Difficulty Swallowing 6 years into remission

DLS5419

My mother(46 years old) is a 6 year stage 4 tonsil cancer survivor(as of may). After surgery to remove tonsils, 22 treatments of radiation, and 2 different concurrent chemotherapies, she was given the thumbs up for no cancer. However, she had been severely burnt from the inside out with sores from her lips down her esophagus. She was sloughing, was deaf in one ear, and could not swallow even water. She was receiving nutrients from a port on her chest (TPN) and pain meds. After months of healing, mom was left with only a few working saliva glands and has had to carry water with her constantly. The past six years have been filled with ups and downs. In 2006, mom had to have an ablation as an issue after chemo. From 2007-2008, mom was on constant oxygen for 8 months after her lungs failed to work properly (doctors never did figure out the complete reason why they had stopped working). She was literally MIRACULOUSLY healed from that ailment in early spring 2008. The doctors were amazed...her pulse ox went from low 80s and high 70s to mid 90s on the day they were supposed to put her in the hospital.
NOW that leads me to current day: I came home from school and mom had slowly dropped 20 lbs in 10 months (102 at her worst) and began to have issues swallowing. She claims she has had issues for a while but they are not "the problem." "The Problem" began about three weeks ago when she started choking randomly on anything from lettuce to small pills. When I say choking, I mean the particle GETS STUCK somewhere in her throat. She is unable to speak or breath, which terrifies her, and we can only seem to get it down by taking tiny pieces of bread and mixing it with water to try and push whatever is stuck back down. It does not happen with every meal, and in fact it is kinda a random occurrence...can't really tell when or what will trigger it. She has had mild pain (deep near her thyroid area) for about a month. She has been tired, but physically appears healthy on the outside. I am worried. I made her an appointment with a gastro doctor for Thursday, and am going to attempt to contact her old cancer doctor tomorrow. A few years ago they did a scan when she couldn't breath and it recorded a small diverticulum in her esophagus. She will do ANYTHING to ignore an issue like this. I want to know if any head and neck cancer patients have experienced ANYTHING like this??? Is it dangerous for her to ignore these symptoms? It has been a couple of days since she last choked, but any swallow could lead to something. I will take any and all advice. Thanks.

DLS5419

also
She has a little bit of blood come up with one pill-choking incident, and then again today after going to the ENT (which they ended up sending her to the GI because he only looked to the vocal cords, which was clear.)

bcurran2

DLS5419 said:

also
She has a little bit of blood come up with one pill-choking incident, and then again today after going to the ENT (which they ended up sending her to the GI because he only looked to the vocal cords, which was clear.)

I am a childhood cancer
I am a childhood cancer survivor. I had Hodgkins Lymphoma at age 4 and was treated with mantle radiation. I had struggled with esophageal strictures for many years due to scarring from the radiation. Has your mother had a barium swallow or upper endoscopy? It may be that she needs to have her esophagus dialated. It is a realitively easy proceedure and can be done on an outpaitent basis. She should also probably be on some type of acid reducer to prevent further scarring. I have been on Aciphex for many years and it is my wonder drug. My esophagus is good now. Although the medication is expensive, it is well worth it. When I would get food stuck, nothing would help except just trying to relax. Drinking water would make it worse. What happens is that the muscle tissue is scarred, and is not as effective in moving food down. I hope this helps, and hope that your mother gets relief soon.

micheleb

bcurran2 said:

I am a childhood cancer
I am a childhood cancer survivor. I had Hodgkins Lymphoma at age 4 and was treated with mantle radiation. I had struggled with esophageal strictures for many years due to scarring from the radiation. Has your mother had a barium swallow or upper endoscopy? It may be that she needs to have her esophagus dialated. It is a realitively easy proceedure and can be done on an outpaitent basis. She should also probably be on some type of acid reducer to prevent further scarring. I have been on Aciphex for many years and it is my wonder drug. My esophagus is good now. Although the medication is expensive, it is well worth it. When I would get food stuck, nothing would help except just trying to relax. Drinking water would make it worse. What happens is that the muscle tissue is scarred, and is not as effective in moving food down. I hope this helps, and hope that your mother gets relief soon.

I am a HD survivor treated with mantle about 14 years ago. I sometimes have trouble swallowing and I am convinced that the radiation caused narrowing of my esophagus. It
may just be something simple like that. I am glad your mom is getting it checked out
just to be safe. Please let us know how she is.

bcurran, how many years out are you? Do you have any other unusual effects?

beccaz

post throat cancer diet
My husband is a cancer survivor of ten years. He continues to have problems with swallowing/choking. One food that he loves, and is easy on a throat damaged by radiation, is baked butternut squash. The whole family loves it with a little butter and brown sugar. I am hoping others can give me suggestions of foods which are soothing to the throat. Thanks.

shadow01

micheleb said:

I am a HD survivor treated with mantle about 14 years ago. I sometimes have trouble swallowing and I am convinced that the radiation caused narrowing of my esophagus. It
may just be something simple like that. I am glad your mom is getting it checked out
just to be safe. Please let us know how she is.

bcurran, how many years out are you? Do you have any other unusual effects?

"and I am convinced that the

 

 

"and I am convinced that the radiation caused narrowing of my esophagus"

It probably does.  When I was getting prepped for surgery for cancer #2, somehow the conversation shifted to my voice change after cancer #1.  The nurse asked if I'd had radiation therapy to my brain.  I said yes, I had whole-brain/max dose radiation therapy.  She flatly told me that that was the cause...that the radiation shrinks the muscles around the larynx, and that's why my voice went up around two octaves (it used to be very deep---if singing, I had to take the bass parts down an octave, as they were too high for my voice).  I would definitely not bet against there being a connection there.....

EDIT:  And I do sometimes have trouble swallowing, too.  Sometimes my morning meds will seem to get stuck in my throat, and I have to quickly get more water down to get them to move on down.  Now I just pour a full glass, and toss what I don't use (can't drink the water for over an hour, so...).

Aking

DLS5419 said:

also
She has a little bit of blood come up with one pill-choking incident, and then again today after going to the ENT (which they ended up sending her to the GI because he only looked to the vocal cords, which was clear.)

the happy part

I am 52 and was diagnosed with tonsil cancer last July, 15. Feb, 16 now and I struggle with the same thing. I bet she has a hard time sleeping like I do. I can only say this, I hope it gets better. I have been so miserable with all of the "new normals" that you hear so much talk of. She has you, and that's reason enough to fight. Just stay with her because she needs you. The weight gain thing is an ever going battle.