Refusing any Treatment for Esophagul Cancer

Twine

I'm early stages T1b, but don't fancy the Ivor Lewis treatment and what can come with it, so I know that my chances of survival are low. But how low, I don't know and how long before symptoms. The information out there is shockingly scant.

paul61

Well you are fortunate that your esophageal cancer was diagnosed early. I assume your oncologist or surgeon has investigated endoscopic submucosal dissection and decided the tumor has invaded too far into the submucosal layer of your esophagus to be removed with that approach.

There are certainly esophageal cancer survivors who have not had surgery and had only chemotherapy, or immunotherapy, and radiation therapy and are currently in remission. Most of them decided not to have surgery because they had other chronic health issues that precluded surgery.

Of course the best chance of long term remission is a three fold approach of chemotherapy or immunotherapy, radiation, and surgery. Of course no-one wants to have surgery, but many do and recover just fine.

I had my Ivor Lewis esophagectomy 14 years ago and my lifestyle is just fine with some minor adjustments.

I need to eat small meals several times a day. I need to sleep with my chest and head elevated. I need to avoid certain foods. But other than that my life is just like before I was diagnosed.

If you want to discuss your situation with a group of cancer survivors who have both had surgery and have not had surgery, we have a bi-weekly Zoom call:

Twine

Firstly, thank you for your time in responding.

You have paragraph 1 exactly right, but the surgeon wasn't sure if any tumor had been left behind as there was some muscle came out with the tumor, so an esophagectomy was offered to be 100% sure.

I've since had a 3 month follow up gastroscopy that showed nothing on the surface and no cancer in the biopsies.

I wonder about the mechanics here. If there were cancer cells left below the surface would these spread to the surface or to lymph nodes first. I don't know the physics. Isn't it easier for any remaining cancer cells (that may have been left behind), to reach back to the surface easier than to spread through fresh tissue to the lymph nodes? In other words, if there's nothing on the surface, what are the odds of the lymph nodes being involved?

paul61

I think it is anybody's guess it what direction any residual cells might grow. If I were in your position I would be asking about the testing of the tumor tissue sample for HER2 and PDL-1 status and possible adjuvant immunotherapy with Opdivo or Keytruda. In addition I would ask about regular Signatera MRD testing as an early detection precaution.

Twine

I will, and have new things to look up now. Many Thanks :-)

Twine

One of the symptoms I have, is a chronic cough. I had a cough prior to my successful hiatus Hernia repair a few years ago and it went away after the operation but slowly returned and now is constant (for the past 3 years). . I believe the cough mechanism is not well understood and that it sometimes goes away with an esophagectomy but not too sure on my facts here. I can't find much online to cover the subject in-depth. It was particularly bad during Covid as I had to suppress it, lest people around me thought I was 'Typhoid Mary'.

Twine

I would like to know if there were ways to manage the cough better and maybe coat the gullet

melisamayville

https://csn.cancer.org/discussion/326627/refusing-any-treatment-for-esophagul-cancer

Well, let me tell you my husband's story. He is 55 yrs old. He began having crazy hiccups in the summer of 2021. He went to some Speech therapy to improve his swallow, but it continued until one time he couldn't breath. The therapist eventually recommended an endoscope of his throat. He was diagnosed with stage 3 esoph cancer (adenocarcinoma) in Feb 2022. Only stage 3 because it was in 1 lymph node. Did 8 rounds of chemo, 35 radiation treatments along with another 4 rounds of chemo simultaneously, underwent an esophagectomy in Jan 2023. The first 5 weeks after surgery were tough. He had the Ivor Lewis. No feeding tube. Was eating soft food 3 days later. Took 8 weeks off of work, but probably could have done 6 weeks and returned part time. He lost about 20 lbs, but has gained about 5 of it back. Sleeps on a wedge pillow. We went along planning life and in April he went for a check up with oncologist. Blood work was off. After a CT with contrast, PET scan, and endoscopic ultrasound, his cancer has come back near his surgical site (lymph nodes) and has spread to his lungs. Now stage 4 obviously. He will begin chemo and immunotherapy again in a few weeks. There are no guarantees. The survival rate is low; recurrence is high. It bites.

Twine

Thank you for being kind enough to share that Melisa.

Sherlock44

https://csn.cancer.org/discussion/comment/1706279#Comment_1706279

I'm so sorry about your husband, my husband was diagnosed in March with stage 3 and I'm so scared about the outcomes. He is only 50

cherdar57

I have stage 4 esophageal cancer. I can't swallow anything without a blob of foamy, frothy, white spit. Nov 2022 I couldn't swallow anything I was in the hospital for 2 months getting my feeding tube and chemo and radiation. Finally a break through I could swallow water and puree foods. A couple of weeks out of the hospital I started getting this foamy spit. Don't know what to do.

Twine

https://csn.cancer.org/discussion/comment/1706549#Comment_1706549

My thoughts are with you and I really wish you well chedar

summersbreeze

The end of 2020 I was diagnosed with the Southern lighing Annelle cancer I had chemo and radiation now in May 2023 man has returned stage form because it has Masta size to the lung So I will be taking key Truda immuno therapy or chemo with immunotherapy we’ll find out the end of this next week which it will be

summersbreeze

I didn’t reread my comment but it should’ve said esophageal cancer

Jink1951_

My husband was diagnosed with Stage 4 Esophagus cancer in June. He wasn't able to hardly eat or drink anything. He had the foam you are talking about. The tumor is in the lower part of his esophagus so the food would just stop at the top of the tumor and couldn't go anywhere else. So then he would have to spit up all of that stuff. The Gastrologist doctor put a stent in his esophagus. So now he is able to eat and drink. He still has to be really careful with what he eats and we have to crush all of his meds. The problem that he has most of the time now is that after he eats or drinks or takes his medicine he starts burping then he gets sick to his stomach. He stays nauseated most of the time. We have tried 3 different nausea medicines and CBD oil and nothing helps. The Oncologist has given him a new medicine to try so we will see. So far so good. He is taking chemo every other week and wearing a pump home for two days. But I was wondering if anyone has had that same problem and what you have tried?

jwkelly

https://csn.cancer.org/discussion/326627/refusing-any-treatment-for-esophagul-cancer

I'm stage 3 and my cancer was diagnosed last September 10th when I was 110 pounds. Wasn't til I was 95 pounds when they put in a g tube feeding tube in my stomach, I'm currently 140 and un treated. I do a proper formula and drink diet and am surviving very well. You can too

jwkelly

https://csn.cancer.org/discussion/comment/1706207#Comment_1706207

I do other esophagus cancer forums and many do not do just fine with esophagus removal,stretching, stent surgeries. There are many complications that are life long.