Scar tissue in throat caused by radiation and chemo treatment

@csdsgd, good luck with the move to Arizona.

@krisohlson I am experiencing this and now have a G-tube and am NPO - nothing by mouth. This is pretty common after effect of radiation treatment to any head, neck or throat cancer. The long term effects do not go away. As my ENT stated long ago, "Radiation, the gift that keeps on giving" Aspiration pneumonia is a big threat - I've been hospitalized for it twice.

Hi @omaest

I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection surgery taking out some lymph nodes. This one was most likely from too much radiation from my first cancer which was on my left tonsil (2008) as it is literally adjacent to it. You will also have to be very aware of the higher chances of getting aspiration pneumonia and lymphedema after these surgeries. My aspiration pneumonia came only 3 months after the surgery which was really bad as I had to go to the ICU and have 7 liters of infections fluid drained from my chest cavity over a period of seven days. I lost 15 lbs. of body weight from that, and I haven't been able to add it back on so far. I also suggest you get the pneumonia shot.

Since that time, I've hadn't had anything close to that, but most likely had some very minor ones which I think is a result from me making changes to my daily regimen and I am not on a feeding tube.

My question for you did you get any of your hospitalized aspiration pneumonias while being on a feeding tube? Or was this before that?

Thanks

Both before - The first in June of 2023 and the 2nd a year later in July of 2024. My main cancer Doctor had recommended in 2022 that I should get a feeding tube because I was loosing so much weight because chewing and swallowing was getting so difficult. When I could no longer swallow smoothies without coughing I realized something had to be done. It was at the end of my hospital stay in 2024 that I had the G-tube put in place.

Yes , but it is a progress another words you have to meet some qualifications.
I had esophagus cancer and was horrified to think Esophagectomy was the best solution, after reading all the side affects, I didn’t want to go that route. After a lot of research I found out in Japan it was very common to have a Endoscopic Submucosal Dissection, a surgeon removes cancer from inside of the esophagus. Eventually a few U.S
Doctors received training and as of now there are a scatter few who can do this very delicate surgery, the cancer can not be any deeper than the 2nd layer of the inside of the esophagus. Unfortunately mine was at layer 3. So I didn’t qualify.
I received both Chemo & Radiation. Shortly afterwards I could not swallow. Although I was cancer free I needed some help and was referred to a wonderful Gastroenterologist who began dilation. I had 4 dilations and every time with end 2 weeks my esophagus closed because of scar tissue.
Dr suggested we try a stent. The same thing happened, I had the stent for 6wks. After a few weeks we decided for a longer term stent.
Even with stent placement I
had to be very careful to chew very thoroughly.
I felt that I dodged a bullet not having a Esophagectomy and a feeding tube. But realizing I could not have a long term solution, I kept researching and found by accident a procedure called Esophageal Recanalization. A very difficult surgery that required high skilled surgeon. Again only a very few cancer hospitals offered this type of surgery. To remove scar tissue. Think scar tissue as wallpaper, when you try to scape it off the wallboard comes with it. The same goes with scar tissue. Again after research I found Huntsman Cancer Institute in Salt Lake does this procedure but there are again equivalent procedures
after reviewing all my history in there Cancer Board meetings the agreeded I qualify.
I meet for a consult in December and probably surgery early January.
My message to all of you, do your homework stay positive.

@chubasdad I'll be waiting for the report. Thank you for the information. May I ask how old are you?

@omaest
My esophageal cancer was successfully treated with radiation and chemo in January. However, the common aftermath of scar tissue continues to torment me and I go in for endoscopies every 6 weeks or so. Is there a contact at UIHthat my gastroenterologist can refer me to for an evaluation? We live on the west coast, but our family in is DesMoines, so it would be feasibile to travel there. Thanks!

I really do not know of any gastroenterologist at University Hospitals. I've been seen mainly by Dr. VanDaele, MD, FACS; professor, Department of Otolarygology, Head and Neck Surgery. Here is a site that may be helpful and more specific for your care: https://uihc.org/services/gastroenterology.

@tvanhaal Ds Moines is also close to Mayo Clinic Rochester, MN. They might be able to take a look and see if something can be done to improve your situation. The effects of radiation can sometimes take two years to work itself out but I wouldn't let anything go that long without having it checked and repaired. Just my opinion of course. And welcome to Connect by the way.

@hrhwilliam thank you!!