Unknow primary - Cancer Message Board

bball3dad · 08-13-2005, 07:28 AM

I am 51, never been sick, and I have just been diagnosed with cancer. The cancer is in my neck lymph nodes but the Doctor can't find the primary tumor. He says it's called CUP or carcinoma of an unknown primary. From what I've read on the web, survival rates are low. Does anyone have anything to share about this type of cancer, which I've never even heard of.
Thanks.

Prayingmom · 08-14-2005, 01:28 PM

I am so sorry to hear of your diagnosis. My 19 year old son has cancer and it has been a difficult year for us. It was hard for them to find my son's primary tumor also. It is good if the primary can be found since it is possible sometimes for them to do surgery and/or radiation at the primary site.

My son's cancer had spread to his bone marrow. They did CT scans and other scans of his whole body and still couldn't find the primary by the time they placed his central line (a port-a-cath) and started chemo. Finally they did a PET scan and a spot lit up in his left foot. An MRI was then done of his left foot and then a fine needle biopsy of the tumor. There was never an noticeable lump or pain in his foot. The doctors and medical students would come by his room after the tumor was found just to look at his feet. They would look at and examine the left foot and then say, "Show me your other foot." There was no difference.

If you haven't had a PET scan done, encourage your doctors to try that before they give up on finding the primary. It is a newer test and the results require more tests and confirmation, but the idea is that a radioactive(but harmless to you) glucose solution is injected, wait in a dark quiet room for an hour for the glucose to be taken in by cells in your body and then do the scan. Cells that are growing faster would take in more of the glucose and this would show on scans.

I hope that the primary can be found and no matter what that you can beat this disease.

kafish67 · 08-14-2005, 02:02 PM

I am sorry you have to go through this. It is a very stressful time, but you will get through this. I can only tell you what I have learned from personal experience and in the last 3 years since my diagnosis. The location of the cancerous lymph node can sometimes determine where the primary cancer is. I had a cancerous lymph node in my neck and had a ct and pet scan however my primary tumor was never detected due to it being microscopic. The doctor stated that because of where my lymph node was, he believed my cancer to be in my tonsil, tongue or somewhere else in the oropharynx region. I had a tonsillectomy when I had my neck disection and sure enough, the cancer was in my left tonsil. It was sqamous cell carcinoma. I then had chemo and radiation, and although not a walk in the park, I am still here to talk about it 3 years later. So my point is, do not get all worked up over statistics. Everybody is different and mental attitude has alot to do with recovery. Good luck to you.

bball3dad · 08-15-2005, 06:31 AM

Thank you for your responses. I had a Pet Scan done and that showed that the cancer has spread to the lymph nodes in my neck including one swollen node in my left armpit. The Pet Scan did not show the primary tumor. My oncologist and ENT do not think its neck cancer because my panendoscopy came out clean and because there are cancerous nodes in my supraclavicular area (collar bone). I'm getting a second opinion this week from a neck cancer specialist at Memorial Sloan-Kettering.

lbp35 · 08-15-2005, 01:56 PM

kafish67,
My friend had stage4 Squamous cell of the left tonsil. Can I ask how did you find yours...was it a lump in your neck?What stage? And do you still suffer from side effects..i.e. dry mouth? My friend was 37 years old, he is one year out of tx and doing well! Thanks!