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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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My problems were due to malfunctioning equipment. On one or two occasions, machines were not in use. I probably got zapped before they discovered the problem.
The effects of radiation will continue for the life of the patient. In my case, they got to the point that I can’t eat food like a normal person of my age, which is mid-60s. I have to take antibiotics to mitigate the risk of osteoradionecrosis and I believe this is also why I stopped getting aspiration pneumonia.
The xerostomia never gets better and the trismus (lockjaw) also gets progressively worse. A new patient can probably mitigate trismus just by forcing their mouths open as physical therapy. I wish I had done this because now my teeth are in terrible shape and I can’t get dental work done because my mouth will not open more than a centimeter or so.
An old ENT doctor told me that in the early days of radiation therapy they would remove a patient’s teeth before starting radiation on the head-and-neck area. I was supposed to put fluoride on my teeth at bedtime for my entire life, but I was a teenager and didn’t think I would survive very long anyway, so I blew it off. Eventually I lost most of my teeth.
Another thing that I was not warned about is the risk of severe nosebleed. Doctors call it epistaxis. I had a completely unexpected nosebleed that put me in the hospital for nearly a week. The emergency room treatment for this kind of epistaxis is a form of torture that involves shoving something like a condom into the nostril and filling it with water. It was possibly the worst pain I have ever experienced and that includes a radical neck dissection. The pain was so bad that I kind of went into shock and thought incorrectly that I had gotten a shot of morphine or Demerol. But anyway, be careful about taking aspirin if you are using nasal steroids.
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7 Reactionsso sorry to hear about this and so glad you have finally reached a stage of less aggravation. i know this is not the same thing anywhere what you had as i have the aggressive papillary carcinoma. probably not on the right page, but, since you have been through alot it sounds like you might just be able to answer my question. i am going to have the radioactive iodine pill on may 8th of 2023. i just started to research and do not like what i am reading and the truth is, i didn't expect thyroid sugery to be as hard as it was. still suffering from the january 31, one on the right side, radical dissection. i still feel like i have the thick dog collar around my neck, swallowing is still hard. the whole right side of my body hurts no matter what i do. my main question was though: i am told i will only be at the hospital for 2 hours, have to suck on lemon candies to help the salivary glands. i just wonder what the real outcome is going to be as they said thyroid surgery, i would be fine. well, i'm not. thank you again for letting me vent. i can't wait till you post more about your radiation side effects. god bless
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3 ReactionsI had head and neck radiation 20 years ago at MGH. The treatment burned a hole in my face, caused problems with a number of teeth and I still have morphea around my abdomen. MGH never told me there were problems with some of the head/neck machines and I should have sued.
I also have a lot of scar tissue from radiation, mainly in my abdomen. The cancer did not return.
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4 ReactionsIs still experience side effects from my radiation that ended in October. Stabbing pains and some fatigue. I am just keeping the faith that they will all subside soon - with time.
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