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.
Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.
We should have applied to become Monks with our hair like that. I thought I was the only one trippin!
I had sensations on my teeth, probably the filled or crowned ones but no way to pinpoint it. Anyway that was during radiation and for a couple weeks after I was done with the treatments. It was for me not anything too drastic but all of us are different. I hope that gets easier to cope with. Teeth can be a torture device. Maybe your PCP could get you a good pain med? One thing doctors should be able to control is pain.
I doubt if the Gallium continues to reside in you as that usually washes out of your body within hours of a pet scan.
ntodd, I am at a loss for words. While most of us have a good outcome, not all of us do. Your life becomes a daily struggle. Then we have to ask if we are better today than last week or last month and hopefully the answer is yes. And if it is not so, then I am at a loss. I am the guy in the bleachers watching you in the race, hoping that you continue, knowing that each step is difficult or almost impossible.
Yet here you are, on this forum looking for answers but also helping others who have questions. So I know you are still in the race. I can't carry you but I can listen to you, watch you, and pray for you. You always have all of us broken folks to vent to. You are not alone.
When you get radiation started can you let me know how you are doing? If you have any concerns can you give me a shout out? I hope all goes well. The side effects will continue to bring you down for a few days to weeks after the radiation treatment ends so don't be alarmed.
I'm sorry to hear of your increase in health issues related to your cancer treatment. It's not supposed to go in that direction. Have you considered your fatigue issue may be caused by something else such as thyroid? Are you getting any help with issues from your care team?
You are correct on the issue of teeth. Regardless of what can be done prior to radiotherapy, the jaw bone (Mandible) can be damaged to where it may literally die. And when that happens the teeth roots cannot keep the teeth alive and strong. Dentists will recommend fluoride treatments however from what I read, fluoride is not good for bones.
I had a mandible section replaced with part of my fibula and blood supply flap to keep the bone alive and allow it to heal with the remaining live sections of mandible. I was 65 when this was done at Mayo Clinic and it has worked well. I can eat easily now. Have you considered something like this as an option?
Thank you for your reply. I’ve had thyroid issues for about 10 years, specifically hyperthyroidism which is monitored by my endocrinologist. I get frequent blood tests done for it and medication adjustments as indicated by my results. I’m having a CT scan tomorrow to look at my abdomen, hopefully, to see if they can find a reason for my stomach issues and weight loss.
I’m not giving up. The GI issues and constant fatigue have really impacted my quality of life. Thanks again for your support.
Should get scheduled early part of this week, anxiety keeps wanting to creep in so keeping myself busy thank the Lord
Thank you
Anxiety? The very definition of Cancer. But your handle is Winstonbuffy. Winston would say “Keep calm and carry on”. Or more importantly “ Courage!” ;>)
Thank you for your thoughts. Sadly my primary care physician is useless. I had excruciating back pain for months which he did nothing about. Sadly it turned out to be cancer. I just use him for Rx refills and use alternative care as much as I can.