Does anyone know anyone who has been ... - Prostate Cancer N...

Prostate Cancer Network

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Does anyone know anyone who has been cured of PC?

Dreamweaverman
Dreamweaverman

From what I have been reading there really isn’t much literature guaranteeing this cancer won’t come back whenever I stop the ADT, so i am really measuring my quality of life at this point. If my body is aching and my energy is consistently low, then stopping for awhile may be best decision for me. I wish I had more information on the possible permanent damage I could be doing to my body by all the side affects of low bone density, sporadical foggy cognition, muscle shrinkage etc. Does AYONE know ANYONE who has fully recovered from this cancer? I.e.-went through, surgery, radiation and a period of ADT, and is now cancer free and perhaps has a small semblance of past sex life?

26 Replies

Me

MiRob
MiRob in reply to Tall_Allen

Nice to know it’s possible 😊

What was the volume of your PC and what treatment did you have?

x-rays1
x-rays1 in reply to Tall_Allen

Can you share your journey with us?

Tall_Allen
Tall_Allen in reply to x-rays1

diagnosed with GS6, T2a, in 8/17 cores. Had SBRT in 2010. No lasting side effects - no ED. PSA is stable at 0.1 for last 5 years.

Men who believe they have been cured can have a recurrence 20 years later. The probability of recurrence decreases with time, of course. I remember Dr. Myers telling me that he was coming up to 5 years & he seemed to think that it was an important milestone. That is true for breast cancer, but there are no guarantees in PCa. I think that Myers is now 20 years out.

-Patrick

pjoshea13
pjoshea13 in reply to pjoshea13

I should add that over-screening in the U.S. has led to countless men with low Gleasons being treated. Doubtless, many of these have been cured of indolent cancer that would never have killed them. Others were treated at an early enough stage that a cure was possible. Men who have advanced PCa should not expect a cure, IMO, but it's reasonable to shoot for a durable remission. Better to study up on ways to extend survival than to indulge in magical thinking. IMO.

-Patrick

Superb post, pjoshea13. Thank you very much indeed.

jeddirks
jeddirks in reply to pjoshea13

I had PC surgery in 2010. I was told by my surgeon and read in a couple of books that if I went 5 years with no recurrence I could consider myself cured. The actual statistic given was a 3% chance of recurrence after 5 years. This of course assumes that the cancer had not gone beyond the margins of the prostate. That is why the 5 year mark is significant. This does not mean another form of cancer will not appear.

There are doctors who believe that those patients cured of prostate cancer, that is, years of zero psa without further treatments, still harbor roving tumor cells within the body, though of small enough mass and aggressiveness to be of no risk thanks to the immune system. So if by cure you mean every rogue cell eradicated, then no cure. There are numerous definitions of cure and the word cure itself has no specific medical definition.

As an oncologist and PCa survivor himself, Dr. "Snuffy" Meyers prefers to use the term "durable remission" instead of the word cure.

I'm 13+ months past RP, with no signs of recurrence. I met with urologist at one year past. When I asked if it would come back, he mentioned it was early. When asked how long to wait to feel assured, he brought up the 5 year timeframe.

cmaseo
cmaseo in reply to tkalaf

Thanks for sharing. After 13 months how’s your urinary and sexual function?

tkalaf
tkalaf in reply to cmaseo

Much better these days. After the catheter was removed used 1 to 2 pads daily. At ~8 mos. I gained more control (thanks to Kegels). I now have an occasional drip, but not daily. I no longer wear pads, but expect I will later as I age.

I have ED. I lost ~2/3 of nerves on one side during surgery. I estimate around ~40% stiffness these days. Sildenafil helps a bit, and I try to exercise muscles there as well. Thanks for asking, I wish you well!

cmaseo
cmaseo in reply to tkalaf

Thanks again for sharing. I wish you continued progress towards recovery.

In reading the above comments, my reaction is that it is inappropriate for patients to get caught up in the language of doctors. Doctors do not have crystal balls, and they don't live their patient's lives. They can only quote the facts. They speak of biochemical no evidence of disease (bNED), which just means that PSA has not indicated there is still any disease. If they use a term like "durable remission" (which is not defined), they are just stating the obvious - that the history has not shown any progression.

The patient's POV is different. We have full lives to live and must address the question - is my past history of prostate cancer still a part of my life, other than lasting side effects of treatment? Think of it this way - if you have a cold - when do you consider yourself cured of it? The answer is easy for most of us - when we have no evidence of disease any longer. If we wanted more assurance, we can get blood tests for inflammatory biomarkers, and scans of the nose, sinuses and upper respiratory tract. If all is clear, we consider ourselves cured. We would be insane not to.

It is inappropriate for a patient to adopt the doctor's POV, just as it is inappropriate for the doctor to adopt the patient's POV.

j-o-h-n
j-o-h-n in reply to Tall_Allen

I agree "Doctors do not have crystal balls" Just big ones....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 07/22/2019 4:26 PM DST

Prostate cancer is definitely curable if caught and treated early enough. I had Gleason 4+3, stage 2 PC treated by RALP 2 1/2 years ago. No recurrence indicated since then. Here's hoping. I don't intend to die of PC. Your situation appears to be advanced for which I am very sorry. I suppose I was just lucky, though I have ED as a result. Here's hoping you will be one of the "lucky" ones.

Like the question "what's the difference between herpes/cancer and love?"

answer: Herpes/cancer are forever.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 07/22/2019 4:30 PM DST

I worked with three people that have been cured. One and done. Unfortunately, I am not in that club yet. Pablo

What does that mean?

I understand the sources of your pain and anxiety. We all live with them But, really, is there anything in life that carries a guarantee? Anything? These are the cards we have been dealt. Our job is to play those cards and not to ask for a new hand. And, yes, there are men in my support group who are cured of their prostate cancer. The longest one is 18 years since since surgery, 82 and working every day. Does he have some random cancer cells in his body? Maybe. Does he drip? Yes. Does he get erections? No. He cares about these leftovers--sure-- but he plays his hand.

I am a 78 year old and was diagnosed at age 52 with Prostate Cancer. Had radical surgery, had radiation a year later, had hormone treat (testicles removed due to extremely high cost of pill form hormonial treatment that insurance would not cover) a year later. Since then have had no recurrence of PCa, but had hot flashes for 18 years. My current Urologist suggested I try monthly testosterone injections 4 years ago to stop hot flashes. Worked great, have lots of energy feel good and no evidence of PCa. prostate Cancer can be taken care of IF TREATMENT IS DONE WHEN NECESSARY! Far too many men leave it goes until it is out of the prostate and then all kinds of shit can happen.

You need to specify: Is Gleason 9 (4+5) curable?

Don_1213
Don_1213 in reply to Ralph1966

My MD's seem to feel it is. I'll be happy with a durable remission though.

None of us really knows whether they are cured of PC. Only time will tell if that statement is true. If you die of something else, I guess you could say you were cured. All I know is that I do not consider myself cured until at least 10 years have passed and my PSA is still undetectable. 10 years seems to be the point where if PCA were to have recurred, it would do so by the 10 year point. I will probably still get my PCA tested twice per year even beyond the 10 year point because, why not. I only had R.A.L.P with no radiation follow up, no chemo, no hormone depravation therapy. I can only hope I will never have to.

I often read posts on one support forum or another where somebody who had a treatment three months ago is proclaiming "I'M CURED!"

Then, I will see some other post where somebody who had treatment 10, 15, or over 20 years ago is experiencing a recurrence.

In these cases, I do not comment on the newly treated mens' posts. They are free to be optimistic and believe what they need to believe.

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