Anyone have cancer with unknown primary?

I've been diagnosed with Cancer unknown primary.
In January my dental hygienist found a small lump, at the time, in my left neck. After CT scans, biopsy it was confirmed carcinoma, highly undifferentiated. Pet scan showed tonsils and back of tongue being lit. Tonsillectomy was performed but negative for cancer. Had neck dissection to remove golf ball sized tumour from my neck. Histology is adenocarcinoma but pathology did not indicate primary.
I just started treatment-30 rounds of radiation and 3 rounds chemo/cisplatin.
My husband had throat cancer (voice box), fall 2022. He had a pet scan 11 months ago that was clean. Thencame thr devastating news. His cancer has returned and spread to both lungs with no option for surgery. We found this out 4 weeks ago. He has chemo/immunotherapy every 3 weeks. We are both going thru treatment.

Seems to me that scans should happen more frequently. In Canada, since Healthcare is free, this was detrimental.

Assume CUP cancers should do pet scans 3 months or 6 months? Anyone know the recommended guidelines? I would pay and travel to states if it means chance of catching it early/ living. My PET was in April.

@mbkcanada, dental care is such an important part of health care. Thank goodness your dental hygenist was attentive and suggested that the lump be investigated.

I can't imagine what you and your husband are going through at the moment with both of you in treatment for cancer. You may also wish to join the discussions in the
Head & Neck Cancer support group here: https://connect.mayoclinic.org/group/head-neck-cancer/

It's understandable that you want to keep a close eye and monitor frequently. Different cancers may require different frequency of follow-up appointments and scans. It also depends on how agressive the cancer is etc. etc. Often followup appointments are more frequent during and immediately after treatment, for example, every 3 months and then extended to 6 months and eventually yearly.

Canada has world class cancer centers, such as Princess Margaret Cancer Center and BC Cancer Agency to name just two. If you would like to seek a second opinion at Mayo Clinic, you can submit a request yourself here http://mayocl.in/1mtmR63

Do you have to travel far for daily radiation treatments?

my cancer was unknown primary for quite sometime. my doctor at Stanford had extensive testing done and eventually sent my samples to an external lab that does advance "point of origin" testing. Early indications from mutations and variants found in the testing led us to believe it could have originated in the GI tract or the lungs. PET and CT scans at first showed no cancer anywhere but my neck. So I went through colonoscopy, several endoscopies, traditional as well as a video capsule to make sure we checked the small intestine. I think I was getting CTs and PETs every 2-4 months with 6 weeks being the shortest. eventually a few nodes surfaced in my lungs, and the point of origin testing came back with 97% certainty that this was the primary. it has recurred in my neck after having surgery and radiation last year. I start systemic treatment in July.

Hello @lizfuller and welcome to Mayo Connect.

I appreciate you sharing your story of finding the point of origin of your cancer. It sounds like your doctor was very dedicated to the task of finding this unknown primary.

What type of symptoms led to this search? How long was it before the testing found the lung cancer?

my cancer was unknown primary for quite sometime. my doctor at Stanford had extensive testing done and eventually sent my samples to an external lab that does advance "point of origin" testing. Early indications from mutations and variants found in the testing led us to believe it could have originated in the GI tract or the lungs. PET and CT scans at first showed no cancer anywhere but my neck. So I went through colonoscopy, several endoscopies, traditional as well as a video capsule to make sure we checked the small intestine. I think I was getting CTs and PETs every 2-4 months with 6 weeks being the shortest. eventually a few nodes surfaced in my lungs, and the point of origin testing came back with 97% certainty that this was the primary. it has recurred in my neck after having surgery and radiation last year. I start systemic treatment in July.

Thank you @lizfuller for sharing this. It is very helpful.

Aside from my chemo and radiation plan , I've been told 'time will tell' approach which I cannot accept. And plan to travel to US for more frequent tests such as you did. Pathologists are indicating possible gi etc.
The lab is Tempus, correct?
Your earlier pathology wasn't sent to Tempus. It was after it appeared in lungs and this confirmed 'primary site' ?

Best of luck with your upcoming systemic treatment.

Good morning everyone,
It is time for an update. I am still on maintenance chemo although at my last CT scan, there was very slight growth in some of my...well, growths. Still feeling pretty good physically, but emotionally, I am sad because my sweetheart, who was doing well, unexpectedly died this past weekend. I was very fortunate to have spent time with him the day before and to have been close by (his nursing home was 90 minutes from where I live because although he was mentally still cognizant, he no longer could perform any of his ADLs, and there were no facilities that could take care of him in my community). I am very lucky that: 1) we met 12 years ago; and 2) had the time and adventures together that we had! Quality over quantity...
Thanks for reading this far. Remember, cancer is tough but we are tougher.
Sheri

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