Prostate cancer experience

[Winky]

I'm curious to hear from anyone who has had prostate cancer treated:

- which treatment you chose (e.g. surgery, external radiation, brachytherapy (internal radiation) or something else (cryotherapy, hormone treatment, etc.)

- how unpleasant was the treatment experience and immediate aftermath (next couple weeks)

- how are you doing now (how long ago, whether you suffered side effects and whether those are improving over time)

Thanks!

[gallahadesquire]

I’m in process of getting mine treated. Somethings I’ve learned along the way:

• brachytherapy has more side effects than surgery
• radiation therapy has the same survival rates as surgery
• stereotactic radiotherapy is much shorter (five days instead of six weeks) compared to external beam therapy, but is still considered experimental and side effects are showing up at 2-5 years
• robotic surgery is probably better than the traditional radical retropubic prostatectomy. One or two night admission
• cryotherapy really isn’t used
• In case of recurrence, radiation therapy makes surgery almost absolutely impossible and can’t be repeated. So if your young, you might want to opt for surgery. At my age, something else will kill me first
• have a team: medical oncologist, radiation oncologist, and a urologist. 

In my case, a missed diagnosis of moderate pulmonary hypertension was discovered and makes robotic surgery very risky for me (I’m a physician and I looked up the data). One radiation oncologist said I wasn’t a candidate for radiation therapy due to bilateral hip replacements, but Massachusetts General Hospital said they do it all the  time. Oddly enough, a friend went there and was referred by the MGH radiation therapist to BIDeaconess, where he had his stereotactic radiation. Harvard is so weird. 
 

Feel free to PM me if there are any questions. 

[Guest]

2 hours ago, Winky said:

I'm curious to hear from anyone who has had prostate cancer treated:

- which treatment you chose (e.g. surgery, external radiation, brachytherapy (internal radiation) or something else (cryotherapy, hormone treatment, etc.)

- how unpleasant was the treatment experience and immediate aftermath (next couple weeks)

- how are you doing now (how long ago, whether you suffered side effects and whether those are improving over time)

Thanks!

I would like to STRONGLY discourage you from making a decision based on testimonials from a handful of people. The best decision needs to be made based upon the analysis of all of your health data, as well examination as which potential side-effects would be most devastating to you. The decision needs to take into account the Gleason score of your tumor, its size, how it was discovered, your age, any potential co-morbidities/health problems, and so on. Certainly it makes sense to get opinions from different urologists and/or oncologists. Listen to what they tell you carefully. If possible, review the research which has been done on the top 2 or 3 procedures you're considering, including the percentage of side-effects. Optimally, you can find research which compares two procedures head-to-head, preferably in a semi-blinded fashion, or at least in a randomized assignment basis. 

[+ WilliamM]

I would never respond because my prostate cancer surgery was a way back in 1996.

[Old Blue]

The worst aspect is that prostate cancer feeds on testosterone.  Treatment therefore often includes medication to (1) block endogenous production of testosterone (chemical castration) and (2) block the effect of testosterone.

Not too long ago, treatment of prostate cancer included surgical castration (orchiectomy) but chemical castration is now preferred.

 

Life without testosterone can be radically different.  Reduced or absent libido, loss of muscle mass, increase in fat, depression, and hot flashes are but some of the unpleasant results. 

 

I experienced all of the above back in 2008-2009 when I turned up with a Gleason 9 (on a scale of 1-10 with 10 being the most aggressive) prostate cancer on 8 out of 8 biopsies. 

 

Prognosis was bleak and surgery was out of the question.  I fortunately became enrolled in an NIH clinical trial consisting of radiation followed by chemotherapy over the course of 9 months.  Lost all  my hair but best thing I did was hire a trainer and go to the gym 3 times a week to minimize muscle loss.  This also enhanced my sense of well being immensely.   

 

My cancer went into remission and remains in remission.  But definite changes in my life remain.  Think Alan Turing on a less extreme scale.  Still I'm thankful to be alive. 

[Winky]

23 hours ago, Unicorn said:

I would like to STRONGLY discourage you from making a decision based on testimonials from a handful of people. The best decision needs to be made based upon the analysis of all of your health data, as well examination as which potential side-effects would be most devastating to you. The decision needs to take into account the Gleason score of your tumor, its size, how it was discovered, your age, any potential co-morbidities/health problems, and so on. Certainly it makes sense to get opinions from different urologists and/or oncologists. Listen to what they tell you carefully. If possible, review the research which has been done on the top 2 or 3 procedures you're considering, including the percentage of side-effects. Optimally, you can find research which compares two procedures head-to-head, preferably in a semi-blinded fashion, or at least in a randomized assignment basis. 

Thank you, Unicorn (and others who responded.) I always respect and value your input to medical discussions here.

I have read several studies and am well-advised by doctors in all three areas. There is a particular lifestyle perspective that is also valuable to me - that of sexually active gay men. And even while there are some PRO (patient reported outcome) surveys available, doctors don't always present (or fully know about) the short- and medium-term concerns that patients face undergoing these treatments.

Again, I completely agree with you about the dangers of relying on limited and personally biased experiences, but the handful here have already offered me a couple good questions to take back to professional advisors before making a decision. I'm grateful for that!

[Guest]

7 hours ago, Old Blue said:

...Not too long ago, treatment of prostate cancer included surgical castration (orchiectomy) but chemical castration is now preferred...

Preferred by whom? Again, this is an individual decision which depends on patient characteristics, including his preferences and values, in consultation with the health care team. Chemical castration has a higher rate of side-effects than surgical castration, so a patient could reasonably choose one or the other, or he could try chemical and change his mind and go to surgical (not the other way around of course) if he develops side-effects. There are prostheses available. 

https://en.wikipedia.org/wiki/Leuprorelin

"Common side effects include hot flashes, unstable mood, trouble sleeping, headaches, and pain at the site of injection. Other side effects may include high blood sugar, allergic reactions, and problems with the pituitary gland."

"Common side effects of leuprorelin injection include redness/burning/stinging/pain/bruising at the injection site, hot flashes (flushing), increased sweating, night sweats, tiredness, headache, upset stomach, nausea, diarrhea, impotence, testicular shrinkage, constipation, stomach pain, breast swelling or tenderness, acne, joint/muscle aches or pain, trouble sleeping (insomnia), reduced sexual interest, vaginal discomfort/dryness/itching/discharge, vaginal bleeding, swelling of the ankles/feet, increased urination at night, dizziness, breakthrough bleeding in a female child during the first two months of leuprorelin treatment, weakness, chills, clammy skin, skin redness, itching, or scaling, testicle pain, impotence, depression, or memory problems. The rates of gynecomastia with leuprorelin have been found to range from 3 to 16%."

[Old Blue]

Men generally don't like to have their balls cut off.  

A simple Google search:

 

Androgen-deprivation therapy (ADT) with surgical or pharmacological castration has long been a mainstay of treatment for metastatic prostate cancer. However, due to concerns about cosmetic and psychological effects of surgical castration, that practice has been nearly eliminated in favor of medical castration.Jan 21, 2016

[Guest]

8 hours ago, Old Blue said:

Men generally don't like to have their balls cut off.  

A simple Google search:

 

Androgen-deprivation therapy (ADT) with surgical or pharmacological castration has long been a mainstay of treatment for metastatic prostate cancer. However, due to concerns about cosmetic and psychological effects of surgical castration, that practice has been nearly eliminated in favor of medical castration.Jan 21, 2016

The fact that's its A mainstay of treatment doesn't mean it's the only rational choice for everyone. Prostheses are available so the cosmetic effect you mentioned is a non-issue. I worked in a urology clinic for over 12 years, and many men found the side-effects of Lupron intolerable. 

[+ Cock Eyed Optimist]

When I was diagnosed with prostate cancer eight years ago, my urologist recommended I read the "bible" regarding prostate cancer: "Guide to Surviving Prostate Cancer" by Patrick Walsh, MD. ( It is now in its 4th edition)  

At first I chose the treatment called "Active Surveillance ", which is doing nothing for a while, but being constantly monitored.  After six years, my most recent biopsy indicated that I had to act.  I visited a radiation oncologist and a surgeon to decide which route I should take.  Ironically, both doctors recommended that I read the book mentioned above before I made a decision.  

I chose the radiation route, and am happy that I did.

[Old Blue]

During the 70's, 80's, and 90's (before Lupron was commonly used), I saw many men (patients) who had had their balls cut off in treating prostate cancer. They generally didn't like it. 

Interestingly, hot flashes was often their presenting complaint.  

 

I retired from the practice of Internal Medicine in 2006 so I admittedly am not up to date.

 

Perhaps I should have written "but chemical castration is now generally preferred."

 

When I went to get the results of my prostate biopsy in 2008, my urologist informed me of my Gleason score 9 results on all biopsies and gave me my first Lupron injection before I left the room.

 

We didn't spend a lot of time discussing the pros and cons of having my balls cut off instead.

 

Ironically, I retired in 2006 and was diagnosed with prostate cancer in 2008.

 

Such is life.  

[Luv2play]

I was diagnosed with prostate cancer in 2007, along with my two other brothers, all within 18 months of each other. The oldest had the lowest Gleason score and opted for monitoring. He just turned 79.

The second had the highest Gleason but still in the mid range, opted for radical prostatectomy, but refused post operative radiation. His cancer came back in nine years and he opted for radiation and hormonal treatment. But the hormonal caused heart issues and had to be discontinued. He doesn't like to talk about it but I believe he was given a prognosis that looks bleak beyond 5 years. He certainly is living life to the fullest day by day.

I was in the lower mid  range of Gleason and also opted for  having the prostate surgically removed. No radiation was indicated as the cancer has not spread beyond the prostate, unlike my second brother. I have been cancer free for 14 years and still sexually active with a strong libido. Achieving a full erection without drugs such as Cialis is difficult but as a bottom not a big issue. Can still orgasm but no ejaculate. Life goes on.

[+ Axiom2001]

On 9/17/2021 at 11:13 AM, Winky said:

I'm curious to hear from anyone who has had prostate cancer treated:

- which treatment you chose (e.g. surgery, external radiation, brachytherapy (internal radiation) or something else (cryotherapy, hormone treatment, etc.)

- how unpleasant was the treatment experience and immediate aftermath (next couple weeks)

- how are you doing now (how long ago, whether you suffered side effects and whether those are improving over time)

Thanks!

Three or four weeks ago, I spoke with a good friend of mine regarding my prostate prognosis: it was negative.  At the time he revealed to me after some 21 years that he had prostate cancer.  I was livid because he was just relaying this to me. 

Somewhere during our conversation he recommended an excellent book: Invasion of the Prostate Snatchers: An Essential Guide to Managing Prostate Cancer for Patients and Their Families.  My friend stated that the book's content enabled him to make the right decision: radiation/seeding.  He's been pleased with the outcome thus far.

After our conversation, I immediately purchased two copies: one for my second cousin and the other for me.  I mailed my cousin's book yesterday, for he is to undergo surgery sometime in November.  Perhaps he'll change his mind or let his decision remain as previously determined.

Edited September 28, 2021 by Axiom2001

[+ The Big Guy]

I had a low Gleason score and had several options available including watchful waiting.   I opted for radiation as I was a bit frightened to wait.  Looking back now, while I still can ejaculate after treatment, it takes a long time to cum and I miss producing semen and having to explain to partners that “yes I did cum”.  If I could do it over, I would have waited longer for treatment.   I realize that is no always an option and is a very personal decision.  I applaud your effort to get other points of view.   Best wishes.  

[Luv2play]

I should have mentioned one other thing that influenced me from not opting for radiation. I was told by both my urologist and oncology doctor that if I took radiation and if the cancer recurred, surgery would then become a much more difficult procedure because of the extensive scar tissue resulting from the radiation treatment. Urinary incontinence would then become a far likelier outcome. With only the surgery, I experience incontinence for about six weeks after the operation and after the healing process was completed, I regained full bladder control which I have retained to this day. You want to think about the possibility of having to wear diapers for the rest of your life as well.

[Guest]

3 hours ago, The Big Guy said:

I had a low Gleason score and had several options available including watchful waiting.   I opted for radiation as I was a bit frightened to wait.  Looking back now, while I still can ejaculate after treatment, it takes a long time to cum and I miss producing semen and having to explain to partners that “yes I did cum”.  If I could do it over, I would have waited longer for treatment.   I realize that is no always an option and is a very personal decision.  I applaud your effort to get other points of view.   Best wishes.  

Close monitoring/watchful waiting is usually the best approach for a Gleason 6 (or lower, which is rare). It's also probably a good idea for a 7. Probably a bad idea for a 9 or 10, and I'd be nervous about an 8 in most cases. Tumor size also comes into play, as do other factors, so I don't want to generalize. Listen to opinions of different doctors. As long as you're being closely monitored, there's really not much downside to monitor. Sometimes the cancers will often shrink on their own, or with something really simple like dutasteride or finasteride. If you have a Gleason 6 or 7, things can get better, and one can always change one's mind if things go south, with minimal risk. 

https://www.pcf.org/about-prostate-cancer/diagnosis-staging-prostate-cancer/gleason-score-isup-grade/

"The pathologist looking at the biopsy sample will assign one Gleason grade to the most predominant pattern in your biopsy and a second Gleason grade to the second most predominant pattern. For example: 3 + 4. The two grades will then be added together to determine your Gleason score.  Theoretically, Gleason scores range from 2-10.  However, since Dr. Gleason’s original classification, pathologists almost never assign scores 2-5, and Gleason scores assigned will range from 6 to 10, with 6 being the lowest grade cancer."

Edited September 20, 2021 by Unicorn

[Luvmassage]

I was diagnosed with prostate cancer three years ago and was under active surveillance.  Early this year my cancer changed and my urologist recommended I seek treatment.  After consultations with many different doctors and differing recommendations of what to do I decided to have a robotic prostatectomy.  I had a complicating factor in that my prostate was quite large and was bulging into my bladder which was causing constant bladder and UTI infections.  Therefore, removal made the most sense for me since I was taking care of two issues.

As one of the previous people mentioned you need to really evaluate your own situation and the various factors since everyone is different and the form of treatment can vary depending upon the situation.  I decided that I could not live with the cancer inside of me and as I mentioned I needed to take care of the enlarged prostate issue as well.

The robotic surgery was very successful.  I had it done at Stanford Hospital.  I was able to achieve erections after about one month and the urinary incontinence has gone about two months after surgery.   Those are the two biggest risk factors with the surgery.

I am very happy with my decision to have the robotic surgery.  If you would like more information feel free to reach out to me.

[+ glutes]

Today's NYTimes (12/7/2021) Science section has a excellent article on prostate cancer in the gay & bi communities:

https://www.nytimes.com/2021/12/07/health/gay-men-prostate-cancer.html

[+ Tygerscent]

On 9/17/2021 at 1:13 PM, Winky said:

I'm curious to hear from anyone who has had prostate cancer treated:

- which treatment you chose (e.g. surgery, external radiation, brachytherapy (internal radiation) or something else (cryotherapy, hormone treatment, etc.)

- how unpleasant was the treatment experience and immediate aftermath (next couple weeks)

- how are you doing now (how long ago, whether you suffered side effects and whether those are improving over time)

Thanks!

If DiVinci method is available and your particular circumstances call for survey of this sort, it might be in your better interest to consider and advocate for that~ Every person’s circumstances are unique to the individual… So, any suggestions here may be examples of someone’s care but, not necessarily what will be best for you or available to you~
 Your greatest tool right now is clear information and knowledge~ It seems you are already on that path and that is commendable~ 

 

Edited December 7, 2021 by Tygerscent

[Rod Hagen]

Before noticing this thread, I posted a thread referencing a NyTimes article on Prostate cancer in gay men.

 

 

 

Edited December 7, 2021 by Rod Hagen

[+ glutes]

Well Rod, I am glad your re-posted it. Everyone here should read it!

[LFABWC]

On 9/19/2021 at 4:04 PM, Luv2play said:

I was diagnosed with prostate cancer in 2007, along with my two other brothers, all within 18 months of each other. The oldest had the lowest Gleason score and opted for monitoring. He just turned 79.

The second had the highest Gleason but still in the mid range, opted for radical prostatectomy, but refused post operative radiation. His cancer came back in nine years and he opted for radiation and hormonal treatment. But the hormonal caused heart issues and had to be discontinued. He doesn't like to talk about it but I believe he was given a prognosis that looks bleak beyond 5 years. He certainly is living life to the fullest day by day.

I was in the lower mid  range of Gleason and also opted for  having the prostate surgically removed. No radiation was indicated as the cancer has not spread beyond the prostate, unlike my second brother. I have been cancer free for 14 years and still sexually active with a strong libido. Achieving a full erection without drugs such as Cialis is difficult but as a bottom not a big issue. Can still orgasm but no ejaculate. Life goes on.

how long do you have to wait after surgery to bottom?

 

[Luv2play]

49 minutes ago, gaothanear said:

how long do you have to wait after surgery to bottom?

 

Lol. Good question. It's so long ago, 16 years, that I forget. When I did, it didn't hurt.

[Becket]

Appreciate those who take the time to respond to this vital thread.  Don't want to think about it, but glad this thread made me do so.  Thanks.

[gallahadesquire]

Now eight months after c course of external beam radiation, I find having no ejaculate interesting. The fact that my organs are stronger than ever is also fascinating.