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Joined: Jul 2012

Does anyone else know of anyone who had this? I just had a 3 1/2 inch long lymph node removed this week. It just popped up on the surface of my left pelvic area all by itself. No one can find any cancer anywhere else. Full body PET/CT scan, abdominal CT scan and all other tests and examinations are negative for any malignancy. Of course, the oncologist wants to do five weeks once weekly low-dose chemo plus five weeks daily radiation to the entire abdomen. Seems dangerous for other organs and the immune system if they don't know what is there or where.

I would love data on other similar cases with and without immediate treatment.

Posts: 1
Joined: Aug 2012

Do you know what the pathology found? That is, did they determine if it was at least similar to other types of cancers?

I had the exact same (I think) type of cancer in 2001. It's called Cancer of Unknown Primary, or CUP for short. Mine was also poorly differentiated, but it had similarities to both squamous and small cell cancers, so they treated it with a chemo combo that works for both. I had four treatments of taxol/carboplatin. Was supposed to have 6, but the remainder of the cancer that they couldn't remove disappeared after 4 treatments, so they didn't think I needed the other two. After that, I had 35 radiation treatments very specifically targeted to the area where I had surgery.

Because this type of cancer is, by definition, in metastasis already, chemo is definitely needed, since there's no way to tell exactly where this stemmed from. IMHO, radiation to the entire abdomen is overkill, and will probably cause some major problems with the stomach and bowel. I'd ask the doctor to limit the area of radiation to the pelvic area where the cancer was found.

The good news is that this particular type of CUP, which is NOT adenocarcinam, is very curable. I'm an 11-year survivor, and I know of at least two other people who had exactly the same set of circumstances and, while I've lost touch with them, they were surviving at least 7 years after treatment...presumably still are!