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A word of encouragement

Posts: 22
Joined: Nov 2009

It has been a while since I have been on the boards here but I wanted to update folks to give a little encouragement.

I was initially diagnosed with EC in September 2009. I had chemo/radiation and everything looked good. In May 2010 EC popped back up and I had an Ivor Lewis in June 2010. The result of the surgery was that the surgeon had gotten all the know cancer out. Woot! I had follow up chemo just to be on the safe side.

6 weeks after the surgery I had trouble swallowing again. I got scoped and my GI doc found a stricture at the junction area where they sewed the stomach and esophagus back together. To make things short I had ~10 dilations, 6 stents, and 10 laser ablations from August 2010 until September 2011. This was all due to the benign stricture coming back ever 2-3 weeks to the point that I could not swallow.

That was a tough year.

The 12 month of that year I ended up hemorrhaging from my esophagus the day after my 10th laser ablation. I miraculously stopped bleeding on my own on the way to surgery after losing over 10 units of blood. The surgery was aborted. They almost lost me that day.

After this event we decided that these "repair" procedures were doing more harm then good so we started talking to surgeons about another surgery. We talked to 3 surgeons around Texas and decided to go with one in Houston. I had a Supercharged Jejunum Esophagectomy in November 2011 which is still considered an experimental operation. The surgery was successful in creating a new stricture-free esophagus from my small intestine.

It has been about 12 weeks since the operation and I am doing well.

All of the procedures from late 2010 forward where not cancer related but procedure from cancer treatment related. My oncologist considers me to have been cancer free since the date of my last treat (chemo) which was December 2010. That puts me at about 14 months of being cancer free.

I am now recovering and am not sure if I will return to work due to aliments from treatment (fatigue, neuropathy, chronic pain). While this can be discouraging at times I sit back and look at everything that I have come through and am happy to still be hear for my wife and kids.

I tell you all of this as a word of encouragement. Yes, treatment sucks and there were points where I did not know if I was going to make it - but I did. The key to all of this is to push forward and don't except defeat as an option. Half the battle is in your mind.

I wish you all well and pray that your battle against this disease is a successful one.

paul61's picture
Posts: 1268
Joined: Apr 2010

It sounds like you had a real battle for a while. I am glad the new surgical technique was successful and things are now improving. I am sure some day they will find a way to grow a new esophagus from our own stem cells, but until that time, it looks like the procedure you received is the next best thing. I am curious, have you had any issues with dumping syndrome since your recent surgery?

I hope things continue to improve for you every day.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Posts: 22
Joined: Nov 2009

No, I have not dumping syndrome with this surgery. My surgeon said it might be possible though. I am on a lot of pain meds that usually make you constipated so that may be counteracting things. We will have to see as I continue to wean off the pain meds.

Also, I don't feel as though I have an uphill battle from here, especially after the year that I have had. Instead it is like my life is now the blank page of a new chapter. I am kind of just making it up as I go along. Sure, my life is very different now then it was before but I have the important things in my life still intact - my life, my wife, and my kids. These are the important things. Also, I get to spend more time with them now which is a bonus. I think it really comes down to your perspective/how you view things. You have to work with what you have and live life today since not one of us knows if we will be here tomorrow regardless of our health/cancer.

TerryV's picture
Posts: 916
Joined: Jul 2011

Wow! That does sound like quite a difficult year. Congratulations on having the Supercharged surgery! That surgery actually makes more sense to me than the original esophajectomy because it leaves the stomach intact and in place. I realize there are a couple of other cuts to deal with, but perhaps no impact to eating. Paul's right - any dumping since the latest surgery?

Always glad of good news and encouragement! Thank you for coming back to let us know.

wife to Nick, age 48
dx 05/19/11 T3N1M0
28 rads/2 weeks inpatient Cisplatin & 5FU
THE 09/08/11
Clean Path 09/13/11

Posts: 22
Joined: Nov 2009

Well it is 8 months later and I just happen to stubble upon this post and wanted to add an update. I am still doing good and still no cancer. This year is proving to be far more mellow then the previous.

To answer TerryV's question - no, still no dumping syndrome. I still am on a few different pain meds so that is probably still keeping that at bay if it is a possibility at all.

In regard to pain - this has mostly to do with the chemo that I had and 2011 with it's many procedures. My body got thrashed. During that time I had lost so much weight my muscles started to atrophy. The pain I have is from this and neuropathy. I am going to physical therapy to work on this and am making progress.

I still am not working and am not sure if I will ever be able to go back at this point. I am 37 but have the energy of someone twice my age which puts me well into retirement. I would love to get my stamina back, and that is what I am working towards, but my wife and I have both agreed that it is not worth killing myself over.

So with everything I have started to write in this new chapter that has been given to me.

hopefulsurvivor49's picture
Posts: 32
Joined: Apr 2012

Thank you for sharing your struggle and positive news and attitude. Your second surgery sounds like it makes so much more sense physiologically. I wish you continued healing.

May I ask what chemo drugs you had for follow-up?

sandy1943's picture
Posts: 883
Joined: Jun 2010

Thanks for the encouragement. Sometimes we keep getting slapped, but you are right, life is precious and worth the battle and we must expect to win!
Let us know your progress. It sounds like it will be all uphill.'

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