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.

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

You need to cut and past this is another post such as Symptoms and Diagnosis.

This is not an After Treatment Issue.

I will try to draw attention to it.

I do, in fact, personally know someone who has had this procedure, where the entire esophagus was removed and the stomach was surgically put in it's place. The person did not have her voice box removed and the only restriction that she has is to eat numerous small meals throughout the day. She is, overall, pleased with her quality of life.

Petey,
Marlene is member #86 - I think she knows exactly where she wants to place posts.

Hello Marlene, Eileen & Gary.

I'm sorry if I over reacted. I did not look at you member#. I truely was trying to help and thought you were posting in a place where no one would have seen it.

My first response did not post and "vanished", so I hastily wrote this second one.

I will not jump the gun in the future. All of you will be in my prayers.

Sincerely, Petey

Marlene,
Have you had an opinion from a H&N surgeon in NYC or Philly? In Philly you have Fox Chase. In NY, I think that Beth Israel is the best for H&N. Dr Mark Urken is one of the best, and most experienced H&N surgeons on the east coast. Good luck with your decisions.
Rob

Thanks Gary. I'm glad to hear that someone had this surgery and had good quality of life because the only person I knew that had this surgery never came out of a coma.

I wonder why they insist upon removing her voice box? Actually, I believe there is some disagreement between the surgeons on hwat surgery is needed, but Marlene didn't pursue it or question what it is about. There is supposed to be no cancer on the voice box. She is being seen at HUP, Hospital of the University of PA, in Philly which is a 5 hour drive so bopping in for another appt with questions isn't as easy as when it is nearby. This is where I was treated and at least one of her dr is my surgeon. He is not the one removing the voice box. She seems ot have 3 or 4 surgeons on this operation.

If anyone else knows anyone who had esophageal cancer and what their treatment was, I'm certain Marlene would like to hear from you. She had her PET scan tomorrow. Don't know how fats she will get the results.

Thanks,
Eileen

how often should you have a ct or pet scan.it's been over 1yr since i had one.my jaw and neck hurts all the time some times i would just like to cut my head off.please some one let me know.

thank you
lynn

Hi Lynn, I don't know how often we should have a Pet scan but I do know it's like pulling teeth to get a Dr. to order one due to the Insurance Co.

I'm so sorry to hear you are in such terrible pain. In this day and age I don't believe we should suffer so. Please rush to your ENT ask, even beg, for a Pet scan and some pain medication, this isn't right.

I haven't had any luck ,to put it mildly, getting a second opinion. But you might have to try that if your ENT won't help you.

Best Wishes to you