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anyone else have an unknown primary?

j3rey
Posts: 56
Joined: Apr 2010

Hi all,
Doc just called to say that biopsy taken of suspected primary is not cancer. I am not sure if it is good news or bad news! The good news was that of all the lymph nodes taken only one was positive for cancer. Has anyone else had an occult primary? What was the protocol for you?...more questions.
Thanks,
Jen

micktissue's picture
micktissue
Posts: 430
Joined: Dec 2009

I was diagnosed with squamous cell carcinoma of unknown origin (occult tumor). I finished my treatments 4 weeks ago.

I found a lump (swollen lymph gland) in my neck that did not go away after several months. A biopsy revealed cancer, but no primary could be found, even after the random biopsies done in my throat during the neck dissection.

The selective neck dissection removed 30+ lymph glands and found that 7 were with disease. The were in levels 2&3 (there are 5 in total in the lymph basin). A couple of these had extracapsular spread meaning the cancer was coming outside the lymph capsule so I had to get radiation and chemotherapy. Had there been no spread my treatment might have ended with surgery.

Prognosis is good I'm told and there are many on this board with similar stories to mine.

Best,

Mick

Kent Cass
Posts: 1898
Joined: Nov 2009

Unknown Primary w/NPC found in a neck tumor. Rad Dr. even ordered a last-minute biopsy in hopes of finding the Primary, but the culture came back Negative. My initial biopsy Op. took cultures from 5 places, and only the one from the neck tumor came back Positive.

Chemo and Rad is the standard: 35 rads, with Chemo at a delivery schedule to be determined by your Onco. What makes the Unknown relevant, I'm sorry to say, is that it means the rads will have to be done to more possible areas where the C might dwell. That is my understanding. I was getting rad-zapped in 20 places/session, but only needed 31 of those full rads, followed by 3 puny partial-rads. Many of us, here, are Unknowns, so your case is far from unique. Sorry that you are where you are with C, but glad you are here with us- and I know I speak for all, in this regards.

Many have dissection surgery, but I did not- my only surgery to deal directly with were the two biopsys. Did ask my ENT about removal, early, and he advised the alternative I got- an aggressive Chemo delivery, w/rads, to kill all the C. Do not wish my post-Chemo times on even the worst of enemies, so to speak (I have no enemies, as I doubt many of us emerge from this experience with any), but my recovery has truly been quite remarkable, I think.

You will survive this, as we all have. And

Believe

kcass

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