I POSTED THIS FOR MARLIZ MEMBER#86. THESE ARE HER POSTS AND AN E-MAIL TO ME. CAN SOMEONE PLEASE HELP HER? THANK YOU!
Thank you so much for your response and you may me be right that I should post my dilema in a different place.
I may be member #86 but I'm no pro at this and actually don't have a clue. I appreciate Gary's faith in my judgement but right now I'm not thinking too clearly, even if I were i'm not good at expressing myself.
I'm sooooooooo glad to see you back at the board sooooo soon after your surgery, AMAZING!!!!!!!!!!!!!!!!
Thank you for your concern and advice. I will try and cut and paste or write a new letter. Basically all I want to know is if someone had their esophagus taken out and a feeding tube put in stomach. I've no interest in having my stomach moved up or anywhere else. I like it fine just where it's at, thank you.
You take care, I don't know you but feel like I do and wish you the best luck in your healing process, Marlene
Thank you so much for your response and you may me be right that I should post my dilema in a different place.
I may be member #86 but I'm no pro at this and actually don't have a clue. I appreciate Gary's faith in my judgement but right now I'm not thinking too clearly, even if I were i'm not good at expressing myself.
I'm sooooooooo glad to see you back at the board sooooo soon after your surgery, AMAZING!!!!!!!!!!!!!!!!
Thank you for your concern and advice. I will try and cut and paste or write a new letter. Basically all I want to know is if someone had their esophagus taken out and a feeding tube put in stomach. I've no interest in having my stomach moved up or anywhere else. I like it fine just where it's at, thank you.
You take care, I don't know you but feel like I do and wish you the best luck in your healing process, Marlene
I had to go to my PD today to get his push for the insurance co. to get my Pet scan done though I had a Script from HUP.
He had not recieved any info except for one letter from HUP yet had to fill out 500 forms(I'm sure he exagerated)to satisfy Ins. Co.
He was pretty hot, not with me, but the Ins. co. and HUP.
I will be getting my second Pet scan in 5 years this Wed.5/30 and then will have to decide what and where to do what I believe needs to be done. Removal of my esophagus and a life time feeding tube inserted. I'm very tired of force feeding myself the past 5 years so know I can tolerate the tube.
At least I will be able to talk, smell, blow my nose etc.
First I need to unload and tell you why I'm so angry.
The Chief of Staff told us Monday that he was going to remove my esophagus and voice box that, to my knowledge or his, has no cancer. Then another Dr. was going to raise my stomach to throat then attach it to a rebuilt esophagus. He also might have done a RND and remove some lymph nodes.
The last Dr. we saw was the one that would have raised my stomach. He never made eye contact, said ludly this is very serious surgery, one in 10 doesn't live through it and I will not do it till you have a Pet Scan. If it shows any cancer cells in lymph nodes I will not do it and we will have to use Radiation and chemo.
What I found out today from my PD is that the Dr. that invented this procedure is right here in Pitts UPMC.
What I'm angry about is the Chief of Staff was going to butcher me and I feel my quality of life would've been just about unbearable without first getting a Pet Scan.
OK I feel better just telling you all that understand what a close call I had, so think, think, and think again before making decisions.
Luck and best wishes to all of you.
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Marlene
Marlene and I have been emailing and talking for the last couple of weeks and I asked her to post again, but she has not given you all the detailson what they plan to do.
The biospies in the upper esophagus came back as carcinoma in situ in two spots, if I understand
correctly. They are planning to remove her entire esophagus AND voice box, and pull her stomach up to her throat. The only way she will be able to speak is with an electrolarynx. TEP is not an option if they pull up stomach. I am confused now as to whether she will have a trach. If she does, she won't be able to smell or blow her nose.
She is now telling us the one doctor says radiation and chemo will be used if PET positive. Why not try that first rather than the drastic surgery?
Does anyone know anyone who has had cancer in the esophagus? How was it treated and what was the outcome? What was their quality of life?
The surgery they are planning to do to her seems drastic to me for what is severe dysplasia, but I'm not a doctor. The one doctor was going to try to laser it off. I don't know what happened to that option.
If anyone has or knows of someone who has had this or the surgery, I am certain she would appreciate the input. What they are proposing is very scary.
Marlene, please correct any errors or omissions I made in this post.
Thanks and take care,
Eileen
You got it all correct Eileen and thanks for your help in asking if anyone else has gone through this ordeal for me.
I'm not gifted when it comes to expressing myself in writing so thanks for your help.
Luck and Best Wishes to all
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Marlene
