Metastatic bone cancer with unknown primary: Anyone else?

@coco46

Thank you. I too, would rather sleep than the sharp piecing uncontrollable spasm in my stomach coupled with the feeling of wanting to vomit and the nausea.
I feel so guilty wanting to sleep and it seems so lazy that I have no energy or enthusiasm.
Occasionally I’m thinking is this all I have to look forward too? I will try alternatives.

@susan38 I know, I am always thinking and feeling that way too. Every situation is different, so I hope and pray you will still be able to get to a place where things are better. Certainly once you get through the active phase of chemo you will get past most if not all of the bad things that come along with that part of it. A lot of people do reach a point in their journey where they feel a lot better and have no regret of treatment. Also remember there is no guilt in sleeping while you are going through all this. Resting is actually very important while your body is trying to fight and heal.

@coco46
Thank you.

Has anyone else been diagnosed with cancer of unknown primary? They found the metastitzed spot on my spine, but no primary. Anybody else?

Welcome, @jobo1031. I moved your question about metastasized cancer of an unknown primary to this relevant discussion:
- Metastatic bone cancer with unknown primary: Anyone else https://connect.mayoclinic.org/discussion/metastatic-bone-cancer-with-unknown-primary/

I did this so you can connect with fellow members like
@christinaclc @susan38 @coco46 and more.

Also see this active discussion:
- Anyone have cancer with unknown primary? https://connect.mayoclinic.org/discussion/rennie/

Jobo, are they treating your cancer as a sarcoma? What treatment is being recommended?

@jobo1031 Have they done a biopsy on the metastasized spot on your spine?

A CT scan found many bone mets on my skeleton and they took a biopsy from an area on my iliac bone. This allowed them to narrow down the possible origins. Eventually they ran even further IHC testing and confirmed the more specific type that I have.

@coco46 ~ Hello! Yes, a biopsy was performed, also a liquid biopsy was done, blood testing, CT, etc. If theres a test or procedure, I've done it. Nothing pops up on a PET scan as well. I'm having another PET scan on Monday, but I don't really expect any new news. My Oncologist says about 10% of cancers are of unknown primary, and we may never know. Which in my opinion is the worst! I can't find any trials, support groups or anyone that has unknown primary, and the prognosis is terrible. I'm having a second opinion with UCSF in a week or so. I guess we'll see... Thank you for the reply and information, I appreciate it. (Sorry for the rant!)
P.S. what is IHC testing? 🤔

@jobo1031
Yes, I had no tumor. I have metastatic bone cancer with unknown primary. Mayo Clinic took a guess with non small cell carcinoma, myeloma or lymphoma. All my biopsies were negative or inclusive. My left humerus broke while carrying 14 lbs of dog bones. I had them biopsy from the break. I have a rod and screws. I have completed radiation and on my 8th chemo. I sure hope and pray they know what they are doing.

@coco46 what type did they tell you that you have?

@christinaclc ~ Wow! So its you and me! Yes, they did a biopsy on my spine. I was in the hospital for 26 days in April/May of this year. I had massive blood clots & while they were trying to figure out why I was having them, they found the cancer. They did every test, scan, biopsy possible, and still no primary. When I started chemo in June the tumor board & my Oncologist chose to treat as Ovarian cancer and used those meds. The Gyn-Onc concluded its not a Gyno cancer, so here we are again. Interesting though, I also have a rod & 7 screws in my leg. Coincidence? I also hope & pray they know what their doing.