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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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Oh don’t give it a second thought. You are not bugging me. I have other things going on this week and have been traveling so I don’t always get back with a response right away.
Don’t dwell on your teeth issue too much. Mayo dental will be involved with the mandible resection and can help you determine the best path forward, which may include dentures or partials. You can’t build a strong house without a good foundation.
They will or should ask if you are alone at pre surgery as there is help for you if needed. Going home from hospital you will need help and that will be roughly five days post surgery, perhaps a day or two more. If you don’t have assistance then I believe they make other arrangements for you such as a transfer to a rehabilitation or nursing facility temporarily until you are walking well and done with the feeding tube. They can certainly answer any questions pre surgery so take notes and explain your situation.
For me I had several return trips over several months. About six months of healing before my teeth prosthetic was started, which was also a few appointments as well. None of this is fixed in a week or even a month. Just take it one step at a time.
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1 ReactionSorry if I'm bugging you to much. Just trying to get prepared
So the free flap surgery they removed the remaining teeth you had. I'm curious do I go home with out any teeth. When they did my first surgery they pulled the ones where they removed the cancer. Over the past five years do to radiation my other teeth have broken or fallen out so I only have like 8 teeth left. I won't have any family coming with me. My nephew who lives in California wants to fly over and spend a few days but he wants to know wen the best time would be. I have to stay another week when I get out close by so I wasn't sure when I should have him. Thanks for all the info. Do you feel better now with this surgery you had. I know since my first surgery I feel sluggish all the time. Maybe cuz I don't get the right nutrition. I do take vitamins but not sure they help.
The remaining teeth came out with the mandible section which was removed.
It would be excellent to have one or perhaps two family members with you the morning of surgery. It is usually very early prep. After you are wheeled into surgery the family member(s) can wait in the waiting area and they will be updated of your progress. That being said, the surgery usually takes eight hours plus or minus so the family might want to go back to the hotel for a bit.
After surgery you will be in recovery for an hour or so before you are wheeled up to your room on the other side of the hospital. It is there you can see family but you may not want much company for a day or three. You will feel poorly and have tubes from several places. You will only be able to write on a white board because you will have a trach tube to breath at least for a day or so.
So when they did first surgery did they remove all your teeth. When would the right time for family member come to visit. My nephew wants to fly in from California. My surgery is scheduled for December 7th. I'm in good hands right. I'm kinda overwhelmed and scared
Yes you have the right person. The discussion is in the head and neck cancer group entitled Mandible Reconstruction with Fibula Free Flap. Is this an option?
Can't remember if I have the right person. Are you the one that had the flap surgery at the Mayo in Rochester Minnesota
My heart goes out to you both.
Loosing teeth is horrible at best.
Prior to my stage IV chemo/radiation treatments my oncologist insisted that my wisdom teeth, crown and 2 teeth with fillings be removed prior to treatments.
After the extractions I had to wait 21 days to heal before treatment could begin.
My regular dentist also gave me fluoride treatments prior to treatments and continues fluoride every 6 months.
I also brush my teeth with toothpaste and prescription fluoride toothpaste several times per day. I am nearly 7 years out and so far so good, thank God!
I know this doesn’t help your sister but it may help someone who will be starting cancer treatments.
Wishing you the best.
MOJO
Thankyou again! Your wife is so right! so glad your journey has alot of upsides with your healing > Optimism and positive outlooks are key. I wish both of you well too!.
I'll keep you posted
I got prosthetic teeth for the lower left after my mandiblectomy. I did not have tongue involvement like she did as mine was in the tonsil and lower sinus as well as beneath the tongue. Years to a new normal followed by the mandible surgery about 19 years later. Still enjoying life however. Something like this happens and it really gives life a new focus. I wish you both well. As my wife who has MS in addition to dealing with my bag of hammers says, "Life is what happens when you are making other plans."
Keep me posted as to her recovery and if you have questions, I or someone is usually reading these feeds.
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