Small cell prostate cancer diagnosis after TURP surgery

[Mc160587]

Does anyone have any advice on this type of cancer?

[ctarleton]

The first thing I would consider would be a second opinion to further confirm these pathology report findings. Here's a link to one of the best in the world, — Jonathan Epstein, M.D. at Johns Hopkins:

pathology.jhu.edu/departmen...

If the small cell prostate cancer findings are confirmed, the Information and the References and Authors listed at the following link may be a good place to start learning and consulting. A run-of-the-mill local urologist or oncologist may not have the background and experience to serve you well for this rarer prostate cancer type. Check with your current doctor and with your insurance about getting a referral to the best specialist in this type of prostate cancer that you can. It may help focus your treatment plan, and also get you closer to finding any relevant Clinical Trials in the future.

am.asco.org/daily-news/trea...

Best of luck to you. Keep us posted.

Charles

[Mc160587 in reply to ctarleton]

Thankyou Charles

[Dan59 in reply to ctarleton]

Epstien at Hopkins has been the best pathologist for a long time, he confirmed my GL10. I think the original Urologist would send a specimen to Jon Epstien at Johns Hopkins and the cost would be about $200 and well worth it.

[Dr_WHO]

Sorry that you are here. Like you I have a rare and agressive form of prostate cancer (Ductal). It is critical that you find a team that has treated small cell. I ended up having to provide inyto my team about Ductal. You definitely need to do your research and get the best medical team you can find. Do not be become discouraged on what all you read (like I did fat first). The below are some references. In part, they cover a review of the literature for small cell.

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

emedicine.medscape.com/arti...

Please know that we are all fighting with you.

[Mc160587 in reply to Dr_WHO]

Thankyou dr who!!!

[Hidden]

I would also confirm the diagnosis. If it is small cell, the ADT treatments that are pretty much standard with prostate cancer won't work for you. From what I know, chemotherapy or radiation (depending on how widespread) will probably be the treatment plan.

[Mc160587 in reply to Hidden]

Thankyou Gregg57

[Mc160587]

Can anyone give me longevity expectations?

[Hidden in reply to Mc160587]

I expect to live a long time.Thanks for asking.

[j-o-h-n in reply to Hidden]

DITTO

j-o-h-n Thursday 11/16/2017 1:37 PM EST

[Hidden]

You can do searches for this online. But at this point, I don't think you should be thinking about OS stats, just on getting the best treatment possible. You are an individual not a statistic. Really try to just take one step at a time, one day at a time. It will help you from falling into the abyss mentally.

Do you have any indication of how widespread the cancer is? Any metastases? Have you had any imaging done?

[Mc160587 in reply to Hidden]

I do. Monday I will have the results of everything and I can present them to you.

[Hidden]

My impression is that "small cell" is related to the neuroendocrine "variant" of prostate cancer. Univerisity of Iowa seems to be the place that is looking into medicines being used in Europe - a molecule that wears an explosive vest, or something like that.

The buzzwords are PRRT at SPORE.

uihc.org/neuroendocrine-can...

PSA is not helpful - is what I remember.

Those type of cells do not express PSA even when healthy. Those cells are where the nervous system plugs into the prostate. What for, I don't know.

[Mc160587 in reply to Hidden]

Thankyou Martingugino!!

[Hidden in reply to Mc160587]

If PRRT is in the ballpark for you, I just ran across by accident the report of someone from a year ago on his experience with PRRT in Europe.

healthunlocked.com/advanced...

[Mc160587 in reply to Hidden]

Thankyou Martin Gugino did you travel back and forth to Germany for treatment?

[Hidden in reply to Mc160587]

That was another person's report, and yes they did, so it seems.

[Mc160587 in reply to Hidden]

I have family in Italy looking into it for me. I should know something within the week.

[Mc160587 in reply to Hidden]

Thankyou for this article

[BigM62]

What is your dx, treatment, and PSA history?

[Mc160587 in reply to BigM62]

I went and had a TURP procedure done because of urinary issues. In the same week I radiation done on my for some type of cancer growth and pain.

I went for a follow up to my urologist and was given a piece of paper stating : high grade Neuroendocrine carcinoma. (Small cell carcinoma)with associated high grade prostatic adenocarcinoma. Come Monday we will be discussing starting chemo and possibly radiation based on the severity of cancer spread. PSA has been low throughout the last year. Highest was 3.0 and currently I am at 0.19 after TURP surgery and radiation. I hope this helps. If you would like more info I will do my best to provide.

[Hidden in reply to Mc160587]

Did they give any kind of indication of how much is neuroendocrine vs adenocarcinoma? Like maybe a percentage? Just curious.

[Mc160587 in reply to Hidden]

20-30%

[Hidden in reply to Mc160587]

Is that 20-30% neuroendocrine?

[Mc160587 in reply to Hidden]

It says on my TURP lab... H&E sections consist of multiple fragments of prostate parchenyma, Most of which is involved by a mixture of high grade Neuroendocrine carcinoma (small cell carcinoma), comprising approximately 20-30%

[Mc160587 in reply to Mc160587]

Of the tumor

[Hidden in reply to Mc160587]

OK thanks. I've been reading about this type of cancer, trying to learn more. There is fairly high prevalence of the "treatment-related" version which is similar and many end up with some form.

Here's an article I found which is good.

ncbi.nlm.nih.gov/pmc/articl...

Here's an interesting part of it concerning markers for the cancer and how they differ from the more typical adenocarcinoma.

In general, NEPC differ from conventional PCa histologically by presence of neuroendocrine cells which do not express generic PCa markers like AR, P501S, PSMA, PSAP and PSA but characteristically expresses neuroendocrine markers such as chromogranin A, synaptophysin, CD56, and NSE

[Mc160587 in reply to Hidden]

This is a great article. Thankyou gregg57.

[softwaremom00]

My Husband was diagnosed with the same cancer in June, Small Cell or Neuroendocrine. We did not get a percentage.. but know there is some Adenocarcinoma. Our Doctor said not to look at the statistics for longevity for it on the internet. He said he can do better. Someone on this forum said they knew of someone who was a longtime member of this forum who had neuroendocrine and they lasted a long time. I would be happy to share our treatment plan so far if you are interested. I would love to hear about yours. Please know that you are in my prayers.

[Mc160587 in reply to softwaremom00]

That would be great please.

[softwaremom00 in reply to Mc160587]

So Far:

in late June/Early July

Started Zytiga and got Shot of Lupron

Early July :

Started First Round of CarboPlatin and Docetaxel.(infusion once every 3 weeks)

We did this for 6 infusions .. so about 18 weeks. We monitored using CgA and PSA.. but PSA was low so did not count for much. Also used a drug to keep up white blood cell count during chemo. Reduced tumor load significantly.

Mid November:

Currently Trying to get another therapy started. Local Nuclear Medicine won't do Xofigo so we are looking at Strontium. But they are having a hard time getting it started. We hope to have something going in the next week or two.. Our Oncologist would have preferred to start Xofigo.

I will let you know how it turns out.

Alternative Medicine:

We switched to a completely plant based diet. I am not sure if it makes a difference but I wanted to stack the deck in our favor as much as possible. We take many of the supplements suggested on this forum. I think they help. We are meditating as much as possible.. (Stacking the deck again)

We visit with an MD who helps with diet and is skilled in nutrition. He is local but has a web site.. he has a lot of additional supplements that he recommended and we implement those as well. ( I can msg you his web site if you are interested or I can even msg you a spreadsheet that lists what we take.. I need to eliminate some of it though as I think it is too much)

Trying to reduce inflammation as much as possible to hopefully make my husbands body a place cancer does not want to live.

Maintain a healing attitude. I think it is important. Focus on today as we never know what tomorrow will bring.

hugs and prayers!

[Mc160587 in reply to softwaremom00]

Did they offer you provenge?

[softwaremom00 in reply to Mc160587]

Not yet. Is that part of your plan ?

One more thing.. There is a study going on in the US at different locations.. it involves a cancer marker. .and most neuroendocrine prostate has it.(Ours Did NOT) I can look up the information as I think it is still in my binder. It is just an option to add to your list.

[Mc160587 in reply to softwaremom00]

It’s not part of my plan yet. I talked with the pharmacy that gives me xtandi and asked what medications are used for this new small cell cancer.