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jethro-t

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

I didn't want this to get lost, so I thought I'd start your own message here. My husband did have IL surgery which sounds like what you are getting (though it could be THE) Everyone is different. At Md Anderson, all tubes but the feeding tube are out when you go home. Some places you have a tube or two left in.

Layne had his feeding tube only until his swallow test. Others have them a month or so. They are good to keep nutrition levels up when you are getting used to eating.

I would say that you should ask the docs, what is best in YOUR situation (surgery or no) and go with that. I would ask more than the surgeon though, I'd seriously ask my oncologist, as well. Surgeons like to cut.

There are those out there who have done well on no surgery. We opted to do it so we knew we had done all we could do. But Layne is young and had no other health problems.

Welcome!

marielle
Posts: 6
Joined: Dec 2009

Betty:
Thank you for your response and kind words! You are so correct in saying that my walk through this may benefit someone else, and it already has. I already received a reply from Jethro with an inquiry about my husband’s treatments.

Jethro:
The original diagnosis in October 2008 was a T1 (borderline T2) squamous cell tumor located at the esophageal junction, no node involvement, no mets – that was great news to us, as most people are diagnosed at later stages. At that time, I knew that a guardian angel was watching over us. It also sounds like yours was discovered very early, which is a good thing.

To answer your question, he had 28 consecutive days of targeted radiation in conjunction with chemotherapy (Cisplatin / 5-FU) – 2 rounds of the chemo, which entailed approximately 96 hours of the continuous infusion pump each time. In April, he had a PET scan and endoscopic ultra sounds (EUS) which revealed no active cancer cells. Since he opted not to have the surgery, he was set up for two more rounds of the chemo. He was tested again in late August – endoscopic ultra sound with multiple biopsies of the tumor site and nearby nodes, along with a PET scan, which showed a complete response to the treatments and he was restaged with No Evidence of Cancer.

He chose not to have the surgery due to heart issues/afib and blood clots. Overall, he did very well during the treatments other than the usual fatigue and he had to watch his fluid intake as he dehydrated easily. Today, he is back to normal and continues to be monitored by his doctors, and will be tested on a routine basis.

At this point, we cannot be any happier and take each day as it comes. Each person is different and responds differently, so please consult with your physicians to weigh your options as they are the experts. As I am sure you have read, surgery is a lifesaver for many but in certain cases, not for everyone.

I pray each day for everyone who discovers they have this disease, as well as for those who are dealing with it day-to-day. If you have any other questions, please let me know.

Best regards,
M

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Dear Marielle,
Wow what a great success story! My dad's story is somewhat similar. He was dx November 2008 with EC. Sounds like the same location. The tumor was at the junction between his esophagus and his stomach.
He too opted to not have surgery due to a 5 bypass surgery in 1994. He had oral chemo and 6 wks of radiation. Pet scan showed a considerable amount of shrinkage of the tumor. Now....a year later he has had his first dilation done due to scar tissue blocking the esophagus, making it still difficult to swallow food.The scope showed no cancer in the esophagus. He is truly a success story to me and our family. Thank you for sharing. I will be showing your story to my dad. Prayers to you and yours as always.
Tina

jethro-t's picture
jethro-t
Posts: 23
Joined: Dec 2009

thanks for all the great information. We did find out today that we had a irregular PET scan and now may not be a candidate for surgery anyway. Talked with oncologist and running biopsy and bone scan tomorrow. Hoping this proves PET wrong. But I think my husband has really wanted to try the chemo/rad route as opposed to the surgery anyway.

Really appreciate all the answers to my questions about tubes, etc. in case we do get to do surgery.

Jethro-t

marielle
Posts: 6
Joined: Dec 2009

Tina – I have read your posts, and am so happy your dad is doing well. I am so glad that you will share my story with him, as every success story gives someone else encouragement and strength. I am so happy I can help. We feel truly blessed, and want to be able to give others who cannot have surgery hope and support. I have read posts for quite some time, and decided that it was time to share our success story. Your dad sounds like he is done very well himself!
Jethro – please continue to keep me informed. Try to take one step at a time – that is what helped me through it. It is a scary journey, but you will get through it. If you have any questions at all, please let me know.

Each and every person on this board are in my daily thoughts and prayers.
Take care,
Marielle

jethro-t's picture
jethro-t
Posts: 23
Joined: Dec 2009

Sorry, I'm not used to this site. Please go to "more news" and read our latest information. Thanks for prayers.

Jethro-t

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