New here with prostate cancer.

@jim18

ED is not my biggest side effect concern. Mine is the blinding headaches, constant burning pain in all my muscles, brain fog, and soaking wet sweats. I would gladly trade all these pains for the pleasure of no erections. The ADT is the cause due to low and unrecoverable testosterone that more than half of the men experience. Now numerous studies show that low testosterone and thus ADT's do not help deter cancer but do cause the horrible side effects.

@acn25 I have to differ. ADT just works, and it won't "kick your a**" if you fight it. If you do serious resistance training 3 or 4 times per week (weights up to the point of failure), and work in some cardio, not only does it fight muscle loss due to absence of testosterone, it will actually counter much of the fatigue brought on by ADT.

The only real caveat to this is when you are NOT a "physically active person" going into ADT. Then it may well kick your a** because if you weren't physically active before ADT, it will be harder to get off the couch when you haven't had that habit under healthier circumstances. But you gotta. Start slow, and build. ADT is worth it.

@pesquallie please cite the numerous studies. Thanks

@pesquallie
You are so correct about the studies coming out regarding ADT and when it is considered appropriate and for how long. There has been a major shift away from months and years on ADT and many people have endured those side effects. Similarily many many years ago everyone with Gleason 6 3+3 was told they have cancer and needed treatment. How many thousands + endured radiation and surgery and the side effects from older radiation and surgery procedures that today would be told treatment was unnecessary and they are AS candidates. There are circles of Oncology where they don’t like to even call Gleason 6 cancer. ADT is important in its role which is continuing now to be refined with much lower duration of treatments when applicable. Like anything though I am sure there are old school Oncologist’s that will swear by it and won’t bat an eye putting you on it for 24 months when maybe not necessary. Always get 2nd opinions, research ADT studies and be prepared to question your Oncologist regarding your ADT and you specifically.

Sounds like you have a Gleason 4+3, The lower numbers don’t matter, Doctors go by the highest number. The other problem sounds like seminal vesicle invasion. An aggressive thing that can happen with prostate cancer.

You also want to ask your doctor if any of these were found in the biopsy intraductal, ductal, large cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

My brother at 77 had a 4+3 also. He had five sessions of SBRT radiations at UCSF. Three years later, he’s 80 and doing fine. While you are in the VA system, you can go to outside doctors. They have had UCSF doctors come to the VA in San Francisco, not sure they still do, but you should find out about it.

You really should come to an ancan.org Veterans group meeting. They can help you with getting the best treatment possible through the VA, And outside the VA. Jim Marshall is a retired captain who runs the meetings and is really informed about all the possibilities. The next meeting is August 3 at 5 PM Pacific time. You Need to install GoTo Meeting, Which is free for every device, And put in answercancer For the name of the meeting to join. They have a veterans speaking freely meeting on Tuesday at 5 PM to talk about everything but treatment, You can join the meeting and talk about how you feel how you feel the doctors are treating you, anything but the details of treatment.

Well I am back again good morning! First a bit about me I am very healthy and work out at least 3 times a week listening to my old time rock and roll. I have gone backpacking last fall and spring but now it’s too hot to go.
Someone asked about the size of my prostate and the mri shows 4.4X3X4.4 volume is 30cc.
Until I know what procedure is available to me it will be hard to make a decision. My concern with surgery is mostly with incontinence. The ed is not so much as my wife passed 2 years ago and I am alone now and don’t expect to meet anyone again but who knows!
With radiation my daughter wants me to stay with her but she lives 200 miles away from me and it would be very boring to stay there all the time.
I would like to know what the chances are of getting sick during the radiation and not being able to even care for myself. I do have friends that I can call if needed to help me.
Thank you all for your help and support, Jim

@jimcarr Ask your radiation oncologist if you are a candidate for the SBRT that Jeff alluded to. It is only 5 sessions over two weeks. I had it 2 ½ years ago. Side effects were minimal and at this point both my radiologist, and urologist are thrilled with the results. The SBRT would be unlikely to cause you problems that would require assistance.

I was diagnosed at 77 years old; some Gleason score 4+3 and 3+4, perineural invasion also. My urologist recommended a Decipher test; evaluates the risk of the cancer metastasizing. Mine came back at .88 of 1; high risk. That led to the urologist recommending ADT for me and also recommending radiation rather than surgery. I've been on Orgovyx for four months and just finished four of my scheduled 45 radiation treatments. I've been keeping up with the exercise steadily and still get out to golf twice a week. Side effects from ADT are tolerable; hot flashes and breast tenderness; haven't been on RT long enough to notice side effects.

@jimcarr Except for HDR (brachytherapy) which is done in the hospital under sedation the radiation is usually not debilitating. I had external beam radiation 5x a week. Routine was to get up exercise, get dressed and drive to hospital for radiation treatment, then go to work. I did that every day. In the last half of the treatment may get urgency, reduced flow, loose stool, etc. Can be resolved with a few pills Flowmax, etc. You should be fine at home. If you chose EBRT there will be multiple courses available from SBRT (5 treatments) to 20, 28, and 35+ treatments. Fewer treatments usually have more short-term side effects. Also, Proton (if VA covers) vs. Photon. In all cases get IMRT/IGRT which is what should be available in SF.

With large cribriform the RO will probably want to put you on ADT. Get Orgovyx (needs approval for VA) since that is a daily pill and if you have bad side effects it can be stopped. With the shots (Lupron, Eligard) you in for at least 6 months even with a 3-month shot since it takes 3 months to recover testosterone. I had no side effects on Orgovyx. Short courses are about as effective as longer ones for localized cancer.

If choosing surgery, ask about the likelihood of a BCR with the high percentage of type 4 and cribriform. Even though the PSMA PET was clean it cannot pick up small metastases. With EBRT the pelvic area is likely to be treated based on your biopsy to take care of these. With surgery if it is outside the prostate, it will cause your PSA to increase (a BCR) and you will need salvage radiation likely with ADT. Did they do a Decipher test on the biopsy? That will provide a score that can help with the decision.

@jimcarr
Radiation does not normally leave you in that kind of situation.

I had 40 sessions of salvage radiation and went to work immediately after every time and didn’t have any side effects at all for six years, then I started to have some incontinence issues.

My brother at 77 had SBRT radiation. More than an hour and a half ride back-and-forth on the bus and he had no problems at all doing that. The worst he got was he had some urinary issues burning, Flomax resolved that.

A your age, you can do SBRT radiation, Five sessions and it’s over. If you could get to UCSF, I can recommend A radiation oncologist that you would like a lot.

If you really do have seminal Vesicle invasion then they may want to put you on ADT, That would be more troublesome than the radiation. Still no problem driving after the procedure.

If you have to have IMRT radiation for 20 sessions, Or more, it can cause urinary and rectal issues, Some people get diarrhea, which can be a pain, keeps them near a toilet. This doesn’t always last the whole time, however, The body can usually adjust to it.