Stage IV -Neuroendocrine Tumor (NET) non small cell lung cancer - Anyone Else ?

[Nas]

Hi All,

I was diagnosed with Atypical neuroendocrine tumor (NET) with likely primary non small cell lung cancer. Stage IV. Also known as high grade carcinoma neuroendocrine differentiation.

i feel like I am one in a million well the rate is apparently (0.2%) so I don’t know who I can share my experiences with. Currently undergoing chemo (4 out of 6 cycles completed) + immunotherapy (2 cycles out of x complete).  I have terrible insomnia but all other side affects I can manage. 

My PET scan results on Monday showed my Tumors had grown so now next Wednesday I have to go in for a biopsy and stop my treatment, it could be pseudo growth which can happen in 20% of immunotherapy patients and then it starts to shrink again. 

I just feel like all other cancer types have a huge support group and my cancer is so unique I can’t really share or get any insight. Anyone else have what I have that we can share experiences with?

[Katekat]

Welcome to the community @Nas 👍

There are more than a few members here who have NETS, so you are not alone 💚

How did your biopsy go yesterday?

-Kate

[Nas]

Thanks Kate. 

Biopsy went well apparently, textbook was at home today glad it was over as it's very uncomfortable. Just received a call 10 mins ago advising that the samples were not stored correctly and now I have to do it all over again next week! Bit disappointing but it needs to be done for me to move forward so I will have to do it again. 

[LindaV]

hi I to have neuroendocrine cancer and have had for four years now. I do know how you feel it is so hard to find others for support. I have had two rounds of chemo 12 cycles each time and I am really finding the side effects caused by chemo just keep come. I have found trying to get psych support impossible even though I am a social and trained in many forms of counselling. I just really want to chat with people like me that have this form of cancer. There is some support out there but I don’t thing it replaces peer support. Would love to start a chat group for those with neuroendocrine cancer so we could all support each other during really stressful times. My contact is lindabrenvos@hotmail.com.