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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.

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William Olsen, Volunteer Mentor | @hrhwilliam | Apr 30, 2023
In reply to @brenda11 "Hi there, I’m a 74 year old woman who was in fairly good health until I..." + (show)
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Hi there, I’m a 74 year old woman who was in fairly good health until I had radiation therapy for 5 days/week for 7 weeks following surgical removal of a small malignant tumor on my larynx 7 1/2 years ago. What prompted me to see an Otolaryngologist was that I’d lost my voice. Could only talk in a whisper. Apart from that, no other symptoms. Toward end of treatment I was beginning to really feel the fatigue, which got worse after treatment ended. I was warned about this by my doctor. My voice started to come back but within about 6 months I developed severe pain on the left side of my throat that radiated up to my ear. The doc that did the surgery sent me to a Laryngeal specialist at Mass Eye and Ear in Boston. His immediate diagnosis was a bad infection. He put me on a very aggressive course of antibiotics and anti fungals for 30 days. This led to severe GI problems, which persist and have worsened over these past 7 years. I now have a diagnosis of gastroparesis, slow gastric emptying, which means I can’t be far from a bathroom for most of the day. It causes me a lot of severe and nearly constant stomach discomfort.
My fatigue has increased since the RT and between that and the GI problems, my quality of life is really diminished.
The only thing that resolved after RT were the burns on my neck.
I still have problems with not enough saliva and my teeth have gotten worse, for sure.
My fatigue makes me feel depressed at times and that makes me anxious and less inclined to do anything or go anywhere.
Really upset about these cascading health issues.

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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?

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William Olsen, Volunteer Mentor | @hrhwilliam | Apr 30, 2023
In reply to @winstonbuffy "You are a GOD sent I have just been diagnosed with this same cancer in the..." + (show)
Profile picture for winstonbuffy @winstonbuffy

You are a GOD sent I have just been diagnosed with this same cancer in the same location and waiting for the date I start my radiation treatment. I am 68 and feel great and in good shape so GOD willing it will go well
Thank you and I’ll be reading more of your experiences .

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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.

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William Olsen, Volunteer Mentor | @hrhwilliam | Apr 30, 2023
In reply to @ntodd "Oh so many of the symptoms. After what seemed like an eternity, actually twelve months, they..." + (show)
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Oh so many of the symptoms. After what seemed like an eternity, actually twelve months, they finally discovered I had a very aggressive squamous Cell Carcinoma radiating down from under my right jawline. The little sucker used my Tri-Geminal nerve as a very nice conductor. The pain apart from being weird, caused no end of pain. It is unsure if the Tumour or the radiation did the damage, but the Myeloid coating on the nerve has gone. I had what the technician called "The heaviest Radiation Dose he had ever dispensed"

I am left with lifelong pain as the coating won't recover, also the scaring on my larynx and constant problems with Infection and Fungal growths. I am presently on a new form of anti-fungal which seems to be improving the problem. The other is opposite to most of you. I have excessive saliva and a constant problem with Mucus.
The Mucus is so bad it forms and at times almost blocks my airway, which creates a huge coughing fit which aggravates my whole larynx and so the problem goes on.

This is now my 3rd year after Radiation and Chemo and each year a biopsy has been done as the ENT Docs believe my Larynx has gone rogue and needs to come out. Both the earlier times I have refused saying life is about quality not quantity and I will go with all the nasty bits still in. In all earlier tests it came back as negative for a tumour anyway. This year to be sure they have ordered a second biopsy as they expect to find the cancer with or without my help.

Between my constant cough and the ongoing extreme pain along with the excessive use of Kleenex now my complete loss of voice from all the above Life doesn't seem to hold any form of quality and it is just one ongoing trip to the doctor for no energy, pain management or referral for more pain killers. It is my firm hope the rest of you do not get into my situation.. Wishing all a speedy successful recovery.

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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.

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William Olsen, Volunteer Mentor | @hrhwilliam | Apr 30, 2023
In reply to @brianhavefaith "For the past several weeks since I started radiation and chemo treatment.and recently finishing A Galliume..." + (show)
Profile picture for brianhavefaith @brianhavefaith

For the past several weeks since I started radiation and chemo treatment.and recently finishing A Galliume treatment, I’ve had an intense swnsation to anything even relatively cold in my mouth. It’s like the pain shoots through my molars and through my jabones. anyone else deal with this? What did you do? My dentist yesterday sold me Sensodyne. That seems like treating the symptoms but what about the cause??

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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.

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William Olsen, Volunteer Mentor | @hrhwilliam | Apr 30, 2023
In reply to @smittyfromcuse "I also had the hair on the back of my neck come off in a straight..." + (show)
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I also had the hair on the back of my neck come off in a straight line. My wife asked me if I had cut it with clippers. My radiologist explained to me after I asked that the radiation went in. 360 arc around my head.

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We should have applied to become Monks with our hair like that. I thought I was the only one trippin!

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William Olsen, Volunteer Mentor | @hrhwilliam | Apr 30, 2023
In reply to @ltecato "The effects of radiation will continue for the life of the patient. In my case, they..." + (show)
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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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Teeth issues are the worst to deal with. Mayo should be able to help you with the osteoradionecrosis and rebuild of your teeth and jaw if you are interested.
I took antibiotics for years although it does nothing to stop the bone death as I understand. Only to help with the constant infections around the tooth root.
It sounds like you have had a rough journey. Are you getting issues under control such as eating and getting on with life?

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William Olsen, Volunteer Mentor | @hrhwilliam | Apr 30, 2023
In reply to @jdernburg "I had head and neck radiation 20 years ago at MGH. The treatment burned a hole..." + (show)
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I 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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Grateful the cancer never returned but what a horrible journey you had to endure to get here. As someone said, "What doesn't kill you makes you stronger." You no doubt have a wealth of advice for those just starting out. Thumbs up to you.

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William Olsen, Volunteer Mentor | @hrhwilliam | Apr 30, 2023
In reply to @sm22 "Is still experience side effects from my radiation that ended in October. Stabbing pains and some..." + (show)
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Is 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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I think you will see that those pains will subside, or at least I hope they will. This is one of those issues that cannot be explained to someone who hasn't had the experience.
As for the fatigue, your primary care physician can order up thyroid T3, T4 TSH blood tests easily along with perhaps other enzyme tests to possibly help get a grip on the cause of fatigue. radiation can damage the thyroid, which is located in the front base of the neck. It is not uncommon to want to sleep 9-10 hours per night during recovery but simple tests can put your mind at ease.

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William Olsen, Volunteer Mentor | @hrhwilliam | Apr 30, 2023

Radiation side effects with H&N cancer. When will they ever end? Part III final:
To finish off the list of side effects I experience(d) after radiotherapy we start with an easy one.
10) Sparse or limited beard on the left side of my face and neck. This is on-going. It is not a big deal and cuts down on my morning routine time but if I should wish to grow a beard, well that's not a sight anyone should see.
11) Difficulty swallowing > 1000mg meds and certain foods. Breads, white rice, white meat poultry and anything dry does not work in my throat so is either avoided or modified with liquids. After years of testing, I know what works and what doesn't and it becomes a way of life.
12) Osteoradionecrosis of the left mandible (death of the jaw bone). This required surgery which was done at Mayo , Rochester. All is very okay now. Thanks to Dr. Ettinger and crew. This is a story in itself but was probably the most difficult of all the post issues to deal with.
13) Cancer Free! The only good side effect from radiation treatment is I never had a re-occurrence of the initial cancer.
While some or all of these side effects were going on over the past twenty-some years I did not sit and wallow. I continued with life and made whatever accommodations were necessary to move on. I fought with the Federal Aviation Administration to maintain my pilot's medical requirement. My occupation as a traveling engineer (field engineer) continued with work all around the world. My family life continued. The lawn got mowed. The kid went to university. Despite setbacks and issues to deal with, I was still looking at the grass from the green side. We learn to cope and we continue with life. As the song says, " If you have the choice to sit it out or dance, I hope you dance".

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thomason | @thomason | Apr 30, 2023
In reply to @brianhavefaith "For the past several weeks since I started radiation and chemo treatment.and recently finishing A Galliume..." + (show)
Profile picture for brianhavefaith @brianhavefaith

For the past several weeks since I started radiation and chemo treatment.and recently finishing A Galliume treatment, I’ve had an intense swnsation to anything even relatively cold in my mouth. It’s like the pain shoots through my molars and through my jabones. anyone else deal with this? What did you do? My dentist yesterday sold me Sensodyne. That seems like treating the symptoms but what about the cause??

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@brianhavefaith, please research "red light therapy." I believe this light to be very, very healing in many conditions. Utilizing the light consistently may help alleviate your issue. My thoughts are with you.

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