Very quick update - NEPC: Had my PET... - Advanced Prostate...

Advanced Prostate Cancer

22,387 members28,151 posts

Very quick update - NEPC

tom67inMA profile image
52 Replies

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.

Written by
tom67inMA profile image
tom67inMA
To view profiles and participate in discussions please or .
Read more about...
52 Replies
dougnola profile image
dougnola

You’re an inspiration, Tom. Keep living and moving! ✌️💪🏃‍♂️

cesces profile image
cesces

"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."

On what evidence is he deducing this?

tom67inMA profile image
tom67inMA in reply tocesces

No specific evidence. He just generally believes neuroendocrine cancers start from normal neuroendocrine cells, not from adenocarcinoma cancer cells.

tom67inMA profile image
tom67inMA in reply tocesces

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 :-)

cesces profile image
cesces in reply totom67inMA

"there definitely seems to be evidence that NEPC can arise from adenocarcinoma through epigenetic changes driven by lack of testosterone. "

That's nice. Damned if you do and damned if you don't. Lol

greatjohn profile image
greatjohn

Keep up the running and the infectious optimism!

gJohn

LearnAll profile image
LearnAll

A man like you is praiseworthy because he teaches fellow humans being how to make lemonade when life gives you lemons . i applaud you..my friend!

How were they able to establish that its indeed neuroendocrine type of PCa ?

tom67inMA profile image
tom67inMA in reply toLearnAll

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.

Cisco99 profile image
Cisco99

Thanks for the update Tom. It is better to have a theory that makes sense. +

Tall_Allen profile image
Tall_Allen

Here are some more clinical trials:

pcnrv.blogspot.com/2016/12/...

Did they stain for SSTR2? It's unlikely, but if positive, there's a good drug for that.

tom67inMA profile image
tom67inMA in reply toTall_Allen

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.

Tall_Allen profile image
Tall_Allen in reply totom67inMA

You can ask them to stain for it.

tom67inMA profile image
tom67inMA in reply toTall_Allen

Tall_Allen , LearnAll , here's what the biopsy report had to say:

High grade neuroendocirne (small cell) carcinoma; see note:

NOTE: Immunostaining of the tumor cells shows the following:

Synaptophysin, Chromogranin (Focal), TTF-1 (Focal), Keratin AE1/AE3, and CAM 5.2 are positive.

KI-67 shows a high proliferative rate.

CK7, CK20, CD45, PSA, AMACR, CDX2, S-100, P63, SOX-10, and MART-1 are negative.

The present results do not support a definitive tumor origin. Clinical correlation is recommended.

Addendum#1: Immunostains for GATA-3 and NAPSIN-A are negative (satisfactory positive controls) diagnosis remains unchanged.

LearnAll profile image
LearnAll in reply totom67inMA

https:pubmed.ncbi.nim.nih.gov/10447001

Acquisition-of-neuroendocrine-characteristics-by-prostate-tumor-cells-is-reversible

.

I came across this study about reversibility of NE status.. its very technical article.

I was having difficulty copying and pasting .Sorry.

tom67inMA profile image
tom67inMA in reply toLearnAll

Interesting. Cyclic AMP causes the NE differentiation? I believe that's a product of strenuous exercise. Hmmm...

Tall_Allen profile image
Tall_Allen in reply totom67inMA

As I said, ask for SSTR2.

tom67inMA profile image
tom67inMA in reply toTall_Allen

What drug is available if it's positive?

Tall_Allen profile image
Tall_Allen in reply totom67inMA

Somatostatin analogues and Lutathera. Please read this:

pcnrv.blogspot.com/2016/12/...

I think Ga-68-DOTATATE PETs are more widely available now.

tom67inMA profile image
tom67inMA in reply toTall_Allen

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 :-)

Danielgreer profile image
Danielgreer

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?

tom67inMA profile image
tom67inMA in reply toDanielgreer

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.

j-o-h-n profile image
j-o-h-n

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.

Good Luck, Good Health and Good Humor,.

j-o-h-n Thursday 01/30/2020 8:49 PM EST

tom67inMA profile image
tom67inMA in reply toj-o-h-n

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.

j-o-h-n profile image
j-o-h-n in reply totom67inMA

Well I hope it works as good as the Keytruda...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/30/2020 9:20 PM EST

depotdoug profile image
depotdoug in reply toj-o-h-n

It’s working is good news!

monte1111 profile image
monte1111 in reply toj-o-h-n

And a nothing burger is way better than a beyond meat burger.

Mikeski profile image
Mikeski

Keep on keeping on Tom!

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 . 🙏

Cheerr profile image
Cheerr

Hi Tom, good to know you’re taking it positively and ready for the next set of treatments.

What did you figure out about lytic lesions in the original diagnosis ?

tom67inMA profile image
tom67inMA in reply toCheerr

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.

Cheerr profile image
Cheerr in reply totom67inMA

Thanks Tom.

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?

tom67inMA profile image
tom67inMA in reply toCheerr

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.

depotdoug profile image
depotdoug

Great news my friend. Keep on pushing running on. We love your attitude.

Rich_Rad profile image
Rich_Rad

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!

Wichozene and Wokeye

(Lakota for Good Health and Good Help)

Rich

tom67inMA profile image
tom67inMA in reply toRich_Rad

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.

ctflatlander profile image
ctflatlander in reply totom67inMA

Tom, You are an inspiration. It must be relieving that you now have a plan and a good medical team. Are you going to Dana? Bob in VT

tom67inMA profile image
tom67inMA in reply toctflatlander

I'm going to an MO who has his own practice on the campus of Leonard Morse hospital in Natick, but he use to work at Dana-Farber.

jtspitfire profile image
jtspitfire

Wishing you many more successes!

larry_dammit profile image
larry_dammit

Hang in there warrior, this monster s a awful thing 🙏🙏🙏🙏

Haniff profile image
Haniff

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 🙏

Haniff

bellyhappy58 profile image
bellyhappy58

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.

Blueslover profile image
Blueslover

Good luck

SeosamhM profile image
SeosamhM

Once more unto the breach.... I'm glad you can put a tentative name to your enemy. We are all pulling for you.

dadzone43 profile image
dadzone43

There IS a relief in getting some clarity, even if the new is not the best you could get. Thank you for your participation and for leading the way.

tom67inMA profile image
tom67inMA in reply todadzone43

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.

dadzone43 profile image
dadzone43 in reply totom67inMA

A mixed bag to be sure. Good luck. Keep on sharing.

Dachshundlove profile image
Dachshundlove

Your light shines brightly— may it continue to for a very long time.

There exists very good chemotherapy treatments for NEPC. I hope the targeted treatments have an awesome effect in your case!

RonnyBaby profile image
RonnyBaby

You have a good positive attitude, which is admirable, considering everything you've been thru.

Wishing you the best as you continue to manage what's thrown at you.

Maybe there's some hope in some new therapies.

Bird8 profile image
Bird8

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!

tom67inMA profile image
tom67inMA in reply toBird8

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!

Doseydoe profile image
Doseydoe

Tom, just read your story. What a journey your on and your never quit attitude is inspiring, thoughts and prayers 😎

Dachshundlove profile image
Dachshundlove

I read your amazing blog post— you remind us once again,

We cannot choose what happens in life, only how we respond to what life hands us.

Not what you're looking for?

You may also like...

Prostate cancer morphed into NEPC

I was recently blindsided by my "under control" prostate cancer, turning into High Grade...
CharlieBC profile image

16-ish Month Update

In two days it will be 16 months since my original diagnosis. October 19, 2018 was when I was...
tom67inMA profile image

NEPC -Chemo not working

So my father just had his third round of Jevtana and carboplatin. We are all highly suspicious that...

NEPC Targeting

Some responses to my earlier posts suggested I might want to think twice about persueing Lu-PSMA...
Javelin18 profile image

Update

Haven’t posted in awhile. Diagnosed in December 18 with PCa with 6 Mets to bones including sternum,...
Altamontt profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.