Anyone have cancer with unknown primary?

@cindylb
Thank you so much for a new perspective! would it be possible to chat privately?

@sheridonaldson

I have shared on this thread before about my husband's diagnosis of CUP (Cancer of Unknown Primary). My husband is thankfully on year number 7 of his cancer and just recently we've had two PET cancer scans showing no active cancer, no recurance for 7 months. It's all good news but because they were never able to identify the source or type of cancer we also don't know what to expect. It's not that common but they think what might happen is that someone has cancer that starts somewhere as a certain type and then dies but has already traveled throughout the body. That is my husband's situation. His cancer biopsies (three of them) were never conclusive to one type of cancer. They matched lung cancer and possibly upper GI cancer. But he never really had the symptoms clearly of either type. The cancer was in his lung and lymph nodes near his lungs, which later spread to his hips, spine and adrenal glands. With repeated radiation treatments of different types and a round of chemo we are here today with no obvious cancer and improved blood work but my husband is still quite tired with symptoms we can't actually pinpoint treatment for either. If you'd like to discuss anymore on CUP I'm happy to help.

@sheridonaldson, this is sometimes also called carcinoma of unknown primary (CUP) . It's an unsettling diagnosis. I moved your question to this existing discussion:
- Anyone have cancer with unknown primary? https://connect.mayoclinic.org/discussion/rennie/

I did this so you can read some of the previous posts and learn more and connect with members like @cindylb @rita8898 @sylvia67, who are familiar with the uncertainties of this diagnosis as family members were also diagnosed with CUP.

Hi @sheridonaldson, A cancer of unknown origin feels like a pretty nebulous diagnosis and doesn’t give you much of an answer. It’s the medical phrasing used when there is a tumor in the body that shows cancerous cells but it’s not the origin of the cancer. This can happen when there is a lymph node in the body involved. It seldom starts there but travels from another source.

Doctors need to know the source of the cancerous cells so that the appropriate treatment can started. To do that, the oncologist will need a few more tests such as a biopsy of the area in question, possibly imaging and blood tests.

This is our Mayo Clinic’s page on Cancer of unknown origin which may help you understand a little more about what’s possibly going on.
https://www.mayoclinic.org/diseases-conditions/carcinoma-unknown-primary/diagnosis-treatment/drc-20433758
Sheri, is this news you received or someone in your family? I know it’s frightening to hear those words but getting an early diagnosis is key to recovery. Were there symptoms leading to the discovery or a tumor found?

Cancer of unknown origin
Good morning! Didn't know that this was a thing--has anyone else received this diagnosis?

@cindylb Thankyou so very much for sharing your husbands story. It really gives us some hope. Blessings to you and your husband ❤️🙏

@sylvia67 and @colleenyoung I'm sorry to have been so absent from the site. My silly computer keeps sending everything to junk mail and deleting it but I'm fighting back, ha ha. Sylvia67 - sorry to hear about your brother. Colleen probably asked me to reply because my husband was diagnosed with 'cancer of unknown primary' 6 years ago. It's a cancer they can't quite identify. My husband presented with a small tumor in his lung and one in a lymph node near his lung. They assumed lung cancer but after 4 biopsies it doesn't match a specific cancer. It's hard to have cancer but to have one where they don't quite know what it is, even harder. My husband's cancer has spread multiple times and is treated either with chemo or radiation. We also have tried immunotherapy (which oddly made him even sicker?). The radiation works where it can be applied to get rid of the spread of cancer. Right now and off and on he has no signs of cancer and then it comes back. It's very hard to not know what is going to happen and hard for the doctors to know what to do to stop or slow it down. So far we've been fairly lucky that the radiation works. They chose chemo based on an assumption of lung cancer and we don't know if it worked or the radiation or the immunotherapy as they were all used at same time. I do a lot of my own research with the blessing of our oncology team. I have found a couple of rare lung cancers that are similar to his experience and as the cancer acts and spreads we've eliminated upper GI cancer so far. All I can add is ....tell your brother to get a second opinion - just in case and pester the doctors with ideas and questions to keep them working on the cancer type. We're blessed in that my husband is still here after 6 years and they gave him 6 months. They've been truly difficult years for him and for me but he's still here and we're grateful.

@sylvia67, as if cancer wasn't tough enough, you've also learned your brother's cancer cannot be clearly identified. I hope @cindylb @rita8898 will return to share their experiences with you.

Sylvia, I assume the long wait before starting chemo was so they could figure out how the cancer behaved to know what type of chemo to start him on. Not all chemo is the same. Do you know what drugs he'll be getting? How are you doing through all this?

My brother has a growth on his liver that Dr’s say has metastasized from else where but they cannot find the primary anywhere. They will be starting a chemo after a very long wait now.
Has anyone else gone through this and if so, what kind of chemo did you have and how was it on your body? Thankyou

Rita, Prayers to you and your daughter as well. It's hard to watch my husband suffer and I love him very much but........if it were my daughter, it would be even worse (my daughter is 31 and healthy thank goodness).
The chemo causes many side effects and the neuropathy is one of those.....I'm sorry your daughter is suffering so much with that now. If chemo is stopped the neuropathy may subside but that's the 'catch 22'......then you're not treating the cancer.
My husband's cancer doesn't have genetic markers (right now) that would let him use immunotherapy or targeted therapy. Also, due to his age I think they are being less aggressive about treatment options. With your daughter being so young, she may have more options.
There is a type of treatment that is quite new and quite difficult for some people but is especially good at eliminating cancer, "Car T-Cell" therapy. Mayo may have that available. It seems to completely eradicate blood cancers (like lymphoma and leukemia) and now they are using it for other cancers to excellent results. They actually remove the patients own blood, treat it to fight the specific cancer with T Cells and then put it back in the patient. The effect can be quite strong on the patient (fevers, etc) because you're ramping up the immune system drastically but it can completely remove cancer. Don't know if that might be an option for your daughter but it's worth asking about and researching. I asked for my husband but they felt he wouldn't survive the process due to his age and other conditions. I also don't know if it's applicable to CUP.
Did they give you any 'options' on what the cancer might be? For my husband it was possibly lung, possibly upper GI types (even though it only partly matches each type). At least that narrowed it down slightly.
Many cancers spread to the liver and lung when they first start to move through the body. Spread to bones is common in breast cancer....also there are specific bone cancers and blood borne cancers like leukemia. Hopefully the doctors have looked at all options.
I will be praying for your daughter and your family and I'm sorry you are going through this.
Hugs