Oesophageal Patients Association
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So upset

I was diagnosed in April 2017 with stage iv stomach cancer at the junction of Oesophagus. The cancer had spread to the peritoneum and I was offered palliative EOX chemo.

I responded very well to the chemotherapy and was subsequently offered surgery (total gastrectomy, part removal of oesophagus and removal of appendix) This was in October 2017 and in the November I was told that all of the biopsies had come back negative with the exception of the primary tumour that had viable cancer cells but was of course removed. The team were very happy with the results and I did not need anymore chemotherapy.

I have lost a great deal of weight due to the surgery and I am still learning to eat although that had been improving.

I noticed in January that I didn’t feel that great but put it down to still struggling with food but two weeks ago I had a CT scan which showed fluid in my lungs and abdomen. This later turned out to have malignant cells, although no mass can be seen.

I am seeing my oncologist on Monday to discuss second line chemo.

I am so scared now though because I am not sure if my body is strong enough to undergo anymore chemotherapy plus I am still recovering from the surgery.

Everything I have read indicates that the fluid build up is end stage disease and although I was prepared last year for bad news, it feels harder this time because of the surgery.

Jennifer x

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Hi Jennyretro,

I am sorry to hear about all that you are going through. All l can say is keep going...... Going through a similar situation with my Mom:

2017 February: we discovered she had a rare sarcoma, GIST: Gastro-Intestinal Stromal Tumor at the esophageal junction.

13 February she had a 7 hour major opp to remove the tumor.

2 weeks later she was discharged from hospital but later readmitted due to a supposed leak at the anastomotic site. She was later discharged and went back to normal routines. Plan after surgery was to start imanitib but this wasn’t possible since she tested positive for hepatitis b. New route was to suppress the hepatitis b virus till it was undetectable and get her to start imanitib. This was to avoid hurting her liver. She is a trained teacher: (May, Jun, July, Aug, early Sept) she was back at work but dysphagia kicked in, she had 3 dilations done within a month, endoscopy indicated that stomach and intestines were all clear. However, October she was readmitted in hospital due to dysphagia, was put on morphine. CT scans revealed GIST was back at the OEJunction, surgery wasn't an option due to her current physical state. She was discharged once more, tried taking supplements to help boost her system but after 6 weeks she started deteriorating again. 24 December she started throwing up blood, 25 December was rushed to the emergency room and admitted. Within the next couple of days she had X-rays, endoscopy and CT Scans done etc. Scans revealed tumor was growing, surgeon decided to operate, upon opening her realized that the tumor was inoperable and ended up taking biopsies in the intestinal area as well as placing a living-stone tube to aid her with feeding. Hepatitis viral road is still not undetectable hence not starting imanitib.

She is currently home, taking morphine tablets but experiences excruciating abdominal pain at times. We also seeing a palliative doctor.

Not at all how we imagined life to turn around.

This is just a summary of what has transpired this past year.

Keeping going.....

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Thank you for your reply Milz, you are right in that we just have to keep going. Sorry to hear what your mum has been through, it does seem never ending. It’s awful that she is in so much pain too. Thinking of you and your mum..x

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Jenny I did not have the surgery because my cancer was too close to the windpipe. Had radio and chemo and was told the cancer had gone. Like you did not feel good had a CT scan and it is in my lungs, been told it is incurable. My hope and yours is that everyday they are bringing out new drugs and I am optimistic that one day they will cure this horrible disease, meanwhile I just keep going. If you need to chat more, than welcome to do so.

Forgot to say I am now back on palative chemo, which I reacted to and ended up in hospital this disease is not for the faint hearted

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Warm hugs*

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Keep going lots of love and hugs

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Hi coco5, sounds like we are going through a similar situation. I know mine is in the chest cavity (and abdo lining) but still waiting for results of lung biopsy. Have developed shortness of breath which can be really frightening. I am hoping to be back on the palliative chemo if I am strong enough. I am also going to ask about immunotherapy at my appt tomorrow, not sure if there are any options available..have you been offered it?

Trying to remain optimistic but it’s tough, just when you think you have turned a corner, something else happens!

Is your palliative chemo classed as second line chemo or are they the same drugs that you originally had?

Thinking of you and please let me know how you are getting on if you can

Jx

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love and hugs..keep strong

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Hi Jenny, hope this message finds you as comfortable as you can be. Immunotherapy has been banded round by me and the registrar but my consultant does not appear to recommend it, so I am on second line chemo different from the original. You are right there is a glimmer of hope then bang, as in my case going into hospital, reaction to chemo and then getting sepsis when I was in there.

It is great to talk to someone who is going through this horrible time, I am sure I bore my family and friends to death|(no pun meant). Thinking of you keep strong if you can. If someone else tells me to keep positive I think I may hit them, I am sure you know what I meanxx

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