Radiation side effects with H&N cancer. When will they ever end?

Posted by William Olsen, Volunteer Mentor @hrhwilliam, Apr 23, 2023

After receiving a full course of radiotherapy for squamous cell carcinoma to the left tonsil area, lingering side effects had to be faced. My very professional oncologist said I should snap back in a month or three however I was his first for an upper throat radiation. Aside from the normal expected side effects during and shortly after radiotherapy, some side effects can last for years.

Head and neck radiotherapy is unique in the fact that vital life areas are being attacked with radiation. The mouth, sinus, gums, salivary system, esophagus, airways, swallowing, vocal chords are all effected. It isn’t like we can stop breathing or swallowing to allow us time to heal. Other areas are usually less complicated.

Because the recovery years are hopefully behind me, I thought I would share with anyone interested and dealing with side effects and assure you that with time things usually get better. I will begin with four side effects and add a few over the next few weeks. This is not to say it is a complete list or that you have or may expect any or all of these side effects. We are all different in our treatments and recoveries.

Don’t be alarmed. I am in my sixties now, in very good health, and enjoying life.

1) Dry mouth. Probably the most common and bothersome. I keep water with me always and at my bedside. Mints help as well. This has improved over the last ten years but I wouldn’t win a spitting contest.
2) Nerve issues on the face and neck. Known as “creepy crawlies” or “bugs on the face” the feeling that something is there although that clearly is not the case. Sometimes rubbing the face or drinking cold water helped. This occurred initially several times per day but after a few years it became infrequent and lasted roughly seven years.
3) Nerve shocks on the left arm and shoulder or sometimes just a dull pain of the upper arm. The shocks would startle me and those around me I’ve been told. Lasted about five years.
4) Neck cramps. Some call this “lock jaw” but it is not the actual tetanus disease and only lasts for usually less than a minute. Mine was often initiated by yawning, a sneeze, a cough, and on occasion eating or talking. Rubbing the area helped and indeed it often felt like a cramped muscle in the neck. Unfortunately this stayed with me for roughly fifteen years.

More next week. If you have any questions or comments or wish to add I would welcome that input. Until then please know time heals all wounds as they say.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

darcybechtel67 | @darcybechtel67 | Dec 11, 2023

In reply to @cbarton "My wife had head and neck cancer at 28 , she’s was 52 and still had..." + (show)

Sounds like everything I have gone through. Thank God for mayo. No one in my area wanted to help me do to my trismus. Since you can't open your mouth we don't know what to do. 5 years of pain and burning. Teeth falling out or breaking or infections in them. Some day I will have new teeth and be able to eat real foods. I'm sorry you guys are going through all this. My cancer was stage 4 squamous cell carcinoma of the sinus cavity. 30 treatments of radiation. Thank God I'm cancer free but it has been rough. God bless you

jersey3422 | @jersey3422 | Dec 10, 2023

In reply to @cbarton "My wife had head and neck cancer at 28 , she’s was 52 and still had..." + (show)

I’m so sorry for your loss. Just know it’s not your fault. I had the same issue, but with insurance. A simple tonsil removal turned into weeks of radiation and chemo. It could’ve been so much easier on my body. Still I’m grateful to be alive. My heart aches for you.

cbarton | @cbarton | Dec 9, 2023

My wife had head and neck cancer at 28 , she’s was 52 and still had side effects.
For 24 years she had zero saliva , she just became accustomed to bringing water anywhere she went.
The “lockjaw” was more severe than most. When she got cold, stressed,or made certain movements it would lock up and be like a migraine for the day.
She unfortunately had a recurrence at 52.
The proton therapy was easier than her previous radiation, only sore in a small area.
She was not able to this second go around.
I blame her outcome over Covid. When she knew there was a problem, she couldn’t get a appointment anywhere, by the time she took her out photos and sent them to md Anderson, it was to far along.
Another side effect was spicy things and cold liquids hurt.
If you feel like your concern isn’t being paid attention to by your doctor, go get a second opinion right away. Early detection is critical for a good outcome.

Colleen Young, Connect Director | @colleenyoung | Nov 20, 2023

In reply to @darcybechtel67 "Thanks so much for talking with me. It means alot. 😍😘" + (show)

@darcybechtel67, you may also wish to join @hrhwilliam and others in this related discussion:
- Mandible Reconstruction with Fibula Free Flap. Is this an option? https://connect.mayoclinic.org/discussion/mandible-reconstruction-with-fibula-free-flap-is-this-an-option/

I sense your concern, but admire your tenacity in getting answers and experiences from others.

darcybechtel67 | @darcybechtel67 | Nov 17, 2023

In reply to @stephenrfleury "My wife, and caretaker, and I decided early in the development of my treatment plan, that..." + (show)

Sounds good. I have so many issues with our doctors here. I was my own advocate and made the decision to go there in September so I'm going to keep going. They were amazing. I like to ask questions. Thanks again for your time and help. Happy Thanksgiving to you and your family 🦃😅🥧

stephenrfleury | @stephenrfleury | Nov 17, 2023

In reply to @darcybechtel67 "Did you second guess yourself asking if you were doing the right thing? We're you scared..." + (show)

My wife, and caretaker, and I decided early in the development of my treatment plan, that Mayo was the expert and I certainly wasn't. We decided to assume Mayo and the care team was right and we would follow their lead. Whatever they suggested, we did. For us, it worked out great, given the circumstances.

darcybechtel67 | @darcybechtel67 | Nov 17, 2023

In reply to @hrhwilliam "I did what had to be done on the recommendation of doctors who knew more about..." + (show)

Thanks so much for talking with me. It means alot. 😍😘

William Olsen, Volunteer Mentor | @hrhwilliam | Nov 17, 2023

In reply to @darcybechtel67 "Did you second guess yourself asking if you were doing the right thing? We're you scared..." + (show)

I did what had to be done on the recommendation of doctors who knew more about the situation than I did. It took a few months to decide and schedule after the initial consult.
Scared? There would have to be something wrong with a person if they weren’t scared. But I give worry to God. I can only do my part and the rest is up to him. Lesson learned from military service. Concern is one thing but worry won’t change an outcome.
Rough road ahead but no regrets now looking back. I’m physically normal again after years of struggle.
Good luck to you on this adventure.

darcybechtel67 | @darcybechtel67 | Nov 16, 2023

In reply to @darcybechtel67 "Thanks 🙏 I'll keep you posted if you want 😍😍😍😍" + (show)

Did you second guess yourself asking if you were doing the right thing? We're you scared or overwhelmed? I'm 56 years old maybe I'm overthinking. I'm in good hands right? Scared

darcybechtel67 | @darcybechtel67 | Nov 16, 2023

In reply to @hrhwilliam "Oh don’t give it a second thought. You are not bugging me. I have other things..." + (show)

Thanks 🙏 I'll keep you posted if you want 😍😍😍😍

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