Navigating my way through throat cancer

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!!!

@rllampton
Who is your ENT at Mayo?

Wonderful! Sounds like your experience was similar to mine. I say wonderful because I know that fear of the unknown was the worst part for me. And now you know. What it is, what will be done about it, and best of all that you are going to be fine. These are the best doctors in the world. I felt lucky to have them as my team. Excellence without arrogance. Going forward your confidence in your team and chosen treatment plan will be a huge part of your successful recovery. I know that was huge for me. I'm so glad it went well for you. I wondered about you yesterday a few times and kept you in my prayers. The study sounds great. I had the full 35 radiation treatments for my tongue and lymph node cancer in 2024 I was in a study, too to reduce that. I know current patients have reported that they are able to stop early because of that such done right at Mayo. I hope that works out for you, too. You are in the best hands.

@sandy8043 yes I am happy to at least know what the prognosis is and the next steps. I was very anxious about not knowing, the brain goes in all kinds of directions. I feel fortunate to have a great group at the Mayo as well as my wife and kids. So will get through this.

@rllampton
Dr Moore is also my dr at Mayo. He and neurosurgeon Dr Link removed a tumor from my carotid neck artery last July. Now I have swollen lymph nodes on both sides of my neck, as well as suspicious thyroid nodes, he said. So, 2 1/2 wks will be getting ultrasound and biopsies of those. I am continually shocked at how much that man has time for. He is the head of the Maxillofacial Dept, as well as the director of international partnerships as well as the newest Mayo board of trustees member. Grateful he has time for me. I didnt get all my questions answered last yr at the pre-surgical visit and told his nurse Rachel what I still need to know. Rather than having a nurse call me back w tge answers, HE CALLED ME ONE.
MORNING to answer any questions I might have!

Had my PET scan this morning and met the surgeon along with a few other members of the team at the Mayo Clinic , will be having surgery in about 10 days on March 23 to remove my left tonsil with about a grape size tumor and a couple cancerous lymph nodes. I will be in a test study on low-dose radiation for tonsil cancer so hopefully if everything goes right, I won’t need the full six weeks. We’ll know more once the surgery happens and the lymph nodes are examined. Glad it was caught early and confident of a good outcome. There is a chance of no chemo or radiation, fingers crossed, but will deal with whatever comes.

@rllampton - Congrats on getting through one of the hardest / scariest parts of your cancer journey. I'm happy you were able to get into the DART study with the de-escalated treatment program. Like you, I had a little larger primary tumor with two cervical lymph nodes that were excised. I ended up in the same trial with 30gy / twice a day for 10 days, and chemotherapy (Docetaxel) each Monday.

My ENT was Katy Van Abel, MD, and coincidently, the surgery was just wrapping up exactly four months ago to the hour. She and her team were outstanding. I couldn't have been in better hands. I'm having my first PET scan at Mayo along with a NavDX test on March 23rd - 25th. You will be in my prayers for peace and healing.

I continue to be grateful for such excellent and compassionate care. I've learned so much and have learned that taking things one day at a time helps me avoid the frequent feelings of being overwhelmed. Feel free to follow up if I can be helpful in any way.

@rebgen Thank you for your response. we will be getting to the Mayo on March 22, I have surgery scheduled on March 23rd with Dr. Moore. I will be there until the 25th. I will then be back to the Mayo on April 6th, where I will learn of the next steps of treatment. I am happy that I was able to be part of the DART study also, i am really hoping I won't need the full 6 weeks of radiation and chemo, but we will see how surgery goes.

@rllampton - I remember having similar concerns about the longer duration treatment option. It sounds like you have a smaller primary tumor than I did and the same number of lymph nodes involved. It'll be good to get your pathology report confirmed and know which track you follow. I ended up in the twice a day for 10 days / chemoradiation regimen and they had everything extremely organized and scheduled.

Like others have said, you are in one of the very best places in the world for your treatment! I had never really been ill until last November and had zero experience being a patient. The support and expertise from all the surgeons, nurses, and technicians has made all the difference in my recovery. I am looking forward to hearing the same thing as you work you way back to health!