Thank you Cheryl. It sounds like I'm going to have to push to have the tumor sample tested for HPV. I really do wonder why they didn't just test it?

Hi, Stacie,

My husband's ENT said that they used a dye on the cells biopsied to determine if it is HPV+. It was part of his quadroscopy. This is a belated welcome, I would just like to say that we are your circle of friends. We understand what you are going through.

Hi Stacie,
Sorry you have to be here, but welcome. I feel that as both HPV positive and negative cancer is treated exactly the same it is a moot point. Don't get too upset over it.
Is this follow up chemo because of the necrotic lymph nodes seen on the PET. Did he have a neck dissection at all?
BOT cancer is not usually treated by surgery as this has major consequences for quality of life.
Hope all goes well with this chemo.
Tammy

Thank you! As much as the situation sucks, it is nice to have some place to go where people know where I'm coming from.

We were told that this chemo treatment was to stop any "free-floating" cancer cells from finding a place to set up camp.

They did find the necrotic tissue on the PET scan, and there was some talk of going in and cutting it out, but then they decided to wait and see if it would absorb, which it seems to be doing.

He did not have any surgery at all except the biopsy. The doctor said they don't usually do surgery because of it being so life changing.

Thank you, Tammy.

Hi,
Your story is our story only starting a year later. We finished tx in October of 2011, but found the lymph node in April of that same year. I knew it was cancer right away because a friend told me her brother had had the same symptoms as Kevin. Swollen node, clearing his throat, voice had changed a bit and he said he felt like there was something in his throat. I had to fight the docs to finally do an MRI. That was after all the antibiotics....We got the results of the MRI back and everything went very quickly after that and I was seething.
It sounds strange to be doing this additional chemo. You can read my sig. for our tx and we haven't done anything else for chemo since.
I would definitely push for the HPV status of the tumor. One thing to be aware of is being vigilant with your PAPs. I had to have a hysterectomy this past year because of abnormal PAPs with HPV16. Just something to think about.
Kathy

My thoughts are, I would want to know the HPV status so I would know the long term prognosis. This can only be determined via testing on the biopsy slide, not a swab.

It has been nine years, and no matter how hard I have tried, I have YET to get a physician to give me a long term prognosis - so good luck with that!

Donna

Just because one is HPV positive does not mean you are guaranteed a good prognosis. Yes, the odds do seem to be better with an HPV positive tumour. But that's all. Doesn't really help the long term prognosis.
Kris's BOT tumour was HPV positive. I was thrilled. Yay " good outcome". He had a recurrence. Bugger.
HPV status does not change treatment.
Just saying.
Tammy

HPV positive so far has shown to have better response to treatment, better prognosis, and less risk for secondary cancer. HPV smoker may be different. The recurrence rate for HPV positive is 15 percent, which is much lower than non HPV, which has a much higher recurrence rate. New findings has shown, for sone reason, possibly a sub-type HPV, has an increase in distant failure after 5 years, as opposed to non HPV involved, which levels off after two years...the first two years have the most recurrences. Also, the better prognosis for HPV is seen in oropharyngeal cancer, but not outside this area, but most HPV, 90 percent, involve the oropharynx, mostly the tonsil, BOT.

I would want to know the HPV status since it is a different biology than HPV negative , and therapies are being made to target them, including therapeutic vaccines in already infected HPV patients, which probably won't be available anytime soon, and as said, much is to be known about HPV, and treatments are the same for now, outside clinical trials. There is a concern with deescalation of HPV head and neck cancer, that it could change the success seen so far.