Navigating my way through throat cancer

First couple dozen rounds of radiation weren't an issue.
Went to work as usual.
Last handful of treatments had my head in pain and lost the physical power to work 8 hours. Took a month off then went back to work.
The pain is sill difficult to navigate at work. But, insert Advil or Tylenol or Tramadol + resting for a few minutes (all while taking on more fluids) makes it more bearable.

Best of luck, no experience, but have some concerns re mouth issues, so waiting for tests.

@bonepool thank you for your response i appreciate it.

@llq hope your tests go well and you at least learn as to the mouth issues.

Probably not the clear answer you want, but everyone reacts differently to treatment. Depends on lots of variables like age, physical condition, mental attitude etc. Personally I was 69 when i went through 7 weeks of chemo/radiation at Mayo Rochester. First 3 weeks were honeymoon stage and was able to continue gym workouts and normalcy. Last two weeks and the month after treatment the main obstacle was fatigue.

The month after treatments was
the worst! Try to keep your weight up, as I lost about 30 pounds. Pain was very manageable (magic mouthwash and Mayo will see you up with Pallative care team which are amazing)!! God Speed! The HPV is a blessing in disguise and puts you in a great position for positive results!

In 2010 in had throat cancer of the pyriform sinus. I had 35 radiation and three chemos. First 2-3 weeks were not too bad but my doctor suggested they put a feeding tube in right away in case I needed it. She said it’s easier to do it right away then do it if I need it and now you are feeling like crap. I thought she is the expert and had it put in right when I started radiation. Boy, am I glad I did because by the third week I could not eat. Work, my job was not physically either, was pretty much out of the question after my second chemo treatment. Basically was in my pajamas by the fourth week. I threw up after the second chemo, was just soooo tired, constant clearing of my throat, sleeping on the couch a lot because of throat clearing (didn’t want to disrupt my wife), eating through a tube, had an ambulance ride because I didn’t realize I wasn’t giving myself enough water and got dehydrated! Not trying to scare you, each person is different, but work was out for me. I was off about 4 months and came back about 4 hours a day for three weeks until back to fulltime. I had short term disability at work so I got paid 66% of my pay while off. This is a great benefit that most people don’t realize how important it is until you get sick! My main point is you may go through hell but I am still here 16 years later!!!
Then I got base of tongue cancer in Sept 2024 ☹️
This time my oncologist referred me to Mayo in Rochester and they were AMAZING!!! They used the robot (TORS) on me, just cut it out, and there was no radiation or chemo and so far I am clear. My oncologist referred me somewhere else first and they wouldn’t even do the robotic on me (though I read on numerous sites that this should be the best option for me?). They told me surgery and then a week later said radiation??? OMG
Luckily I have a great oncologist (she saved me the first time) and she told me if she did radiation there was a 25% chance I would never swallow again 😩 Then Referred me to Mayo and the surgeon came in on the first visit and said the team thinks robotic surgery is the best choice and just started talking about scheduling? I couldn’t believe it as this is what I thought was the best option but the other place wouldn’t even do it! The surgeon said, “ I believe I can cut the cancer out and cure you” like it was just another day at the office for her! I was so happy. Two weeks later she cut it out…no chemo or radiation. Had some swallowing issues for about a month or two but back to about 90% normal with that. Need water when I eat cause food sits in the “divot” where they cut out the tumor but it’s not too bad, also have left arm weakness from the left side neck dissection I had…they have to a mess around by the nerve that controls your arm during a dissection.
So far so good 17 months later. Doing my follow ups now locally.
I know this is a scary time for you but I have gone through this two times and I am still here and I have some side effects (lost some high end hearing and numbness in the balls of my feet from chemo, left arm weakness, small swallowing issues, some lympodema, neck skin is a little tight where the neck dissection was, taste is a little tiny different)
Bottom line, you may feel like shit for awhile but you will get back to normal. You are at a great facility with Mayo!!!

Hello . I was diagnosed with HPV 16+cancer of base of tongue March 2023. The Good news is HPV 16 is a very treatable cancer. I am sure the earlier you start treatment the better. Trust me I had not visited a Doctor in 20 years and I found it hard to trust them but a good Oncology Doctor that treats alot of HPV cancer should be able to help guide you to the correct and proper care.
If this is any help here is my story....I am 59. I had TORS surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I did not have any Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). It was a struggle to eat during radiation and a few months after and I FORCED myself. I lost appetite and everything had no taste. I ate soft creamy foods for about 3 months once radiation stopped and then slowly back to normal foods. As far as today 30 months out of treatment I can eat and drink about anything I want. My taste buds are about 90% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 90% . I will continue to have a throat scope and CT scan every 6 months for another year and I think then it will go to once a year. So far no evidence of cancer remains.
Make no mistake this will get better for you in the next 6 months or so. To answer your question I drove myself to all 30 treatments. I did manage to keep working. I would say around treatment 20 you can feel it slowing you down and by 30 your are ready to be done for sure. I take the time now to thank God every morning when I get up. You got this. Trust in your Faith

@jonesja
My journey was very similar to (jonesja). HPV tongue & lymph nodes, had surgery in September 2025 and radiation Oct-Dec 2025 (33 treatments). I made it through surgery/radiation quite well and except for a short time was always eating solid food. Had feeding tube installed as a precaution but never used it and had it removed three weeks after radiation ended.
Ten weeks post radiation now and I have no diet restrictions but still experiencing dry mouth problems primarily at night. Sleep has been an issue but is improving, stamina and energy levels are definitely getting better especially the last few weeks.

Rllampton
My heart goes out to you and your family, getting a cancer diagnosis feels like a bad dream (that it can’t be true).
Right now you’re processing a lot of things so be gentle with yourself. Couple of things I found that made my journey easier:
(1) Had my wife come with me to every doctor visit with a notebook to take notes of everything that was said. This was very helpful as your head is spinning with emotions/stress/anxiety and it’s easy to overlook something said.
(2) Exercise (walk) before you start treatment to build up your strength and stamina…as you begin treatment your body will be able to recover faster. I had three weeks before surgery to walk every day and continued through the first few weeks of radiation until I got too tired to walk.
(3) Consider talking to a mental health professional about what you’re experiencing…the biggest surprise I had was the mental health issues that will come up dealing with cancer and treatment. It’s all consuming and I found talking about it helped me to process my emotions and feelings.
(4) Stanford University Speech and Language has posted a very helpful guide to head and neck exercises to perform during treatment that will strengthen your swallowing muscles and keep your neck and jaw muscles from stiffening and loosing strength. I did these prescribed exercises 3X/day and it saved me from using a feeding tube and made post treatment easier to manage. Two weeks post radiation I was able to eat steak and salad which is not typical for many patients according to my doctor.
I know how low you must feel right now as you start your journey…we’ve all been there and can tell you it’s a lot to deal with…but you will get through this (& believe me one silver lining to getting cancer is my appreciation for life and for my family (especially my wife) is so much deeper than I ever could imagine.
One day at a time, hang in there and know that people are praying for you and your health!

@bluechip33 thank you for your response. I appreciate all that I’ve learned through all of those on this site that have been through this. A bit anxious to learn the stage and treatment plan, but whatever it is, we will get through it.