At UCSFCCC, where I was treated, my RO already knew of many of the issues with salivary gland damage, thyroid, etc. (and that was back in 2002), so my treatment plan not only minimized dose rates in those areas (and spared them) but also there were also various areas that were irradiated as a prophylactic measure such as lymph nodes and the other tonsil (bilateral). I did get the entire boatload of radiation (w/boost) and have some collateral damage such as fibrosis in the neck muscles on the primary side but on March 19th I will celebrate 8 years of being cancer free. I did regain salivary function and have no thyroid damage unlike David. The right parotid, which was directly in the beam path was supposed to have been obliterated but even it is showing some signs of recovery. It took almost 2 years for salivary function to return. Like David - no surgery, no PEG and I kept my teeth.

The NCCN guidelines always recommend clinical trials anyway. No matter how "good" the local doctors may be, the CCC doctors are better, if nothing else, because it's all that they do. I traveled an hour every day, one way for treatment in heavy Bay Area traffic - one of the worst in the US.

Thanks for that post Gary. Might you have any idea why I am getting 72GYs of radiation. I'm at Mass General in the hands of a 35 year veteran to head and neck cancers but I'm still not fully understanding why with my tumor (tonsil)and the one lymph node out why I am getting such a high dose. The Dr. says the body responds better to shorter exposures hence the higher Gys. I don't know if I'm more scared of the cancer or the treatment. Hearing positive experiences like yours gives me hope. Thanks. Will

I am certainly no doctor, but in my mind this is an aggressive disease - whether it is HPV related or other, so I always appreciated it when my doctors "hit it with their best shot". The treatment is doable - as evidenced by all of us here. Was it fun?? No. Did we get through it? Yup.

I think the aggressive treatment is why I am here 7 years later. I have known others on this forum who searched for non-aggressive treatment with surgery or other adjunctive therapies and are no longer with us. Don't know if the more aggressive therapy would have made a difference for them or not....just saying.........

My .02 worth!

Donna

You need to discuss the Gys with your RO but it's pretty common, HPV or not, for us to get 35 Tx's at appx 2 gys each totaling appx 70 gys.

There is much discussion of studies with HPV+ SCC patients with the attempt to lower the gys by say 5 to 10% or change the chemo to a less toxic one but so far to my knowledge nothing has been started. Until then they will continue to follow the stated guidelines.

I believe they intend to radiate areas (fields) around your primary (tonsil) tumor bed and secondary(lymph node)tumor bed along with adjacent oral areas and lymph nodes to eliminate possible microscopic metastasis.

I had almost the same Dx and I went with radiation and Cisplatin ct. Cisplatin enhances the efficacy of the radiation. No matter whether the tumor is HPV or otherwise, Tx is typically the same.
No ND. Definitely go with the CCC.

I have been cancer free 8 years.