First Esophageal Cancer & now Gastric Cancer

[lightsinthecity]

Hi to all,

I am a 14 year survivor of an Ivor-Lewis Open Esophagectomy.

Unfortunately, after many months of throwing up and being unable to keep anything down, several EGD's, an EUS, a CT scan and then the one that we all know means business -- the Pet Scan. I was delivered the news that I now have gastric (stomach) cancer.

I put in a couple key words on top in the search engine to try and find out if there are others out there who have experienced having an Esophagectomy and then having the same unfortunate outcome as myself by ending up with a diagnosis of stomach cancer years later... but, nothing came up.

I am being treated at Northwestern Hospital in Chicago and one of the surgeons there told us that the combo of these 2 cancers is so unusual that when he went to research it he only found approx. 8 or 9 people in the WORLD who have had both. That just seems bizarre!!

The other bizarre thing is that this surgeon also said that we (patient who have had an esophagectomy and now have a different anatomy than anyone else will need a surgery that would normally be to remove the cancerous growth from the stomach (or of that which remains of the stomach post-esophagectomy). He went on to state that neither he nor any doctor in the entire hospital has ever done that type of surgery which, btw, there is no name for. He said it is a unique case and that the surgery itself (to remove cancer from the stomach area) is routinely done - just not with a patient who has had an esophagectgomy prior to having that particular surgery done.

It's hard to imagine that having gastric cancer after having esophageal cancer can be that rare but, I gotta tell you, the way my luck has been running the last 5 or so years I can see it ... it has my bad luck written all over it.

But, seriously, if any of you, or if you know anyone who has had both of these God awful cancers consecutively please let me know. I am just doing my best to get as informed about what is going to happen as I possibly can. I have just started chemo and although they say their "standard of care" is chemo/surgery/chemo - after I heard the depth of what the surgery would entail (very similar to the esophagectomy - especially recovery) I would like to skip the surgery if at all possible.

Fingers crossed that chemo will blast it outta there (radiation still up in the air since they bombarded me with radiation pre-surgery 14 years ago and are presently pulling the records out of storage to see exactly what area they radiated and whether or not they can radiate by where they need to or not right now).

A fact to add about my journey is that I had my oncologist for the EC right here at NW/Chicago 14 years ago but had the actual esophagectomy done at MD Anderson Cancer Center in Houston, Texas (referral from my oncologist) because back then they did not do many esophagectomies at NW Hospital in Chicago and it was a widely done procedure at MD Anderson.

I am 15 years older than I was when I had my esophagectomy and it almost killed me then and to top that off I have spent the last 5 years of my life having 7 foot surgeries to beat back chronic osteomylitis in the bone of my foot so I am not exactly ranking high up there on the healthy chart.

I apologize for the length but I feel the more I put out there the better you get an idea of the situation I am in in case you do care to respond to my post. I hope you do

Thank you all for listening. I really do appreciate it!

I send my best to all of you!!

[hunsdon]

hi I am sending lots of love and I wish you well , I am a 11 years surviver of oesophagus cancer so heart goes out to you x

[Bernadette100]

Good luck with that hope someone replies who has had both

[liz_crisp]

Hi as a 13 year survivor I feel for you and am surprised at how rare it is. wishing you good luck and sending hugs and hoping some more information comes to light. For you.

[fortunatus]

I can only say that this moved me greatly. I can do no more than offer my heart felt sympathy and express my admiration for your obvious strength of character in facing this latest test. I am are all of will be hoping and praying for a successful treatment.

[Singforyoursupper]

I can only second what others have said: and wish you all the very best with your treatment. We feel for you and I feel it seems very unfair - you have been through enough. God bless you.

[walking-in-wales]

I'm coming up to 5 yrs post oesophogastrectomy & doing quite well, but always have in the back of my mind a recurrence or some other cancer. Thanks for sharing your story.

This is so bad luck , if luck comes into these things. I wish you all the best.

[Hidden]

I am so sorry you are going through this. I wish you all the best.

[lightsinthecity in reply to Hidden]

I thank you all for your kind words and support. It means a great deal to me.

On one hand I wouldn't have minded finding out more about the aspect of having 2 evils within a 14 year period but most definitely was relieved that I didn't find it from this site.

Again, I thank you all for responding to my post. I wish all the best for you and your recoveries.

Take care.

[docLocke]

The worst kind of double whammy and all my sympathies for you—first the Ivor Lewis takes 2/3 of your stomach, then a recurrence strikes in the wee tube that’s left. I trust you’ll get back to Anderson at some point, for the same reason you went there for esoph treatment. I’m a 5-year, and as for the Ivor Lewis—I’ve wondered whether this century-old procedure isn’t maybe like radical mastectomy, and we’re ‘way past time to find less dramatic surgical options. Perhaps the gods will be kind this time around, maybe chemo plus radiation will suffice. And maybe you’d be a candidate for proton beam therapy—more precise, fewer side effects. Anderson (and MGH, where I was treated) both have proton beam installations; years ago they were reserved for certain cancers (brain, head) and populations (kids, especially) but may be more accessible now. Still, it’s amazing what we can survive: two years after my I-L a failed diagnosis of blocked colon cost me my ileum and half my colon; mismanaged ileostomy (now reversed) damaged kidneys and heart. By contrast, the cancer a walk in the proverbial park. But I am back to x-c skiing (when we have snow—and there’s another story). Keep us updated— I’m sure there’s lots of us survivors happy to wave your flag, blow the horns, cheer you on.

[lightsinthecity in reply to docLocke]

Hi Doclocke,

Thank you so much for your reply. I am sorry it took a minute to get back as I have been very sick from chemo treatment and not your usual couple days sick but more like couple weeks. They cut my dose down 20% today so we shall see what happens. Very hard to type right now as my hands are very numb (chemo side effect - one of many) so I would like to respond to your very informative reply at a date in the very near future when I can feel the keys a bit. I hope this is okay.

Again, I really appreciated your reply.

Take care - talk soon.

[Notknowmuch]

I’m lost for words on reading your situation. What I can do for you is to uphold you in prayer for open doors to treatment options, stoic steadfastness in your low season to believe and hope for God’s intervention and healing in your health challenges 🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼. Psalm 23