Re: concerns

[Guest guest]

GeeGee wrote:

> Hi,

>

> Well it's been about 1 1/2 years that my husband had prostate

> surgery. He was given lupron for 1 year and also had

> radiantion for 8 weeks. During this time they checked his PSA

> level and of course they were " 0 " .

>

> Just this month they checked his levels again and he has .03.

> They dr's put him back on lupron. THey said it's in his lemp

> nods. Should he get them removed? What are other options?

>

> Gigi

Hello Gigi,

I'm not a doctor and can't give you any authoritative answers to

your questions, but here are some ideas.

First off, with a PSA of only .03, not all doctors would consider

that it is proven that your husband still has cancer. There is a

chance that he does, but it's my understanding that there is a

chance that he doesn't, or that if he does have cancer, it

doesn't pose any danger for the future. I thought most doctors

like to wait until the PSA reaches at least 0.1, or even 0.2,

before deciding that there is a recurrence of cancer.

If he does still have cancer, it is common for it to be in the

lymph nodes, though it could be elsewhere. I'm not sure how a

doctor can tell unless he's seen something on a scan or has

performed a biopsy of the lymph node. The doctor may be

suggesting that it's in the lymph nodes because that's a very

likely place, not because he knows for sure.

I don't know if removing the lymph nodes is commonly done. I do

know that radiation is common and, if there is cancer in the

lymph nodes, and not anywhere else, it's possible to completely

cure it with radiation. If your husband did not have radiation

to the lymph nodes before, it can be used now. If he already had

radiation there, I don't know if they can do it again.

I think the best advice I can give you is to get all of the

information and recommendations that you can from your husband's

doctor, and then go to another specialist for a second opinion.

Find someone with the most experience with prostate cancer that

you can. I suspect that either a radiation oncologist or a

medical oncologist would be a good choice, but I'm not at all

sure and I'd rather have a doctor with wide experience with

prostate cancer and an open mind about it, than someone with a

specialty in some particular treatment type (radiation, surgery,

medical oncology) but not much experience with prostate cancer.

Finally, I'd like to say that, whatever happens, don't despair.

It's very likely that your husband will still be around for many

years. His remaining cancer appears to be very small. It may be

that it can be cured or that it's so slow growing that it isn't a

threat for a many, many years. Or it may be that it will respond

to treatments and stay insignificant for years.

Best of luck to you.

Alan

[Guest guest]

(snip)

> Just this month they checked his levels again and he has .03.

> They dr's put him back on lupron. THey said it's in his lemp

> nods (sic: lymph nodes). Should he get them removed? What are other options?

The range for " undetectable " PSA is less than or equal to 0.01 to

0.05 ng/mL (nanograms per milliliter). So 0.03 is well within the

acceptable range.

I recommend:

(1) Recheck the reported PSA. Is it truly 0.03 ng/mL?

(2) If so, require " them " to prove that it's in the lymph nodes.

(3) If so, consult a real cancer specialist, a medical

oncologist, preferably one who is familiar with PCa treatment.

Regards,

Steve J

[Guest guest]

Chuck Maack wrote:

> ... A prescription of an antibiotic like Cipro or Levaquin

> taken for a month to six weeks followed by another PSA would

> determine whether some urinary inflammation or infection caused

> this very low elevation. ...

Chuck,

I know that some urologists will prescribe antibiotics in lieu of

a biopsy to see if elevated PSA was due to an infection, but I

hadn't heard of it being used after a radical prostatectomy. Is

the idea here that some healthy prostate tissue was left behind

by the operation and now may be infected?

Personally, I have some doubts about the value of using

antibiotics even before a biopsy because, first of all, the

majority of cases of prostatitis are not thought to be caused by

bacterial infection, secondly, that not all bacterial infections

of the prostate seem amenable to antibiotic treatment, and

thirdly, there are other, less invasive ways to test for urinary

tract infections - using urine cultures. I think that, in

general, there's too much readiness by both physicians and

patients to use antibiotics and too little understanding of the

risks that antibiotics pose in destroying beneficial bacteria and

promoting the growth of antibiotic resistant bacteria, not to

mention a very small but non-zero risk of potentially dangerous

allergic reactions.

However, I do agree with your point that a PSA of 0.03 is very

low to be declaring a recurrence, much less a dangerous

recurrence requiring immediate application of ADT.

....

Alan

[Guest guest]

GeeGee wrote:

> Okay - I've confirmed with my husband - he is back on lupron

> and Bicalutamide once a day.

> The daily sweats for the entire year was hard because while he

> was hot, I was cold. Although I did bundle up. Once again we

> will be going back to the same hot flashes.

>

> Although I didnt go with him to the doctors, I will make sure

> that I go next time. I will request additoinal information

> such as the Gleason score. Please give me suggestions as to

> what I should ask the doctor.

>

> I thank all of you for all of your input. May God bless you

> all.

>

> Gigi

Here are some potential questions. Some are follow-ups to

Chuck's suggestions. He or others may have more ideas.

1. What was your husband's Gleason, PSA and staging before and

after surgery?

2. Why was your husband given radiation and ADT after surgery?

Presumably the PSA never reached an undetectable level after

surgery. Is that right? What was the PSA after surgery and

before radiation?

3. How certain is the doctor that your husband has a recurrence

of the cancer?

A PSA rising to 0.03 from 0.01 would certainly be suspicious, but

not necessarily definitive. Does the doctor think it's

definitive? Is he sure, or is he prescribing hormone treatment

" just in case " ?

4. What does the doctor think will happen if ADT is discontinued

after the current round?

5. Why does the doctor think that your husband has cancer in the

lymph nodes? Is there specific evidence of that?

6. Does the doctor know if the lymph nodes were treated already,

either by surgery or radiation? Is further lymph node specific

treatment possible or desirable? Note: if the doctor is a

surgeon he may not know if radiation is possible and if he's a

radiation oncologist he may not know if surgery is possible. If

there is a reason to believe that cancer is in the lymph nodes,

and at least a decent possibility that it hasn't spread further,

then I should think a consultation with the other kind of doctor

would be desirable.

7. Some PCa specialists would recommend establishing a PSA

velocity before putting the patient on ADT. In other words, find

out what the PSA doubling time is without ADT.

If it turns out that the doubling time is long, your husband may

be a candidate for " ADT light " , i.e., treatment with dutasteride

(brand name = Avodart), which has far fewer side effects but can

significantly prolong the time before stronger measures are

required. If the doubling time is very long, he may be a good

candidate for active surveillance, though it may be that Avodart

is " light " enough that's it's not a problem to take it.

Would the doctor think this is a good strategy?

8. Some PCa specialists, including Dr. " Snuffy " Myers, a well

known PCa oncologist who himself has PCa, will try to use some

supplements to combat the cancer. I know that he has recommended

large doses of pomegranate extract, resveratrol, and maybe some

vitamins (I'm not sure about that) to see if they have any

effect. He says that sometimes they do.

Should this be tried?

9. What are the doctor's own specialties? Is he a urologist

(surgeon), radiation oncologist, or a medical oncologist? If

he's not a medical oncologist, does he know a good one who

specializes in PCa?

There are lists of such doctors available somewhere.

----

So much for the questions. I'd also like to caution you that

many doctors who treat prostate cancer aren't really experts at

it. The first doctor I was referred to for my prostate cancer

was a urologist who, when I did some research on him, turned out

to be a specialist in female incontinence. He wanted to operate

on me but, for a number of reasons, I decided he wasn't really

the right guy for the job.

The National Cancer Institute lists a number of " NCI Designated

Cancer Centers " in the U.S., where care is considered to be of

exceptionally high quality, where clinical trials are often

available, and where success rates are significantly higher than

in the average cancer center, much less the average Joe Doctor's

office. You might consider making an appointment at one of these

places if there is one near you. See:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html

Best of luck.

Alan

[Guest guest]

I would go as far as to suggest you record the meeting. Though some doctors might object to this, I would just explain that you are new to this and want to able to capture and reference all the details. It will really help you as this group will continue to ask for A LOT of details (and this is a good thing!).

 

 

GeeGee wrote:> Okay - I've confirmed with my husband - he is back on lupron> and Bicalutamide once a day.

> The daily sweats for the entire year was hard because while he> was hot, I was cold. Although I did bundle up. Once again we> will be going back to the same hot flashes.> > Although I didnt go with him to the doctors, I will make sure

> that I go next time. I will request additoinal information> such as the Gleason score. Please give me suggestions as to> what I should ask the doctor.> > I thank all of you for all of your input. May God bless you

> all.> > GigiHere are some potential questions. Some are follow-ups toChuck's suggestions. He or others may have more ideas.1. What was your husband's Gleason, PSA and staging before and

after surgery?2. Why was your husband given radiation and ADT after surgery?Presumably the PSA never reached an undetectable level aftersurgery. Is that right? What was the PSA after surgery andbefore radiation?

3. How certain is the doctor that your husband has a recurrenceof the cancer?A PSA rising to 0.03 from 0.01 would certainly be suspicious, butnot necessarily definitive. Does the doctor think it's

definitive? Is he sure, or is he prescribing hormone treatment " just in case " ?4. What does the doctor think will happen if ADT is discontinuedafter the current round?5. Why does the doctor think that your husband has cancer in the

lymph nodes? Is there specific evidence of that?6. Does the doctor know if the lymph nodes were treated already,either by surgery or radiation? Is further lymph node specifictreatment possible or desirable? Note: if the doctor is a

surgeon he may not know if radiation is possible and if he's aradiation oncologist he may not know if surgery is possible. Ifthere is a reason to believe that cancer is in the lymph nodes,and at least a decent possibility that it hasn't spread further,

then I should think a consultation with the other kind of doctorwould be desirable.7. Some PCa specialists would recommend establishing a PSAvelocity before putting the patient on ADT. In other words, find

out what the PSA doubling time is without ADT.If it turns out that the doubling time is long, your husband maybe a candidate for " ADT light " , i.e., treatment with dutasteride(brand name = Avodart), which has far fewer side effects but can

significantly prolong the time before stronger measures arerequired. If the doubling time is very long, he may be a goodcandidate for active surveillance, though it may be that Avodartis " light " enough that's it's not a problem to take it.

Would the doctor think this is a good strategy?8. Some PCa specialists, including Dr. " Snuffy " Myers, a wellknown PCa oncologist who himself has PCa, will try to use somesupplements to combat the cancer. I know that he has recommended

large doses of pomegranate extract, resveratrol, and maybe somevitamins (I'm not sure about that) to see if they have anyeffect. He says that sometimes they do.Should this be tried?9. What are the doctor's own specialties? Is he a urologist

(surgeon), radiation oncologist, or a medical oncologist? Ifhe's not a medical oncologist, does he know a good one whospecializes in PCa?There are lists of such doctors available somewhere.----

So much for the questions. I'd also like to caution you thatmany doctors who treat prostate cancer aren't really experts atit. The first doctor I was referred to for my prostate cancerwas a urologist who, when I did some research on him, turned out

to be a specialist in female incontinence. He wanted to operateon me but, for a number of reasons, I decided he wasn't reallythe right guy for the job.The National Cancer Institute lists a number of " NCI Designated

Cancer Centers " in the U.S., where care is considered to be ofexceptionally high quality, where clinical trials are oftenavailable, and where success rates are significantly higher thanin the average cancer center, much less the average Joe Doctor's

office. You might consider making an appointment at one of theseplaces if there is one near you. See:http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html

Best of luck.Alan

-- Emersonwww.flhw.org

Every 2.25 minutes a man is diagnosed with prostate cancer.Every 16.5 minutes a man dies from the disease.

[Guest guest]

Emerson wrote:

> I would go as far as to suggest you record the meeting. Though

> some doctors might object to this, I would just explain that

> you are new to this and want to able to capture and reference

> all the details. It will really help you as this group will

> continue to ask for A LOT of details (and this is a good

> thing!).

That's an excellent idea. The problem for most patients, and I

certainly include myself here, is that there is a combination of

information overload and anxiety about the disease that makes it

hard to get everything that was said.

Alan

[Guest guest]

Alan,

Again thanks for the support. I have alot to digest and will make a point to go with him to the next appt. and try to get answers.

Gigi> Okay - I've confirmed with my husband - he is back on lupron> and Bicalutamide once a day. > The daily sweats for the entire year was hard because while he> was hot, I was cold. Although I did bundle up. Once again we> will be going back to the same hot flashes.> > Although I didnt go with him to the doctors, I will make sure> that I go next time. I will request additoinal information> such as the Gleason score. Please give me suggestions as to> what I should ask the doctor.> > I thank all of you for all of your input. May God bless you> all.> > GigiHere are some potential questions. Some are follow-ups toChuck's

suggestions. He or others may have more ideas.1. What was your husband's Gleason, PSA and staging before andafter surgery?2. Why was your husband given radiation and ADT after surgery?Presumably the PSA never reached an undetectable level aftersurgery. Is that right? What was the PSA after surgery andbefore radiation?3. How certain is the doctor that your husband has a recurrenceof the cancer?A PSA rising to 0.03 from 0.01 would certainly be suspicious, butnot necessarily definitive. Does the doctor think it'sdefinitive? Is he sure, or is he prescribing hormone treatment"just in case"?4. What does the doctor think will happen if ADT is discontinuedafter the current round?5. Why does the doctor think that your husband has cancer in thelymph nodes? Is there specific evidence of that?6. Does the doctor know if the lymph nodes were treated already,either

by surgery or radiation? Is further lymph node specifictreatment possible or desirable? Note: if the doctor is asurgeon he may not know if radiation is possible and if he's aradiation oncologist he may not know if surgery is possible. Ifthere is a reason to believe that cancer is in the lymph nodes,and at least a decent possibility that it hasn't spread further,then I should think a consultation with the other kind of doctorwould be desirable.7. Some PCa specialists would recommend establishing a PSAvelocity before putting the patient on ADT. In other words, findout what the PSA doubling time is without ADT.If it turns out that the doubling time is long, your husband maybe a candidate for "ADT light", i.e., treatment with dutasteride(brand name = Avodart), which has far fewer side effects but cansignificantly prolong the time before stronger measures arerequired. If the doubling time is

very long, he may be a goodcandidate for active surveillance, though it may be that Avodartis "light" enough that's it's not a problem to take it.Would the doctor think this is a good strategy?8. Some PCa specialists, including Dr. "Snuffy" Myers, a wellknown PCa oncologist who himself has PCa, will try to use somesupplements to combat the cancer. I know that he has recommendedlarge doses of pomegranate extract, resveratrol, and maybe somevitamins (I'm not sure about that) to see if they have anyeffect. He says that sometimes they do.Should this be tried?9. What are the doctor's own specialties? Is he a urologist(surgeon), radiation oncologist, or a medical oncologist? Ifhe's not a medical oncologist, does he know a good one whospecializes in PCa?There are lists of such doctors available somewhere.----So much for the questions. I'd also like to caution you

thatmany doctors who treat prostate cancer aren't really experts atit. The first doctor I was referred to for my prostate cancerwas a urologist who, when I did some research on him, turned outto be a specialist in female incontinence. He wanted to operateon me but, for a number of reasons, I decided he wasn't reallythe right guy for the job.The National Cancer Institute lists a number of "NCI DesignatedCancer Centers" in the U.S., where care is considered to be ofexceptionally high quality, where clinical trials are oftenavailable, and where success rates are significantly higher thanin the average cancer center, much less the average Joe Doctor'soffice. You might consider making an appointment at one of theseplaces if there is one near you. See:http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.htmlBest of luck.Alan