44yr PSA180 Gleason9 non-metastatic. Surgery or Treatment?

Posted by dinu @dinu, Aug 29 11:17am

I am 44 yr old, Navy Veteran, just got diagnosed with prostate cancer. First rectal exam showed enlarged prostate, followed by PSA180. Biopsy showed 9 out of the 12 samples with cancer cells (most of them Gleason8 or 9). MRT shows no spread. CT with contrast shows no spread. I just got today my bone scintigraphy. Initial results show no spread. Father had prostate cancer last year, therapy, seems to be cured. Mother has breast cancer and stomach cancer (surgery and treatment) now cured.
My big question now: should i go for complete prostate removal or should i go with the various other treatments?
I am currently being seen for this at the University Clinic of Heidelberg in Germany.
Appreciate all the support and stay positive.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for dailyeffort @dailyeffort

Hi Steven,
I opted for proton therapy combined with 2 years of ADT (lupron + abiraterone + prednisone). To arrive at that decision, I invested quite a bit of time doing research and writing down my questions as I went. At diagnosis, in the fall of 2021, I was 67 and in otherwise very good health. I based my treatment decision on the most recent results out of the Stampede Trial which indicated that the treatment I chose would provide comparable overall survival and progression free survival to surgery plus radiation plus ADT (the other treatment path for high/very high risk prostate cancer) without the risks of surgical side effects. Since then, there has been more research into the efficacy of radiation vs surgery for cribriform which you should research then ask both a radiation oncologist and genitourinary urologist about.

I am very happy with my decision. In consultation with the radiation oncologist, surgical oncologist, genitourinary medical oncologist and and my primary care doctor (who continued to monitor my health on a regular basis through treatment), my team at the UW Medicine/Fred Hutchinson cancer center ( they use a multidisciplinary team approach to new patient orientation), the majority opinion was to take my chosen path.

I chose proton instead of photon because the RO felt that due to my one hip replacement and location of the EPE that it would result in the most effective treatment and reduced risk of both short and long term side effects. To date, I have had no side effects from the radiation nor did it impact my life during treatment. The results of the Stampede trial strongly indicated that the lupron + abiraterone combination therapy would provide the best long term outcome in conjunction with the radiation therapy (RT). As Jeff suggested, there is no reason to fear ADT. It did cause the usual side effects, but they were manageable with a healthy diet, regular cardio and resistance exercises and sleep (yes, I did find a lunch time or afternoon nap very helpful when I could adjust my schedule to allow it). I live an active life. I am a general contractor and spend my free time hiking, mountain biking kayaking, xc skiing and snowshoeing. We continued all of these activities during treatment although my energy levels and stamina were somewhat reduced. By six months after completing ADT, my energy and physical conditioning had returned to pre treatment levels. During ADT, I did experience some temporary changes to my emotional state from time to time which were occassionally annoying, but facinating to experience none the less. Libido evaproated which was a big change , but gradually has returned to normal. Post treatment, physical intimacy is just as enjoyable as ever,

For me, accepting my diagnosis, determining that what was most important to me (striving to live in the sweet spot where quality of life and longevity coexist), finding a medical team I had confidence in, educating myself, on an ongoing basis, about PCa (which allows me to have confidence in and effective communication with my doctors) and making the most of each and every day I have because there is no guarantee of tomorrow (nor has there ever been) are the steps that I followed to get to where I am today.

Life is good, even during this whole PCa existance. but attitude and continued effort to keep life well balanced is what makes it so for me. I wish you success in your journey and am glad that you found MCC. It is a great help.
Bill

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Bill, thank you for your reply. I’m swaying towards the radiation. As it seems with Gleeson, nine the chances of your knee radiation and ADT after surgery are very probable. I’ve been giving two different options. One is SBRT 5 round an and six months of ADT combining Orgovyx,Zytiga & Prednisone. The other opinion, I got said the best way is more tried and true doing ISMRT 20 rounds and then 18 months of Orgovyx. I hear so many stories of the bad side effects of the medicine. I’m tending to go towards the six months of ADT, do not be on it for 18 months , but in the back of my head, I keep thinking the cure may be better with the trideand true 18 months with your research which way did it point?
Your researchedopinion is greatly appreciated
Steven

REPLY
Profile picture for dailyeffort @dailyeffort

Hi Steven,
I opted for proton therapy combined with 2 years of ADT (lupron + abiraterone + prednisone). To arrive at that decision, I invested quite a bit of time doing research and writing down my questions as I went. At diagnosis, in the fall of 2021, I was 67 and in otherwise very good health. I based my treatment decision on the most recent results out of the Stampede Trial which indicated that the treatment I chose would provide comparable overall survival and progression free survival to surgery plus radiation plus ADT (the other treatment path for high/very high risk prostate cancer) without the risks of surgical side effects. Since then, there has been more research into the efficacy of radiation vs surgery for cribriform which you should research then ask both a radiation oncologist and genitourinary urologist about.

I am very happy with my decision. In consultation with the radiation oncologist, surgical oncologist, genitourinary medical oncologist and and my primary care doctor (who continued to monitor my health on a regular basis through treatment), my team at the UW Medicine/Fred Hutchinson cancer center ( they use a multidisciplinary team approach to new patient orientation), the majority opinion was to take my chosen path.

I chose proton instead of photon because the RO felt that due to my one hip replacement and location of the EPE that it would result in the most effective treatment and reduced risk of both short and long term side effects. To date, I have had no side effects from the radiation nor did it impact my life during treatment. The results of the Stampede trial strongly indicated that the lupron + abiraterone combination therapy would provide the best long term outcome in conjunction with the radiation therapy (RT). As Jeff suggested, there is no reason to fear ADT. It did cause the usual side effects, but they were manageable with a healthy diet, regular cardio and resistance exercises and sleep (yes, I did find a lunch time or afternoon nap very helpful when I could adjust my schedule to allow it). I live an active life. I am a general contractor and spend my free time hiking, mountain biking kayaking, xc skiing and snowshoeing. We continued all of these activities during treatment although my energy levels and stamina were somewhat reduced. By six months after completing ADT, my energy and physical conditioning had returned to pre treatment levels. During ADT, I did experience some temporary changes to my emotional state from time to time which were occassionally annoying, but facinating to experience none the less. Libido evaproated which was a big change , but gradually has returned to normal. Post treatment, physical intimacy is just as enjoyable as ever,

For me, accepting my diagnosis, determining that what was most important to me (striving to live in the sweet spot where quality of life and longevity coexist), finding a medical team I had confidence in, educating myself, on an ongoing basis, about PCa (which allows me to have confidence in and effective communication with my doctors) and making the most of each and every day I have because there is no guarantee of tomorrow (nor has there ever been) are the steps that I followed to get to where I am today.

Life is good, even during this whole PCa existance. but attitude and continued effort to keep life well balanced is what makes it so for me. I wish you success in your journey and am glad that you found MCC. It is a great help.
Bill

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Bill, also can you tell me more about the ADT you took it for two years? and you did fine through those years and then after you stopped your testosterone came back up. I’ve been reading that it’s very very hard for the testosterone to return and it may never return, but that’s not what you experienced?

REPLY
Profile picture for dinu @dinu

Hi Steve, I am in the same situation as you and haven't the fact that I am only 44 yrs old, complicates thongs for me.
But let us stay positive, trust the science and the doctors. Let us take it one day a time and enjoy every second we have to the fullest.

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I’m sorry to hear about your diagnosis. It hit me hard. Must really be weighing on you. Are the doctors telling you one modal of treatment is better than the other or are they just leaving it up to you? I feel like I’ve been floating around trying to figure out on my own with no real guidance. I guess cause no one knows they leave it up to you to make the decision.

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Profile picture for stevencuccia @stevencuccia

Bill, also can you tell me more about the ADT you took it for two years? and you did fine through those years and then after you stopped your testosterone came back up. I’ve been reading that it’s very very hard for the testosterone to return and it may never return, but that’s not what you experienced?

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I’ve been on it for nine years.. I stopped for six months last year and my testosterone started rising pretty quickly and I’m 77.

I’m not sure where you read It’s hard for testosterone to return, but I have not seen that Proven for the majority of people. Yes, it may take six months to a year for it to return if you have had Lupron for a long time, People that have taken Orgovyx have had it return in months rather than having a long-term wait. I have heard from a few people that have had it not return it all or have a long time before It did return, but that is not the norm.

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Profile picture for jeff Marchi @jeffmarc

I’ve been on it for nine years.. I stopped for six months last year and my testosterone started rising pretty quickly and I’m 77.

I’m not sure where you read It’s hard for testosterone to return, but I have not seen that Proven for the majority of people. Yes, it may take six months to a year for it to return if you have had Lupron for a long time, People that have taken Orgovyx have had it return in months rather than having a long-term wait. I have heard from a few people that have had it not return it all or have a long time before It did return, but that is not the norm.

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Jeff, your comment is so helpful So length of time on the ADT does not necessarily mean you’ll never get it back or it’ll take a lot longer to return. So you’ve been on it for a long time and you haven’t been experiencing all this sad stories that I’ve read about. And it’s not factual that the lung you’re on it the more chance you’ll never come back to normal ? I guess all my research is is scaring me. I’m probably getting a lot of false information. I appreciate all the honest comments, especially people who have lived it. While on the medicine, would you say besides just mild side effects? Your life is pretty much the way it was before where is every day Difficult?

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I’ve never had fatigue from taking ADT. For the first five years, I didn’t exercise at all. I’ve always been thin. I did get a little bit of a belly, but not much.. I never gained weight. I did have to take bone straighteners, Fosamax once a week for the first six years and now I am on a Zometa infusions I get them every three months. I got osteoarthritis while I was on it. No one else in my family has gotten that. Had to replace two knees and a hip. I was able to avoid replacing the second hip by doing a lot of work in the gym. Doing gym work also resolved a problem with my left shoulder, which has torn tendons. I can now sleep on it which I could not for a long time without pain. If you saw me run around the track at 77 you would not believe I had all those things done.

Starting about four years ago, I go to the track across the street and walk a mile in the morning and the afternoon every day, At least 14 miles a week. I also try to get to the gym three days a week, some weeks I don’t quite make it But I have greatly increased my muscle strength after doing that for the last year and a half.

People have no idea I have had prostate cancer for 15 years and that I’ve been on ADT for almost 9. The only visible side effect is hot flashes, But they have become less frequent. I do have fans in a couple of different places in case I get hot, and I wear an Embrlabs.com wave2 device Which reduces hot flash intensity and it pretty much stops them at night.

Exercise makes a major difference in fatigue from ADT. Pushing through exercise actually causes you to have less fatigue, if that is a problem you have from it. As long as I drink some electrolytes, I can run around the 1/4 mile track without stopping three times, I slow my run at times, but speed up as well. Another quarter mile to and from house.

So yes, you can appear normal on ADT.

12 years ago, Before I had salvage radiation, they gave me a six-month Lupron shot. At the time, I didn’t know what it was and it had absolutely no side effects as far as I was concerned.

If you are on Orgovyx Your testosterone does come back a lot quicker, If you need ADT try to get that.

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Profile picture for johndavis60 @johndavis60

Didn’t have decipher. My biopsy, RP pathology and sonomic testing were horrific enough. If I did have decipher it would’ve been over .99. I can only hope they radiate what’s left

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I had Gleason 9: 4+5. Everyone expected my Decipher would be high. It came out low risk. That helped me make a critical decision on my care/

The test uses biopsy tissue so nothing is. done to you as long as the biopsy or other pathology tissue was there.

So there's really no downside with Decipher unless you have to pay (it's expensive).

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Profile picture for stevencuccia @stevencuccia

Bill, thank you for your reply. I’m swaying towards the radiation. As it seems with Gleeson, nine the chances of your knee radiation and ADT after surgery are very probable. I’ve been giving two different options. One is SBRT 5 round an and six months of ADT combining Orgovyx,Zytiga & Prednisone. The other opinion, I got said the best way is more tried and true doing ISMRT 20 rounds and then 18 months of Orgovyx. I hear so many stories of the bad side effects of the medicine. I’m tending to go towards the six months of ADT, do not be on it for 18 months , but in the back of my head, I keep thinking the cure may be better with the trideand true 18 months with your research which way did it point?
Your researchedopinion is greatly appreciated
Steven

Jump to this post

Hi Steven,
If I were in your position, I would first determine what risk group I would be in according to the NCCN Guidelines Risk Stratification definitions because that is what would inform me to how the best oncology doctors in the country concur that I should be treated to minimize the chance of cancer recurrence as well as both short and long term side effects.

In order to know what risk group you are in, you would need to enter the information from you biopsy pathology report showing the number of cores taken, the Gleason grade of the tumor found in each one and whether the cribriform was large, small or intraductal (IDC). You would also need to share what your last PSA test result was that prompted you to get a biopsy.

My preference for treatment options would almost always be one stipulated by the NCCN Guidelines (NCCN.org). The picture below shows the RT treatment guidelines for both High Risk and Very High Risk patients. In the discussion section I do not see that they reduce the time on ADT for SBRT nor do I see the addition of abiraterone for High Risk Patients, only very high risk patients. So I would want my doctor to specify which risk group I was in and what characteristics placed me there and then follow the NCCN guidelines for the RT the ADT agents prescribed and the duration of the treatment. If treatment was to deviate from the NCCN guidelines, I would want to see read and understand the study and its results before agreeing to a different treatment plan. I hope this helps.
Bill

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You'll need to decide what you think is best for you. I had Gleason 9 with a PSA of about 7.5. I got surgery. They found the cancer had extended beyond the prostate. They did not get it all. My PSA is rising. I'm getting ready to give it another go with radiation.

The surgery resulted in not having the ability to attain an erection. My countenance is pretty good. Occasionally I will have a tiny drop come out. I lift weights, do all sorts of activities, and really have no issues. The recovery time after surgery was short, but I got a wicked infection that was difficult to get rid of.
I'm not sure if I would go the same route again. I just wanted it out of me. That was not achieved.

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Profile picture for chief901 @chief901

I am new and completely ignorant. What is BCR?

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Hi Chief901,

Welcome to MCC! As there are many acronyms used in communication about prostate cancer (PCa), I found the following thread very helpful!
https://connect.mayoclinic.org/discussion/prostate-cancer-related-abbreviations-what-acronym-would-you-add/
This community has been a huge help to me in getting oriented to all of the many facets of prostate cancer. I hope you will continue to post your questions and comments as participation is what makes this forum so valuable to others.

Bill

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