High grade neuroendocrine carcinoma

Neuroendocrine is a broad term. Small cell is one kind of neuroendocrine cancer - there are several different kinds. Anaplastic means undifferentiated.

What often happens is that the tumor contains both adenocarcinoma cells and neuroendocrine cells. The adenocarcinoma responds to the usually therapies - hormone, radiation and docetaxel, but the neuroendocrine component does not. They can treat the NE component with other kinds of chemo, like platins, irinotecan, etc. Sometimes, the NE cancer expresses a receptor for somatostatin, so treatment with a synthetic somatostatin (octreotide, pasireotide or lanreotide) can slow it down (there's a clinical trial in London, Ontario for this). In Germany, they've been experimenting with a radioactive atom (like Bi213) attached to a somatostatin ligand for NE cancer.

Here's a link with some clinical trials:

/pcnrv.blogspot.com/2016/12/small-cell-prostate-cancer-clinical.html

While I want you to have hope, I don't want anything I say to be construed as false hope. Metastatic PC is not curable - he will not "beat it." He can manage it as long as possible. With NE cancer, the prognosis is usually a couple of years.

I think medical tourism to Germany would be a great idea if you can afford it.

I don't understand your point about continuous ADT contributing to this. If anything, continuous may have an advantage over intermittent when there are metastases. While it is very normal to ruminate on roads that might have been taken, it is destructive to do so. Your father just came down with a bad disease, and that's all there is to it. No one is to blame - you have to accept that and deal with it as it comes. I highly recommend psychotherapy and mindfulness - it worked for me.

Tall Allen has given you good words. Try to do all that you can for your dad. Enjoy the time that you have with him. Seek out the best treatment you can find and afford. Your doctors and their staff are not the enemy! You are not the reason you dad has this form of PC. The sooner you get a handle on the drama the better for the situation. This is a fact, all of us have just a certain number of days to live. No one knows how long - that is good. So make the most of all those days that are "today" and those in the future. Be grateful for those in past. Be the encourager he needs. We all agree that your dad has a stinking case of PC.

Glad your dad has energy" hope he can have a very good quality of life for several years.

hi all, i will be posting here with info as i get it, in case it helps anyone else in the future.

but one thing i didn't realise before was the neuroendocrine is a spectrum and aggressiveness varies on that spectrum. my dad is somewhere in the middle. not sure yet what that actually translates to but it's something i didn't know before. hope it's ok for me to keep this thread updated in this way. i just know it was tough for us to get any real info and it would've been valuable when this first was presented as a possibility.

TA, your links posted above really have helped us to get a solid starting point for options to explore and we have found a few others as well. not giving up just yet also trying to keep my mental health good and getting into fighting mode! that's what's needed right now!

for those in the toronto area, there is a clinic at sunnybrook hospital which specialises in neuroendocrine. it's the only one of its kind in canada. this is something i've just found out (we are at a different cancer centre) but will hopefully be helpful to any other canadian patients reading:

http://sunnybrook.ca/content/?page=neuroendocrine-tumour-cancer

edit: note that this is more pertinent to NETs which are different to NEPC - but as i said before, there is sometimes treatment overlap. we are still exploring this and i will update when i get more info

Post Edited (snowcake) : 5/20/2017 2:19:33 PM (GMT-6)

Does the path report say if it is positive for somatostatin receptors?

Yes. Please take another look at my earlier post about clinical trials.

HI Snowcake,
Thanks for the update. Were you offered any immunotheray or trials for immunotherapy?
I hope your dad is feeling well.

Snowcake-
What I was thinking is that if his particular type of cancer is rich in somatostatin receptors, he can be treated with a somatostatin analogue off label. Of course, a clinical trial with a nuclear emitter like the one in Heidelberg would be ideal, but even without that, there seems to be therapeutic value in using just a somatostatin. The ones currently available are:

Sandostatin (octreotide)
Somatuline (lanreotide)
Signifor (pasireotide)

His doctor can prescribe any of those right now, even without a clinical trial. Getting insurance to cover it is another matter.

just updating this thread as it was supposed to be for information to anyone whose in a similar situation.

in my dad's case, there was a singular spine met (first detected in mid-february, but we weren't sent to the onc for another scan until late march) so the medical oncologist at one of the best cancer centres here in toronto decided a wait and watch approach would be best, instead of starting him on chemo. we felt very uneasy about this, as we had done tons of research and knew what could happen. we also knew traditional scans won't pick this up as effectively as a PET scan, and tried to push for that but to no avail. the MO was convinced my dad's cancer was "middle of the spectrum" and that the normal scans would be fine...that we could pick it up early enough to treat. we pushed as much as possible, sent tons of studies and articles but nothing.

the full scan on march 29th showed only one spine met. then the next scan on may 4th - an MRI of the specific area on the spine where the met was - showed 2 lung nodules: one was tiny, the other was 9mm. my dad had planned an out-of province trip for may 10th-13th and asked the doctor if there was anything on the latest scan that was concering and if so, he would cancel the trip and come in for an appointment ASAP. the MO said there were a couple of issues, but "nothing to worry about, go on the trip and we'll talk when you get back". the appointment was given for a week after my dad returned - on may 19th.

at this may 19th appointment the MO said he was confident that the lung nodules were cancer and that the liver enzymes had gone up, making him think the liver may also have mets. more scans were ordered for the next week - an MRI of the entire spine on may 23rd and chest, pelvis, abdomen on the 25th. the spine MRI showed small mets on every single vertabrae of the spine. the chest, abdomen & pelvis scan showed innumerable mets everywhere - too many to count. it was like a "shower", to use the MO's words. instead of one huge mass, there were numerous tiny ones that sometimes looked like on huge mass. the liver was so full it had a marbled appearance.

at this point my dad asked for immediate chemo. the MO said that wasn't an option and that he would discuss options with my dad in another week. by now my dad was feeling awful - very ill, fatigued and nauseous. he even threw up. my mom then took him to emergency. a panel of MOs there from the cancer centre decided to try chemo. he was admitted to the cancer centre hospital and given etoposide and cisplatin.

initially, things looked positive. the pain all but stopped (he didn't need painkillers for 22.5 hours at one point, which was a huge change), liver enzymes were going down and generally he seemed to be doing better. they were planning on sending him home but he took a sudden bad turn and passed away in hospital on june 17th (he had been admitted may 26th after spending a night in emergency on the 25th)

it has been the most devastating thing we've dealt with. such an energetic, optimistic, positive man who was full of life all the time, and adored life. taken so quickly. when he first got the cancer in 2010 he changed his entire lifestyle - super healthy diet, stopped drinking, exercised so much. he was in the best shape he'd been in in years and felt so good and healthy. but somehow the cancer still came back and in such a deadly format. i don't understand he deserved so much better than this.

if you or your loved one are dealing with this diagnosis i'd say get 2nd and 3rd opinions and act fast. we brought him to this cancer centre thinking it was the best but we ended up with an inexperienced MO (we did ask him if he'd dealt with this type before and he said he had...his colleague also assured us he'd dealt with it) and it cost us. we were in a good position with the one met and it hadn't gone to the organs yet and i keep thinking about what could've been if they'd started chemo back in march/april when things were still looking good on scans. also, ask for a PET scan.

we had got an appointment at upsalla university in sweden who do PRRT which this type of cancer can respond to. they're worth contacting. unfortunately my dad passed before we could get him there. university of heidelberg also does treatment but i didn't have any luck with contacting them as they never answered back.

i will post some more info later once i'm a little less drained.

once again, thank you to those who have helped with advice on here. tall allen, your first post with the link to the blog is one i printed out and also printed out individual articles from to give to the medical oncologist immediately after this diagnosis. it also helped as a jumping off point for other research. but at the time, he didn't take any of this info too seriously because he didn't think this cancer was as aggressive as it turned out to be. his answers to everything were always "i don't think we need to concern ourselves with this just yet" and "we don't need to think about this at this stage" etc.

we never did find out the characteristics of the cancer and whether it was rich in somatostatin receptors or any other type, despite our repeated attempts to get the doctor to help us on that front. after the refusals, we found out through this forum that it can be done privately and just as we were about to send it off, the oncologist said if we waited a couple of days he could get it done and that it would probably be quicker. but my dad only lived a couple more days after that.

anyway, i am so sorry to anyone dealing with this. don't lose all hope - this is the worst i've seen from everything i've read and it was also the worse the MO had seen. hopefully yours will be less awful.

Snowcake,

I'm so sorry for your loss and for the experience you had advocating. It is one thing to lose someone when you believe everyone did their best and that is came down to bad genetics or bad luck. But when you look back and feel that the circumstances could have been different it is very, very difficult to grieve the loss of a loved one.

We've had a nightmare of an experience at the same hospital regarding advocacy and ethics. I don't know what you can do except pay full cost out of country or try a different centre like Ottawa. Our experience with a few physicians is such that I scratch my head and consider asking, "Do you want my husband to die?" My husband wonders if he's been written off.

I think that resources might play into things. Surgical time is very limited. Maybe some drugs are very expensive and are not offered to everyone. If this is so, I just wish they'd be open about it and give you the option to go elsewhere and pay out of pocket if need be.

I encourage you to meet with the oncologist who appears to have let you down. Try and keep an open mind and come with questions. My hope is that somehow, his/her answers can give you peace but if not, then consider making a complaint.

My heart goes out to you, your mother and your family.