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Just Diagnosed

WifeOfSurvivor2Be
Posts: 23
Joined: Aug 2012

Hello,
I am sure there are other posts similar to mine. I am so happy to have found this site. When the tumor was found in my husband (July 11) he was having problems swallowing. He has been diagnosed with T3N(0,1)M0...I think that is right. Thankfully, he can still eat but it has been challenging. They say that will probably get better once he starts the chemo and radiation. We meet with those folks this coming week and I imagine will start later.

I immediately went to the internet and looked up esophageal cancer and saw just heart breaking results. I have since learned, this is treatable.

So....hence my name...because my husband will survive this!!! He has been through so much already. He had a kidney/pancreas transplant almost 3 years ago. Oddly, he is quite healthy, in good shape and has a pretty good energy level.

My main question right now is about the surgery. It sound barbaric!! Is there other options beside removing the esophagus? We are planning to seek a second opinion on the surgery as we need to get through the chemo and radiation first. We don't want to delay any treatment. Just wondering if that is the only option....it does seem like the "standard".

I haven't read too much because I was so scared and discouraged at first. I have read a few of the stories on this bored and I think this may be my go to area. How encouraging.

Bless you all and continued good health!

Bermudagirl
Posts: 120
Joined: Jun 2012

And let me be one of the first to welcome you. I joined this "club" just about 2 months ago, and know more about EC than I ever dreamed. But I know nothing compared to some of the people you will meet here. This site is truly a godsend for those of us who come knocking, shell-shocked by a diagnosis and just wanting to see if things will be alright.

William and Sherri are the two people that really have the fingers on the pulse of EC. William is a ten year survivor and Sherri was a caregiver to her husband who had stage IV EC. Their advice is invaluable.

I'm in the same situation as you are, my 58 year old boyfriend was dx on June 11th with T3N2MO EC. He is in the second week of chemo and radiation, we speak with his surgeon on Friday morning, and believe surgery probably will happen the third week of September. It's been a roller coaster, but we are getting through it pretty well.

I'm glad you found us, and be sure to ask any and all questions. We're here to help you and your husband through this, you are not alone!

Sandy

BMGky
Posts: 666
Joined: May 2010

My husband was diagnosed in December 2009. Underwent chemo/radiation and then Ivor Lewis surgery for esophagectomy. It was challenging. Recovery from the Ivor Lewis is quite lengthy. It was nearly 7 months before his strength started to return. He was age 71 when he had his operation. He has continued to improve, continues to work and is enjoying life.

Hope you are going to a recognized cancer center with a team co-ordinating his care. There are many great facilities in the U.S. Mr. Marshall particularly likes Dr. Lukitech at the University of Pittsburgh or Pennsylvania--one of them. Dr. L. does the minimally invasive esophagectomy. Recovery much quicker. Surgery not as invasive. However, if you don't have access to such a program, the Ivor Lewis is doable--rough but doable.

Glad you are being aggressive in following up on treatment. Hopefully, the "pros" on this site will soon be posting. William and Paul were very helpful to me. Many others have been very supportive and encouraging. Ask any question. They will be glad to answer. BMGky

Lina71912
Posts: 15
Joined: Jul 2012

Spent more time with your husband, I regretted that I did not do so for my mother as I have always thought that my mother is strong, she will be fine, but unfortunately, her surgery did not go well she is now going through many complications.

God bless your husband, you and your family!

Josie60's picture
Josie60
Posts: 81
Joined: Jul 2012

Welcome. I am a stage 3. 5 month afterDiagnosis, 2 months after surgery. make sure you get a surgeon that is experienced with EC surgery it makes all the difference.

I found that you can't dwell on all the dismal information about EC. You have to understand the reality, but focus on the positive stories to inspire you.

Facing such a huge surgery is terrifying, but in reality it is the best option for long term. I had back surgery 10 years ago and this wasn't much worse. I did have a minor complication but it's slowly healing and I am getting stronger and more active every day.

WifeOfSurvivor2Be
Posts: 23
Joined: Aug 2012

William,
I replied to the discussion. I thank you for all of the information.

Amy

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

Hello,
I’m so sorry that you find yourself here although a very warm welcome to you.
You didn’t say where your husband’s tumour was located or how large they think it is.
I can only give you the experiences of my husband who had adenocarcimoma at the
lower junction of the oesophagus. His tumour was 8cms on dnx.
He had three months of chemo, cisplatin 5fu and then a month off to get his strength back
prior to surgery.
He sailed thro the chemo except for two days in each month when he had problems with his throat, and he felt really poorly.
On his month off we walked 4 miles a day to try and build up his strength and I watched his diet carefully to make sure he had all the nutrients that he needed and didn’t lose too much more weight.
He had the Ivor Lewis on 29th February and yes, his surgeon thought that it was absolutely necessary.
His surgeon did not feel that he had much of a chance without it.
I have to tell you that five months on, he is eating more or less what he wants, his strength is returning slowly and other than episodes of ‘dumping’. He is doing really well. He had a scan at three months after surgery and it was clear. Fingers crossed for the future. He still has a little discomfort from his scar, which is really impressive, but he is certainly alive and kicking and we aren’t giving up any day soon.
I just wanted you to have a feeling of life after all the surgery is over. It will be ok - honestly.

A few things that you might like to consider.
1/ Ask Sherri or William to help with the questions for your surgeon, they have a list. I know they won’t mind.
2/ Make sure that your surgeon is very experienced with EC operations. He will need to have done at least 100 and ensure that is is a very well established cancer centre. This will make such a difference to your husband’s well being prior to and after surgery.
3/ Ask your chosen specialist to test your husband for the HER2 gene. My husband didn’t express it, but if he had things would have been a bit easier for him.
Dr James Lukeditch in Pittsburg is the world authority on EC and although I am in England and couldn’t afford to travel to the USA for treatment, he answered my e-mails and was really helpful.
There are lots of things that you will have questions about and feel free to come in here any time. Someone will answer you and the real authorities here are William and Sherri. When they are on-side, it makes you feel safer.

I hope and pray that things will go well for your husband. Don’t lose your positive mental attitude.
God bless you.
Hugs and prayers,
Marci x

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