Had my PET scan and met with the MO today, and the diagnosis is ... neuroendocrine prostate cancer. He claims this is a new cancer that originated in the neuroendocrine cells of my prostate, as opposed to mutations of my original prostate cancer.
The good news is now I have a treatment plan and my MO didn't give me an expiration date. One drug will be a recently approved immunotherapy drug and he said it's so new they don't yet know how long remissions can last.
I'll be getting a stent in my blocked ureter which should ease my kidney pain, then a port, and then chemo can begin. Also a brain MRI to look for anything the PET scan might have missed.
I'm happy about all this. It may be a sucky diagnosis but it explains my symptoms and might even explain the lytic bone lesions in my original diagnosis. I expect to get healthy, run a marathon, and then see what life brings next.
After I've had a chance to learn more about my diagnosis and treatment plan, the will be a lengthy blog post of course.
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tom67inMA
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As I'm reading more online, there definitely seems to be evidence that NEPC can arise from adenocarcinoma through epigenetic changes driven by lack of testosterone. But that usually takes years to emerge. My MO also has a couple patients that started right out of the gate with NEPC. Not sure I really want to argue with him about the genesis of this particular flavor of cancer, it's probably more productive to follow-up and make sure we genetically test everything we can to find more potential treatments.
As an aside, I expected half the forum to disagree with my MO
Basically, the biopsy indicated neuroendocrine of unknown origin, and an FDG PET scan showed uptake in the prostate and several other areas, but nowhere we didn't already know about from other scans.
Not SSTR2. I do have the report with all they tested for and will type it in when I have a keyboard.
The treatment plan looks like several of the immunotherapy trials you linked to. I'm very impressed at my MOs ability to come up with treatments that seem to be ahead of SOC and get the insurance company to pay for it. I've already had early abiraterone after early docetaxel, and the only trial I know looking at that is PEACE-1 which hasn't reported any results yet that I'm aware of.
Thanks. Once again I'm drinking from the fire hose of cancer information and it's going to take a while to assimilate this all in my head. This sounds a lot more promising than pig enzymes and alkaline diets which have also been suggested to me in the past
Hi tom, keep fighting! I’m so impressed you did a half marathon while on ADT (read your bio). If I lift weights I’m really tired the next day. How do you do it? How did you feel the following day?
Not sure how I did it myself. I did run 6 half marathons before diagnosis so it wasn't new for me. I just ran and walked a lot during and after chemo and took bupropion which helps fight fatigue (and I was on before diagnosis). Didn't need to wait for the next day, I was exhausted and napped just a few hours after the race. Used to bounce back a lot easier.
Hello Thomas, Keep your chin up but be careful you don't trip. I just want to mention the urinary stent you'll be getting. I had many many urinary stents (in and out) up my willy and it is really a nothing burger. You must take an antibiotic each time (in and out) and mine used to be changed every 3 months. I THINK they have newer ones that last 6 months. Take care of yourself and I look forward to hearing your successful outcome using an immunotherapy drug. Remember my lung melanoma is being treated with the Keytruda immunotherapy drug and it's working.
Interestingly, the drug cocktail I'll be getting appears to have been approved for small cell lung cancer but not yet for NEPC. My MO says the cancers are very similar.
Your attitude impresses me brother .. You’ve got some tuff stuff ahead . I had stints ,they helped me while RT and adt shrank tumors blocking my urethra . I hope they help you out.. I’m pulling for you to regain some ground and push the pc away . 🙏
The bone lesions are one of those areas where "I'm not a doctor" certainly applies. Prostate cancer is usually blastic, but I had a mix of lesions at diagnosis. That's unusual but not unheard of. Me and the doctors were happy that my PSA, ALP, and pain levels were dropping with treatment and went on with life. Now I wonder if it was an early sign of NEPC. There's no way to know for sure short of biopsying every hotspot you see on a scan, which would be painful and barbaric.
I would describe cancer as a game of probabilities. You look at blood counts and scans and biopsies and symptoms and make a best reasonable guess as to what's actually happening. In my case, the original prostate biopsy confirmed prostate cancer, with an elevated PSA and multiple bony lesions which screamed metastasized prostate cancer. Each individual lesion may or may not have been active cancer, but the pattern of so many of them scattered around haphazardly in areas frequented by prostate cancer means most probably were cancer.
If I recall correctly (these doctor visits can be a blur) my wife asked if the NEPC could have been there from the start. My MO couldn't answer that, but did say that with a PSA over 200 there was no reason to suspect it at the time.
My dads initial PET scan revealed mixed sclerotic lytic lesions all over the bones.
I remember the doctor telling me can’t confirm prostate cancer yet, since he has a mix of lesions. So since then I knew a mix is not so common for Prostate ?
Later however the bone marrow biopsy confirmed Adenocarcinoma and I never thought about it again.
But I’m not sure if the doctors would be concerned about this now? What must we watch out for?
My memory is telling me that 80% of prostate cancers are all blastic lesions, but only about 1% are neuroendocrine from the start. So most cases of mixed lesions won't be neuroendocrine.
It's so difficult to figure out what to follow up on and what to let go. How is your dad feeling? My first symptom that something wasn't right was a strange sensation when urinating, which later turned into pain. Of course, that didn't concern the doctors, and my urine stream was getting stronger, so we all thought it was the cancer dying off, or a side effect, etc.
Thanks Tom and best wishes and prayers for your continued journey!
Your optimism and perseverance inspire many. I am new to the site and in my first phase of treatments after an aborted prostatectomy. It’s helpful to hear so many options for intervention are available if/when needed. Most importantly your example of staying active through treatment is motivating me to keep doing the same!
Thanks Rich, I'm happily paying forward the inspiration that was given to me at my original diagnosis. We have members here that have ridden their bikes many miles to chemotherapy appointments, or run marathons during chemo, etc. The science is starting to show that this works by helping circulate the treatments deep inside tumors, keeping normal cells healthy to better withstand treatment, and also helps mitigate side effects.
I'm also the beneficiary of some very recent advances in treatment. If all this had happened to me just five years earlier the outcome might have been much different.
Tom you’re great bro. Take care and my very best to you. Love your positivism, you’re a positive role model. The way you handle your affairs makes me look at mine with a different perspective. Thanks 🙏
My admiration for your positive approach towards your situation. You have a definite control of your mind and not let the PC disturb or distract your positive attitude. Your attitude is half the battle won over the PC.
Will pray for you in your new treatment. Do keep us updated on your progress. God bless you.
Yes, and accurate news is better than good news. I'm actually looking forward to chemo. It seems a lot of patients with symptoms view chemo as a good thing.
Hi Tom! You are an inspiration. Just wanted to add my 2 cents. My hubby (age 47) was just dx with NEPC last summer. It can be difficult to stay on top of, but it looks like you are in very capable hands. They do treat it like a small cell lung cancer. He completed 6 cycles of carboplatin+etoposide+tecentriq (immunotherapy). He has tolerated everything fairly well. They are continuing with the immunotherapy for now. Please keep us posted and stay strong!
That's the exact same cocktail I'm getting. My MO was very hopeful about the immunotherapy, and couldn't give an upper limit on how long it might be effective for. He had an 85 year old lung cancer patient life for 5 years (three off treatment) before dying of a heart issue. Good luck to your husband!
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