent most of the time, so we try and balance our work schedules accordingly. The kids chose the house they would live in and they spend the night with the other parent as much as they like, provided it's not a school night. Whew! Makes me tired. lol i have been engaged to a wonderful man for 5 months now. He is very loving and supportive and crazy about the kids.In the last year, i have had several things that i have asked for medical opinions on, but never at the same time. i went and saw the eye doctor about some visual disturbances. i work for a physicians office and he has helped me try and treat rashes for about 6 months now. The rashes have not responded to anything we've tried and they seem to come and go at their own choosing(mostly come). i have had shoulder pain, neck pain, knee pain and lower back pain. We've tried anti-inflammatory drugs and pain killers. i also have had headaches about 95% of waking hours. i really am not a complainer, so even though he was starting to think that arthritis might be a possibility, he wasn't hearing about all of the symptoms, or hearing about them every time they happened.This last Tuesday, i was a mess. i woke up after feeing like i slept on the edge of awake all night. i had a horrible headache, felt achy, feverish, both main rashes were back with a vengeance, my IBS was rampant, my right eye was twitching almost constantly, i had numbness on the left side of my head, and tingling at the back. i had a presentation to do at my daughter's school and after completing it i went to work. The physician that i work for took one look at me and asked what was going on. We sat and had a long chat and i revealed all the symptoms and my concerns. i was secretly becoming scared that it could be something like MS or ALS.After chatting, he said he suspected Lupus. That had not occurred to me. He suggested blood work, but i said that i could not afford it since i'm not insured at the moment. He decided the office would absorb the cost if i would agree to some tests. So, since i was so tired of not knowing what was going on, i consented.my RA came back positive the next day. my ANA came back positive two days later. It was positive in the homogenous pattern(1:160). We got those results at about 4pm on Friday, so the only thing he said was that it was looking like we were on the right track, but he wants to run the results by a rheumatoid specialist on Monday. So, this weekend i've been reading. i found a book on dermatology. i found a picture that looks EXACTLY like my rashes. It was on the page titled SLE.So, here i sit with no "official" diagnosis, but feeling like it is coming. i wish i just knew at this point. i also don't know what tests should be done from here. i am faced with the problem of no insurance and not wanting an "official" diagnosis because i'm not sure i could ever be insured with that on my record.Sorry this was so long. i'm open to any advice or comments. i'm very grateful to find this list.bren_________________________________________________________________The new MSN 8: advanced junk mail protection and 2 months FREE* http://join.msn.com/?page=features/junkmail"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

[Guest guest]

Hi, 

 

My

name is .  My husband, , (age 59) was diagnosed with

prostate cancer 2 days ago.  I’m writing because I have more time

available to process and organize any responses than he does.  Thanks to

any and all of you who can help with some questions below.

 His

specs are :   PSA (1 yr ago) 2.1, GS 6 (3/3), CS T2b.  He has PC

on the left side (38%, 12%, 11%), none on the right side.  (9 cores were

taken from the left, 3 on the right, but they were physically merged for

analysis into 3 on each side, one each for the base, mid and apex).  

 His

bPSA was 0.8 in 1999.  It started climbing in 2008 and last check in 2010

was 2.1.  The urologist did not take a pre-biopsy PSA.   We live

in small town in Wyoming and so have to travel

for medical care but we’re not too far from Denver.

 Based

on current information, ’s interested in either Robotic Surgery (probably

Vattikuti Institute in Detroit)

or Proton Beam Therapy (Loma ) for treatment.  He’s not closed to

other options, but these look best from what we have read.  We need to do

more research about these options (cost, etc.)  He will get a second

opinion probably from the University

of Colorado Anshutz

cancer center, (Dr. Crawford’s group).  

 So,

that’s the basics.   Here’s a few questions.

1.    

 How long is it ok to wait for treatment (a few months? 3 months?

6?)   My instincts are to treat PC like I would a scorpion: 

extract the beast and run like heck . 

 

2.    

’s a statistician, so he can easily digest statistics and would

appreciate being directed to some study summaries to look at.  Any suggestions

for good summaries of studies? (Summaries are better than individual papers, if

possible, but anything is welcome.) 

We know about Partin tables, the PRCI and YANA

website and have Strum’s, Walsh’s and McHugh’s books.  The ideal would be

something like the Partin tables (classify by Gleason score, PSA) but the

tables would have other information instead of staging:  useful

information (for each treatment method) would be:  5 year % within PSA

bounds, 10 year % within PSA bounds, % incontinent, % with ED). 

 

3.    

  Any impressions or

comments about the Vattikuti Institute’s robotic surgery or Loma PBT? 

Or a strong belief we should consider something else?

 

4.    

Any thoughts on what sorts of situations a ploidy analysis is

beneficial?  

 

5.    

Does anyone know about Dr. Israel Barkin’s telephone coaching

service?   A YANA Colorado mentor suggested him.   We’re

looking for someone to consult with who’s unbiased about preferred treatment

and very knowledgeable and up-to-date about diagnosis and

treatment.   I gather that such an unbiased person is difficult to

find.   I haven’t been able to track down such a person in the Colorado area yet. 

Part of the reason I want to find such a person is that there are some slight

oddities about ’s situation (though I’m sure there are oddities about

everyone’s). 

 

Below

are the sort of questions I’d ask such a big picture doctor.  I am getting

pretty detailed here, but I welcome any thoughts anyone has.  I won’t take

it as “medical advice” in place of a doctor.

  

1.  

His last PSA is from a year ago.    From what I read, getting a

current pre-treatment PSA is critical to proper staging and also for

post-treatment success evaluation.    How long after a biopsy

can you get an accurate PSA?   Is a PSA from a year ago good enough?

 

2. 

He’s had an abnormal DRE for 1 ½ years:  the left side felt abnormal by

his PCP.  Could that tell us anything about ’s

situation?   E.g. what does it mean that he has a low GS but a

palpable tumor for 1 ½ years?    Does this mean the PC is more

likely to be aggressive, more likely to have penetrated the capsule?

 

3.  

His PSA is low but still rising.    I understand that some

aggressive forms of PC are associated with low PSA but the local urologist said

that’s not the case for because his PSA is rising and in the

aggressive forms it doesn’t rise.   I’d like to validate this

impression, given the problems with no pre-biopsy PSA.

 

4.  

As noted above, his left biopsy cores (the side with PC and where his prostate

feels abnormal) were somehow physically combined which means (I think) that

it’s harder now to tell the extent and location of the PC.    (I

called the medical assistant before the biopsy to make sure the cores were kept

separate.  She assured me they would be.)    Is this enough

of a problem for accurate staging and treatment that he should have another

biopsy (which would of course postpone treatment since I’m guessing he’d have

to wait awhile for that).

 

Thanks.  

I really appreciate all the good thinking and care that goes into this

group.   I’m equally amazed at suddenly finding ourselves in the

situation of having to face prostate cancer (too bad) and at finding so much

support (really good). 

 

Chris

Laramie, Wyoming

 

 

 

 

[Guest guest]

I was in the same position Oct. 2010. I am just completing treatment in Atlanta GA. Please do your research!!!!!!!!!!!!!!! Research www.rccancercenters.com.

Jerry

Introduction

Hi,

My name is . My husband, , (age 59) was diagnosed with prostate cancer 2 days ago. I’m writing because I have more time available to process and organize any responses than he does. Thanks to any and all of you who can help with some questions below.

His specs are : PSA (1 yr ago) 2.1, GS 6 (3/3), CS T2b. He has PC on the left side (38%, 12%, 11%), none on the right side. (9 cores were taken from the left, 3 on the right, but they were physically merged for analysis into 3 on each side, one each for the base, mid and apex).

His bPSA was 0.8 in 1999. It started climbing in 2008 and last check in 2010 was 2.1. The urologist did not take a pre-biopsy PSA. We live in small town in Wyoming and so have to travel for medical care but we’re not too far from Denver.

Based on current information, ’s interested in either Robotic Surgery (probably Vattikuti Institute in Detroit) or Proton Beam Therapy (Loma ) for treatment. He’s not closed to other options, but these look best from what we have read. We need to do more research about these options (cost, etc.) He will get a second opinion probably from the University of Colorado Anshutz cancer center, (Dr. Crawford’s group).

So, that’s the basics. Here’s a few questions.

1. How long is it ok to wait for treatment (a few months? 3 months? 6?) My instincts are to treat PC like I would a scorpion: extract the beast and run like heck .

2. ’s a statistician, so he can easily digest statistics and would appreciate being directed to some study summaries to look at. Any suggestions for good summaries of studies? (Summaries are better than individual papers, if possible, but anything is welcome.)

We know about Partin tables, the PRCI and YANA website and have Strum’s, Walsh’s and McHugh’s books. The ideal would be something like the Partin tables (classify by Gleason score, PSA) but the tables would have other information instead of staging: useful information (for each treatment method) would be: 5 year % within PSA bounds, 10 year % within PSA bounds, % incontinent, % with ED).

3. Any impressions or comments about the Vattikuti Institute’s robotic surgery or Loma PBT? Or a strong belief we should consider something else?

4. Any thoughts on what sorts of situations a ploidy analysis is beneficial?

5. Does anyone know about Dr. Israel Barkin’s telephone coaching service? A YANA Colorado mentor suggested him. We’re looking for someone to consult with who’s unbiased about preferred treatment and very knowledgeable and up-to-date about diagnosis and treatment. I gather that such an unbiased person is difficult to find. I haven’t been able to track down such a person in the Colorado area yet. Part of the reason I want to find such a person is that there are some slight oddities about ’s situation (though I’m sure there are oddities about everyone’s).

Below are the sort of questions I’d ask such a big picture doctor. I am getting pretty detailed here, but I welcome any thoughts anyone has. I won’t take it as “medical advice†in place of a doctor.

1. His last PSA is from a year ago. From what I read, getting a current pre-treatment PSA is critical to proper staging and also for post-treatment success evaluation. How long after a biopsy can you get an accurate PSA? Is a PSA from a year ago good enough?

2. He’s had an abnormal DRE for 1 ½ years: the left side felt abnormal by his PCP. Could that tell us anything about ’s situation? E.g. what does it mean that he has a low GS but a palpable tumor for 1 ½ years? Does this mean the PC is more likely to be aggressive, more likely to have penetrated the capsule?

3. His PSA is low but still rising. I understand that some aggressive forms of PC are associated with low PSA but the local urologist said that’s not the case for because his PSA is rising and in the aggressive forms it doesn’t rise. I’d like to validate this impression, given the problems with no pre-biopsy PSA.

4. As noted above, his left biopsy cores (the side with PC and where his prostate feels abnormal) were somehow physically combined which means (I think) that it’s harder now to tell the extent and location of the PC. (I called the medical assistant before the biopsy to make sure the cores were kept separate. She assured me they would be.) Is this enough of a problem for accurate staging and treatment that he should have another biopsy (which would of course postpone treatment since I’m guessing he’d have to wait awhile for that).

Thanks. I really appreciate all the good thinking and care that goes into this group. I’m equally amazed at suddenly finding ourselves in the situation of having to face prostate cancer (too bad) and at finding so much support (really good).

Laramie, Wyoming

[Guest guest]

I'll leave it to others with more knowledge to answer your excellent questions. I would just say don't rush the treatment decision. With a Gleason 6, I believe the literature would suggest you can take at least 3 months to study the options and make the decision. I wish you both well.

Mike

Subject: IntroductionTo: ProstateCancerSupport Date: Sunday, June 5, 2011, 2:20 PM

Hi,

My name is . My husband, , (age 59) was diagnosed with prostate cancer 2 days ago. I’m writing because I have more time available to process and organize any responses than he does. Thanks to any and all of you who can help with some questions below.

His specs are : PSA (1 yr ago) 2.1, GS 6 (3/3), CS T2b. He has PC on the left side (38%, 12%, 11%), none on the right side. (9 cores were taken from the left, 3 on the right, but they were physically merged for analysis into 3 on each side, one each for the base, mid and apex). His bPSA was 0.8 in 1999. It started climbing in 2008 and last check in 2010 was 2.1. The urologist did not take a pre-biopsy PSA. We live in small town in Wyoming and so have to travel for medical care but we’re not too far from Denver.

Based on current information, ’s interested in either Robotic Surgery (probably Vattikuti Institute in Detroit) or Proton Beam Therapy (Loma ) for treatment. He’s not closed to other options, but these look best from what we have read. We need to do more research about these options (cost, etc.) He will get a second opinion probably from the University of Colorado Anshutz cancer center, (Dr. Crawford’s group).

So, that’s the basics. Here’s a few questions.

1. How long is it ok to wait for treatment (a few months? 3 months? 6?) My instincts are to treat PC like I would a scorpion: extract the beast and run like heck .

2. ’s a statistician, so he can easily digest statistics and would appreciate being directed to some study summaries to look at. Any suggestions for good summaries of studies? (Summaries are better than individual papers, if possible, but anything is welcome.) We know about Partin tables, the PRCI and YANA website and have Strum’s, Walsh’s and McHugh’s books. The ideal would be something like the Partin tables (classify by Gleason score, PSA) but the tables would have other information instead of staging: useful information (for each treatment method) would be: 5 year % within PSA bounds, 10 year % within PSA bounds, % incontinent, % with ED).

3. Any impressions or comments about the Vattikuti Institute’s robotic surgery or Loma PBT? Or a strong belief we should consider something else?

4. Any thoughts on what sorts of situations a ploidy analysis is beneficial?

5. Does anyone know about Dr. Israel Barkin’s telephone coaching service? A YANA Colorado mentor suggested him. We’re looking for someone to consult with who’s unbiased about preferred treatment and very knowledgeable and up-to-date about diagnosis and treatment. I gather that such an unbiased person is difficult to find. I haven’t been able to track down such a person in the Colorado area yet. Part of the reason I want to find such a person is that there are some slight oddities about ’s situation (though I’m sure there are oddities about everyone’s).

Below are the sort of questions I’d ask such a big picture doctor. I am getting pretty detailed here, but I welcome any thoughts anyone has. I won’t take it as “medical advice†in place of a doctor.

1. His last PSA is from a year ago. From what I read, getting a current pre-treatment PSA is critical to proper staging and also for post-treatment success evaluation. How long after a biopsy can you get an accurate PSA? Is a PSA from a year ago good enough?

2. He’s had an abnormal DRE for 1 ½ years: the left side felt abnormal by his PCP. Could that tell us anything about ’s situation? E.g. what does it mean that he has a low GS but a palpable tumor for 1 ½ years? Does this mean the PC is more likely to be aggressive, more likely to have penetrated the capsule?

3. His PSA is low but still rising. I understand that some aggressive forms of PC are associated with low PSA but the local urologist said that’s not the case for because his PSA is rising and in the aggressive forms it doesn’t rise. I’d like to validate this impression, given the problems with no pre-biopsy PSA.

4. As noted above, his left biopsy cores (the side with PC and where his prostate feels abnormal) were somehow physically combined which means (I think) that it’s harder now to tell the extent and location of the PC. (I called the medical assistant before the biopsy to make sure the cores were kept separate. She assured me they would be.) Is this enough of a problem for accurate staging and treatment that he should have another biopsy (which would of course postpone treatment since I’m guessing he’d have to wait awhile for that).

Thanks. I really appreciate all the good thinking and care that goes into this group. I’m equally amazed at suddenly finding ourselves in the situation of having to face prostate cancer (too bad) and at finding so much support (really good).

Laramie, Wyoming

[Guest guest]

I suspect the reason why they didn’t

ask for a PSA test before the biopsy is because your husband had evidence of a

lump or hard spot by DRE or physical examination.  The PSA test doesn’t prove

you have cancer it really just indicates that there is evidence that you should

look for it. Typically by having a biopsy done.  In your husbands case the lump

felt during the exam was enough for the doctor to order a biopsy. Once your

husband has treatments the doctor may order a PSA test to establish a new base

line and monitor his condition from there.  A lot will depend on the treatment

he chooses.

A Gleason score of 6 is not considered an aggressive

case and you should have plenty of time to examine all of your options. If you

are worried about time and the cancer growing you can always get a hormone treatment

that will last 6 months and should slow any cancer activity.  It would not

surprise me if some of your doctors even recommend Active Surveillance or

watchful waiting, to see what the cancer does.  With your husband’s low

numbers he may have a slow growing variety and keeping an eye on it could be a

lot better than having to live with many of the side effects the treatments

would give him.  

If your husband has an aggressive form of

the cancer I would think his Gleason score would have been much higher

especially if he had a tumor for a year and a half. In my case in January my physical

with my GP - PSA was 1.6 and DRE was normal, June the Urologist was feeling a

firm area, biopsy in August came back with a  Gleason score of 9.

Education will be your best friend and

finding a doctor you can work with and are comfortable with should be one of

your primary goals.  You will be working with this doctor for many years.

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Anders

Sent: Sunday, June 05, 2011 2:20

PM

To:

ProstateCancerSupport

Subject:

Introduction

Hi,

My name is Chris

. My husband, , (age 59) was diagnosed with prostate

cancer 2 days ago. I’m writing because I have more time available

to process and organize any responses than he does. Thanks to any and all

of you who can help with some questions below.

His specs are

: PSA (1 yr ago) 2.1, GS 6 (3/3), CS T2b. He has PC on the

left side (38%, 12%, 11%), none on the right side. (9 cores were taken

from the left, 3 on the right, but they were physically merged for analysis

into 3 on each side, one each for the base, mid and apex).

His bPSA was

0.8 in 1999. It started climbing in 2008 and last check in 2010 was

2.1. The urologist did not take a pre-biopsy PSA. We live in

small town in Wyoming and so have to travel

for medical care but we’re not too far from Denver.

Based on

current information, ’s interested in either Robotic Surgery

(probably Vattikuti Institute in Detroit)

or Proton Beam Therapy (Loma ) for treatment. He’s not closed

to other options, but these look best from what we have read. We need to

do more research about these options (cost, etc.) He will get a second

opinion probably from the University

of Colorado Anshutz

cancer center, (Dr. Crawford’s group).

So, that’s

the basics. Here’s a few questions.

1. How

long is it ok to wait for treatment (a few months? 3 months? 6?) My

instincts are to treat PC like I would a scorpion: extract the beast and

run like heck .

2. ’s

a statistician, so he can easily digest statistics and would appreciate being

directed to some study summaries to look at. Any suggestions for good

summaries of studies? (Summaries are better than individual papers, if

possible, but anything is welcome.)

We know about

Partin tables, the PRCI and YANA website and

have Strum’s, Walsh’s and McHugh’s books. The ideal

would be something like the Partin tables (classify by Gleason score, PSA) but

the tables would have other information instead of staging: useful information

(for each treatment method) would be: 5 year % within PSA bounds, 10 year

% within PSA bounds, % incontinent, % with ED).

3. Any impressions

or comments about the Vattikuti Institute’s robotic surgery or Loma

PBT? Or a strong belief we should consider something else?

4. Any

thoughts on what sorts of situations a ploidy analysis is

beneficial?

5. Does

anyone know about Dr. Israel Barkin’s telephone coaching

service? A YANA Colorado mentor suggested him.

We’re looking for someone to consult with who’s unbiased about

preferred treatment and very knowledgeable and up-to-date about diagnosis and

treatment. I gather that such an unbiased person is difficult to

find. I haven’t been able to track down such a person in the Colorado area yet.

Part of the reason I want to find such a person is that there are some slight

oddities about ’s situation (though I’m sure there are

oddities about everyone’s).

Below are the sort

of questions I’d ask such a big picture doctor. I am getting pretty

detailed here, but I welcome any thoughts anyone has. I won’t take

it as “medical advice” in place of a doctor.

1. His

last PSA is from a year ago. From what I read, getting a

current pre-treatment PSA is critical to proper staging and also for

post-treatment success evaluation. How long after a biopsy

can you get an accurate PSA? Is a PSA from a year ago good enough?

2.

He’s had an abnormal DRE for 1 ½ years: the left side felt abnormal

by his PCP. Could that tell us anything about ’s

situation? E.g. what does it mean that he has a low GS but a

palpable tumor for 1 ½ years? Does this mean the PC is more

likely to be aggressive, more likely to have penetrated the capsule?

3. His

PSA is low but still rising. I understand that some

aggressive forms of PC are associated with low PSA but the local urologist said

that’s not the case for because his PSA is rising and in

the aggressive forms it doesn’t rise. I’d like to

validate this impression, given the problems with no pre-biopsy PSA.

4. As

noted above, his left biopsy cores (the side with PC and where his prostate

feels abnormal) were somehow physically combined which means (I think) that it’s

harder now to tell the extent and location of the PC. (I

called the medical assistant before the biopsy to make sure the cores were kept

separate. She assured me they would be.) Is this enough

of a problem for accurate staging and treatment that he should have another

biopsy (which would of course postpone treatment since I’m guessing

he’d have to wait awhile for that).

Thanks.

I really appreciate all the good thinking and care that goes into this

group. I’m equally amazed at suddenly finding ourselves in

the situation of having to face prostate cancer (too bad) and at finding so

much support (really good).

Laramie, Wyoming

[Guest guest]

You asked about Israel Barken below is his contact info. I spoke to him once last year during the Noscapiine informal trial. He is very bright and I know two people whom he has coached. Good luck.

P.S. I never got the results of the Noscapine trial but from what I heard from patients, it did not work out very well and I do not know if Dr. Barken is still working on it.

Israel Barken, M.D. Medical Director Prostate Cancer Research and Eduction Foundation (PC-REF) 501©3 non profit organization 6823 Deer Hollow PlSan Diego, CA 92120www.pcref.orginfo@...

As for proton beam radiation, I know 3 people who have gone to Loma and all of them claim that they believed it to be the right decision for them. For many years mainstream oncologists involved with radiation maligned this form of radiation in favour of the various others in standard use. However, while it was being maligned many of the same detractors were actually quietly building facilities of their own . Texas A+M and Harvard's Massachusetts General hospital to name two. Loma has been doing this since 1989, others have entered the field only in the past several years. When they opened the facility at Harvard's Mass General they did so with much fanfare and featured the first patient, a prostate cancer patient , in a Boston Globe newspaper article. When that patient read that statement he quickly booked a flight to Loma . He said he didn't want to be the

first at anything that had to do with cancer treatment. Experience does count for something.

As for your husbands low PSA it is difficult to try and second guess the future. Some men have seemingly elevated PSA's that stubbornly stay seemingly elevated but do not move much in either direction. Other men have very low PSA's that can get out of control in a very short period of time. About 10 years ago I read a story (either in Barrons or Forbes) written by a PCa patient by the name of Jack Bomba. He was a retired airline pilot with one of the major airlines. He wrote a scathing article regarding Dr. Walsh who is considered one of if not the best PCa surgeon in the country. He works out of s Hopkins. Since I was new to PCa at the time I wanted to speak with him and finally was able to do so as someone on one of the support group lists had knew his whereabouts. I was eager to hear about the surgical solution from a patient of one of the best surgeons in the country. I found Jack at

that time working in some Clinic/Spa down in Florida called Hippocrates. His story was sad but encouraging as he was recently divorced with a new girlfriend and adjusting to his new life. He had mild incontinence and considered himself semi-potent.

Jack had a PSA going into surgery of 2.8 and from his discussions with Walsh he said he had been led to believe that he was going to be cured and experience only mild and temporary incontinence and impotence. Thus the reason for the scathing article about Dr. Walsh in that magazine. He was venting and he felt that Walsh had not been entirely honest with him. But, after speaking with Jack at some length, I felt that Jack had also not been entirely honest with himself. I think he had deluded himself into believing that that the same absolutes applied to medicine (which is both a science and an art) as did to flying an passenger aircraft. I learned a lot from my conversation with Jack and thought I would never hear from him again. I had at that time joined an online PC-SPES support group. PC-SPES is/was an herbal formula that pretty much worked

for a lot of men but was removed from the market due to allegations of contamination. A story too long and not important any longer to get into as the product no longer exists (the formulator, Sophie Chen, a research biologist is now in the U.K. working with a company there to make a commercial product along those lines).

Well, just about the time that PC-SPES was being removed from the market I got a very desperate e-mail from Jack Bomba wanting to know where he could get ahold of some PC-SPES. His PSA was now 116 and climbing. Apparently things had not gone as planned and Dr. Walsh refused to see him or follow him as he told Jack that he did not follow his patients who failed his treatments. I e-mailed Jack back and told him I would look around for him and see if there were any suitable substitutes that men had found but I never heard from him again. This was approximately 5 years after his surgery at s Hopkins. Well, I forgot about Jack but last year it kind of bothered me that I never knew what became of him so I began using search engines and various variables I knew about him. I got a hit on a Hospice in Worcester , Ma. where Jack was living. And ultimately found his obituary in the Worcester Telegram. He passed away in

2006, having survived approximately 12 yrs post surgery.

The point of this being that you cannot really predict the course of this disease with any degree of certainty. Much of the medical literature you will read will sound very scientific and speak in absolutes but the truth is, there is much more that is not known than is known. I gave you Jack as an example because he had a relatively low PSA and gleason score and Dr. Walsh cherry picks his patients pretty carefully to exclude those whom he thinks will not be cured with his surgical treatments. He uses PSA and Gleason scores for that purpose and in my conversation with Jack Bomba he told me that Dr. Walsh assured him that he would quote: ''never have to every worry about this disease again in his life'' . So, in your searches keep in mind that this is in no way an exact science and that PSA's , Gleason scores and other factors aside, things can happen. These

are all guideposts only.

Take care, BOB

Subject: IntroductionTo: ProstateCancerSupport Date: Sunday, June 5, 2011, 2:20 PM

Hi,

My name is . My husband, , (age 59) was diagnosed with prostate cancer 2 days ago. I’m writing because I have more time available to process and organize any responses than he does. Thanks to any and all of you who can help with some questions below. His specs are : PSA (1 yr ago) 2.1, GS 6 (3/3), CS T2b. He has PC on the left side (38%, 12%, 11%), none on the right side. (9 cores were taken from the left, 3 on the right, but they were physically merged for analysis into 3 on each side, one each for the base, mid and apex). His bPSA was 0.8 in 1999. It started climbing in 2008 and last check in 2010 was 2.1. The urologist did not take a pre-biopsy PSA. We live in small town in Wyoming and so have to travel for medical care but we’re not too far from Denver.

Based on current information, ’s interested in either Robotic Surgery (probably Vattikuti Institute in Detroit) or Proton Beam Therapy (Loma ) for treatment. He’s not closed to other options, but these look best from what we have read. We need to do more research about these options (cost, etc.) He will get a second opinion probably from the University of Colorado Anshutz cancer center, (Dr. Crawford’s group). So, that’s the basics. Here’s a few questions. 1. How long is it ok to wait for treatment (a few months? 3 months? 6?) My instincts are to treat PC like I would a scorpion: extract the beast and run like heck . 2. ’s a statistician, so he can easily digest statistics and would appreciate being directed to some study summaries to look at. Any suggestions for good summaries of studies? (Summaries are better than individual papers, if possible, but anything is welcome.) We know about Partin tables, the PRCI and YANA website and have Strum’s, Walsh’s and McHugh’s books. The ideal would be something like the Partin tables (classify by Gleason score, PSA) but the tables would have other information instead of staging: useful information (for each treatment method) would be: 5 year % within PSA bounds, 10 year % within PSA bounds, % incontinent, % with ED). 3. Any impressions or comments about the Vattikuti Institute’s robotic surgery or Loma PBT? Or a strong belief we should consider something else? 4. Any thoughts on what sorts of situations a ploidy analysis is beneficial? 5. Does anyone know about Dr. Israel Barkin’s telephone coaching service? A YANA Colorado mentor suggested him. We’re looking for someone to consult with who’s unbiased about preferred treatment and very knowledgeable and up-to-date about diagnosis and treatment. I gather that such an unbiased person is difficult to find. I haven’t been able to track down such a person in the Colorado area yet. Part of the reason I want to find such a person is that there are some slight oddities about ’s situation (though I’m sure there are oddities about everyone’s). Below are the sort of questions I’d ask such a big picture doctor. I am getting pretty detailed here, but I welcome any thoughts anyone has. I won’t take it as “medical advice†in place of a doctor. 1. His last PSA is from a year ago. From what I read, getting a current pre-treatment PSA is critical to proper staging and also for post-treatment success evaluation. How long after a biopsy can you get an accurate PSA? Is a PSA from a year ago good enough? 2. He’s had an abnormal DRE for 1 ½ years: the left side felt abnormal by his PCP. Could that tell us anything about ’s situation? E.g. what does it mean that he has a low GS but a palpable tumor for 1 ½ years? Does this mean the PC is more likely to be aggressive, more likely to have penetrated the capsule? 3. His PSA is low but still rising. I understand that some aggressive forms of PC are associated with low PSA but the local urologist said that’s not the case for because his PSA is rising and in the aggressive forms it doesn’t rise. I’d like to validate this impression, given the problems with no pre-biopsy PSA. 4. As noted above, his left biopsy cores (the side with PC and where his prostate feels abnormal) were somehow physically combined which means (I think) that it’s harder now to tell the extent and location of the PC. (I called the medical assistant before the biopsy to make sure the cores were kept separate. She assured me they would be.) Is this enough of a problem for accurate staging and treatment that he should have another biopsy (which would of course postpone treatment since I’m guessing he’d have to wait awhile for that). Thanks. I really appreciate all the good thinking and care that goes into this group. I’m equally amazed at suddenly finding ourselves in the situation of having to face prostate cancer (too bad) and at finding so much support (really good). Laramie, Wyoming

[Guest guest]

I had my surgery at Vattikuti Institute in Detroit with Dr. Menon.

They absolutely had their act together. They were totally professional. I would suggest you make consult with their team first. I know it's quite a trip, but well worth it.

Also, they do provide apartments for patients right on the hospital campus (700 feet from the hospital entrance). We stayed there a week (until the catheter was removed).

I'll be glad to elaborate if you have any questions.

I was also impressed by the fact that their technique utilized a supra pubic catheter which is much less painful/annoying than a Foley.

My pathology results were not good but that is not their fault. I recovered very quickly from the robotic surgery. Urinary incontinence was 100% resolved within about a month. ED has not resolved, but that's not important for us (not a big deal, anyway-- no pun intended)

Mel

[Guest guest]

Hi Melvin,   Yes, I do have more questions.   What's the basic protocol for getting treated there, starting with us calling them.    Do you have to make two trips, one for an initial evaluation and another for the surgery?  Can you specify which doctor you want e.g. Menon?   is mostly certain he wants robotic surgery, if surgery, he wants it done there, however with a few more weeks of research he might change his mind.   Is it OK to get the process started with them and then cancel later (small chance, but would  want to leave that possibility open).   How much did the apartments cost (not a big deal but helps to know.).  Finally, do you mind saying what your GS and CS were?   If not, no  problem.  When did you get the surgery done?   I'll probably have more questions.  Thanks very much.

 

I had my surgery at Vattikuti Institute in Detroit with Dr. Menon.

 

They absolutely had their act together. They were totally professional. I would suggest you make consult with their team first. I know it's quite a trip, but well worth it.

 

Also, they do provide apartments for patients right on the hospital campus (700 feet from the hospital entrance). We stayed there a week (until the catheter was removed).

 

I'll be glad to elaborate if you have any questions.

 

I was also impressed by the fact that their technique utilized a supra pubic catheter which is much less painful/annoying than a Foley.

 

My pathology results were not good but that is not their fault. I recovered very quickly from the robotic surgery. Urinary incontinence was 100% resolved within about a month. ED has not resolved, but that's not important for us (not a big deal, anyway-- no pun intended)

 

Mel 

[Guest guest]

Anders wrote:

>My name is . My husband, , (age 59) was

>diagnosed with prostate cancer 2 days ago. I’m writing because

>I have more time available to process and organize any responses

>than he does. Thanks to any and all of you who can help with

>some questions below.

....

You have produced an amazingly comprehensive set of ideas and

questions for just a couple of days of research. Your husband is

a lucky man to have you looking out for him.

I don't have answers to most of your questions but I'll make a

few comments where I do have some ideas.

....

> 1. How long is it ok to wait for treatment (a few months? 3

> months? 6?) My instincts are to treat PC like I would a

> scorpion: extract the beast and run like heck.

Most people have the same feeling that you do. Waiting feels

like playing with fire. However, studies appear to show that

waiting a few months after diagnosis has little or no measurable

effect on outcomes. PCa typically develops over a period of

many, many years.

So I'm inclined to say that if delaying treatment by a couple of

months results in making a more informed decision (which might

even be " active surveillance " ), the long term outcome is likely

to be better than getting early treatment but not the one you

would have wanted if you knew more.

>2. ’s a statistician, so he can easily digest statistics

>and would appreciate being directed to some study summaries to

>look at. Any suggestions for good summaries of studies?

>(Summaries are better than individual papers, if possible, but

>anything is welcome.)

>

>We know about Partin tables, the PRCI and YANA website and have

>Strum’s, Walsh’s and McHugh’s books. The ideal would be

>something like the Partin tables (classify by Gleason score,

>PSA) but the tables would have other information instead of

>staging: useful information (for each treatment method) would

>be: 5 year % within PSA bounds, 10 year % within PSA bounds, %

>incontinent, % with ED).

Here is a starting page for the National Cancer Institute's

" Surveillance Epidemiology and End Results " (SEER) statistics on

prostate cancer.

http://www.seer.cancer.gov/statfacts/html/prost.html

Not being a statistician myself I find it very heavy going. But

your husband may really like and understand this material.

....

>1. His last PSA is from a year ago. From what I read, getting

>a current pre-treatment PSA is critical to proper staging and

>also for post-treatment success evaluation. How long after a

>biopsy can you get an accurate PSA? Is a PSA from a year ago

>good enough?

I don't understand why he wasn't given a recent PSA test. I

agree with you that it's critical. It's not as if it were

invasive or expensive.

I don't know how long to wait after the biopsy. I should think

it should be at least a few days and maybe a few weeks. I don't

know if anyone has done studies about this.

....

>4. As noted above, his left biopsy cores (the side with PC and

>where his prostate feels abnormal) were somehow physically

>combined which means (I think) that it’s harder now to tell the

>extent and location of the PC. (I called the medical

>assistant before the biopsy to make sure the cores were kept

>separate. She assured me they would be.) Is this enough of a

>problem for accurate staging and treatment that he should have

>another biopsy (which would of course postpone treatment since

>I’m guessing he’d have to wait awhile for that).

I don't have answers to all of these, but if the cores are kept

separate, then the slides can be sent to another lab. I would

think that a new biopsy is entirely unnecessary.

I also suspect that the full biopsy report from the lab has the

raw report for each sample in it as well as the summary. Ask the

doc for a copy of the lab report itself. If he baulks, press

him. The tissue came from your husband and I believe he has a

moral, and probably a legal, right to see the report.

I hate doctors who conceal information.

Best of luck.

Alan