Squamous cell throat cancer

My SCC was ear, not throat, but I met several patients with oral, throat, and salivary gland SCC in my years at Quantum Immunotherapy in Freeport, Grand Bahama Island. That is a good complementary therapy to help your immune system fight cancer after traditional medical therapy/surgery. The best results seemed to be patients who had done chemo/radiation, despite the side effects of feeding tube,etc. My radiation had only moderate oral lesions which reduced my ability to eat, but there were methods to control pain to enable swallowing. My surgery was at Mayo Clinic, Rochester, and when asking the radiation oncologist there if all radiation is equal wherever it is done, the answer was no. Living in Ohio, they highly recommended a head and neck radiation oncologist at Univ. of Michigan for a closer location for those 7 weeks. That was in 2012. With the increase in availability of proton beam therapy, I would advise a second opinion, hopefully at a large referral center for your optimum care. While the mask and radiation treatment was probably the most upsetting and uncomfortable part of my 10 years of treatment and surgeries for metastatic SCC, it is tolerable. I began with a small dose of valium to help with the claustrophobia issues but was able to stop using that partway through. My dad had oral SCC from smoking and alcohol ,and despite radical surgery at a referral center, and radiation done at a local hospital, he succumbed to a recurrence back in 1993. Every year better drugs and immunotherapy treatments become available for this cancer. The referral centers will have the best new treatments available. If you can, give it a shot. We drive 10 hours to Minnesota but I am still alive and on a new immunotherapy 10 years later. Dr. Katharine Price, the head and neck oncologist there is amazing. Best of luck to you.

Hello @sandyjr and @leelee70 and welcome to Mayo Clinic Connect. I am glad the pair of you have connected. @leelee70 thank you for giving @sandyjr some very helpful information on based on your experience.

You will notice that I have moved your posts into an existing discussion on Squamous Cell Throat Cancer that you can find here: https://connect.mayoclinic.org/discussion/squamous-cell-throat-cancer/

@sandyjr what questions do you still have that members such as @cooper12345 and @leelee70 can help with?

Hello sandyjr. My heart goes out to you all. I will share my story quickly and hope some of it might help. I had my second squamous cell carcinoma on my tongue identified 10/2021. After discussing my treatment plan locally, I reached out to Mayo. Best decision. I had a partial removal of my tongue (leaving out the medical terms) and then a rebuild with muscle and vein from my arm (same surgery). I woke with a trach and obvious swelling and pain in my mouth and arm. I was released from the hospital on day 6 and the trach removed. The 6 days with the trach were difficult, but I would have to say worse in the beginning and easier to deal with on following days. The phlegm stuck in my throat, required to cough to clear, was difficult. Mayo's oncologist reached out to me advising that my cancer was aggressive, and a plan was set up for 30 radiation treatments (M-F) and chemo once a week for 6 weeks. A feeding tube was "threatened" every week as I lost weight from not being able to eat due to mouth pain. I drank a concoction of high calorie additives and drinks, blended with ice cream. I cried as I drank it because my mouth hurt so bad. Fast forward to end of August 2022 when I hit 6 months from my last treatments. I would say that it has been hard and difficult and basically sucks but family support is what has brought me through. Also, my mom and I stayed at The Hope Lodge in Rochester, MN which is owned by the American Cancer Society. Staying there was a blessing. Being able to talk with others going through similar journeys. It is free to stay there, and the Mayo has to refer you to them. I hope something here helps.

My son-in-law has been diagnosed with throat cancer. I do not have many facts, but so far I have been told it is in his voice box. He is waiting for a pet scan. He has been told the treatment will be 35 days of radiation with chemo once a week for a number of weeks and he will have a feeding tube. He has also been told that the next 9 months will be very difficult and unpleasant. I realize that my information is limited, but is there anyone out there that has had a similar diagnosis and what was your treatment? Any info would be appreciated.

Sir, I have a pea-sized, Stage 1 squamous cell HPV tumor in the base of my tongue. They too rule out surgery and I'm about half way thru six infusions of carboplatin & taxol plus 35 rounds of radiation. Based on your reduced chemo and rad recommendation, perhaps your issue is less serious than mine.

I understand your claustrophobic reluctance to have your head restrained for radiation. The soft plastic mesh mask with thousands of small holes is certainly an experience. But it assures them pinpoint accuracy to attack your cancer. Just make sure to tell them when they mold this mask around your head that you must be able to open your eyelids so you can see out. Yes, it's that tight. Ask them to explain what's going to happen to you during the process so that you can relax. Make them go slowly.

Now in my third week of treatment, my throat just began to restrict plus I have thick saliva that I must spit out often. There are meds that help with these side effects. So yes it has begun to suck - but it sure beats the alternative. My Doc has been wonderfully honest with me about the difficulties that lie ahead - but together we shall positively persevere. I have much to live for and miles to go before I sleep. I wish the same for you.

Hang in there! I recommend Dr. David Routman Radiologist who was excellent for my similar cancer to yours. I had 33 radiation treatments and 6 Chemo’s in 6 weeks. Proton beam was the difference to me in my recover as I had very few side effects.

Thanks @colleenyoung, I guess I’ve hit the cancer lottery. I just got all this news late late week and Im still waiting on the referral to the radiation oncologist and, yes, I have lots of questions. Im also looking to get a second opinion. But, I know from experience there is a cancer playbook and a flow chart for every cancer. Im sure thats where the recommendation is coming from. Im hoping to hear from others who may have gone through this, with or without radiation.

@fwpoole, I'm so sorry to hear that the big "C" has struck twice - lymphoma and now throat cancer. I moved your message to the Head & Neck Cancers group where you can meet others like @karly @skoshi, @margieinia @fxdwing and @catlyn. They can also share their treatment experiences.

Fwpoole, I can understand your reluctance to have radiation therapy given your brother-in-law's experience and your claustrophobia. Remember that not all radiation is the same. Your brother-in-law's experience will not be yours. Before dismissing radiation therapy, I personally think it is worth having a heart-to-heart with your radiation oncologist. Explain to him you concerns and reluctance. Find out what alternatives there might be. Ask what would be the prognosis without radiation. How do they help people who are anxious about closed spaces? Etc.

The final decision is always yours, but I recommend having all the information to make an informed decision, including perhaps a second opinion. Have you thought of getting a second opinion? When do you start chemo?