I'm new to a forum first time, well here goes, I have lingual tonsil SCC tongue base, waiting to do the PET scan.
Consultated with radiation Doc, he said a 90% to kill the cancer, I am going to also consult a surgeon at Phoenix MAYO waiting for insurance, as I did not have obvious symptoms, a constant sore throat I'm in shock not sure how to wrap my head around,
The rad.Doc painted an ugly description about surgery
I need more info
Scared, confused,

welcome Ed! I'm a caretaker to a fairly newly diagnosed BOT stage 4a. So much to wrap your head around isn't it? There is so much great support, information, kindness here.

Hi Edward, you are on a really great site to get information and support. Take everything in stride, there is a lot of info to take in initially, and you want to make solid decisions, to get things done in the correct order.
Did you get a biopsy report yet? Do you, or did you, have any enlarged lymph nodes in your neck?
The surgeon who you may see next, i would expect, would be an ENT who specializes in head and neck cancer, and in your case, is highly experienced in robotic assisted surgery for lingual tonsillectomies.
I had a lingual tonsillectomy, and the surgery itself was not that bad, but the post op recovery was very similar to the radiation recovery. Not fun, but you can get through it.
But, each case is unique. Some SCC patients can skip surgery, and go for chemo /radiation only. So, the initial biopsy report is very important, and you should see if it's HPV related, or from some other factor such as smoking /drinking together. I think that helps guide the Oncologists decisions.
I highly suggest, getting a notebook, and writing down a log on every phone call, test, Oncologist visit, insurance inquiry, etc.
You will see later on, how handy it will be to have that concise information in one place.
Best wishes, don't be scared, we have great medical care, and you will not be confused soon, it all starts coming together quickly once you talk to a few Oncologists, and they collaborate on your case.

CM57,I've had a biopsy, P16 strongly positive, SCC, no lumps
a full lingual tonsil going to mid
I'm trying to not get to far ahead of myself one day at a time
still have tests, consult, MAYO has robotic surgery
Thanks for the info
I feel better I'm not alone😎

Your case sounds very similar to mine, but I did have one lymph node affected. It sounds very encouraging. You seem to be on a very good path.
I get my first post treatment PET scan at 10:30am tomorrow. Started my "journey" January 9th.
I wasn't on this site right in the beginning, but once I did find it and join, I didn't feel alone either. And received many great suggestions which were invaluable.

Welcome to OCF, Ed! Im sorry you have a need to join our family. Dont worry, you found the very best place to get correct, up to date medical info and support.
You are not alone anymore! With us in your corner, you can become a better advocate for yourself.

I see you have already learned why second opinions and comprehensive cancer centers (CCC) are so important! A team based approach at CCCs will help eliminate doctors who advise their specialty is the best way to go. CCCs tumor boards are where all the specialists meet to discuss each individual case so all are on the same page with the best possible recommendation, patients are able to attend too. When dealing with smaller regional facilities, you can run into what you have... all the doctors claim their treatment plan is what you need to go with. Surgeons cut and will tell you thats the best choice then radiation docs say their way is best, etc... No wonder your head is spinning. Read both here and on the main OCF site to learn and educate yourself so you can make the best decisions. Bedside manner is very important to ensure an open conversation and trust is established, but remember; having a "nice" doc doesnt make them more competent! I know, its definitely not easy to wade thru a confusing time to get the best possible medical care you can.

Theres a million and one little tips and things you will learn along the way. Right now you can help yourself by starting to focus on your daily intake. No matter what treatment plan you get your sense of taste, appetite, and ability to eat will likely be temporarily disrupted. For now do your very best to seek out all your favorite foods and eat the best you can. If you're on the average or slim side, gaining a few pounds would be a great idea as most patients will lose weight during treatments and recovery even if they up their calories. Fighting cancer and healing the damage done burns up calories at an incredible rate so pay close attention to your intake now so it becomes second hand down the road when it plays a huge role in getting thru this. I can be a bit of a nag about intake as Ive suffered much more than I would have if I was better at pushing myself with my own intake.

Christine,you've had quite a journey,i guess I'm starting to realize my life is going to change,
ive lost about 16lbs since Jan 18,
April 18 I had 4 stents joining me,i thought that was critical and it was.I'm on blood thinners so that will probably enter into the equation.
my wife is bound and determined to make me fatter i'm 148lbs.
that's all for now PETscan this Thursday insurance willng.Educate and wait

Nutrition is one of the major controllable factors in cancer treatments and recovery. I can not stress enough how vitally important it will become!!! Since you are already on the slim side I would recommend drastically upping your daily intake to at least 4000 or more calories per day. Your body is burning up calories at an incredible rate making weight gain very difficult. Think of this as if you are a professional athlete in their basic training phase. Those athletes eat special diets often over 7000 calories a day. Of course talk this over with a nutritionist and/or your doc (whichever treatment center you select) to make certain anything else in your medical history will not impact your diet. Family docs are a great resource for this type of thing as they usually know the patient the best. Ive been going to my family doc's practice for about 25 years and they know everything about me, even things Ive long forgotten. Im sure if you are taking warfarin, Coumadin or other blood thinners this could play a part in your treatment plan. For patients with special medical issues it is even more important to get the very best medical care you can, if possible a CCC.

Try to get into the habit of making each bite or swallow count by getting the most calories you can per bite with minor changes like buying regular fat items like whole milk instead of 1%, no diet versions of bread, ice cream, etc. If you are interested I can give you my chocolate, peanut butter super sized milk shake Ive made myself for years to help stabilize my weight. Depending on how you make it, each shake has anywhere from 1000 calories to over 2200 calories. I also add high protein whey powder, carnation instant breakfast, half and half to further boost calories and anything else I have on hand to help make it the most nutritional shake I can.

Heres a few links with lots of info to read about. The better you can understand your cancer, the better of an advocate you can be for yourself. An informed patient is a strong patient!

Main OCF Site, Understanding section

List of Cancer Centers

US News Best Hospitals List

Main OCF Website... Financial Assistance including Air travel/Lodging

Best wishes!!!!

Christine, can you send me the shake recipe
I'm 64 retired so I've tried to not gain weight
But now I have to find food 😎

My husband was on blood thinners after the second chemo as a result of deep-vein thrombosis. He managed okay and it did not adversely affect him except he had to remember to get hi daily injection even when he was in hospital.