Around this time last year, my husband started with a scratchy throat. Because we are both teachers, this is not unusual, and most of the time one or both of us might have a cold from the little germ factories we see every day. We didn't think much of it, until in April 2012, he got a swollen node in his neck. Again, not that unusual, but when it didn't go away in a month's time, he got went to his PCP. He was prescribed an antibiotic for some general "infection," and sent home. The swelling did not go down. PCP sent him to ENT, and ENT prescribed a stronger antibiotic. There was still no change to his node, but it did seem to be getting bigger. No one seemed to be alarmed because Husband is a non-smoker and non-drinker. In early July, the ENT did a needle biopsy, which came back clean. In early August, ENT did a surgical biopsy and that was when we found out it was stage 3 SCC in the base of his tongue and both sides lymph nodes. He began radiation and chemo in late August 2012 and finished it in October 2012. We thought we were in the clear when a PET scan came back in November 2012 showing just dead tissue. Then in early January 2013, the oncologist said he wanted DH to start another round of chemo lasting 12-18 weeks to combat any "free-floating" cancer cells that might be swimming around looking for a new home. We're now in week 4 of chemo. From reading here, we asked that he be tested for HPV, and the test came back negative.

Not sure what I'm hoping for. Just wanted to introduce myself.

Welcome Stacie. We're just ahead of you on this journey, my husband was diagnosed April of 2012. One question from your intro, you asked that he be tested for HPV, did they test the original tumor itself? It's important you know if that tumor is HPV+. I'm sorry ya'll are going through this, but glad that you have found this place, there's a tremendous amount of support here.

Ana is right, the test needs to be on the tumor. If they did a biopsy they should have kept that sample somewhere and in 2012 should have checked it for HPV routinely since it was Base of Tongue.

Is your husband getting treated at a cancer care center? Did you get a second opinion?

Welcome Stacie. There are many suspected causes for squamous cell carcinoma in the head and neck, the majority being smoking, alcohol related, and viruses like HPV, Epstein Bar virus, and many others that are lesser known about. . I don't know if the negative HPV testing means it is not involved. It may depend on where the sample was taken from, type of HPV testing done, but I'm not totally sure. Anyway, outside clinical trials, they are both treated the same, but HPV pos for now seems to have better response, and prognosis over the other.

The treatment used afterwards is considered adjunct chemo therapy, and curious what type is being used. Is it the same type chemo used during your husband's treatment or a different chemo or targeted therapy?

Good luck with everything.

Stacie, welcome to OCF! At this time there is no difference in treatment for HPV+ and HPV- patients. Studies have shown that HPV+ has a slight advantage with less chance of recurrence. There are several members of the forum who have no known cause and yet they still have oral cancer. No matter how it happened, it will be treated the same way.

I have to admit, it seems a bit unusual to be given weeks of chemo after getting an all clear months after treatments have finished. In FL, Moffitt is the top rated cancer center. Several members have been treated there including our admin davidcpa. He has personally walked countless patients right into that facility and stayed with them step by step thru out the whole treatment process. If your husband isnt being treated there, it may be an option to consider. Top cancer centers like Moffitt have a proven track record and it has been proved thru studies to have better results with their patients.

Best wishes!

HI there. I have to agree with a lot of what has been said here. It's very unusual for it not to be an HPV related cancer since BOT usually is. I imagine the chemo is a good thing, however I would definitely finish the treatment up and then look to maybe having him seen at a CCC if he's not already at one. The concern is that usually if it's non HPV related cancer the first line of defense is often removal of the tumor and nodes then a follow up with chemo and rads.

Sorry you have to be here. But so glad you are getting through it. Very odd on the chemo after the fact this is a new one. Unless, they went over the scans and were concerned and didn't tell you, or maybe missed something in Nov.

dunno. Maybe they were as surprised with the non HPV status as some of us seem to be and this is there way of making up for the non surgical issue. Since it truly is the best stop gap for non HPV cancers.

best of luck.

They did not test the tumor, because we had to request a HPV test be done. They did something like a swish test? Hubby said he had to swish for several minutes and then spit in a cup. I'm guessing this is not what we should have asked for. Grrrr.

He is getting treated at Florida Cancer Specialists and Research Institute. They are affiliated with Shands Hospital and the University of Florida. We didn't get a second opinion. We've heard good things about Moffitt, but they're pretty far from us, and for a while he was getting radiation daily, and we just couldn't go that far every day. FCS is closer, and we felt really good about the doctors there, and that they are working with Shands/UF.

The doctor said that they didn't initially test for the HPV because the treatment was the same either way.

This chemo is different from the chemo he had when it was combined with the radiation. He never had surgery other than the biopsy. I don't know the cocktail he has offhand, but I will ask him when we get home later tonight.

That's actually what is kind of frustrating. When we first started seeing the different doctors, and they heard what kind of cancer, the same question came, "Oh, you're a heavy smoker, right?" Every one seemed surprised when he said he was a non-smoker (and never was a smoker).

I thought it was strange too, but the oncologists wanted to target any free-floating cancer cells that might be swimming around looking for a new home.