Recently diagnosed, surgery coming up.

BobHaze said:

Expect good things!
Hi Greg:

I was Stage 1a and had a Minimally Invasive Esophagectomy last September, and I’m doing great. I only had 1 surgery so I’m curious what your 1st and 2nd surgeries are about. But you asked what to expect, and with the top notch surgeon you have I think you can probably expect good things – a bumpy ride during recovery and you may find it’s 2 steps forward and 1 step back as you go forward, but it's generally good.

I’m just shy of 11 months post-op and I eat everything I used to eat, just not as much at a sitting because my stomach is smaller than it used to be, so I also eat more often. I’m 6’ 0” tall and pre-surgery I weighed about 195; within a month after the surgery I weighed 175, and my surgeon said I probably wouldn’t be gaining it back – and he was right. I’m actually at a really good weight now so that’s no big deal, but the nature of your new digestive system (we refer to our stomaphagus, here on this board, lol) is that you will digest your food differently than before - in my case everything tends to go through me faster than it used to. For a few months after my surgery I had lots of learning to do with respect to eating, and there was a lot of diarrhea to deal with - very common. But I learned what to eat and when, and my guts learned how to deal with having been reconfigured, and we got to know one another and things settled out just fine.

One measure of my recovery is that I rode my bicycle a lot this summer while training for a big cancer fundraiser ride, and a couple of weeks ago I did the ride: 191 miles in 2 days. It wasn’t easy, but then again it wasn’t easy for most of the 5,500 riders – I had sports drinks and sports eats that my surgeon (a big runner himself) recommended, but my point is that I was able to do it. When I crossed the finish line I was beat but elated, because I was able to do it. I friggin' did it!

You and I and Cap’n Dave and a very few others on this board are among the luckiest SOB’s around, for having been diagnosed early at Stage 1. The surgery is the same for you and me and Dave and William, although Dave and I didn’t need any chemo or radiation (do you?), so maybe our recoveries were easier than for some others. It isn’t always easy, but if you follow the advice of your medical team – maybe especially regarding exercise and eating – you should do just fine. You have cancer (doesn’t it suck to have to say that?!?) and you’re going to have major gastric surgery, but there is a good life on the other side of it for most of us who were lucky enough to be surgical candidates.

So good luck to you, and please keep us informed. This is an amazing group of some of the best informed, most supportive and compassionate people I’ve ever been involved with. This board made my recovery much easier, but it’s a 2-way street and we need to know what’s happening if we’re to offer advice and support.

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

BobHaze said:

No symptoms
Sadly, there are no symptoms when you’re at Stage 1. In my case, I had reflux for many years and when I finally told my primary doc about it she immediately sent me to a gastro doc. I was 55 and hadn’t had a colonoscopy yet so he scheduled it, and when I woke up from that he told me he had done an endoscopy as well, to check on the reflux. He found Barrets Esophagus and put me on a schedule of repeat endoscopies. Last summer he found an area in my lower esophagus that he thought looked :ulcerated” so he took biopsies and it turned out to be adenocarcinoma. So I was diagnosed during “routine surveillance.” The next step is an Esophageal Ultrasound (EUS), which said I was Stage 1a, and it was off to the surgeon.

As far as I know there’s no way to know you’re at Stage 1 unless they physically look, which is why the vast majority of EC patients don’t know they have it until they’re Stage III or IV. My surgeon told me the esophagus is like the uterus, in that it’s designed to expand and contract. So when a tumor grows in the esophagus it just expands to allow food to pass, until one day the tumor is so big it can’t stretch enough, and the food gets stuck so you go to the doctor and you get bad news.

I’m no doctor, but from everything I’ve learned about this beast it’s very important – vital, even – for anyone who has GERD or frequent heartburn to get an endoscopy and see what’s up. People on this board have reported their gastro doc “refusing” to do it even in the face of GERD and/or frequent heartburn, to which I say “Fire the SOB” and find a doctor who understands the seriousness of these conditions.

I’m sorry to hear about your mother, and I truly wish her all the best.

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

Lina71912 said:

How did you find out?
Hi Greg and Bob,

How did you find out about your cancer? What were your symptoms? What type of test did you have? For my mother she was in stage III when she has difficulty swallowing. I would like to know the symptoms for stage I so me and my family members would know what to look for because my mother and my grandmother have EC.

Thank you!

Lina