Anyone have cancer with unknown primary?

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?

@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.

@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.

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

Certainly. How would you like to do that? Is there a private chat on here or do you mean by phone or private email? Just let me know what works for you.

Hello to all,

I'm going on the assumption that previous entry dates that don't show a year have been posted in the current one. I am 65 - Medicare has kicked in - and up until recently in overall good health; no problems, no medications, etc., living in Portland, Oregon.

While shaving last March I noticed a swelling on the right side of my neck which I called to the attention of my PCP on a following unrelated visit. Short story: I was referred to an ORL specialist whom I did not get to see until August; she felt a biopsy was needed to make further diagnosis.

Biopsy results came back in September showing a Squamous Cell Carcinoma of a Lymph node requiring further testing to try identify any primary source. I underwent a laryngoscopy/biopsy (9 points in the tongue/tonsil/throat area, under anesthesia) and a full PET Scan in October.

Yes, weeks and months go by... The tests revealed No Primary source of Cancer so the diagnosis has become: Cancer [of] Unknown Primary or CUP.

The treatment now being suggested is a mix of daily radiation for seven (7) weeks with weekly dosing of chemotherapy (Cisplatin) to reinforce the action of the radiation. I'm sure I do not need to explain the side effects of such a treatment even if I don't know how it will affect me personally.

At this point I'm just asking myself a certain number of questions from quality of life to financial risks. To put it differently I don't want to end up impotent, penniless and looking at endless tests/treatments down the road.

I'm sorry not to be able to offer advice at this time but would greatly appreciate any and all suggestions on avoiding any pitfalls at this time. Should one "shop around" for care centers, insist on second opinions, look into other treatment options? The literature out there can be all over the place, hospital brochures offer rosy outcomes and "Care Teams" don't always communicate very well. I will make sure to communicate my own findings here.

My very best to all, patients, families and friends,

M.

Hi @maalric, getting a cancer diagnosis is unnerving, but when the primary source cannot be identified - well that is just that much more unsettling. Mayo Clinic actually did a study about the efficacy of second opinions.
- Mayo Clinic researchers demonstrate value of second opinions https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/

It may be worth your while to seek out a second opinion at a major cancer center. If you would like to inquire about a second opinion at Mayo Clinic, here's the link to get started: http://mayocl.in/1mtmR63

I think you're asking wise questions about risks, finances, and quality of life. All of these factor into your treatment choices. You might also be interested in the tips members offer in this discussion:
- Tips needed: How do you manage finances during a big medical event? https://connect.mayoclinic.org/discussion/tips-needed-how-do-you-manage-finances-during-a-big-medical-event/

Have you decided to proceed with the recommended treatment?

I read and article in AARP about a test called Galleri. It is suppose to have a fairly high rate of detecting what part of the body the DNA scrap found in your blood originated from. I took this test on Monday and they said the results would be available in about two weeks. The article from Cleveland clinic was encouraging. It was $945 out of pocket. I am just a patient and have no gain in telling you about this. I took the test because of troubling symptoms I have had for two years. You have to be over 50 to be eligible. Also, does your radiology provider have access to PROTON RADIATION. I spoke to a retired health physicist that is an expert on ionizing radiation effects on the body and he told me, if all possible, always use PROTON because it does the least amount of collateral damage. I know that Loma linda has it and I think some of the Mayo clinics also. There are new ones coming on line all the time.

I too have been diagnosed with unknown primary cancer. My cancer was detected in my lymph nodes in my pelvis. Its squamous cell. I have had over a dozen biopsies of the cervix, vaginal area, along with every scan scope possible with still no source. they removed a lymph node so further pathology cold be done at a specialized lab. Im currently in Chicago being treated at Northwestern Memorial. I finish 6 rounds of Chemo Cispltain with daily radiation of 6 weeks. Next step is to have more scans done to ensure no cancer has spread to other lymph nodes as the radiation was local. This will determine next path. This is what worries me the most, living with the fear that there may be still cancer traveling within my body. Anyone out there experiencing the same.

Yes, - I have - after finding very big ganglions in both sides of the groin.
6 months later, I have not yet had treatment, and no side effects at all. To date the primary site has not been found. Per-CT scan confirmed that the Ganglion (inguinal lymph modes) and hepatic hilar has a tumor growth. Dont live on USA so options are limited. Will start treatment of Radiation then chemo after the ganglion biopsy has given origin of primary site. If it does not, what then?