Some things your Head and Neck Radiation Oncologist may not tell you.

Thank you @woodsy1. This is quite helpful to those who are experiencing long term side effects. I wish every medical team would discuss these issues prior to treatment but some people may choose not to choose an effective treatment due to possible future complications. Perhaps a discussion at the end of treatment like you had would be more acceptable with the medical team.
I am experiencing neck and facial fibrosis 14 years after Photon radiation therapy. I have had to bring it to the attention of my oncologist and ENT and options for treatment are not easily found.

Thank you for this link with an interesting discussion like one you wish you were having with your doctor!
This answers a lot of questions I have had. I had surgery and radiation for Stage II Acinic Cell Carcinoma of Right parotid gland. I had a decision for a second surgery 2 weeks post op, or radiation therapy. No one talked to me about long-term effects of radiation treatment. I had too much anxiety to consider going back into surgery (a 6 hour surgery that conserved my facial nerve the first time) Later in life I realize I would have benefited from some therapy or even medication and have the second surgery. And that's how my decision for radiation was made. This was at a major hospital medical center. All my (ENT) surgeon said when I told him I would have radiation was, "You are probably going to regret it".

Wow. Even that didn't stop me, I really was uninformed. When I typed that just now, it even feels cruel, considering his national stature as an ENT surgeon. Here's the real piece of this puzzle: I was 34 years old.

10-20 years later I have had to learn self-massage for lymphedema. My inner ear on that side was damaged and I have hearing loss, got hearing aids. I have damaged nerves in my upper back and neck that cause spasms and migraine headaches. Taking baclofen for muscle spasms, that people with MS take. All kinds of problems trying to get treatment for migraines. Of course I have had a very dry mouth, in part because I also have Sjogrens Disease. I never miss a high dose fluoride mouthwash twice a day, have to get expensive deep cleanings at my dentist every 3 months. I'm fortunate I haven't aspirated food or drink. But I'm always choking and trying to be careful all at once!

I always wonder about the effects on your brain with a radiation beam that caused terrible burns inside my throat, and I lost all my hair in the back of my head. I was an RN in oncology and knew chemotherapy. Then end up with cancer that has no chemo. With chemo I would tell people their hair might come back thicker, or curly. Then I had hair loss that became permanent baldness! I don't think my world should have had to turn upside down! It would have been better to have patient information/teaching when I made my decision. This was 1994, no internet, a small support group in the town I lived in. I also was already living with disabling fatigue from what would become 5 autoimmune diagnoses.

Yet, I'm a survivor! I have my life and while it's informed by illness, it does not define me.

The only information passed along to me about radiation effects in 2006 was that about the dental problems it can create. I had objected to doing the surgery after radiation treatment after reading about the possible problems, but my ENT pointed out he would have to take a significant portion of my tongue as the alternative. I acquiesced and it worked out for me. I've accepted most of what has transpired as being the cost of surviving cancer and have learned to live with difficulties. I've learned much here about the treatment of aftereffects, but I haven't needed to pursue most of it as my issues are less bothersome than initially. However, it's good to know that as things get worse, I have options. Thanks for the informative article, Woodsy1.

@sepdvm
Good point Sue. If we knew all the possible long term side effects from chemo , radiation and surgeries we probably would choose some different path with worse outcomes.
I told the post treatment specialist that it was a good thing I didn't know everything she was telling me to look out for going forward.
Cardio problems ? Really ? Fibrosis ? That's just the tip of the iceberg., the list is long.
And the dental issues would have been good to get on top of but I was 1/2 way through treatments when that came up.
So I scheduled a dental appoint to have dental trays made for applying fluoride and by that time my mouth was so sore the flouride burned something awful and had to stop using it until my mouth healed .
The dental issues from the radiation are real, had 3 cavities filled already so will probably be using the flouride trays for the rest of my life however long that may be. That said the alternatives to these treatments would likely be way worse. I would probably be dead already.

After reading other's comments I feel very very fortunate in that I was informed of all of the side effects discussed in the article. I was unfortunate however because I have experienced a lot of them. But, maybe that's because I've lived longer than expected!
One thing not covered was a compromised immune system that gets worse as one ages. I avoid large gatherings and any other situation where germs might be rampant. Even being very careful and getting a flu shot I still contacted Influenza A in early spring of this year. And later even though I had Shingles about 14 years ago and more recently a shot I still came down with a case, albiet light!
About the teeth, while getting the treatments I wore guards but that did not protect the jaw bone. About 12 years out I had molars removed because of deteriorating jaw bone tissue.
Aspiration pneumonia has been the worst problem. I've been hospitalized with that three times. And because of getting it so often I now am on a G-tube for all of my nutrition.
I had follow ups with my cancer Dr. yearly for 20 years and am now on a program called "survivorship". Which is an appointment as needed. Like I said at the beginning, I feel very fortunate to have been informed of the possibilities of the long term side effects. Knowing has helped me deal with these situations positively rather than as a "poor me" victim. Peace to all and take care.

I've been fortunate these past 20 years. I suffer from fibrosis, but it's not much different than the discomfort of arthritis I've dealt with for the past 30 years. Swallowing can be difficult, so I avoid eating foods that complicate the process. Gravy has become my friend. Eating out is avoided due to choking risk. Picking how, when, and where I eat mitigates the problems. As for oral issues, I've experienced a couple of cracked molars that needed crowns, a dry mouth that rarely goes away, and minor swallowing problems. The most serious problem I've had is baroreflex failure, which leaves me no option but to deal with it day by day. All in all, I've had a good run. I've met my 4 grandkids and have watched them grow. Life is fleeting, so I'll take every day I'm given and make the best of it. Some days are just better than others. Live well.

You pretty much described my situation. I'm 15 years post neck disection & radiation and feel very fortunate to have only the long term side effects that I do - fibrosis & cramping, some difficulty swallowing, dry mouth. My biggest challenge is chronic fatigue, although I can't directly connect that to my treatment.

@tominwpg That cancer fatigue seems to be never-ending, though is age a part of it? I always wonder. It is so hard to fight that need to rest, but the result of forced exercise for me is more strength and better sleep. I like being outside so just walking or gardening is a pleasant part of the day. If there needs to be a rest period, then listen to your body and take time to recover. It seems to be a constant battle but I see an improvement when I work at exercising. I am 14 years post surgery, radiation and chemo and the fibrosis is just starting in my neck and face. Have you found anything helpful?