Scar tissue in throat caused by radiation and chemo treatment

I am so sorry. So very very sorry for what your husband and you are going through. There seems to be a shortage of knowledgeable doctors out there, especially those who deal with head, neck, thyroid etc. I spoke to a "regular" oncologist once and told him he needed to brush up on thyroid cancer because it was the up and coming cancer. I never saw him again. Oncologists seem to be able to handle all cancers but those concerning the neck. I had a total thyroidectomy and neck dissection in 2012 with RAI treatment two months later. My life has never been the same. I suffered from laryngeal spasms which lock your throat. It took years before I found ONE ent who knew how to stop them. You breathe through your nose and swallow and it breaks the "lock" on your throat !! I have been spreading the word since. I now have a permanently paralyzed vocal cord nerve which for three months made me sound like Minnie Mouse until I accidentally found out that oxycodone relaxed the muscles in my throat and gave me my voice back. That was 11 years ago. I fight every month to get my 5mg 3x/day to take with meals so I can swallow. Doctors nowadays are know-it-all's who know nothing. I also have CLL leukemia. When I finally started meds for that it decreased my nodes everywhere but my throat, which enlarged !!! I have a hole in my heart. They wanted me to have it closed with a device. I, like it sounds like your husband does, scar badly inside my body. I said to the heart surgeon "what happens when my scar tissue starts covering the device and it gets heavier and heavier on my heart ? I've read what has to be done to get the device out. You end up taking part of the heart. Do I want the procedure? No. I'll live with the hole like I have for 68 years " Yet each doctor keeps pushing and pushing me. Unfortunately people don't listen to their bodies. We know them the best. When we are scared we turn to the "experts" expecting them to know what to do. My experience has been that they actually have no clue.
My advice, for what it's worth, is to take your husband to the Mayo Clinic or Johns Hopkins for evaluation. For some reason, and I've never been to either of them, I feel they are the best!
Once again I'm sorry for what they put your husband through. I am furious!!! I advocate so much for myself that I tell people just give me a prescription pad and I will take care of myself, ordering the right tests, labs etc.
Doctors have to stop "practicing" medicine and actually DO it!!

Sometimes I think its a Late effects of Radiation, as I had it to my Throat, Larynx Cancer, Radiation twice a day for 7 weeks..at night I have to sip water as Its rough. Feels like you can't breathe & its effecting my voice..Humidifier doesn't help, Mucinex doesn't help..
But it's a small price to pay as we're still here, & we're all here for each other to lean on
Hugs ❤

Thank you ! I already have been making the decisions about doctors.. I mean if one tells me they cant help me. But, wants me to reschedule keep coming back umm no if you can't help me why would I keep coming back to line your pockets and make my family deeper in debt.

Hi, I know exactly what you're saying.. they want to treat us but, dont want to deal with what happens later. Im with you.i did get the heart surgery to replace every valve in my heart. Now with all of the scar tissue in my neck I need the cartoid arteries fixed and no doctor will touch me. So that's why I'm headed to mayo clinic. But, I will say if they would have been honest with me I would of just let the cancer take its course instead of having all these other medical issues. And if mayo clinic can't help I will die from scar tissue on my cartroid arteries.

I am so sorry. So very very sorry for what your husband and you are going through. There seems to be a shortage of knowledgeable doctors out there, especially those who deal with head, neck, thyroid etc. I spoke to a "regular" oncologist once and told him he needed to brush up on thyroid cancer because it was the up and coming cancer. I never saw him again. Oncologists seem to be able to handle all cancers but those concerning the neck. I had a total thyroidectomy and neck dissection in 2012 with RAI treatment two months later. My life has never been the same. I suffered from laryngeal spasms which lock your throat. It took years before I found ONE ent who knew how to stop them. You breathe through your nose and swallow and it breaks the "lock" on your throat !! I have been spreading the word since. I now have a permanently paralyzed vocal cord nerve which for three months made me sound like Minnie Mouse until I accidentally found out that oxycodone relaxed the muscles in my throat and gave me my voice back. That was 11 years ago. I fight every month to get my 5mg 3x/day to take with meals so I can swallow. Doctors nowadays are know-it-all's who know nothing. I also have CLL leukemia. When I finally started meds for that it decreased my nodes everywhere but my throat, which enlarged !!! I have a hole in my heart. They wanted me to have it closed with a device. I, like it sounds like your husband does, scar badly inside my body. I said to the heart surgeon "what happens when my scar tissue starts covering the device and it gets heavier and heavier on my heart ? I've read what has to be done to get the device out. You end up taking part of the heart. Do I want the procedure? No. I'll live with the hole like I have for 68 years " Yet each doctor keeps pushing and pushing me. Unfortunately people don't listen to their bodies. We know them the best. When we are scared we turn to the "experts" expecting them to know what to do. My experience has been that they actually have no clue.
My advice, for what it's worth, is to take your husband to the Mayo Clinic or Johns Hopkins for evaluation. For some reason, and I've never been to either of them, I feel they are the best!
Once again I'm sorry for what they put your husband through. I am furious!!! I advocate so much for myself that I tell people just give me a prescription pad and I will take care of myself, ordering the right tests, labs etc.
Doctors have to stop "practicing" medicine and actually DO it!!

To all of you who have suffered with esophageal cancer my heart goes out to you. My husband was diagnosed Aug 2016 with it. He had 4 strong rounds of chemo then he had his stomach stretched to recreate his esophagus.(1/2017) Within 3 months afterwards he was having a problem swallowing. Fortunately he still had the jtube. He had 6 dilations from March to July. The doctor couldn’t understand why he couldn’t swallow. Finally a stint was placed in his throat. Then he couldn’t breathe they removed the stint because it was being covered by scar tissue then when it was removed both of his vocal folds were paralyzed and then a tracheostomy. At this time we were told there was no cancer. I kept asking this. But thinking back no one really checked. Then we find out after being sent to Stanford the end of July within the scar tissue There was cancer!!! He has not had anything to eat or drink by mouth since. It has been mentioned that if he can be cancer free they will place a stint so that he could eat and swallow his spit. The doctor at Stanford even mentioned another type of surgery but His PETs keep showing up with a little cancer here and there. Then chemo or radiation. The last doctor we saw told us that his cancer was high in his throat where usually it is lower. Then she explains that the longer you stretch a rubber band it is smaller and tighter so my question is, why did he have this surgery since it was so high up? Deep down I feel there were mistakes made along the way. If I had to do this again I would get a 2nd and 3rd opinion. It is just that when you hear cancer you freak out! My husband was very healthy so we never saw hospitals for anything! This was and is all new to us. It is so sad to see him just sit my heart breaks. He can’t swallow, he can hardly talk. He is constantly battling with this trach. I wished I could have said way back then WAIT we need another opinion or two. Good luck to you all and my prayers are with you and your healing. My thought is that esophageal cancer comes on slowly you may have it for quite awhile before you are actually diagnosed so take the time and get that 2nd or 3rd opinion. Ask a lot of questions.

I have had my throat stretched many times, but I do not have an esophageal problem. My problem is an ENT issue above the Adams Apple where the radiation was done that has caused severe swallowing problems from the scar tissue from radiation. My Doctors are recommending a feeding tube, which I am trying to avoid ! They said the only thing I can do is speech therapy exercises to help some !

Fortunately, for me, my treatment was less intense. I was given 35 doses of radiation directed very targetedly at the source of my cancer. I am only 6 weeks after the radiation and am beginning to recover from its side effects. Hopefully, I won't have to endure the long term issues you are encountering. Thank you for your input.

Hello @keith123 I am not aware of scar tissue removal but have heard of people having their esophagus stretched to help them swallow. I assume you are seeing a speech/swallow pathologist and have had swallowing tests. I know this is a terrible problem for many head and neck cancer patients who have had radiation in the throat area. My surgery and radiation was to the front part of my mouth so I can swallow all right but can't bite or chew so have to have very soft foods. It is certainly worth asking around to see what treatment is out there.