Trying to make the right decision

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Clon
Clon Member Posts: 20

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.

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  • mskitty137
    mskitty137 Member Posts: 73
    edited April 2017 #2
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    I would get a 2nd opinion. 

    I would get a 2nd opinion.