Anyone have cancer with unknown primary?

I also have cancer of unknown primary and was diagnosed 2.5 years ago. Currently I am undergoing treatment with immunotherapy and chemotherapy and it is keeping the cancer stable. It has been a rollercoaster that's for sure, but the side effects are minimal and I am able to continue working (although I am looking seriously at retirement). @tobydrake7, I have no idea if my particular treatment is an option (OPDIVO + FOLFOX) but so far so good. I wish you peace!

I have cancer of unknown primary. My bowels are packed with cancer which has caused bowel obstructions. I get nutrition (TPN) through a PICC line and all stomach fluid is evacuated using a G-Tube because of the bowel obstructions. I have not had solid food for around nine months now.

My chemotherapy slowed cancer progress, but I’m on a temporary hold for more treatments because a bacterial infection was found and the infectious disease specialists recommended removing the PICC line and my chemo port since the infection could take hold at these locations and could be life threatening.

The surgical options are not viable at this point, since there is so much cancer in my abdomen, so I may be on my last legs here. I am getting a referal to another high-ranking cancer center. so maybe I can get a solution from them.

Are there any other folks with this same type of bowel cancer with unknown primary? If so, I’d like to hear your story and hope you found a way through. Thank you.

Hi @hopeful33250 ,
I may join the group. My primary has still not found, only the lump in my neck lymph node that the pathology indicated it is small cell neuroendocrine carcinoma. Not sure if there's any canceof unknown primary with this type in the NET group. I guess it can't hurt to look. Thanks!

Hello @mbkcanada,

I would like to join @colleenyoung in welcoming you to Mayo Connect and also in inviting you to join our NETs support group. I see that Colleen gave you some links to the group where I am a member and mentor. I'm sure the other members of the NETs group would be interested in having you share your experience. You will find them to be a very supportive and encouraging group of patients with NETs.

I was diagnosed with NETs over 20 years ago and I understand that this is a rare type of cancer and can be confusing. Will you take a look at the NETs support group?

Cancer update--physically I am still doing ok. Still having chemotherapy and immunotherapy every two weeks and it has slowed the progression down. Hoping that the slowdown continues
--I am several months away from retirement and want to enjoy as much of it as possible 🙂

Good morning everyone--
My meeting with a grief counselor was good. We weren't able to get into too much depth but I will be meeting with her again next week, after the funeral. I hope that the funeral will bring everyone together and give us all some peace. It is not an exaggeration to say that he was loved by everyone who knew him, and he is missed so much.

@colleenyoung, thank you so much! It has been a particularly rough week for some reason. But I made it through. I am meeting with a grief counselor the end of this month and will update the forum on how it goes. Again, thankyouthankyouthankyou!

An update: just finished 30 radiation sessions on my neck alongside 3 chemo sessions (day 1, 15, 30). Had neck dissection previously.

I had reached out for second opinion and the pathology
results changed. Still unknown primary but instead of adenocarcinoma, it is small cell neuroendocrine carcinoma involving the lymph node. The 'differential diagnosis ' is metastic small cell carcinoma of the lung'.
I'll get more chemo in a few weeks with a etoposide and cisplatin. 3xweek every 3 weeks repeated 4x. My husband and I are now on the same 3 week chemo rotation.

Anyone know if cool cap works on this type/combo?
Hairloss is pretty low on my concern but everything is worth asking.

Sounds like for a CUP it's an aggressive type.