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 Shirleyperez on Sat Jun 02, 2018 09:38 PM

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On Jun 02, 2018 9:13 PM cagy2 wrote:

How can people have such different problems to the same illness?  Putting in a PEG after 6 years seems like surrendering to a life on the tube.  I've had 14 dilations and as long as it works I'll never have a PEG again unless my life depends on it.  Maybe some Dr's don't like to do PEGS  Eating isn't enjoyable as before cancer but at least I don't have to diet!!  I'm 8 years out.

I want to have my g tube taken out so badly. My problem is that my throat is so narrow from my first throat cancer 33 yrs ago they couldn’t put it in thru my throat. . They had to do surgery to put it in and it was very painful because they had to cut the stomach muscles. I don’t want to go thru that again! But this tube is always leaking. When I had dilation 33 yrs ago, the gastro said he would not do a 4th for fear I would tear, but I’m going to see if an ent can do it, this is why I can’t u derstand when I read about people having so many.smp

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

by cagy2 on Sat Jun 02, 2018 09:51 PM

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On Jun 02, 2018 9:38 PM Shirleyperez wrote:

On Jun 02, 2018 9:13 PM cagy2 wrote:

How can people have such different problems to the same illness?  Putting in a PEG after 6 years seems like surrendering to a life on the tube.  I've had 14 dilations and as long as it works I'll never have a PEG again unless my life depends on it.  Maybe some Dr's don't like to do PEGS  Eating isn't enjoyable as before cancer but at least I don't have to diet!!  I'm 8 years out.

I want to have my g tube taken out so badly. My problem is that my throat is so narrow from my first throat cancer 33 yrs ago they couldn’t put it in thru my throat. . They had to do surgery to put it in and it was very painful because they had to cut the stomach muscles. I don’t want to go thru that again! But this tube is always leaking. When I had dilation 33 yrs ago, the gastro said he would not do a 4th for fear I would tear, but I’m going to see if an ent can do it, this is why I can’t u derstand when I read about people having so many.smp "" target="_blank" rel="nofollow">http://many.smp " target="_blank" rel="nofollow">many.smp

It all depends on your Dr.  Waiting a long time between dilations is bad because your muscles stiffen up.  Mine closed up completely for about 6 weeks or so and 3 dilations within another 6 weeks opened it to a 15 which is about my max.  It's like a balloon, keep stretching it and it gets less resistance.  It goes into your stomach wall.  They can stretch your throat to get the button end in.  Try a different Dr.  They all are different from the reports on this site.  I had very good ones.  They should have dilated then put tube in.  Always second guess Dr's.  They all aren't that great!!!!

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

by Sdurnell on Mon Jun 04, 2018 05:43 AM

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On Jun 02, 2018 9:13 PM cagy2 wrote:

How can people have such different problems to the same illness?  Putting in a PEG after 6 years seems like surrendering to a life on the tube.  I've had 14 dilations and as long as it works I'll never have a PEG again unless my life depends on it.  Maybe some Dr's don't like to do PEGS  Eating isn't enjoyable as before cancer but at least I don't have to diet!!  I'm 8 years out.

The reason we all have somewhat different problelms is that we are all different people and our tumors, even at similar stages, are different too.  Add to that the reality that treatment varies somewhat and that what treatment we do get affects each of us somewhat differently, and we are each our own unique case.

And then there are variations in what our doctors expect or recommend, as well as differences in how well we follow doctors' orders.  And we all have different tolerances for discomfort and various medical procedures.

I'm with you on sticking with throat dilations--I've had around 20 in the 7 years since I finished treatment.  But I'm hopeful because the next-to-last one was good for 13 months, a new record.  

But dilations don't work for everyone either.  And they don't always work forever.  I've already experienced some "late-term radiation effects" to my voice, and it's not uncommon that there can be swallowing issues later on as well.  At one point it was thought I might be a permanent tubie, and I came to terms with that, so I know I can again.  If I need to "surrender" to a life on the tube, so be it.  I know it's not the end of the world!

Susan

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

by Sister58 on Mon Jun 04, 2018 02:22 PM

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Hi, Susan. You are so right about each case being different. My brother did well for about 12 years after massive doses of radiation. In about 2012 everything started to fall apart. His right arm began to weaken. His voice became very raspy, and he began to have trouble swallowing, and would aspirated quite often. Unfortunately, we knew nothing about dilation, and his doctor (who we have since dismissed) did not tell us about this procedure. He has since lost the use of his right arm, and was put on peg tube. In 2015 he had a tracheotomy. In May of last year he had laryngectomy and his tongue removed because of a new tumor. In April this year he had pharyngectomy. The doctor removed about 1 inch of esophagus and rebuilt it with muscle from his thigh. Fortunately, he is healing well. We pray that this will be his last battle with this horrible disease, but don't walk around with blinders on either. Ever cautious, and checking for anything abnormal. I wish we had known more back in 2001. My first recommendation to him would have been to search out another doctor. If I could give anyone who his facing this kind of cancer some advice, it would be ALWAYS GET A SECOND OPININION FROM SOMEONE WHO HAS DEALT WITH THIS BEFORE. As always my prayers are with you all.

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

by Shirleyperez on Mon Jun 04, 2018 02:29 PM

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On Jun 04, 2018 2:22 PM Sister58 wrote:

Hi, Susan. You are so right about each case being different. My brother did well for about 12 years after massive doses of radiation. In about 2012 everything started to fall apart. His right arm began to weaken. His voice became very raspy, and he began to have trouble swallowing, and would aspirated quite often. Unfortunately, we knew nothing about dilation, and his doctor (who we have since dismissed) did not tell us about this procedure. He has since lost the use of his right arm, and was put on peg tube. In 2015 he had a tracheotomy. In May of last year he had laryngectomy and his tongue removed because of a new tumor. In April this year he had pharyngectomy. The doctor removed about 1 inch of esophagus and rebuilt it with muscle from his thigh. Fortunately, he is healing well. We pray that this will be his last battle with this horrible disease, but don't walk around with blinders on either. Ever cautious, and checking for anything abnormal. I wish we had known more back in 2001. My first recommendation to him would have been to search out another doctor. If I could give anyone who his facing this kind of cancer some advice, it would be ALWAYS GET A SECOND OPININION FROM SOMEONE WHO HAS DEALT WITH THIS BEFORE. As always my prayers are with you all.
Can you tell me the name of dr who operated on him by replacing muscle from his thigh. For future reference should I need it. Smp

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

by Sister58 on Mon Jun 04, 2018 02:54 PM

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James went to UT Southwestern, Zales Lipshy hospital, (which is closing soon, but a new one is already open, and preparing for patients.). Dr. Larry Myers did his surgery last May, and in April, this year. DR. Gordon did the reconstruction this year. I'm sorry, I can't remember Dr. Gordon's first name, but he works closely with Dr. Myers. I can't say enough about these doctors and their residents. The staff at the hospital is also excellent. We were there for two weeks, and the care James received was excellent. That being said, I hope you never have to go thru this. Beverly

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

by john19382 on Mon Jun 04, 2018 03:02 PM

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thank you all for sharing and the support.   My last radiation treatement was July 8, 2013 so I am almost 5 years out. 

When I was getting PT in 2013 my Physical Theapist commented that radiation is the gift that keeps on giving.   I had no clue what she meant, but am now starting to understand. 
Even with Proton Radiation there are lasting and late term side effects.   While I am still  able to swallow, food gets stuck more frequently so I have to eat much more slowly and chew my food thoroughly.   
I see a speech/swallow pathologist every so often and she gives me some good suggestions for exercises to help.  
I have learned a good deal from her as well as from the posts here.  

I will keep all of you and your loved ones in my thoughts and prayers.   Thank you  

John

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

by KLAllums on Mon Jun 04, 2018 04:52 PM

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I am in the same situation.  My problem was I had ulcers all over my mouth and tongue which prevented me from talking and made me so sick that I threw up all day for months.  Had several trips to hospital.  I asked for my peg tube pretty quick.  My Problem is I am still developing issues 8 years later.  The doctor said scar tissue is still growing.  I wish I would have known about all this before I decided to do my treatment.  I might have gone and got other doctors opinion before I started.

Sorry that you are having to go through your problems

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

by Shirleyperez on Mon Jun 04, 2018 06:37 PM

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On Jun 04, 2018 4:52 PM KLAllums wrote:

I am in the same situation.  My problem was I had ulcers all over my mouth and tongue which prevented me from talking and made me so sick that I threw up all day for months.  Had several trips to hospital.  I asked for my peg tube pretty quick.  My Problem is I am still developing issues 8 years later.  The doctor said scar tissue is still growing.  I wish I would have known about all this before I decided to do my treatment.  I might have gone and got other doctors opinion before I started.

Sorry that you are having to go through your problems

I had second and third opinions and they were all the same if you want to live. ??Smp

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

by GerryMcD on Wed Jun 06, 2018 03:40 PM

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I often thought the same way and I am 48 years out.  However, I learned that no doctor can tell you what your long term side effects will be.  It's like watching those TV commercials for drugs.  When they read off the possible side effects, who would want to take them?  But the treatments do help MOST people. 

The amount of radiation I was given is now considered excessive, but to stop and remember that it's been 48 years and I'm still alive.  I've had numerous surgeries on my sinus', lost my hearing in one ear and most of it in the other, had to have a subclavian bypass and last year had the last 14 teeth removed (most were just stumps by that time).  Although I get frustrated when I'm dealing with yet another side effect, I think it's all been worth it in the end. 

I've also learned not to discourage someone when they ask me if they should go for radiation treatments because of my own experience. Although I would never do it again, I don't have the right to take away their hope that it might save them or give them more time here on earth.

I've lost two siblings over the past four years. One went through every treatment they could think of because he was determined that he could beat it.  My sister however died within three days of being diagnosed with throat cancer.  Which one as better off in the end.  I'll never know the answer to that.  I'm glad my sister didn't have to suffer through the battle, but I'm also thankful to have had my brother for an additional four years after the doctors were ready to give up.

All I can say is: we are not alone in this battle.

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