Hi All,

Stumbled upon this fantastic forum and wanted to introduce myself. I have learned so much about this disease in such a short time from the people posting here.

My story:

Found a lump on the right side of my throat at the end of June this year. Already had a yearly physical scheduled with my primary care doctor as Mass General 7/02 so went about my business. Primary care took one look and immediately referred me to the head of the thyroid and neck lymph node surgery department. Needle biopsy on 7/22 showed inconclusive results except for the presence of skin sells in the pathology that couldn't be identified. His take was that it was most likely a cyst but wanted a second opinion.

Doctor at MGH referred me to the director of head and neck surgery (lymph and thyroid cancer specialty) at Mass Eye & Ear for a second opinion. Diagnosed me with (forgive me if I screw up the abbreviations) SCC of the right tonsil on 8/8. Surgery was recommended as the next action then after treatment.

Met with multi-disciplinary team on 8/16. Was told it is most likely HPV related. My MO said he does not generally like chemo for stage 3 and would revisit it as a possibility for stage 4.

Had surgery on 8/19. Original plan was tonsil and tumor removal. Doctor found the tumor was attached so just did a biopsy which confirmed HPV+. Also has a neck resection and removal of 34 lymph nodes. Two showed the cancer the rest were clean and he is confident that he got it all.

Have my radiation consult/setup this Monday. Radiation oncologist originally stated 32 treatments. They will complete them and then evaluate if chemo is needed afterward depending on results.

I am 47 years old, never a smoker, and a moderate drinker. I'm in above average physical condition and lead a fairly healthy lifestyle so I'm hoping this helps down the road. I have a million questions but will troll the rest of the forum for most of the answers as many have been answered I'm sure. A few I haven't seen are:

1) What are the one or two things people have wished they knew to do to prepare for treatment that they know now?

2) How much of an advantage is just having radiation and not radiation and chemo concurrently to me as far as side effects?

Thank you all for your excellent posts and I look forward to being a member of the community and hopefully contributing in some way.

-Rich

Welcome Rich, Dang HPV go me too. Radiation is the cure, and causes of most of the problems. Chemo improves success rate 15%ish. If you had two hot nodes, plan on chemo. Most likly cisplatin. There a whole list of things you have to do to get ready. Others will be along with tips and advice. My favorite one is go ahead and eat now and often. An extra lbs or two won't hurt you. Next is dentist. Your teeth have to be looked at very closely. You have to have everything in good shape before you start. Have floride trays made. And start using them. This cancer is cureable, so don't let the treatment damage your choppers.

Also post often, the good, bad, thought, and issues. I bet someone here has been there and the more they know about your situation, the better the advice. Treatment is brutal but doable. I am just under a year out and do well. Good luck and I see you on the boards.

Read my Signature Line. Pretty sure they will recommend chemo concurrent w/ the rad. Have your TSH levels tested pre Tx and record your normal number just in case your thyroid craps out post Tx from the rad. Do eat all your favorite foods now and forget that fat and calories are bad for you. Do get the trays made and start using them now. Do continue to visit this site and post ?'s often.

welcome Rich. You are definitely in the right place for info and support.

Thanks HD. I had my first appointment with my dentist today. She took a full set of x-rays as a baseline and started a deep root planing. I go back for more next week. Also she took the molds today. I didn't realize until you mentioned it that I need to start using them before I start treatment so cheers for that. I'll post as often as people can stand me!

David,

Actually your sig is one I read a lot. Your recovery time to being back to riding 100 miles a week is something that will keep me motivated.

I guess I should explain a little more detail on what my OC said. When I first met with him he went into detail how the treatment used to always be Chemo concurrent with radiation but that in the past year even the data shows that doing all three approaches (surgery, chemo, radiation) has no more of a curability rate or chance of recurrence than doing two (surgery, radiation). Now all things being equal that was before my surgery.

Basically you have made me determined to get clarity on their rationale and I thank you for that good sir.

Welcome Rich, sorry you have to be here but you found the right place. Feel free to ask any questions or let loose a good rant if you want to. There are many knowledgably people here and I am sure you can find any answers you need. Your not alone, we are here for you.

To answer you first question make sure you bulk up as much as possible. You have to look this as war or no rules boxing. You will lose weight through treatment. Build good muscle and eat good calories and protein. Try 4 to 5000 calories and get as much exercise as you can. You will have a decision on PEG tube and if you do get one before treatment you will lose some weight also. Make the most of preparation.

Second question your care team will make recommendation which normally is both.

Welcome to OCF! Glad you found our site to help you get thru your upcoming treatments with info and support.

Best wishes!

Hi Rich, welcome from another fitness freak. My recommendation to you is to keep to your workout schedule to the maximum extent possible while you go through your treatments.

I know it's counter-intuitive, I firmly believe (from my onw experience) that by keeping your metabolism elevated, it helps the body avoid the worst of the physical symptoms (mainly nausea) and allows the body to quickly metabolize and excrete the excess.

I had 8 weeks of rads, concurrent with three applications of Cisplatin. Unfortunately, I had a mediport implanted before beginning the chemo, and then I had to wait 6 weeks after the Treatments for a PET, meaning I couldn't even schedule the removal of the port until after the results showed no sign of active cancer. That kept me from working out for a total of 6 months.

I wasn't bothered by the radiation, but the chemo made me so nauseated I couldn't keep more than a single bottle of Ensure in my stomach, and lost 38 lbs (from a very solid 192, down to an emaciated 154.)

However, as soon as possible after the removal of the port, I got back into the gym and started working hard to rebuild my body. When a distant metastasis was discovered in my liver 18 months later, it was treated with Carboplatin and Taxol/Taxetere in 4 week cycles (3 weeks of one infusion/week, with the last week free.) During this treatment, I never skipped a day in the gym, and I never felt any nausea. Do the math. Keep working out, you'll thank me.