Prostatectomy Question? Side effects outweigh benefits?
My doctors told me they no longer due Prostatectomies as the side effects far outweigh the benefits !! But I see many of you are ??? And some are still getting them done at the Mayo Clinic and other Medical Centers !!!
So who is right and who is wrong here ???
I had 44 external beam radiation treatments!!
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I would never suggest a treatment. I am not a doctor. And the thing I've really become aware of is everybody situation is different.
Your current health status has a lot to do with it. My cancer was very, very aggressive, and I was way too young for Stage 4, therefore, being in good health, the treatment plan was aggressive as well.
I am blessed to have an awesome doctor. She will talk to me as long as I have questions. And....I have had a lot of questions. I usually make a list and take it with me. I will tell you this: Radiation was painless. The hormone treatments had some side effects but not too bad. Chemotherapy is horrible. I would compare it to being really, really hungover all the time, like 24-7. And of course, surgery really hurts.
Just keep on asking questions.
Perhaps people are too polite to say it, but any MD who says "we don't do prostatectomies anymore" is either misinformed, lying, or marketing (and perhaps more than one of those three?!) The MDs I'm looking for are able to talk about nuance, ambiguity, and relative values. They can discuss situations where certain treatment plans are preferable and situations where they are less desirable. They have experience as well as familiarity with research following clients who have had different presenting profiles and treatment plans over extended periods of time, including those for whom initial treatments proved inadequate and/or undesirable. They know not only their own opinions but those of their colleagues in the field, whom they respect. They have had patients die and grieved the loss. They have personally wrestled with tradeoffs between quality of life and length of life for people they care about, if not themselves. Those are the MDs I'm looking for, and they will generally be happy to provide the treatments they are best qualified to provide and familiar with colleagues who can provide the treatments they are not best qualified to provide. Any urologist of excellence, given the shortage in the field, has plenty of work and should not need to push people toward their own specialties. And an MD who is ethical in the consultation room is more likely to be ethical in the operating room, the radiology lab, and the chemo protocols, not to mention the billing protocols.
My research has shown me that at 3 months and 5 years the results are about the same. I decided that I wanted it out , had the RALRP July 18th. I can always follow up with Radiation therapy /ADT. after radiation you can't have surgery. It was an easy decision for me. no regrets.
I had a 3+3 in one core my urologist wanted to operate but I went to a radiologist at Nebraska Med Center for a second opinion he suggested watchful waiting I still with my Urologist but I only seen his assistant I am doing PSA ever 90 days a MRI and biopsy once a year
Thanks for your advice
Thanks for your comments
@philipsnowdon Totally agree with you rehab is fine as long as your will persist..but if you're starting on ADT the will and libido goes to zero. But i was prepared for that and forced myself to continue working with pump, hopping it will be in use one day soon. Massage is never give up hope.
My advice - if you have prostate cancer...find the highest quality, most skilled and well-reviewed urologist to do a single-incision DaVinci Robotic Radical Prostatectomy. Like my doctor told me when I asked about "active surveillance": you"have" prostate cancer and it is not going away...there is no need to watch and wait for two years, it is only going to get worse, so...I am taking your prostate...now." That said...while every surgery has its recovery issues, I still do wonder if I should have waited: my father lived to 99 years 10 months "with" prostate cancer and no treatment. But, he suffered greatly with horrible UTI's and sepsis his last five years. His doctor said he was now too old for the surgery, with which I agreed. My maternal grandfather lived to 96 "with" prostate cancer. It was diagnosed in the late 1970's and he lived until 1992 - roughly 15 years without many issues. He dies of Alzheimer's. He went for a monthly injection right into the prostate (ouch). My maternal uncle lived to within weeks of his 87th birthday and died of a massive cerebral aneurysm/stroke. He had his prostate removed about 10-12 years prior. They each had their issues, but none of them had my issues.
I just had my 6-month check up - PSA still < 0.1 ng/ml. But with "surgical margins" and cancerous tissue left in me, plus my diagnostic category/grade as a pT3b, my cancer has a very high probability of returning within five years. Had I left it intact and just done other treatments, I would at least be 100% continent and able to perform sexually. While I have regained 98% urinary continence, I have not had one erection in 6 months which is extremely depressing. You haven't shared your Gleason Score, your Decipher Test score, or the descriptives in your biopsy report, but I can tell you this: the Gleason Score doesn't tell you anything until your prostate is removed and the surgical pathology report is given to you. THAT is the tell-all report. My overly confident "we caught it early" urologist (Gleason 3 + 4 = 7 with only 6-10% of cells at "4" - so very close to still being a Gleason 6), was dumbfounded when my surgical pathology report came back with lots of other issues that threw me into the pT3b category. Yes...the post-surgical complications are unpleasant, but I read here that a lot of men do not suffer them at all, or for less time (we're ALL different). I still say get the radical prostatectomy...then you know the cancer is gone ("if" there are no "surgical margins" in the pathology report, which means your urologist left cancerous tissue inside of you, like mine did, which only happens 10-20% of the time). Good luck.
@philipbrachko
Same - July of 2024 - so far favorable results. I considered surgery to be a no brainer as well.
In Dec I was diagnosed with PC and Gleason 9 and I also have the BRCA2 mutation. I was lucky to find a trial near me - I participated in the NepTune trial for 6 months at UPenn prior to my surgery. The trial drugs were Lupron + Olaparib. My pathology report after surgery showed that my cancer on the left side was gone, and my cancer on the right side was greatly reduced and had no positive margins so the 6 month treatment was VERY successful. I'm 2 months since surgery and do have slight incontinence but its getting better all the time and expect it to be gone in another month. For me, the surgery risks were much less than doing brachytherapy or any other type of radiation. I was way more worried radiation side effects - they told me they would have to implant something inside of me to protect my bowels from radiation and when i asked about the radiation therapy causing cancer they said - yes that is always a possibility when doing radiation but that wouldn't prob happen until many years later. And most surgeons said its not impossible to do surgery after doing radiation but it makes it much more difficult. So for me, the radiation side effects greatly outweighed the risk of incontinence. Having said that, this is all a personal decision and neither is right or wrong. As one doc told me, there are actually TOO MANY options when it comes to prostate cancer which makes it tougher on decision makers. BUT, its good there are so many options because if one doesnt work there are others that may work.