caret icon Back to all discussions

Life after prostectomy.

I'll try to keep this short. I'm 63 and 2 years ago had 14.6 Gleason score. Biopsy positive. Total prosectomy performed. After surgery gleason dropped to .035, but gradually grew to 4.4 after year and a half. Urologist performed another biopsy on the area of surgery.,and it came back negative. He referred me to oncologist ( in the Network). Went in for consultation.
Sorry, but this where I was treated like I was a total terminal case and they had to act soon to get my psa knocked down from 4.4 with 35 radiation treatments. I told them that I needed a Pelvic MRI. Finally got insurance to approve. It came back negative on traces of cancer
As soon as they got the results the Oncologist are calling saying your ready to go for your treatments even though they really didn't have any kind of a map for targeting this invisible cancerous cell(s). Also insurance hadnt approved treatments though they did on Lupron from my Urologist.
Oh were they upset when I told them that I needed to get a PET scan to identify areas of concern before considering my treatment options. That includes lupron which Urologist doesnt blame me for holding off.
I am in the process of getting a PET scan done, but getting resistance from insurance on this.
What I'm saying is that you need to be diligent and dont always cave in to the what some so called medical experts (?) Say to do.
I'm a monitor wait and see guy. God Speed. 👍

  1. Have to add your health and life are very important, but you need to again have due diligence on how and who are helping you with your health..🤔

    1. MD's are human. As such they can and do make mistakes in their efforts to help. In the end it is really the patient who decides which course of action is the best and given whatever information you have at hand and your personal reactions to proceeding.

      I had the Lupron shot combined with external beam radiation. For me it was not fun (hot flashes, night sweats, weight gain and more). The effects of my so called 6 month Lupron shot lasted for almost 14 months. That said today after surgery in 2013 ... then radiation and ADT in 2018 ...today my PSA is 0.02. All the best as you continue your journey. ... Dennis(ProstateCancer.net TEAM)

      1. I am wondering if anyone knows how you can have any PSA after removal of the prostate? Prostate Specific Antigen says to me “from the prostate “.

      2. In the end we all make choices that are best for us - just offering my experiences - And because we are all different what may work for one may not for another. One guy in my support group also had a Gleason 9 score - had surgery a week before I did - His cancer never returned - mine did - go figure - All the best

    2. Hi . I'm sure everything that is happening is extremely frustrating. I'm guessing that your doctor's concerns stem from not knowing where a PSA of 4.4 can come from after a prostatectomy other than prostate cancer. You mention trying to get a PET scan, but not which specific test. The newest, gold standard at detecting recurrent prostate cancer and its location is the PSMA PET scan. You can find out more detailed information about it here: https://prostatecancer.net/clinical/psma-imaging-scan. There is also the Axumin PET scan, which is also excellent at detecting recurrent prostate cancer. You can read more about it here: https://prostatecancer.net/clinical/axumin-early-detection. Your doctors should be able to provide additional information and help with working on any approvals. Please feel free to keep us updated on how things are going. Best, Richard (ProstateCancer.net Team)

      or create an account to reply.