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Radiation side effects with H&N cancer. When will they ever end?
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.
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It has been 14 1/2 years since my Proton radiation for salivary gland cancer. I underwent hyperbaric chamber therapy about 5 years later since my mouth was still full of sores. It helped, but not 100%. A year or 2 later my teeth began their vacations from my mouth. So far 5 are gone with 2 that are getting ready to depart. There is no indication of necrosis of my jaw....yet. My tongue has never healed and is now getting worse. Removal of a part of my tongue has been suggested, but I said NO. The head of the Head and Neck department said it was all downhill after 5 years since the radiation so I have no belief anything will improve. I am 75. Hopefully for others it will be a totally positive outcome.
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1 ReactionI want to say I have had all of those issues and thought I could live with them just do to the complexity of the issues. I was good with it and great full I could keep doing everything I did before. I've been good till my teeth starter falling out at a alarming rate( seems really strange to me ) even with all the follow ups and the immune therapy I am now for this stubern cancer that won't go away. Small spot in right lung but seem to have stoped growing, hopefully for ever but as we know no one can be sure. Even with all my issues I am going to live like nothing is wrong , best I can do and try to forget everything up till now. Good luck in your journey and best wishes to you and family
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1 ReactionFirst I want to thank you for replying. I am going to retake to my radiologist today. I am Norfolk VA and we have several big and good hospitals here ( At least I think so ) I was told that mandiblectomy procedure very briefly by my ENT a couple of months ago when I had a staple pop through my neck under my chin from the neck dissection, he said I really don't want that done, LOL. I do understand somewhat about that. I am going to talk to several of my DR's because I get CT and MIR"s done every 3 month's from head to wast. None of the 3 have said that there was issue with jaw bone ? If it is a different X-ray I will have that done ASAP. I going to cross my fingers for the best. Thank You again and will be back here
Hello @was123 It is my understanding as well as common sense that when the teeth are failing, the bone is dying or dead. Hyperbaric oxy chamber will not bring that bone back to life. It might help with the blood flow for a while but if osteoradionecrosis has set in, the only thing that works is to have the bone replaced and prosthetic teeth installed.
I don't know where you are located but most cancer centers in the US now offer up excellent surgery for this procedure. An easy way to know if this is the issue is with a jaw or panel xray of your jaw. The bone should show significant reduction from what is considered normal.
I was in the same boat. Local dental surgeons would not touch it. Sadly they don't seem to know what to do as is often the case. The local dentist was not equipped or trained to deal with this. What the local dentist did however at my request was refer me to Mayo Clinic in MN. at my request. That was five years ago. All is well now. I eat what ever I wish without issue.
If your dentist thinks the mandible has been damaged, ask them to refer you to a large cancer center or clinic. The operation is complex but a year from now it will be behind you.
The surgery is called "mandiblectomy with free flap" which means they will take a bone graph (in my case from my fibula) along with good tissue (free flap) with a good blood supply and replace the section of jaw bone that is damaged. The blood supply is connected to the surrounding blood system in your jaw which allows the bone section to live and heal together. The free flap tissue becomes the new gum around the bone.
Any questions just ask. First step is get a referral and forget about all of these non-profit support groups that offer little in actual real support. If your dentist can't do a referral, your local doctor should be able to, even if it is outside their system. Don't get steered to a local small hospital. This is a rare and difficult procedure and should be done only by experience in this specific surgery. Courage.
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1 ReactionI read many things I have since my total radical neck dissection and radiation and chemo treatments, but my major issue is my teeth are falling out and I can not find anyone that will work on my mouth with out 20 treatments in hyperbaric chamber. It's been 2 months with a referral to the hospital that has several chambers. Been there to talk to them still no response , talked to my radiologist without what seems any help so far. I am looking for anyone that has been through or in like condition and get any advise how to go forward with process. Medicare does cover this now but they are no help at all. I have called American Cancer help, Cancer .gov, have called most cancer help people that come up on search online, NO HELP. besides that everything in good. I am 72 and going through immune therapy now and all is well but this is the cancer that left my lip, neck and has arrived in my right lung
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
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2 ReactionsI’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.
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.
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6 Reactions@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.
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1 ReactionSounds 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 🦃😅🥧