Mom 57 Diagnosed with Stage 3 Adenocarcinoma - Looking for experiences

Hi I also had flot treatments I started my treatments last year in October had 4 treatments every other week for 2 months. I also had a j tube put in because I couldn’t swallow any food and very little liquid. I had lost 45 lbs needed to put weight on before my surgery. So after my first 4 treatments I waited 5 weeks then surgery in January Ivory Lewis surgery. I had two surgeons surgery was 9 hrs. First couple of days were tough but I still was happy because surgeons were happy with the results. So chest tube coming out right side another tube down my throat and my j tube for feedings. So still no drinking anything for 7 days need to heal my new esophagus that was made from my stomach. They took 7 inches of my esophagus out. So after 7 days it was time for my swallow test to make sure there were no leaks. Every thing went great this was a great day for me. I also got my tube down my throat out and my chest tube out. Now they let me drink water and coffee. Also popsicles and broth and jello. First time I had swallowed anything in 6 months. I was so grateful and happy that day. Now there was breathing exercises I also did to make my recovery quicker and walking as much as I could the more I walked the better I felt. Needed to build my stamina and strength back. Now we are all different how this affects us. Now my body is still trying to get used to my new esophagus and rerouted stomach. Definitely not a fast process. Figuring out the foods you tolerate is also a process. We all are different in that regard also. I eat smaller meals so not to upset my stomach. It’s been almost a year now it is getting easier to eat and digest my food. My scans have come back clear and getting stronger every day. My team of doctors and nurses was awesome they took incredible care of me. Through out this journey I was always positive about everything. I wasn’t going to let this cancer beat me without a fight. So try and stay positive and fight the good fight. Wishing you the best!! Scott

Hello
I was 50 when diagnosed stage 4 esophageal cancer. Handled chemotherapy and radiation with little to no issues. Then I had the Ivor Lewis surgery and a rib resection(8th rib) done in April of 2020. I was warned of the pain I would deal with post surgery prior to starting any treatment. They were not kidding. Pain is still an ongoing problem along my incision on my back to the center of my chest cavity. Nerve blocks do not help and finding a surgeon to do a nerve ablation have proven to be impossible at Dartmouth Hitchcock.
Since surgery I have had issues with delayed gastric emptying, aspiration, a dilation of esophagus with a balloon, and removal of ovaries and fallopian due to an ovarian mass(not cancerous).
Life will definitely change as you know it, but it isn’t as bad as the consequences of doing nothing. I think for me one of the hardest things was all the appointments, all the traveling because nothing is close in northern New Hampshire. Then there was Covid giving one more worry and making having visitors almost impossible which was hard living alone.
Best of luck
Lori

@deb005
Hello. My husband is 74 and was diagnosed with stage 4 esophageal cancer at the esophageal/ stomach junction this past Sept. Since that passage is completely blocked off, he has has an implanted feeding tube, which has been a huge blessing. He was starving to death before it was placed! Now his weight has basically stabilized, though he has lost over 60 lbs. He has had 2 chemo treatments. The first put him in the hospital. The second, 4 days ago, has thus far only weakened him. Sorry to talk so long, but my question is, how did your husband know he could eat? Bill can swallow, but food and liquids "pile up" and must come back. He dreads going back through that, but the isolation of not eating meals with family is hard on all of us. Did your husband take the risk on his own or did the doctor tell him it was time? Thanks so much. I'm sorry y'all are going through this. Im sorry all of the folks on this support group are going through it. But God is Good. I know He will bring us through it.

@billnclaire47
Hi Claire,
I understand exactly what you are going thru but it will get easier for you both. Kerry was lucky regarding the chemo as he could tolerate it reasonably well. He started off before chemo, hardly able to swallow anything but managed ensure protein drinks ( which he hated with a passion !) at times, he vomited and he lost a lot of weight during this time. After the first 4 sessions of FLOX chemo, it had shrunk his tumour so much he was able to start swallowing soft cooked foods like egg and mashed potato and pumpkin and custards along with the ensure drinks. He wasn’t given any instructions to eat really, he just felt he could manage. If he ate too much, yes…it tended to come back up 😕
If your husband is struggling to swallow, I would take his drs advice and not try and force anything down. He will be getting nutrients thru the tube. Weight loss is a worry but eventually he will probably have the amount he is having thru the tube increased. Does his tube go into his stomach or straight into his small intestine ? Kerry’s goes directly into his small intestine. He is slowly having the hourly mls increased from 65mls slowly up to 90 mls over several days.
Wishing you both all the best, it’s a long slow process to go thru isn’t it. Has anyone on his team mentioned the surgery ? The treatments do take a while to get sorted, and so pleased your husbands weight has stabilised.
If we can help with any questions, please let us know. Others on this site have been so helpful to us…Scott goldenshadow (I hope he doesn’t mind me mentioning his name !) has been brilliant ! We all need someone we can relate to who has been thru the same.
Deb x

@goldenshadow
Scott, you are inspiring and brave.

@deb005
Thanks. This was very helpful.

Bill's tube is in his stomach. His team wants him to finish the chemo, have a follow-up PET scan, then decide on further treatment. I guess the PET will tell Bill if the tumors are gone and he can swallow. Thanks again for your helpful comments.

Hello. My husband was diagnosed 2.8 years ago at the age of 62 with an 8cm esophageal adenocarcinoma (T3 N1 M0 H2 positive) which had also gone into the top of his stomach. I told him from Day 1 “Do not Google it” and I think that advice helped keep his spirits up. We had a few scary pet scans where they found something suspicious on his adrenal gland (turned out to be inflammation that went away) and some suspicious node lungs on CT which also turned out to be nothing. He underwent FLOT chemo pre surgery, then an Ivor Lewis esophagectomy and then more FLOT. He never got immunotherapy because it wasn’t in the protocol at the time whereas it is now. In the surgery the lymph node situation was found to be much worse than expected and the tumor had grown (despite FLOT) and burst out of the lymph capsule involving nearby blood vessels and neurons (bad prognostic sign which I did not tell him at the time as I wanted him to remain upbeat). The surgeon removed 63 lymph nodes so it was a lot more radical than expected. 2.5 years after he is living life to the full! He returned to full time work about 6 months post surgery. His last PET CT scans were a month ago and all is clear. He exercises both cardio (mainly stationary cycling but he walks also to get 10000/day steps) and strength training. Has life changed - yes - but we have got used to the new normal and it’s good. The time post surgery was diffficult. It was painful and he found the feeding tube etc a downer. He also got a wound infection when he was home which caused a lot of problems and then there was more worry as there was lung fluid and any symptom like that makes you worried whether it’s the cancer back again. It wasn’t…with a great medical team he got through it all. He still sometimes gets dumping syndrome which is a bit of a downer but on the whole eats normally (smaller portions, less carbs). His weight is stable, he has no swallowing difficulties whatsoever and he is enjoying life. He has some nutritional deficiencies from the surgery (slightly low iron, nail problems) which we are trying to manage with various supplements. I don’t know if your mum has had the surgery or is still being offered it but if that’s the case and they are telling her that she could have a full cancer free recovery, then please encourage her that life can be very good afterwards. Changes are individual and sure it’ll take time to get used to the new normal….but with medical and nutritional help, emotional support, exercise and a good wedge pillow etc. it is manageable and better than that.