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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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Thanks William, I have not had any response to questions about the jawbone or been referred at all to a bone specialist!
The dental team have had me get two CT's of the Lower Jaw to check the roots of the teeth.
All that is left are the stumps of my incisors and they have acceded to my request to leave them after a special coating is applied and place the new denture in over them.
It will help in locking the Denture and reduce movement. It would seem the jawbone still has some blood supply as it comes up looking not too bad in the Scans. I am looking forward to getting some form of teeth over the next month or so.
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2 ReactionsGood to hear. Sometimes it feels like an uphill climb on loose rocks, like we never seem to make progress. It might take many years. Most folks will never know the battle you fight every day. Teeth issues are just the worst.
I just came from the dentist yesterday to have an upper crown made. Half-way through the doctor asked how I was doing. I just smiled and gave a thumbs up thinking to myself "A crown is easy. I'll take two."
Please keep me posted.
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4 Reactionshae recurrent Breast cancer amd sll !u teeth started breaking ogf st gum.snd so!r just falling out!! Had four extraction s amd Dentist put providional crownd that ere made in office with a liquid?? that made 6 front teeth in an hour!!! look real no denture.
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2 Reactionssorry for all mistakes! Tablet snd Sleepy!
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2 ReactionsI’m currently 19 days post radiation and reading about all of these tooth issues is scary. I was told to be very scrupulous with my mouth care, use a prescription fluoride toothpaste and fluoride mouth wash, and see my dentist every four months. I’m hoping since I had 25 radiation treatments instead of the usual 35 it will spare me some of the worst issues but only time will tell.
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2 Reactions19 days post radiation, you might be at the bottom and just now starting recovery as radiation effects often get worse for a while once the treatment has stopped. Only 25 treatments too. You were pulled from the fire before you turned crusty brown like most of us.
Let me know how you are doing recovery wise. I know the next few months can be difficult.
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2 ReactionsI don’t get any follow-up whatsoever. I have to figure out everything for myself. There’s no systematic effort or process to help cancer patients deal with the long-term effects of radiation if they manage to survive the disease. I don’t think the oncologists who treated me expected me to live long enough to have to deal with the lingering effects of radiation.
Decades ago I tried to contact the American Cancer Society in Texas to encourage them to help cancer survivors such as myself and the nurse who spoke with me was actually *offended* that I was suggesting that a cancer survivor might require any kind of medical treatment for the after-effects of chemotherapy or radiation. This would have been in the late 1980s. That left me permanently disgusted with the American Cancer Society. I will never forgive them for that. I know they offer lip service to survivors nowadays but it’s at least 30 years too late in my opinion.
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4 ReactionsHead and neck cancer seems to be rather unique in the after effects of treatment, most likely because we are treated in a very touchy area. We need to breath, eat, talk, and all that entails whilst the treatment attacks these necessary functions. It’s no wonder that cancer experts often have little idea why we have issues when others don’t.
I was the first H&N cancer for my oncologist and I understand by the time he retired he only had one more. It’s not a common cancer, except of course for this group.
Don’t get too discouraged. At least you have people here to bounce questions off.
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3 ReactionsWilliam thanks for asking how I’m doing. I’m keeping my weight stable and able to eat most everything by taking small bites and eating slowly. Nothing tastes very good but I eat anyway and keep trying different foods hoping some taste buds will wake up soon. Fatigue is my biggest symptom right now. I’m back to work and exercising but I don’t have the same energy I used to. I’m also thinking about talking to a therapist. I’m just now starting to mentally process what happened the last 6 months. I tend to keep things to myself and minimize my issues. My reaction to this is it’s over now get back to life but it’s not that simple. But I know I’m very fortunate and grateful to be alive so I’ll deal with the lingering and long term issues and try to enjoy life.
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3 ReactionsYou are correct that getting back to life is not that simple. It’s like coming back from a war zone only cleaner perhaps.
Your taste should return to near normal in a few months. The other issues usually work themselves out eventually also. The fatigue is the body healing so ten hour night sleeps might take a little life reschedule. That should get better within six months. Docs like to state shorter time for healing but I think that is positive talk run amuck.
Anyway it sounds like you are on the right path. Remember you can always ask about anything about this process. I am here.
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