Squamous cell throat cancer

Hello, sorry it took so long to reply. I did see the Dr here and we have decided to hold off on radiation. He said typically yes, if it is in 2 or more lymph nodes the guide line is to receive radiation. Mine was in 2 of the 64 removed and both was 3mm and on the right side. I went back to my ENT here and he sent me for another CT last week (should know something Monday, we played phone tag) And will have another PET at the mth mark. I have a funny feeling this journey is over yet though.

Ms Colleen… Thank you so much for your kind words Ma’am… I just read the discussion regarding dry mouth and Saliva issues… ir helps to know one is not alone dealing with the struggles… many good insights, so thank you…

@ascc17 good to see you again. Great posts about your journey. I think @fwpoole @hrhwilliam @alpaca will have some tips regarding radiation and dry mouth to share with you.

It sounds like you’ve been getting practical tips from your team at Walter Reed that have helped you too.

Did you see this related discussion?
- Saliva and dry mouth https://connect.mayoclinic.org/discussion/saliva-and-dry-mouth/

Just to be fair… I know this is a MAYO site, a wonderful Cancer Treatment Center, Worldwide known for their Excellent Care…. Unfortunately I could not afford it nor the Insurance I had at the time… so I turned to the Military for help… I sincerely hope this does not keep anyone from giving me some ideas as requested… Thank You All very much…

Here I will address the challenges of the after effects of the SCC operations and the Radiation Therapy…. As I mentioned, I had 37 sessions of focused Radiation, it damaged somewhat the newly transplanted bone and I am told the blood vessels impeding blood flow, it also made the saliva problem more difficult…. How to deal with it comes full of ‘educated’ guesses (my personal opinion) … Dry mouth is another challenge, mostly at night laying down, sitting up helps but then the Phlegm becomes the problem, it accumulates in the mouth and throat which as to be dealt with throughout the day… Drinking water helps somewhat, but one can only drink so much water… I have been researching for solutions including acquiring a suction portable pump… if ANYONE has any ideas as to how to meet this challenge, I would be so grateful… I use Biotene before bedtime for Dry mouth, but that only works for about 4hrs at a time… the Phlegm is the biggest issue… Oh, nutritional needs can be helped by drinking Ensure protein drinks, it has kept my body weight steady and came highly recommend by WRMMC Nutritionists and Oncology Drs … give it a try… Thank You so much for any input or ideas you may have and share….

Greetings to All, it’s been a while since I have been here… First and foremost I wish you all the best, I wish you Courage and Strength to endure it all… just words, I know but words that are heart felt…. I’ve been reading all the comments and concerns regarding this dreaded SCC Cancer that is afflicting so many out there… so I’ll comment to what I went through and are still fighting with… I am a 73 yrs young Vietnam Veteran who served 3 tours back to back in Combat…to this day I don’t really know how I survived it … then some 50+ yrs later I got the news of the SCC because of a routine dental medical check up, a biopsy turned out positive in a front portion of the jaw/teeth area, until then I had glowing dental diagnoses so it came as a total shock… I must mention that I don’t smoke but did drink some mostly beer…. So, within a week of finding out I was sent to Walter Reed Military Hospital and a few days later I was operated on.. a nearly 14hr operation with 3 different sets of Drs… 2/3s of the jaw was removed and replaced by a section of my left lower leg bone along with all its blood vessels etc, plus it was prudent and I was told necessary to also remove many lymph nodes….I spent almost 2 two weeks in ICU followed by months in the hospital undergoing all sorts of Therapies including 37 sessions of Radiation (wire mesh mask and all, with Smooth Jazz playing in the background, my request ), I had tubes everywhere including my throat and nose… nutrition was met by fluids and protein drinks through the tubes.. a stomach feeding tube came later due to the difficulty and discomfort of the nose tube… the saliva was almost nonexistent and what was there was thick slime/Phlegm which had to be removed via a suction tube… It’s been now somewhat over 5yrs of very difficult and trying times, the biggest problem now is the phlegm which accumulates in my mouth and throat and dealing with it is very trying, Dry mouth is also present….. 5 yrs of a strictly fluid/purred nutrition which will be my ‘new normal’…. So why am I mentioning all this? … to give You ‘Hope’ that no matter the circumstances and challenges YOU too will make it through… focus on Life, Family and those around you who love you and care… There are no easy solutions unfortunately but just survivable ones… Keep fighting, keep your Faith in yourself strong and steady, stay as fit as you can …remembering that Everything is possible… All my Best to You and Yours

@riverratlt, how are you doing? Did you decide to get radiation therapy?

There is a free shuttle service to/from most hotels and the airport. There are also two large parking structures connected underground to the main Mayo buildings. As for insurance, I can't imagine an insurance would say no because Mayo's general charges are often less than most. The physicians are all salaried which cuts down on competition for surgical financial desire. Your care group works as a team and collectively decides your best route of care. They give you a schedule and often you will go to several areas within the same day, completing what would sometimes take days or weeks back home. As a patient and with my wife also as a patient I can tell you, you will be amazed at the care you will receive.

Thank you! Will have to check transportation and insurance too.

The trip to Mayo would, in my opinion, be the best thing you could do for a good outcome. Mayo is like no other anywhere, which is obvious once you are involved with them. People from all over the world travel to Mayo for opinions and/or complete care for an issue. I live about as far from Mayo as you do and would not hesitate to make the trip if the need arose.