Treatment advice for prostate cancer

So far so good. Recovered from the chemo and subsequent radiation. Mostly weakness in the legs, especially felt when climbing stairs. Ascribe to Lupron injections and Nubeqa. Walk every day with hiking poles and do exercises learned in physical therapy. Play golf once a week but need to use a cart for the first time in my 73 years.

Hi, I’m new here and will share my experience with my metastatic prostate cancer if that’s ok ?? I hope this is put into the proper forum as I’m not exactly sure where that is !! Any help would be most appreciated!! TY
I was diagnosed late July 2022. With a PSA of 37 and a short time later I found out it went into 1 lymph node ! My Gleason score ranged from 6 to 9 according to the biopsies taken ! I went through 44 rounds of external beam radiation and was later put on Abiraterone and 5mg of Prednisone to lower my testosterone level and my PSA went from 37 to almost undetectable, .2 !! I was never given a stage of my cancer, but I was given a life expectancy ( 50% chance to live 5 years ) ! So I assume , not actually told that’s let’s just say not good !! I have many, many questions and being new here I’m not exactly sure where to go or who to ask the questions??? And I never had a previous PSA test until I was diagnosed!! Common knowledge is that it’s not recommended to give anyone a PSA test !! But, One of my Doctors who is ( Really ) in the know told me few things that really upset me about PSA testing that I would like to share with everyone who doesn’t know including Doctors !!! Though you would think Mayo Clinic Doctors would/should know !!
Would someone please reply to my initial message so I know where to go from here !! Many, many questions!!! And who to ask and where to ask ??? TY PS, My doctors have a portal for such things but would rather I make appointments ( Get Paid ) to talk about my questions!!!

I’m 74 and just had RLP at Mayo Jax. My Gleasons were 8 and 9. Also had lymph nodes, vans, and sems removed. Post surgical
path confirmed prostate cancer but no cancer in anything else. Also had nuclear bone scan, PET, CT, and MRI prior to surgery which were all clear. I feel surgery was best for me but I know every case is different. Praying for God’s guidance and healing for you.

To get the best result to your set of concerns, I suggest you copy your post, and re-post it as a new thread. To do that, click on the link "Home" at the top left of this page. Then, find "start a new discussion", and click on that. Give it a catchy title pointing to what worries you, then watch the replies come in!

fuzzy123: I am not sure what you mean about the psa as that is one measurement used to evaluate whether treatments are working.

I would also send your biopsy and any images you have for a second opinion outside of the institution you are using. Doctors are dedicated but not perfect. Try John Hopkins m Washington DC, MD Andersen in Houston, Weill Cornell Medical in New York city or Memorial Sloan Kettering in CT.

Here are a couple of sites that may help give you additional insight:
Nccn.org: Many doctors follow their guidelines, and it is there for doctors and patients
PCRI.org: The Prostate Cancer Research Institute helps men and caregivers research their prostate cancer treatment options. A number of good videos are there.

You also might want to focus your decisions on quality of life and what treatments might have the least side effects for you. If you use the search function at the top and type in a treament/drug, you may find that it has been discussed before.

I think being able to get second opinions on care should be available especially at Mayo Clinic. I wanted to get second opinion and advice on ongoing care and treatments and was told no because I had procedure (proton radiation) at another provider because my provider did not offer it.

PSA is the gold standard for monitoring prostrate cancer. The prostrate is the only gland and/or organ that makes PSA. If PSA is not normal or rising it is prostrate irritation or cancer. So monitoring it after cancer treatments is a must and should have been done prior to and after. You have to have a base line before treatments to see how the treatments did (in my case 90 days later after treatment and 90 days thereafter for first year then 6 months then once a year.

I agree with your suggestions for additional insight. Do not rely on a single source or single provider. Become an avid researcher and use trusted professional medical providers and web sites.

Given your diagnosis and age, I too would choose active surveillance, especially if you do not have other bothersome symptoms yet. I too chose radiation, but most often it is accompanied by hormone therapy called Androgen deprivation, or ADT. This turned out to be far more intrusive and with worse side effects than the radiation treatments themselves. The risks of surveillance are really that the cancer might spread beyond the capsule of the prostate, so you might ask your team about a bone scan before making a final decision.

If you’re cancer leaves the prostate while you’re watching it and metastasis,you’re now stage four no cure just fighting to live a few more years,I was not told that I was told I had 10 years before I would have to worry about it,that was 2018 in 21 it left the prostate I may have a year hopefully a new drug will help me live longer ,would have had it taken out if you radiate it might work,if I remember right they can’t take it out after radiation,get more opions research what I just said,read,read, read,good luck.Dave

Are you a 6 Gleason or a 7 as 3+4=7?

Gleason 6, 3+3