Mom 57 Diagnosed with Stage 3 Adenocarcinoma - Looking for experiences

Ur91
Hi I had chemo and radiation for esophageal cancer tumor in lower esophagus. I did not have surgery. After several radiation and chemo treatments, the tumor had shrunk 30%. I ended up with feeding tube for a while since I could not swallow. I also had several side affects including coughing, tired, and diarea. But after treatment, the tumor was gone and I got better. I'd be happy to answer any questions.
Don

Yes. My dad has the worse symptoms about a week afyer last radiation. We thought something was wrong his swallowing was so bad but it went away about 2 weeks after maybe 3. They said it was from all the inflammation. His nausea stuck around for awhile but got better after about a month. Just had pet scan and showed clear but still needs scope to know if they are doing surgrey.

Hello I had stage 3 esophageal cancer my treatment was chemotherapy no radiation and surgery. Also had j tube for feeding couldn’t swallow any food and barely get liquids down. J tube was my saving grace. So I had flot treatment that’s 4 chemotherapy treatments one every other week for two months. Then waited 5 weeks had surgery mine was robotic 2 surgical teams. 9 hour surgery 8 day stay in hospital. My oncologist my surgeons and nurses were great. I ask questions they would answer them. Hopefully you have trust in your team. Then waited 4 more weeks had 4 more chemotherapy treatments same way every other week for 2 months. Then waited 2 months had my pet scan cancer free. This is a very difficult time in your lives. Be positive please don’t look at google survival rates to much misinformation. If you’re mom can walk take walks good for mind body and soul. Thinking of you and your mom you guys can do this wishing you the best!! Any questions feel free to ask. Scott

Hi UR91,
I was also diagnosed at 57 and (T3 N1 M0, HER2-) in GE junction two years ago. I had 28 proton radiation and 4 FolFox, then 28 photon radiation sessions and 4 Carbotaxol to address a distance lymph node that light up on a scan.

It was hard a few weeks after treatment stopped. My oncologist said this was because everything was inflamed, but it got better. I have not had the surgery. My doctors decided to do an active surveillance protocol (modeling their treatment after the Dutch SANO trial). I get upper endoscopies or CT scans every three months. I am 1.5 years from the last treatment.

The survival statistics are not helpful. They add in folks who are in their 80's who have other health concerns. Your mom is relatively young to have this cancer. If she is having pain or issues swallowing have her talk to her doctor. Maybe she needs a j tube. I ate pureed soup and yogurt and protein shakes other very soft foods and ate them very slowly and things got better.

I hope this helps. I wish your mom all the best
Lisa

Husband diagnosed GEJ tumor etc. He just completed his first segment of chemotherapy and it currently is in radiation. We have been continually advised that the symptoms will get worse as we go on particularly week three and then two weeks after as radiation is is cumulative.
He is receiving proton therapy radiation. They’re already talking to us about changing. To a more puréed type of diet about week three and that it possibly can progress to liquids only to stop the vomiting, etc..
Ask about medication for that and lidocaine for swallowing they offered that to us for when the time comes and it seems like that might be very helpful. Continue positive thoughts and prayers for you and your mom.

Been there, done that. After-effects of chemo/radiation sessions mean the treatments are still active. Mine were pretty miserable for about 10 days, than rapidly eased--hope your mom's experience is similar. Also fingers crossed on Pet Scan results for her--mine showed no detectable cancer remained after initial Stage 3 diagnosis. Esophagectomy surgery followed for me to allow oral nutrition going forward--one more step in the journey. Best wishes.

Hello, I’m writing from Tasmania, having just joined this site. I was diagnosed with oesophageal (English spelling) cancer Feb 2024 - a worrying time. The treating team started chemo / radiotherapy (5 and 25 sessions respectively) within 3 weeks of diagnosis. We were warned about lots of potential side effects, particularly with radiotherapy where S/E’s are cumulative. I did very fell till around session 21 when severe fatigue set in. By the last session it was literally almost impossible to get off the couch. Some people report feeling like they’ve swallowed razor blades but swallowing was not a problem for me - we all react differently. The fatigue improved over the next month.
I had surgery several weeks later. I was warned it was a very invasive procedure and that is certainly the case. Being 68 yoa means it hits harder and requires more recovery time than when you’re younger. The whole time was not much fun, but nothing that was not tolerable. The stats I was given suggest that having the surgery yields a four fold increase for survival at the 5 year mark. I’m currently 14 months post surgery and feeling life is pretty much back to normal, albeit a new normal.
My best wishes to all dealing with this illness. Be aware that with a bit of luck, good results are possible. Being fit and physically active certainly assist recovery and the significant psychological challenges you face. Best wishes. Geoff

Thank you all for sharing your journey, it helps a lot.

We just had her first PET scan post treatment. The last radiation ended July 10th and the PET was done August 8th, so almost 4 weeks post treatment and these are the findings from the PET.

- Primary tumor at gastroesophageal junction/distal esophagus shows intense uptake (SUV 4.8), more extensive than prior scan.
- New multiple mediastinal lymph nodes with moderate-intense uptake (e.g., SUV 3.1), suspicious for nodal metastasis.
- Mildly avid bilateral hilar lymph nodes (SUV 1.6), indeterminate.
- New foci of moderate uptake in porta hepatis/gastrohepatic region (medial caudate lobe), without CT correlate, cannot rule out nodal involvement.

Her initial CT and PET scan, as well as the Ultrasound endoscopy didn't show any lymph node involvement.
Overall, she has responded well to the treatment and her swollowing feels better. How likely is it that these new findings are the cancer spreading during the treatment and not just the after effects of the radiation/chemo treatment itself?

We were quiet hopeful that she would be a candidate for surgery, given no distant spread found before treatment but this has added a lot of uncertainty, at least until we speak to the doctors. Has anyone else has any false positives on their PET post treatment? Given its just been 4 weeks, is it likely its just inflammation?
We have an appointment with the care team end of next week.

Anyone have similar post treatment PET results as shared above?

May 21st, 2024, I was diagnosed with stage 2 adenocarcinoma in gastroesophageal at de junction also I chose chemo that backed it up where I could swallow again .at the end of 8 weeks nothing on pet scan blood work showed nothing but biopsy still showed cancer cells. they wanted to do surgery and take top of stomach up to voice box out. it would be 2 weeks stay in hospital if no complications. feeding tube for 6 to 12 months and possible 2 years healing and never being normal or close too. I skipped surgery. Now it came back a little lower and a tumor 1.5 cm in liver. doing chemo again since June 17th and still going in every 2 weeks for it, I'm not sure they will ever kill it out completely. Going in for a CT scan next week to check on progress than proton knife possibility. I'm with Texas Oncology and the staff makes it a joy to go and do chemo. I love sharing my faith in Jesus with everybody. I'm not going to let it steal my joy. Anyway, it goes I win. Once you get that attitude toward cancer what has it left to do. Praying for you all Gods will be done.