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