On March 1, 2017 my ENT found a swollen lymph node on the right side of my neck. He scheduled a CT Scan and a FNA biopsy. On March 7th the biopsy showed positive for squamous cell and the CT Scan showed a small mass on the lymph node about 1/2 inch in size. This started a whirlwind of appointments and procedures with a team of doctors at the cancer center.

On March 14, 2017 I received a PET Scan. This PET Scan showed activity in the right level IIA and IIB lymph nodes in the neck. The primary site was not found. The reason I was told was if it is under 1 cm the PET Scan will not pick it up.

On March 28, 2017 my surgeon did a large sample of biopsies from the nasal cavity, mouth, throat, tongue and tonsils. I believe he took 12 biopsies total in an attempt to find the primary site. A cold read was done at the time they were harvested and five days later they were again read by pathology after trying to grow any cells. ALL of these samples came back negative for squamous cell. I was warned that there was a 60% chance this would happen and we would have to go forward with unknown primary.

On March 30, 2017 my surgeon did a total of three core biopsies on the affected lymph node. He was trying to determine if the cause could be HPV or P16. After these were sent to pathology, I learned that there was no trace of cancer in any of the core samples.

During this time I have had a port implanted and had six teeth pulled. Since the last biopsy my lymph node has shrunk down to normal size, it had been swollen for almost six months.

Here is my concern, I have had one biopsy show squamous cell and it was from a fine needle aspiration. The PET Scan used to find the primary showed these lymph nodes as active, but so can infection of trauma. All of the other biopsies including the tree core biopsies of this lymph node came back clear of cancer. I am supposed to be starting 35 radiation treatments and seven chemo treatments next week. I don't want to go through this if I have had a false positive. If I have HNSCC then I do not want to delay going through the treatment. Has anyone had similar experiences and are there any other tests or suggestions that could help me be comfortable with one decision or the other.

Thanks in advance for any help or suggestions.

This is a very difficult position to be and I can understand your hesitancy. Of course there is such a thing as an unknown primary with protocol for treatment. I would absolutely consider checking into delay of radiation for a second opinion from a different cancer center and have them recheck the pathology. It is common practice for biopsy slides to be sent from one facility to another. Either the patient picks them up or they are sent from one facilities to the other.

Have you mentioned this concern to your present team? Usually oncologist are very much in favor of obtaining a second opinion and often their office will assist in making the arrangements.

The question is how long is it reasonable to delay. I don't know the answer to that. Often treatment is delayed for a variety of reasons. Hopefully others will have info.

Welcome to OCF, Charlie! You have found the best place to get info and support. We will do our very best to help you with everything. I first want to explain more about our site. Im a former patient, just another OC survivor who does not have a medical background. Almost every member is like me and does not come here with a medical background. So unfortunately, this makes it difficult to offer any type of medical opinion.

Im very sorry to read about the mixed results you have received. This certainly makes it difficult to decide if you should proceed. Ive been on this site for 10 years (its actually exactly 10 years ago today when I first started with OCF). During that time I have only seen one case of a false positive where the patient did not have cancer but began treatments for it. False negatives are much more common. I would suggest if you have not taken this info for a second opinion that you do so right away. It may cause a delay in when you start your treatments but this way you will have another trained professional review all the info in your case. I would also recommend if possible to get your second opinion at a Comprehensive Cancer Center (CCC) where they have the most experience with complicated cases like this. Often CCCs get booked quickly and the wait can be a few weeks. Ask them to put you on their cancellation list so if another patient cant make their appointment you have a chance to get bumped up. It doesnt hurt to call every few days in the morning to see if anyone cancelled or not. You may get lucky and slip right into an appointment without much delay. Heres a few links that may be helpful....


List of CCCs

NCI Cancer Centers

Main OCF site -- Understanding Oral Cancer (diagnosis, treatments, etc.)


PS... Adding to what travelottie wrote... If you discuss this with your physicians, ask what impact a delay of a few weeks would have. When I went for my major surgery back in 2009, my doc allowed me to select the date of my surgery. He said anything within a few weeks should not make much of a difference with the tumor growth. So this could be similar to your situation but check first with your current team.

Best wishes with everything!!!