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Newly diagnosed and looking for treatment advice.
Prostate Cancer | Last Active: Oct 11 12:12pm | Replies (71)Comment receiving replies
Hello. I am a 72 year old retired Radiologist diagnosed with G9 prostate cancer at age 68. Previously healthy my entire life. PSA had been vacillating between 4-6 for several years but when it jumped to 7.5 (it's the rate of rise year to year more than the absolute number that's important) I decided to have a biopsy. MRI revealed a 1 cm enhancing lesion which was the G9 cancer on biopsy.
Having practiced medicine for many years I had numerous contacts in the urology, RO and MO fields. I spoke with numerous physicians and did my own reading. I opted for surgery for several reasons: 1) like an orthopedic surgeon commented, I had a cancer in my body and I wanted it out 2) radiation takes time to work and I didn't want to give my cancer a longer chance to metastasize 3) surgery enables the pathologist to completely examine the tissue and determine extent of disease and any nodal involvement 4) should the cancer recur locally radiation is an excellent option to potentially eradicate the disease; surgery after radiation is very difficult due to the extensive scarring from the radiation 5) radiation as a primary treatment also entails potential complications of ED and incontinence-just delayed.
My surgery went fine. I had seminal vesicle involvement, not a good sign with a G9. Six months after surgery my PSA bumped to 0.37. A PSMA PET scan showed a single met to my spine (T8). It was successfully treated with radiation (SBRT). Unfortunately, my PSA continued to rise to 4.5 in another 3 months. That is a very rapid doubling time and indicates a very aggressive tumor. Another PSMA PET scan revealed a positive node in my pelvis but eradication of the tumor in my spine, so mixed results. Now I needed systemic therapy. Did another round of extensive research and opted for treatment with a very experienced MO at Johns Hopkins. He immediately started my on triple therapy (Lupron, Darolutamide and Taxotere chemotherapy). My PSA became undetectable after the second round of chemo. I had 4 cycles of chemo and the Darolutamide was discontinued after the chemo-3 months. He kept me on the Lupron for one year. He also suggested I have full pelvic radiation which I did (37 treatments). He told me the radiation should start between 8-12 weeks post chemo as that was when any residual cancer cells were most susceptible to being killed by the radiation.
He stopped the Lupron after one year and continued to monitor my PSA and testosterone every 3 months. My PSA remained undetectable by my T never recovered. A year ago ( about 2 years post chemo) he elected to put me on TRT (testosterone replacement therapy) under the guidance of an endocrinologist. I remember his comment "You are a 70 year old man living in a 90 year old body without testosterone". During the 2 years my T was near 0 I experienced fatigue, hot flashes, complete loss of libido, muscle loss, joint pain and mood alteration/depression.A bone density test revealed I was developing osteoporosis.
I have been on T for a year now and it is a game changer. Hot flashes and fatigue gone. Muscle mass back. Libido like a 30 year old. Depression/mood swings gone.
My PSA remains undetectable. MY JH MO said there is a 50% chance I am "cured". If the cancer returns it will be a "kinder, gentler cancer", less aggressive and amenable to treatment. He said the triple therapy killed the aggressive cancer clones.
I realize that the short course of Darolutamide and Lupron is controversial. And the TRT is even more so. But my MO is heavily involved in prostate cancer research (Director of the Brady Urologic Cancer Institute at Hopkins) and holds professorships in MO, Molecular Biology and Urology at JH. He only treats selective patients with limited metastatic disease (oligo). I have complete faith and trust in him and his NP.
Quality of life is very important to me. Sure, I don't want to die from cancer but I don't want to be miserable either. Treatment of prostate cancer is rapidly evolving.
As an Interventional Radiologist I biopsied virtually every organ/node/bone in the body over my 40 year career (including the prostate gland). So I can say with authority that a needle biopsy only samples a very small part of the gland and can easily miss the more aggressive tumor. So a diagnosis of, say, a G7 (3+4) is the minimal disease in the gland; it could potentially be a G8 or 9. Won't know unless a pathologist looks at the entire surgical specimen.
I am all for collaboration with the medical team to determine course of treatment. After all, it's our bodies. But with all my medical knowledge, experience and "research" on prostate cancer, my knowledge of the disease and treatment was just a fraction of the real experts that treated me. That's why I believe it's dangerous for some people to try and direct their own treatment plan based on what they read on the internet. It's too complicated. Each person's disease and medical history is unique. Best to go to a Center of Excellence and get several opinions. Trust your treating physician.
My urologist recommended a book "Life after Prostate Cancer" by Vanita Gaglani available on Amazon. She has decades of experience as a physical therapist treating thousands of men with incontinence. The book is detailed and excellent to help men regain continence. It's much more than simply doing kegels; diet, pad usage, core training, adequate hydration etc are important as well.
Good luck to you and everyone on this journey.
Replies to "Hello. I am a 72 year old retired Radiologist diagnosed with G9 prostate cancer at age..."
@retireddoc
This comment about a 70-year-old man and a 90-year-old body is just baloney.
I’ve been on ADT for almost 9 years.
I’m 77 (78 in a month) and run around the track twice a day a mile. I have no fatigue, yes I don’t have much of a sex drive but if I see a sexy looking girl, I feel it. I go to the gym three days a week and my muscles have been building up, When I started I couldn’t get off the ground now I can without any help. Nobody that I know has any idea I have prostate cancer unless I tell them. They also don’t realize how old I am.
I was at the gym on Monday and walked over to a device I used to do situps. There was a guy using it who looked a lot older than I do. He took a break and I used the device. Did about 50 situps. He came back and we talked for a minute. He was 78 and I said oh I will be in a month.. He made a comment about how young I look.
Being on ADT is not going to make everyone feel like they are 90. I know my testosterone is less than five, It doesn’t stop me from being very active.
Because I have BRCA2, I can’t have high testosterone without having serious problems. In my case, I don’t really need it.
I wish you luck with your really good results after your treatments. I do know other people with Gleason nine that are 20 or 30 years past treatment. I know them because they come into the advanced prostate cancer meeting I attend, and they have reoccurrence after that many years.
@retireddoc that’s an amazingly scary time with so many chemicals but obviously you came out on top. I read everything that’s research or medical papers understand a lot of it. With your knowledge and experience I can see how you were able to understand all you did and a great team behind you. I am still looking saw one oncologist gave appointment with a cancer center trying to see options opinions etc. currently on Bicamultide 50 mg a day doing fine Gleason 8 still have my prostrate and trying to figure it all out. I go to gym , eat healthy 72
@retireddoc Wow - your story has, given your profession and knowledge, for me, genuine impact and I so appreciate you sharing it.
I’m a G8 with Cribriform 4, Perineal invasion but PSMA PET indicating no detectable Mets. I am having (at my medical team’s advice) definitive radiation to destroy the prostate in the middle of a newer “intense” version of ADT which has daily Orgovyx plus Abiraterone. The arguments you articulated so well were in my mind but, I had a bone marrow transplant Feb 2023 for AML, adverse mutations and accompanying prognosis but which I’ve defied so far, remission and no relapse as of this writing. I had a LOT of extra abalative Chemo before the transplant at age 70 when I was very fit. Side effects have been a lot to deal with, cGVHD of the gut along with several other things all of which the various specialists have pointed to the Chemo. But I am here and so grateful to be so.
So when faced with the decision between Radiation versus surgery my ABMT people put a hold and considered the implications of radiation (probably with or without the surgery) near the hip bones etc, and my new marrow. There was nothing helpful in the literature or the experience base they could find (several of them have Hopkins backgrounds) so they made a mini case study of me and after 2.5 weeks, my caregiving doctor came back to report a unanimous but close call recommendation of radiation. I know directly from my Neurologist that, as you said “ You are a 73 year old man living in a 90 year old body.” Several of my organs have developed issues, with the pancreas and adrenal glands mostly throwing in the towel, but with cardiovascular and spinal effects as well. My immune system even at 3.5 years out, has not ‘reconstituted’ so I am still a bubble boy with significant limitations for any event where there would be a crowd attending regardless of having the sniffles etc. As I understand it, they deemed surgery as a higher risk, also taking into account my continual rebuilding of muscle mass after repeated bouts of cGVHD, ongoing steroids etc. I am doing what they recommended, armed with a fairly alarming set of risk factors. The biggest was the silent question (but which my ABMT doctor had the courage to pose) “[your prognosis is still short], you could simply wait on the prostate cancer treatment.” I went ahead and as she said to me “whatever happens, we will take care of you.”
So it’s game on. The intense ADT has been a thrilling ride and I always hated roller coasters. I hate nausea and brain fog when it rolls in. The hot flashes I don’t mind, it has been amusing on occasion but I do low impact aerobics and get hot and red faced from that, so. But whatever. Radiation prep next week and schedule to follow.
For each of us there are forks in the road and thoughts, as Robert Frost intoned, about the road not taken. I am wishing you the best in (like me) your much older physical body, mine from many rounds of Chemo and continuing maintenance - now the ADT meds which alarmingly are labeled “Chemotherapy” by the specialty pharmacy. Same effects as when I was in the Hem/Onc unit for 2+ months so I believe they’re right to designate them so.
I wish you all the very best on your road. Perhaps even though we took different forks, we may run into each other here or elsewhere. I hope so. Thank you for sharing.
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@retireddoc ,
Thanks, and wow! I appreciate the detailed response. I'm not completely ruling out surgery. Still considering all my options.
I hope you enjoy the rest of your retirement. My son is a newly minted radiologist in his fellowship.