long term side effects of radiation for head/neck cancer

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RE: long term side effects of radiation for head/neck cancer

by ricketty on Wed Apr 04, 2018 02:54 AM

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so one's throat can be "stretched" after radiation and chemo?....if so how often does one have to do it and what are the long term effects?

RE: long term side effects of radiation for head/neck cancer

by Sdurnell on Wed Apr 04, 2018 05:45 AM

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Ricketty,

The long-term effects of my first throat dilations were that I could eat by mouth again, something I couldn't do for months after my treatment.  It's pretty rare, though, for radiation to completely close the throat.  Most people just have theirs narrowed.

In the 7+ years since my treatment ended I have had around 20 dilations.  The last one was 2 weks ago, but the one before that had lasted me 13 months, and my throat had not closed up as much as before this time.  But most folks only need one or a few.

My doctor puts a scope down my throat with a balloon, under sedation, and inflates the balloon to stretch the throat.  Usually he does 3 sizes--12 mm, 13.5 mm, and 15 mm.  Some folks are dilated up to 18 mm I believe.

Other than a sore throat for a couple of days to a week (I can always still eat), the only side effect is goofiness or memory loss until the sedation wears off.  

Susan

RE: long term side effects of radiation for head/neck cancer

by Dlynn1210 on Thu Apr 05, 2018 02:51 PM

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On Apr 04, 2018 2:54 AM ricketty wrote:

so one's throat can be "stretched" after radiation and chemo?....if so how often does one have to do it and what are the long term effects?

I endured chemo and radiation in 2007 for tonsil cancer - 10 1/2 years later still cancer free. Every type of cancer is different and even head and neck cancers have different areas radiated. The majority of us who had tonsil cancer wind up needing esophageal dilations. The ENT who diagnosed me was the one who did my first dilations and they were very effective. Then we moved to FL and I put off getting a dilation until I was barely able to eat. The first ENT I went to told me gastro doctors did them in FL - not ENTs (I later found that was not true). I was hospitalized for another problem and the hospital called in a gastro doctor because I was aspirating with every bite. That doctor did a dilation but when another doctor mentioned my having a balloon dilation, I asked my husband to bring my records from IL to the hospital. They showed a rigid dilation instead of a balloon or flexible as being referenced by doctors at the hospital. I called my ENT in IL and found out there are two types of dilations. She told me I needed a doctor who specialized in head and neck cancers who could do a rigid. I was fortunate enough to find an ENT who did his fellowship in head and neck cancer oncology at Stanford. He did a rigid dilation one month after the flexible and I was eating within days. I initially had a dilation every year and half but as I have gotten older, they are more frequent - approximately a year apart. Just a part of my routine and one I gladly accept to be cancer free. Diana

RE: long term side effects of radiation for head/neck cancer

by Proxielocks on Fri Apr 06, 2018 03:16 AM

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On Sep 20, 2013 9:54 AM Mary53 wrote:

I am 6 years out and cancer free but have found my issues getting worse with time. I still have my feed tube as radiation killed all the swallowing muscles  ( did the swallowing and speech thing), my mouth doesn't open very wide (like lock jaw, a surgeons and dentists worst nightmare), sinus issues getting worse and voice at time is terrible. Heaven forbid I catch a cold because I'm lucky I can be understood at all let alone breath.It "" target="_blank" rel="nofollow">http://breath.It " target="_blank" rel="nofollow">breath.It seems there isn't much we can do about it. I have tried a few things with no success, so have just accepted it as part of my life.

On the plus side I am blessed to still be alive as I know many that never had any time.On "" target="_blank" rel="nofollow">http://time.On " target="_blank" rel="nofollow">time.On the once and a while days I get depressed because I have so many issues I thank god I'm still alive and able to travel and spend time with my family and friends.

Good luck with trying something new and would love to hear if it works.

My husband is almost 15 years out. He has been back on the feeding tube now for two years. He got to where he could not eat or swallow anything by mouth. He was aspirating so we went to UCSF which is one of the best places to go. However, when we went in and they did testing on my husband and back for the results. They said that there was nothing that can be done for him. They said that it would never get better but would only get worse. That is excatly what has happened in the last two years since going there. His teeth have starting breaking off and have really gotten bad. We have gone to 4 dental speciaiist. He was told that if they were to pull his teeth, that they would not most likely heal and get an infection or even bleed to death. He wouldn't be able to get dentures or inplants because they would not hold. He is unable to speak most the time. If he tries to talk it is hard to understand what he is trying to say. This makes him very angry. Foam comes out of his mouth which he has NO CONTROL over. Where he works his job got him a table that speaks for him. He types what he is saying and then it speaks for him. Head/Neck/throat cancer is a Mental Heath disease. Not for just the person who has it but for the caregiver too. I would sugguest that anyone who is going through this get professional help to learn how to deal with it. As for me the wife and caregiver it has also effected me also because of my health too. It has effected me mentally because I cry all the time. We both have depression. I love my wonderful husband however, cancer changes your life. It takes so much away from you. My husband run between 7-9 miles a day. He ate healthy, and he never drank or did drugs, and he is the one that gets cancer. I guess it doesn't matter how good you are you can still get cancer.  Prayers to all that are dealing with this NASTY BEAST AS WE CALL CANCER.

PATTY-WIFE & CAREGIVER

RE: long term side effects of radiation for head/neck cancer

by Sdurnell on Fri Apr 06, 2018 03:16 AM

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Ricketty,

So there you have it--two ways to manage a constricted throat with dilations by a couple of different kinds of docs (mine was not treatable by my ENT, so I go to a GI for them).  And more or less similar results.

Many folks don't need dilations for as long as we do, and only have one or a few.  But they are a piece of cake.  Sometimes (every 5 years) I have a colonoscopy at the same time--saves a bit of $ due to only one sedation episode.

All the best,

Susan

RE: long term side effects of radiation for head/neck cancer

by Dlynn1210 on Fri Apr 06, 2018 03:58 AM

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Rick I did not see what type of cancer you were diagnosed with which is important to comsider when looking at dilations. The area radiated for tonsil cancer is higher up than the area radiated for esophageal cancer. By the time the ‘balloon’ is inflated during a flexible dilation, it is past the area that is more constricted for those of us who had radiation for tonsil cancer. Not just any ENT has the expertise to do a rigid - as my first ENT said while I was hospitalized, “You need an otolaryngologist and one ‘experienced in head and neck cancer’ (she stressed that not just any ENT could do one). I was blessed enough to read a review that was written 5 days after I was released from the hospital sharing how this ENT helped him more than his oncologist. ‘This’ particular ENT did his fellowship in head and neck cancer oncology at Stanford so he definitely was not just an ENT. He has been a blessing for me. Dilations are a day surgery procedure and fairly simple. Those of us who have had them can assure you they are nothing to be concerned with. Diana

RE: long term side effects of radiation for head/neck cancer

by Harbour on Fri Apr 06, 2018 10:07 AM

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I am an almost 17 years survivor. Cancer in my left mandibular salivary gland. Surgery and radiation (32) over 6 weeks in 2001. The radiation is my life's biggest regret! It almost killed me. And took several years of my life. Just as I thought I was recovering things started getting worse. Everything still gets worse. Now, about my teeth and jaw I am scared now. One and a half year ago I had two loose teeth extracted, and at the same time I had a deep biopsy in my jaw bone. That left me with a serious and permanent nerve damage in my lower lip and chin. The one tooth broke at the root, so that the surgeon had to drill the root out. The wound did not close, and it took a very long time for it to heal. So, two weeks ago my dentist sent me to the oral surgery department because I had a little pain in one of the two teeth I have left in my left side. The root of the tooth is infected, and the surgeon suspect that the infection has invaded my jaw bone, and that there is osteoradionecrosis in a small area of the bone. He wants to remove the tooth and the dead part of the jaw bone. The risks are: the infection and the osteoradionecrosis might spread, and more nerve damage. I risk the same if I don't have it removed. Still he recommends surgery. I just don't know. He refused to refer me to Hyberbarics. And I won't let him cut in my jaw bone again if I don't get Hyberbarics before and after. Or maybe Pentoxifylline and vitamin E. I don't know what is best. I guess no one knows really. I am so scared I might lose my jaw bone. 

RE: long term side effects of radiation for head/neck cancer

by cagy2 on Fri Apr 06, 2018 12:11 PM

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Harbour,  The first thing I recomend is to find a different Dr.!!!  In my case, teeth were extracted before Radiation because it can cause just what you have turned up with.  False teeth, although are a pain, in beats retiring a dentist.  My front teeth broke off after several years of being repaired.  Good luck and steer your own ship.  Dr's are only people.  Most are good, others outstanding.

RE: long term side effects of radiation for head/neck cancer

by cagy2 on Fri Apr 06, 2018 12:15 PM

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On Apr 04, 2018 2:54 AM ricketty wrote:

so one's throat can be "stretched" after radiation and chemo?....if so how often does one have to do it and what are the long term effects?

Yes, you can have throat stretched.  Time between varies with the person.  I just had my 14th since 2005.  Had 3 in 6 weeks once when it closed up after radiation.

RE: long term side effects of radiation for head/neck cancer

by butler on Fri Apr 06, 2018 01:48 PM

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Hi Diana,

Would you be so kind as to ell me your doc in Fl name?  My sister lives in Vero and needs dilation (not from radiation) but would appreciate any recommendations.  She has PsA, I've had BOT cancer 2016, and think I may be headed for a recurrence and live in MA.  I can't find a good dental team that knows anything about h & n isses regarding tooth destruction

Thanks,

Sara

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