I found a mass on 6/24/16 and had surgery to remove it on 7/5/16. The biopsy was SCC not HPV+. 2 days post surgery we did a PET scan which was negative but there was 1 enlarged lymph node. On 7/8/16 the ENT did a needle biopsy of the node which came back negative. Follow up conversation with the ENT where he said the 2 choices are either surgery to remove more margins and lymph nodes or radiation. Surgery may not fully rule out the need for radiation and is dependent on what the additional tissue pathology is. We met with the radiation oncologist and walked away somewhat terrified. He said that it's rare for him to see patients at this early a stage but that this type of CA is very agressive. My case is going to tumor board on Friday. We're in Charlotte NC and I'm not sure if we are in the right place to get the highest quality of care. I'd welcome any thoughts as to where we should go for treatment (family wants me to get to Sloan Kettering) where I'd get the best outcome. Also if anyone has suggestions regarding the treatment options for my case, I'd appreciate your thoughts. Right now, everything is terrifying. Thank you!

Welcome to OCF! You are in the right place for the best info and support to help get you thru treatment and recovery. Most people are most afraid of the unknown. We have been where you are and understand all too well just how scary this can be.

You certainly have some very difficult choices to decide on. The top Comprehensive Cancer Centers (CCCs) are MD Anderson in TX, Sloan Kettering in NY, Johns Hopkins and a couple others. It is definitely in the patients best interest to get treated where the medical team sees hundreds of cases similar to your per year instead of somewhere that has only treated a handful of patients over several years. It has been scientifically proven patients treated at CCCs have the best outcomes. Using a team based approach where all the specialists work together has many advantages. I always recommend patients to get the very best medical team they can weather its 10 miles from home or across the country. If you are able to travel for treatment I think it would be worthwhile to at least check them out.

List of CCCs

There will be so many things to do before you begin treatments. Make sure to have a full blood workup done including thyroid levels (and for men also get testosterone levels). You may have problems years down the road with your thyroid. A blood test now ensures you will know what your regular baseline thyroid levels should be. Taking a pill a day to manage your thyroid isnt a big deal, but getting the baseline level is.

To prepare, if you havent already seen your dentist try to make an appointment right away prior to rads starting. Anyone who undergoes radiation for head and neck cancer should wear fluoride trays on their teeth. This can help prevent major dental issues after rads. Also using a waterpik, having impeccable daily dental maintenance and getting regular (if not more frequent) dental cleanings. Since you just had major surgery, ask your doc if its ok to use a waterpik on your new mouth. You sure dont want to have any additional problems if you havent heeled enough before using it.

Regardless which treatment plan or facility you select you will want to start paying attention to your intake now. Eat all you favorites now, desserts too. If you are slim or average build putting on a few extra pounds is a good idea. Almost all OC patients lose weight (some significant amounts) during their treatments. When a person has cancer they burn up calories at an increased rate. Your sense of taste will e affected no matter which treatment option you go with so start eating all your favorites now. You dont want go into this with any cravings. Your ability to eat normally may be compromised for a couple weeks if having surgery, with rads its usually more like a few months. OC treatments have some rotten side effects, this is why I stress eat now.

Read thru posts and also on the main OCF pages to educate yourself about your illness. An informed patient is a much better advocate for themselves. Stick with us and feel free to post and ask questions. We are here to help

Best wishes with everything!!!

I would like to welcome you to this circle of friends. ChristineB has given you the best advice. Wishing you all the very best with your treatment.

Thank you so much for the support and guidance. I will keep the board posted as I have updates or questions.