1. < Esophageal Cancer

Esophagectomy Surgery No Longer an Option -We Are Lost- Help

Posted by nuggetofmine @nuggetofmine, May 11 5:02pm

My husband has gone through 5 weeks of chemo and radiation for stage 3 Esophageal cancer. He has had a J tube. He's had a difficult time putting on weight (he lost a lot before diagnosis, and more before chemo/radiation shrunk the tumor, for a total of 50 lbs.) He's put about 5 lbs of that back on.
We just got back from the surgeon's office and were told he isn't strong enough for the Esophagectomy Surgery. And that this was the window, so even if he does get stronger later, it's too late. Since he can eat everything and has no issue swallowing, the surgeon took out the j tube. And we were referred back to the oncologist.
I'm not sure what to do at this point. More chemo? Does that "maintain" the tumor so he can live a while? Second opinion? From who?

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Mentor
Don Higgins, Volunteer Mentor | @dsh33782 | May 12 6:12am

After my 28 days of chemo and radiation, an endoscopy and PET scan showed that my cancerous tumor in lower esophagus was completely gone along with cancer in several local lymph nodes. I would follow their recommendation to go back to oncologist for recommendations on possible next steps. One possibility is immune therapy. Here is Mayo Clinic reference about possible next steps:
https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-treatment/art-20047350
Have you researched some of these options yet?

REPLY
1 reply
nuggetofmine | @nuggetofmine | May 12 9:45am
In reply to @dsh33782 "After my 28 days of chemo and radiation, an endoscopy and PET scan showed that my..." + (show)
@dsh33782

After my 28 days of chemo and radiation, an endoscopy and PET scan showed that my cancerous tumor in lower esophagus was completely gone along with cancer in several local lymph nodes. I would follow their recommendation to go back to oncologist for recommendations on possible next steps. One possibility is immune therapy. Here is Mayo Clinic reference about possible next steps:
https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-treatment/art-20047350
Have you researched some of these options yet?

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Thank you so much! It's all so overwhelming. He is hesitant to do more chemo, because they could never get the nausea under control. We have an appointment for Monday with the oncologist to discuss options. It's confusing, since we have been working so hard to get to the point where surgery was scheduled and then to be to be told it was off the table because he wouldn't make it through, was tough. Your post is encouraging.

REPLY
2 replies
Mentor
Don Higgins, Volunteer Mentor | @dsh33782 | May 12 10:40am
In reply to @nuggetofmine "Thank you so much! It's all so overwhelming. He is hesitant to do more chemo, because..." + (show)
@nuggetofmine

Thank you so much! It's all so overwhelming. He is hesitant to do more chemo, because they could never get the nausea under control. We have an appointment for Monday with the oncologist to discuss options. It's confusing, since we have been working so hard to get to the point where surgery was scheduled and then to be to be told it was off the table because he wouldn't make it through, was tough. Your post is encouraging.

Jump to this post

I also had problems with nausea, but they were able to give me Zofran and also before chemo via port they were able to give me anti nausea medicine via the port. I hope they can do that encourage you to continue chemo. I also was discouraged to hear I was not a good candidate for surgery due to my high blood presure and anti heart fibrulation meds. Can you ask about nausea medication options?

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1 reply
grac3honolulu | @grac3honolulu | May 12 10:44am

Maybe all he has to do now is the follow-up check up with your oncologist.
Because my Oncologist and GI surgeon discussed with me before I did this treatment that if the tumor shrink I don’t need surgery 🤞.
But right now I’m really feeling weak and my last chemo treatment is next week and 3more days of radiation.
I can’t even eat and drink I only getting daily IV HYDRATION.

REPLY
nuggetofmine | @nuggetofmine | May 12 10:49am
In reply to @dsh33782 "I also had problems with nausea, but they were able to give me Zofran and also..." + (show)
@dsh33782

I also had problems with nausea, but they were able to give me Zofran and also before chemo via port they were able to give me anti nausea medicine via the port. I hope they can do that encourage you to continue chemo. I also was discouraged to hear I was not a good candidate for surgery due to my high blood presure and anti heart fibrulation meds. Can you ask about nausea medication options?

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We plan to ask about the nausea med options. He did have the IV before chemo, and three or four others to take as needed at home, but none of them really took it away. I am absolutely encouraging him to do more chemo. It did shrink his tumor, but didn't take it away entirely.

REPLY
gardenlady1116 | @gardenlady1116 | May 13 8:14am
In reply to @nuggetofmine "Thank you so much! It's all so overwhelming. He is hesitant to do more chemo, because..." + (show)
@nuggetofmine

Thank you so much! It's all so overwhelming. He is hesitant to do more chemo, because they could never get the nausea under control. We have an appointment for Monday with the oncologist to discuss options. It's confusing, since we have been working so hard to get to the point where surgery was scheduled and then to be to be told it was off the table because he wouldn't make it through, was tough. Your post is encouraging.

Jump to this post

Prayers for you. Thank you for sharing your difficult story

REPLY
nuggetofmine | @nuggetofmine | May 13 6:10pm

Thank you all who have replied. The replies got my juices going and gave me a direction to look. We were feeling pretty hopeless and abandoned when the surgeon said he wouldn't make it through surgery, since that's what he had been working for all of this time.
I have found it's not the end. There are other treatments, like more chemo, immunotherapy, etc. out there, and after reading some of the posts in here, and on other threads, it looks like surgery would not have been a good thing for him, even if he had survived it.
We had the j-tube removed and he is almost back to his old self after months of suffering with it. It always hurt, and felt like it was taking up a lot of room. It extended a lot and was always catching on stuff. He's a really active guy and there was so much he couldn't do because of that tube. He really didn't need it, since he could always eat, but he's had it in since Nov.2022 working toward surgery.
We meet with his oncologist next week and right now, I'm thankful his tumor has shrunk enough from treatment that he has no pain, the j-tube is out so he feels good and he's eating normally. Thank you everyone for your stories and information that helped me get back on track!

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 25 10:39am
In reply to @nuggetofmine "Thank you all who have replied. The replies got my juices going and gave me a..." + (show)
@nuggetofmine

Thank you all who have replied. The replies got my juices going and gave me a direction to look. We were feeling pretty hopeless and abandoned when the surgeon said he wouldn't make it through surgery, since that's what he had been working for all of this time.
I have found it's not the end. There are other treatments, like more chemo, immunotherapy, etc. out there, and after reading some of the posts in here, and on other threads, it looks like surgery would not have been a good thing for him, even if he had survived it.
We had the j-tube removed and he is almost back to his old self after months of suffering with it. It always hurt, and felt like it was taking up a lot of room. It extended a lot and was always catching on stuff. He's a really active guy and there was so much he couldn't do because of that tube. He really didn't need it, since he could always eat, but he's had it in since Nov.2022 working toward surgery.
We meet with his oncologist next week and right now, I'm thankful his tumor has shrunk enough from treatment that he has no pain, the j-tube is out so he feels good and he's eating normally. Thank you everyone for your stories and information that helped me get back on track!

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@nuggetofmine, I thought I'd check to see how you and your guy are doing. Did you and the oncologist determine next steps?

REPLY
1 reply
nuggetofmine | @nuggetofmine | 10 hours ago
In reply to @colleenyoung "@nuggetofmine, I thought I'd check to see how you and your guy are doing. Did you..." + (show)
@colleenyoung

@nuggetofmine, I thought I'd check to see how you and your guy are doing. Did you and the oncologist determine next steps?

Jump to this post

Wow, thanks for checking up on us! His tumor is HER2 positive which opened up more treatment options. He's going to start FOLFOX next week. He's actually looking forward to it in hopes the treatment will shrink the tumor enough so he doesn't need the occasional pain meds. The first round of chemo/radiation in prep for the surgery he didn't get made it so he could eat comfortably and that in itself was life changing. We are optimistic now and no longer lost. Everyone here is so kind.

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