Radiation questions

Posted by cottonsunflower @cottonsunflower, Mar 9 2:00pm

My husband has stage 3 esophageal cancer diagnosed December of 2023. He began chemo in January of 2024 getting that treatment every other week for over 2 years now. Well now the cancer is slowing growing and affecting his swallowing. Food is getting stuck causing him to throw it back up. The doctor has decided to do radiation for the first time. I was wondering about what happens during radiation. Will his throat swell? I heard it would and there would be scaring. The doctor has mentioned this as well but I am a little worried about it closing up all the way! He said he would have to be on liquids eventually. I see a lot of your stories are chemo and radiation together and I was just wanting to hear about it first hand from someone going through it. Thank you for any insight you can give. he starts on March 23rd.

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Profile picture for lindainca @lindainca

Hello—My case was different in that I didn’t have EC, but an area of dysplastic cells that could have turned into cancer. I had that treated over four years and the result was a stricture that in October started to severely limit my intake by mouth. The esophageal dilation my team had been doing every few months stopped working, and my throat closed up. They decided the only recourse was esophagectomy. In the meantime though, they placed a feeding tube (G-Tube) in my stomach. I had that for a month before the surgery, and it kept me at a healthy weight until surgery. Since esophagectomy usually involves removing part of the stomach in order to construct a conduit for food and liquid, they then placed a tube into my Jejunum (J-Tube), which essentially worked the same way as the G-Tube. I had that for about eight weeks after surgery, then it was removed in doc’s office. I eat normal food now, just have to eat much smaller meals several times a day. I’ve only lost a couple of pounds since the feeding tube was removed, and my weight is more or less stable. I just wanted you to know that there are options for your husband’s nutritional needs.

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@lindainca “ My case was different in that I didn’t have EC, but an area of dysplastic cells that could have turned into cancer. I had that treated over four years and the result was a stricture that in October started to severely limit my intake by mouth. ”

Did you have a Radio Frequency Ablation (RFA) of your esophagus that caused the stricture?

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Profile picture for brucekn @brucekn

@lindainca “ My case was different in that I didn’t have EC, but an area of dysplastic cells that could have turned into cancer. I had that treated over four years and the result was a stricture that in October started to severely limit my intake by mouth. ”

Did you have a Radio Frequency Ablation (RFA) of your esophagus that caused the stricture?

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@brucekn Yes, I had both RFA and Cryo Ablation several times (more cryo than radio) over a four year period. Last October the ablations and dilations stopped working due to the stricture, and my throat closed up to the extent I could not eat or drink anything. Then I had to have a dilation every two weeks until the date of my Esophagectomy, Dec 5.

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Profile picture for lindainca @lindainca

@brucekn Yes, I had both RFA and Cryo Ablation several times (more cryo than radio) over a four year period. Last October the ablations and dilations stopped working due to the stricture, and my throat closed up to the extent I could not eat or drink anything. Then I had to have a dilation every two weeks until the date of my Esophagectomy, Dec 5.

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@lindainca
Thanks. I had my first RFA about 2 weeks ago. Long Barretts, about 6cm.

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Profile picture for brucekn @brucekn

@lindainca
Thanks. I had my first RFA about 2 weeks ago. Long Barretts, about 6cm.

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@brucekn I’ve read that RFA is effective in 90% of patients with Barretts. Sending positive thoughts your way for successful treatments!

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Profile picture for lindainca @lindainca

@brucekn I’ve read that RFA is effective in 90% of patients with Barretts. Sending positive thoughts your way for successful treatments!

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@lindainca Thanks for the good wishes, much appreciated!

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Profile picture for cottonsunflower @cottonsunflower

Saw the radiation doctor yesterday. My husband will get 27 radiation treatments beginning on the 23rd. I know it will get worse before it gets better, but I am hoping for a good outcome after it all.

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@cottonsunflower Hoping for the best that is possible for you and your husband during this treatment. I hope that one day medical science will be able to detect this nefarious disease at Stage 1.
As I replied to another member in this thread, a diagnosis of Barrett’s Esophagus 11 years ago (difficulty swallowing) resulted in periodic endoscopies of my esophagus that showed no change for most of the time, but recently a Tissue Cypher test showed that I was at a high risk of dysplasia and potential cancer in the future. My GI guy jumped on this and gave me a Radio Frequency Ablation just 2 weeks ago, not very pleasant but I’m OK now.
Did your husband suffer acid reflux, and consequently possible Barrett’s prior to this diagnosis? Acid Reflux (GERD) is often seen as unpleasant but harmless, as the real consequences are asymptomatic until it becomes an emergency. Somehow we need to get patients and medical staff more aware of the potential dangers of GERD.
Wishing you all the best, you and hubby are in my thoughts.

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Profile picture for brucekn @brucekn

@cottonsunflower Hoping for the best that is possible for you and your husband during this treatment. I hope that one day medical science will be able to detect this nefarious disease at Stage 1.
As I replied to another member in this thread, a diagnosis of Barrett’s Esophagus 11 years ago (difficulty swallowing) resulted in periodic endoscopies of my esophagus that showed no change for most of the time, but recently a Tissue Cypher test showed that I was at a high risk of dysplasia and potential cancer in the future. My GI guy jumped on this and gave me a Radio Frequency Ablation just 2 weeks ago, not very pleasant but I’m OK now.
Did your husband suffer acid reflux, and consequently possible Barrett’s prior to this diagnosis? Acid Reflux (GERD) is often seen as unpleasant but harmless, as the real consequences are asymptomatic until it becomes an emergency. Somehow we need to get patients and medical staff more aware of the potential dangers of GERD.
Wishing you all the best, you and hubby are in my thoughts.

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@brucekn
Lucid http://www.esoguard.com
has developed a test for diagnosing esophageal cancer. It's easier access and can be done at home for those with a higher chance of esophageal cancer.

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Profile picture for lionsfan @lionsfan

@brucekn
Lucid http://www.esoguard.com
has developed a test for diagnosing esophageal cancer. It's easier access and can be done at home for those with a higher chance of esophageal cancer.

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@lionsfan
Thanks lionsfan. This test sounds much like the “Tissue Cypher” test that my GI guy had done on a biopsy sample from a recurring endoscopy of my esophagus.

I came to this forum to see if others had experiences from RFA of the esophagus, as the GI guy promised me there would be a lot of pain after the procedure- boy was he right. But reading many of the posts here from patients, spouses and family experiencing esophageal cancer, I felt that my concerns were nothing compared to most others here.

Probably an insensitive question to most here, but I have often wondered how many of those that have had, or do have, esophageal cancer, also had chronic GERD over many years, and how much information was around about BE and how that elevated the risk of dysplasia. And just how asymptomatic BE and esophageal cancer is, until it isn’t, and the patient is at least to Stage 3, maybe Stage 4. Most of us have regular colonoscopies, especially later in life, but I have never heard of a recommendation to have any sort of regular endoscopy routine for the esophagus.

My heart goes out to everyone who is going through the consequences of this insidious disease.

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Profile picture for brucekn @brucekn

@lionsfan
Thanks lionsfan. This test sounds much like the “Tissue Cypher” test that my GI guy had done on a biopsy sample from a recurring endoscopy of my esophagus.

I came to this forum to see if others had experiences from RFA of the esophagus, as the GI guy promised me there would be a lot of pain after the procedure- boy was he right. But reading many of the posts here from patients, spouses and family experiencing esophageal cancer, I felt that my concerns were nothing compared to most others here.

Probably an insensitive question to most here, but I have often wondered how many of those that have had, or do have, esophageal cancer, also had chronic GERD over many years, and how much information was around about BE and how that elevated the risk of dysplasia. And just how asymptomatic BE and esophageal cancer is, until it isn’t, and the patient is at least to Stage 3, maybe Stage 4. Most of us have regular colonoscopies, especially later in life, but I have never heard of a recommendation to have any sort of regular endoscopy routine for the esophagus.

My heart goes out to everyone who is going through the consequences of this insidious disease.

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@brucekn
Actually, that's a very relevant question. In my case, I had GERD symptoms for years and was on 80 MG of Omeprezole when I had to tell my general practitioner to order me an endoscopy. If I hadn't done the research and advocated for myself, I might not be writing this. I went to Mayo for a second opinion after my initial oncologist said I was Stage 1, when in fact I was Stage 3, locally advanced. Fortunately, I was treated before it spread to the surrounding lymph nodes. I now tell everyone I know who has heartburn, don't take it likely and ask for testing as soon as you're concerned about GERD. The sooner, the better.

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Profile picture for lionsfan @lionsfan

@brucekn
Actually, that's a very relevant question. In my case, I had GERD symptoms for years and was on 80 MG of Omeprezole when I had to tell my general practitioner to order me an endoscopy. If I hadn't done the research and advocated for myself, I might not be writing this. I went to Mayo for a second opinion after my initial oncologist said I was Stage 1, when in fact I was Stage 3, locally advanced. Fortunately, I was treated before it spread to the surrounding lymph nodes. I now tell everyone I know who has heartburn, don't take it likely and ask for testing as soon as you're concerned about GERD. The sooner, the better.

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@lionsfan
Interesting info, lionsfan. I am on a 10-year colonoscopy schedule, and was on a 3 year endoscopy schedule after BE was diagnosed (now on a 6 month schedule since early signs of potential dysplasia). So one year the 10-year and 3-year cycles co-incited, and I had both a colonoscopy and an EGD done in the session, the GI guy told me it would take only 5-10 minutes more time to do both. I assume that EGD’s can’t wait for 10 year cycles like colonoscopies can, but as a preventative maybe they could. I don’t know.

Funny story, in a topic anything but funny. On that occasion when I had both the EGD and the colonoscopy done, just before sedation the GI guy came over to me, looking very serious and puzzled. Looking into my eyes, he said that since he used the same wand for both, he had to make sure that he did the procedures in the right order. I must have looked terrified, and he couldn’t contain his laughter anymore- neither could the other people in the room. Of course, very different instruments are used for both procedures!

The very best of thoughts to anyone with esophageal cancer at any stage, BE, or even GERD who are taking otc remedies. For that last group, get tested for BE or worse!!

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