Neuroendocrine Carcinoma with Liver Metastasis

Hello @carrie55 and welcome to Connect. I'm sorry to hear of this new diagnosis and the frightening way that your medical team has presented your diagnosis and your future. I've never heard of such a negative presentation before. As you live in Canada, I understand that your health-care system is different than that in the U.S.

From my understanding, NETs and Neuroendocrine Carcinomas usually refer to the same thing. Are you being seen at a cancer center in Alberta? Have you had a Gallium 68 PET Scan? This type of scan is the best way to determine the presence of NETs.

–Please see the Connect discussions on this type of PET scan. Here are the links,
https://connect.mayoclinic.org/discussion/gallium-68/
https://connect.mayoclinic.org/discussion/what-nets-show-on-gallium-scan/
I'm wondering if you would be able to contact a NET specialist. Perhaps a phone or video consult could provide you with some additional help. The Carcinoid Cancer Foundation website offers a world-wide listing of NET specialists. Check out their website and see what you can find near you.

You mentioned that you were starting chemotherapy. What type of chemo is this? Also, has there been any discussion of a liver embolization to lessen the tumor load? These are good questions to ask your medical team.

Yes I’m being seen at a cancer centre in Alberta. Thanks for your very kind words. I, too don’t understand why this was out forth to me in such a frightening manner. In fact I was by myself in my hospital room and the surgeon came and told me while I had no family there. All I would have had to do is call my husband to come to the hospital room and he could have been with me when I was told. I freaked out, to say the least. I go for round two of chemo on Monday , Oct 3 and have another scan on the 17th. I am scared for this next round as I have felt soo unwell these past 2 weeks since my first round….ugh!

Hello @ carrie55

I hope the next round of chemo is more tolerable. What type of chemo are you being given?

Cisplatin and Etoposide.

Thanks for your kind words!

Hello, Carrie, My name is Lucy and I'm having my first surgery this month on the 20th. What I want to know is what hormones are the tumors excruciating? I had a total hysterectomy in 1988 but I took estrogens for abt 20 yrs afterwards with NO complications. But I just read about taking meds contaminated with NDMS? that causes cancer like zantac, ect and bacon and cheeses. And I take and eat 4 of 6. Anyway. I read that NETS usually has a 5 year lifespan?? I'm 69. I DONT really want to live to my 80's. Sorry if that was offensive. I'll add you to my prayer list. You add me to yours. Hugs. Lucy. From Texas !! Having my Sx in San Antonio @ Methodist Hosp.

@keeper3102
Hi Lucy and welcome to Mayo Connect. I wish you well as you anticipate surgery on the 20th of October. I hope that all goes well for you. You ask good questions related to understanding more about NETs. From my own personal experience, having had three surgeries for NETs in the upper digestive tract (2003, 2005 and 2016) I can understand your curiosity. It is important to learn as much as you can in order to advocate for yourself.

In learning more about NETs, here is a video presentation from one of Mayo Clinic's NETs specialists that might help you.

This was very interesting. My SIL has NET in liver (started in pancreas). She is doctoring at WVU cancer center. 17 months after removing the affected half of pancreas and having Y90 treatments in liver, she is actually feeling great. BUT dr called yesterday says they need to start 2 different IV chemos asap because tumors are acting aggressive. We are speechless and we don’t know which way to turn. Tumor board met yesterday. We are scared

Hello @sharond1956 and welcome to Mayo Connect. Cancer diagnoses do have a way of leaving you speechless, I understand completely. I've had three surgeries for NETs and I've never had any symptoms. I'm really sorry to hear that after 17 months of treatment that your SIL is now dealing with aggressive tumors.

What type of chemo are her doctors recommending?

We won’t know until this Wednesday any additional info. But we are not happy with the dr we are seeing and, thx to you sharing the video, we are going to search out a specialist. I really was not aware of net specialty. Our dr here is not encouraging at all and we dread going to her month after month. I will keep you updated as we go, but I thank you so much for the info and encouragement in this group! I’m so glad I found you

I replied but not sure if I posted correctly. Thx