Hi Everyone, I saw the Chief of Staff again at HUP (Hosp. of University of Penn) Wed. and for the second time he told me they would be taking out my voice box and esophagus. This is before the results of th biopsy the Gastrologist had taken that AM.
The week before the Chief of Staff had taken 4 biopsies from esophyagus that showed cancer.

I haven't had a biospy of voice box, Pet scan, and still have 2 Drs. and speech therapist to see this Monday, so don't know why he's in such a hurry to take it out. He just said something ,like "they are all in there together".

I don't know how or am afraid to talk to Dr. I'm working on getting up the nerve to ask quality of live issues with my 2 new Drs. Making a total of 4 but expect they will follow the direction the Chief of staff points them.

If I have a choice I would much rather be able to talk then eat. I know a feeding tube isn't great but I'd much rather be rid of the esophagus with cancer and keep my voice box. I've not had a decent meal in 5yrs. due to swallowing problems so pretty much have to force feed myself which is no fun.

Wonder if anyone has any thoughts or ideas on the predictament I find myself in.

Luck and Best wished to all of you in this journey we find ourselves.

Marlene,

We are not doctors, except a few in the dentistry field, so you really need to consult with the experts. Brian, Gary and JoAnn are close but even they would not venture to make recommendations.

Don't be ashamed or afraid to speak up for and on behalf of yourself. YOU MUST BE YOUR OWN ADVOCATE...no one else will be. Seek another qualified opinion if need be and try and become as totally comfortable with the decisions BEFORE you can't affect them anymore. I saw 5 "specialists" before I thought I was comfortable and I still won't ever know who may have been right until perhaps the day I die.

Prepare a list of questions for each doctor you will see in advance of your appt. Keep a sheet of paper with you always and when a new question pops into your head, write it down. Don't rely on your memory in this stressful time. Then when you meet with them ask each one every question and ask more if their answers make you and write their answers down. Say "slow down" if you need to. Hey this is your life, not there's. Just remember that. We were all scared at one point and I guess I still am but I have just grown accustomed to the feeling.

Thank you David for your post. It was the last thing I read before we got on the road to Philly and gave me some peace of mind that we are all in the same boat.
I'm going to go ahead with this major surgery with high hopes that I'll get through it and then adjust to my new normal.

So hard for me to believe anything is wrong since I feel so good and just had an MRI that showed no cancer in throat.
I will be getting PET scan here in Pitts. so that should show the true facts and my final deciding factor.

Thank you and best of luck to all

Marlene, Got my fingers crossed for you. Hoping for the best outcome in Philly. Amy in the Ozarks

Marlene, I'm hoping you get the best outcome too. I totally understand caring more about not being able to talk than not being able to eat but remember that what's most important is to make sure everything possible is being done to get all of the cancer.

I recently had a conversation with my medical oncologist who told me MRIs aren't the best at detecting early cancers in the throat or on the tongue and I guess the fact that you recently had one that showed everything looked good but had biopsies that chowed cancer in the esophagus is a confirmation of that. Which scares me because I had a PET that showed some "Marginal" suspicious areas, even thoiugh my ENT saw nothing when he scoped me, and *he* told me that I should be reassured that the MRI looked normal as well.

There's just no end to the scary stuff we can face at any moment thanks to this disease. We're all here thinking of you and knowing we could be in your shoes.

Nelie