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stellabell
stellabell CSN Member Posts: 2 Member

Diagnosed 6 years ago, many samples Gleason 8 or 9, seminal vesicle involvement. Classified as high risk of course. Was told by several docs that even if I had surgery I would still need the full barrage of radiation treatments also. I chose IMRT and 2 years of ADT and skipped the surgery. Now 6 years later, PSA slowly rising (currently .9) and Pet scan confirmed recurrence confined to prostate so far. Can't do radiation again. surgery is more difficult after radiation so what's left? Proton? Brachy? Cryo? The thought of going on ADT again (it was Lupron last time) is unbearable, the side effects were just miserable. New appointment with medical oncologist in a few weeks, just looking for info before hand.

Comments

  • swl1956
    swl1956 CSN Member Posts: 275 Member

    Sorry you're going through this. I had an ablation procedure which killed my cancer in the prostate gland but due to unseen micro metastasis showed up in a couple pelvic lymph nodes 6 months later. I've been prescribed ADT for two years. Orgovyx (Relugolix) and Zytiga (Abiraterone) with prednisone. Also had 40 rounds of IMRT. The ADT is no fun, but may be better than the Lupron shots? The ablation procedure (in my case IRE Nanoknife) was easy to endure except for a bout of urinary retention after the catheter was removed. Very little side effects! Anyhow, One of the focal procedures like Cryo or others may be an option for you at this point? I think SBRT can also be used even after you've had standard radiation. Due to PSMA PET scans it's more definitive where the cancer is located making spot treating it more effective. So as sucky as you situation is, you likely have options.

    Dr. Mark Scholz just released this disturbing video addressing recurrence and cure rates which has me worried.

  • Wheel
    Wheel CSN Member Posts: 259 Member

    Surgery after radiation is becoming much more common but is done by a subset of Surgeons specializing in this. Most major cancer centers seem to have a Surgeon doing the procedures. Recovery and side effects are similar to if it was being done initially. I would check in your area or close by for one of these Surgeons and obtain a consultation.

  • Clevelandguy
    Clevelandguy CSN Member Posts: 1,361 Member

    Hi,

    Yes you can do Proton after radiation in the same area. That would be my course of action if I was in your shoes. I would choose surgery as a last result, choose a very experienced surgeon if you need to go this route.

    Dave 3+4

  • Old Salt
    Old Salt CSN Member Posts: 1,693 Member
    edited October 2 #5

    Are you and/or your doctors sure that this is NOT a (temporary) bounce in your PSA, which is common after radiation? IN this context, it would be informative to show the actual PSA data.

    How old are you? Or maybe I should ask what your life expectancy is.

  • stellabell
    stellabell CSN Member Posts: 2 Member

    I am now 72 years old. The PSA is indeed fluctuating, and har recently gone down a bit, but the Pet scan seemed pretty conclusive that a recurrance has taken place. And remember the radiation was 5 years ago, late for a temporary bounce in PSA?

  • Steve1961
    Steve1961 CSN Member Posts: 709 Member

    yes surgery is more difficult but can be done .. i had salvage surgery done at ucla by dr robert rieter …on the table for 2 hours hospital overnight all was good ..only side affect is i am still a bit incontinent 2 pads a day ..i am undetectable 1.5 years later .. still get an erection.if you remove it yiu may get rid of it for good …i would i did ….you can only treat the prostate twice thats it and then you cant remove it

  • Wheel
    Wheel CSN Member Posts: 259 Member

    steve1961 is correct, it could be your last chance for surgery. At 72 you are also reaching the upper age limit of having surgery for a prostatectomy assuming you are in good health. I had mine at 71 and totally happy. I had Gleason 8 and was encouraged to consider Radiation plus ADT since the oncologist felt even with surgery I could very well need the Radiation plus ADT afterwards anyway. I felt going with surgery first I knew I still had the radiation and hormone treatment at some point if necessary even if it was immediately afterwards. I am fortunate I did not need it. I knew as I got older regardless after treatment’s still would have ADT treatment’s. In your case consider surgery could put further treatment years down the road, regardless you still have third options, but if you don’t take an opportunity for salvage surgery now that window of treatment could close if further radiation and be left with additional radiation and ADT, until even radiation might become less available. I just believe regardless of your decision you are at a junction regarding salvage surgery at your age and encourage you to get consultation’s about it before rendering your decision.

  • Steve1961
    Steve1961 CSN Member Posts: 709 Member

    consult dr robert rieter at UCLA

  • VascodaGama
    VascodaGama CSN Member Posts: 3,751 Member

    @stellabell

    The reason for the refusal by surgeons in operating/dissecting the prostate after radiation treatment is for the fragility of the tissues at the area irradiated. There are risks involved with infections, fistulas and internal scars difficult to cure.

    However, we can see now more cases of success in surgery after RT.

    I totally agree with the comments of Wheel above.

    I would also add on the possibility in involving, post op, a Hyperbaric intervention (HBO) to assure cure of any tissues hard to become cured.

    The benefits of hyperbaric treatment (started gaining attention ten years ago) and is nowadays offered by doctors more often to reverse the side effects of radiation in affected tissues or in the cure of internal bleeding inflammations.

    I wish you luck and peace of mind in your next "move" if such becomes required.

    VG

  • Steve1961
    Steve1961 CSN Member Posts: 709 Member

    so dr rieter of ucla has done over 30 successful salvage surgeries.. I mean by that is that he was able to complete the surgery without having to stop. He said main issue would be damaged to a rectum. He felt he could not separate the prostate from the rectum he would abort the surgery and he told me has never happened so yes, you need to find a highly highly skilled surgeon and I happen to find one and I think it’s the best ever did. I wish I first but I got a second chance I didn’t even think about it. Yes, I’m dealing side effect. I do have some incontinent. I go through one to two pads a day to me. That’s not a big deal I can still get an erection as well so I think it’s a myth about not being able to do surgery after the radiation. It’s not done a lot but you need to find a surgeon that will do it and I happen to find one.