Hard Time Handling Gastroesophageal Junction Diagnosis

Nan1953,

Sorry to hear that you are in such a tough situation.

My guess is that if you were eligible to have chemo and radiation, doctors might not be offering you the surgery since your eligibility for that also seems to be in question.

What about immunotherapy? If I were in your shoes, I think I might elect to put all my hope in immunotherapy, skipping the surgery. - Meanwhile, if eating and drinking are problematic, you could get a G-tube for that.

There's someone on SmartPatients.com who has had good success with that formula. Btw, that's an excellent site. You should post there to hear from experienced survivors.

Hoping for the best for you.

Dave

So sorry to hear what you are going through. My husband had a similar situation where he wanted to understand likelihood of potential outcomes. We had a good discussion with the social worker and with her intervention the oncologist did provide the information my husband was looking for. It can become complicated because each member of the team is managing one particular aspect of your care.

I would agree with asking about immunotherapy. My husband is taking it now after having undergone other treatment. We have heard success stories from those who were not eligible for other treatments.

Wishing you the best.
Judy

This is a tough one for you, but everyone on here will give you good input. I know this site has provided much needed comfort to me while I watch my sister continue to improve after a bleak diagnosis. If they're offering you surgery, you're probably not stage 4, which is a good thing. My sister is stage 4, was unable to swallow spit even due to the tumor and when she began her chemo/immunotherapy within 10 days she was swallowing, within 2 weeks was eating and now, eating normally. No more feeding tube. Her energy is back, she's happy after having lived through two months of hell and what you're describing.
Now, I'm wondering about your doctors and where you're getting treatment. Sister transferred her care to City of Hope, and they have it all right there -- need a tube placed? boom, it's done. Need bloodwork, it's done. Need a scan? Done, no waiting, it's all coordinated care. That said, she was with a UC care facility that was disjointed and uncoordinated. Two months from diagnosis to first chemo and don't even get me started on all the cluster *** s for everything else. Anyway, you need to be your own advocate and make sure you understand what they're doing and why -- don't be afraid to ask until you understand and don't let them brush you off.
Mayo is a wonderful facility with cutting edge medicine...., don't know what your situation or if Mayo is a possibility for you, but you need answers and encouragement and a coordinated treatment. Don't be afraid to assert yourself. I wish we could help you walk this razor's edge, try not to make yourself sicker and please, look forward to feeling better with treatment.

Will be thinking of you,
Aimee

I feel for you. But you should get 2nd and 3rd opinion.
My husband is stage 4, not legible for surgery, or immunotherapy, did the 8 FolFox infusion, started eating with no problem on the 3rd infusion.
He switched to Mayo Jax, I will tell you what a difference in care !!
Now he started on Xeloda. They also request more genetic tests to make sure Kaiser didn't missed anything.
Don't despair there are many treatment options out there. Research and ask questions...

Thank you all for your support and imput about different treatments. After I say a Pulmonary Care Dr. I was very down in the dumps. It seemed every specialist was telling me something different. Finally my son said to go see our family Dr. (who I have a ton of faith is and gives it to you straight.)

He said he feels confident my lungs would hold up and if I do have to spend sometime on a ventilator the team at the hospital already has a plan to try to wean me off. He said that there could be complications but that this is a fast spreading Cancer and if I didn't have the surgery that maybe I would survive the year but that it wouldn't be a pleasant way to pass away.

He also said don't worry if they changed my breathing meds in the hospital and I didn't do as well on them if and when I came home he could always put me back on regular meds.

I'm still scared but at now I'm not terrorized. There is no way I could go to the Mayo Clinic or any other place that was to far away financially impossible. Talk about timing, just a few months ago they built a very large, what they are claiming is a very cutting edge cancer center about 20 mins from my house. I still have to go about an hr. drive from my house for the surgery but for after surgery treatment it will be close to home . I can't have anything to do with radiation because of the lung disease but thanks to your replies and other info on
this site I see there are other options. I'm feeling more positive about the situation now.

Hi @nan1953, how are you doing today? May I ask, when is your surgery date?