44yr PSA180 Gleason9 non-metastatic. Surgery or Treatment?
I am 44 yr old, Navy Veteran, just got diagnosed with prostate cancer. First rectal exam showed enlarged prostate, followed by PSA180. Biopsy showed 9 out of the 12 samples with cancer cells (most of them Gleason8 or 9). MRT shows no spread. CT with contrast shows no spread. I just got today my bone scintigraphy. Initial results show no spread. Father had prostate cancer last year, therapy, seems to be cured. Mother has breast cancer and stomach cancer (surgery and treatment) now cured.
My big question now: should i go for complete prostate removal or should i go with the various other treatments?
I am currently being seen for this at the University Clinic of Heidelberg in Germany.
Appreciate all the support and stay positive.
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
Lots of comments here but I want to underscore that there is a radiation technique equivalent to surgical removal. It's ablative radiation, definitive, (not pinpoint) that destroys the prostate. I will be having it starting late October. Here at Duke they do this and it is inside an intensive ADT using both Orgovyx as well as Abiraterone and I am on them now. It's a ride, but the benefit is that I should be done in 6 mos. You might talk to your doctors about it.
I just found out that the hospital in my city has IMRT with dynamic VMAT, as well as RapidArc. Thought on this treatment type?
Steve, can you give me some insight as to what you’re experiencing taking the ADT cocktail? How long have you been on it? when you say quite a ride what actually do you mean?
Thanks
You can add this to my previous offering of advice: Do not start or opt for radiation "first". When I wanted to discuss my options once I knew my Gleason Score, I asked about "active surveillance" vs radiation vs prostatectomy. My urologist was quite opinionated as follows: He said: "You 'HAVE' cancer...there is no point in active surveillance...you are just giving the cancer more time to spread and present more problems for the typical 2-year active surveillance timespan. I never recommend active surveillance unless the patient is barely a Gleason 6." Regarding radiation he said: "you never want to do radiation 'first', because that eliminates an optimal 'second' course of action. Radiation basically turns your prostate to a scarred, walnut-sized chunk of concrete. You can't have a complete and successful prostatectomy 'after' you have had radiation. It becomes extremely difficult to remove the scarred chunk of concrete. I know this for a fact because I know someone who did radiation first. His doctor told him that he is no longer a candidate for prostatectomy. He suffers massive pain at ever attempt to urinate, often which ends in not being able to actually void urine. "You do radiation 'after' prostatectomy, and only if/when needed - and hopefully you won't need it if the prostatectomy was thorough and successful." So, that left radial prostatectomy. With my Gleason score of 3+4 = 7 with just 6-10% of my cells being grade 4 in the second-pass microscopic examination, my urologist still was firm, saying: "I'm taking your prostate...it is your best option." So, I had the DaVinci Robotic-assisted Radical Prostatectomy. I am glad I did because the Gleason Score did not reveal what the surgical pathology report did on the entirety of my prostate tissue. I had EPE, surgical margins, Cribriform Glands, and left seminal vesicle invasion, all adding up to a more serious pT3b cancer category. So, my advice, based solely on my experience and my urologist's advice, is that "radiation first" is a bad decision if you later decide to have the prostatectomy. Go with prostatectomy "first", then radiation "if/when" you need it later.
Sure. And I wouldn't disregard the comments provided here thoughtfully by rlpostrp arguing for surgical removal. They're a good argument for that approach. And in that context I should mention that I have AML (Acute Myeloid Leukemia) in remission after a bone marrow transplant Feb 2023. My immune system has not recovered yet, getting slowly better. One of the arguments for me personally to choose radiation over surgery was avoiding infection etc. My own Urologist who does many surgeries said I should go with radiation as did my bone marrow team after a two week consideration using me as a case study. Radiation isn't preferred for marrow transplant patients because of the proximity of one of the largest marrow factories and of the intestines. But they unanimously voted for radiation. They didn't say but I know that they also are aware that my now nearly famous resiliency during many kinds of Chemo and so on, reduced my remaining reservoir of resiliency. Surgery has quite a challenging recovery usually. That's Googlable. Much less (but having its own aspects) for radiation.
General arguments for the radiation approach include clinical trials that concluded the comparative results of surgery versus radiation are equal. But I digress.
YOUR QUESTION
I've been on this ADT cocktail for 6 weeks. The side effects which are intermittent, are four things: 1) fatigue, 2) nausea, 3) mental fog, and 4) hot flashes.
#1,2,3 I'm used to f pm my AML treatment and I am still taking a Chemo from that, Same symptoms except the flashes. The benefit is I know how to handle them. But the effects are additive to the symptoms I already had.. I have an occasional bad day when they hit me harder especially the nausea which is my least favorite. But most days I'm still doing my things, fewer due to fatigue and energy, but still doing them. That's the "ride" I mentioned. From what I see that others write, some experience these symptoms at a lesser level, or one or the other is more prominent. I don't mind the flashes at all, some people do. And so on. Hope that helps.
At UCSF they do radiation on a significant number of people as the first treatment. Rick Davis who started ancan.org Had radiation there 17 years ago. He was a Gleason eight and his cancer never came back. This doctor just puzzles me. Yes, if you are 60 or 50 maybe a prostatectomy makes the most sense, Even if you can never get an erection after it. If you’re in your 70s, then radiation makes a lot more sense since you’ve got a much shorter lifespan. My brother is 79, He was treated with SBRT radiation when he was 75. His PSA has not been rising much and he didn’t have a lot of side effects from the radiation.
The advice that you must have a prostatectomy just makes no sense For people who have minor cases of prostate cancer that can easily be treated.
20 to 40% of patients who have a prostatectomy end up having to have further treatment.
The recurrence rate after SBRT for prostate cancer is generally low, with some studies showing a biochemical failure (a sign of recurrence) in about 20-30% of patients at 2 to 4 years, while other studies report higher cure rates of 95-98% within five years. A specific percentage for patients needing further treatment after SBRT depends on the cancer stage, patient risk factors, and the definition of "recurrence" used in a study
Read about It here
https://ecancer.org/en/news/9170-research-shows-98-percent-cure-rate-for-prostate-cancer-using-sbrt#:~:text=%22The%20current%20form%20of%20radiation,he%20was%20evaluating%20treatment%20options.
Hi Steven,
I received an injection of lupron in the hip (no pain during or after the injection) every three months for 2 years. In addition, I took a daily oral dose of abiraterone (1000mg) and prednisone (5mg). My PSA dropped to undetectable 3 within months of starting ADT and has remained there ever since (with the exception of a single test that was taken shortly after a 20+ mile mountain bile ride which registered .04). I had proton therapy in conjunction with the ADT. While I experienced most of the side effects attributable to the lack of testosterone, I was able to continue my daily routines with very little impact. On days with prolonged physical exertion, I would tire more easily and scheduled an afternoon nap in when possible. My testosterone levels returned to pre-treatment levels about a year after the end of ADT. Throughout treatment, I followed a largely plant based diet which included 1.2g/kg of body weight of plant based protien foods (not powders or other forms of supplements). I took the doctor recommended calcium and vitamin D supplements and included both tofu and soy milk along with 10 cups of fruits. veggies, nuts, seeds and whole grains each day. I did 1 hour of cardio and resistance training a minimum of 3 days per week from home with dumbells. I signed up for a live virtual class which created the expectation that I would be there every day (they would text me if I was a no-show). The class got me to exercise even on days when I just didn't want to do it. I was not on bone strengtheners and my DEXA scan results showed stable or increasing bone density compared with baseline throughout treatment.
NCCN Very High Risk Gleason 9 prostate cancer is very agressive with high percentages both cancer specific mortality and all cause mortality. While I felt nervous about the treatments that I would need, I also knew that if I followed the recommended treatments in the NCCN guidelines that are written, updated quarterly and followed by the majority oncologists at the best cancer centers in the country, I would be neither over treated or under treated and have the best chance of a favorable outcome and long healthy life. This belief was substantiated by the Stampede Trial data from 2018 and 2021. My doctors, all at The UW/Fred Hutchinson Medical Center in Seattle, agreed that no deviation from the NCCN guidelines would be smart or appropriate given my very high risk PCa classification. With my uPSA remaining undetectable, having had little to no disruption to my life (other than some initial significant fear) and no remaining side effects from treatment, I am very happy with my treatment choices as well as the care I received at UW. If I had it to do all over again (PLEASE NO!!), I wouldn't do anyththing different.
The following link is to a very digestable article about the results of the Stampede Trial and the benefit of two years of ADT+abiraterone to radio therapy for high risk disease. By virtue of being Gleason 9 with cribriform, I was considered to be in the NCCN category of Very High Risk and I believe you are too, but ask your doctor.
https://dailynews.ascopubs.org/do/next-generation-androgen-signaling-inhibitors-do-results-stampede-trial-inform-therapy#:~:text=*%20Results%20from%20the%20STAMPEDE%20trial%20of,era%20of%20PSMA%2DPET%20imaging%20in%20high%2Drisk%20disease.
I wish you all the best with your treatment planning! Please keep posting so that we may all learn from your experience and walk beside you as your journey unfolds.
Bill
Popping into the conversation and not intentionally trying to steer this off topic @steveduke. Just wanted to welcome you to Connect and as a fellow AML/BMT survivor (and BMT Mentor for various organizations) let you know we have an active, helpful and hopeful Blood Cancer & Disorders Support group and BMT/SCT, CAR-T Transplant group). Here are a couple of links should you like to share your story with us.
~My bone marrow transplant story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
~Snapshots of hope: Life on the other side of transplant https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
I am sorry to hear that you’ve now also been diagnosed prostate cancer. You’ve had quite a rough couple of years, as if AML/BMT wasn’t enough! Wishing you success in your treatments. You’ve found a new family of support here in Connect. Will you join me over in the BMT group?
Pressed for time at the moment but yes I will - and thank you!
Hey gem1128, Don’t look back and kick yourself for choices you made. You did the right thing.
If you chose radiation and your cancer extended beyond the capsule, figuring the margins would have been educated guesswork no matter if they used Cyberknife or MRI guided treatment.
If the cancer extended beyond the target area it would have been missed and you’d be right where you are now, but with less options.
If EBRT was used it might have had a better chance, but without ADT, who knows??
Hopefully your radiation team will kill this thing once and for all. And be SURE they plan to radiate the pelvic nodes as well. No matter what the PSMA shows or what your RO ‘thinks’, just be sure they target everything they possibly can. Best,
Phil