New friend

Marce1

Hi everyone my name is Marcelle and I have just found out I have an Adeno carcinoma in my Esophagus. This type of cancer is rear and my Doctors cant give me any stats on it. My options are Chemo and intensive Radiotherapy which, as most of you know does nasty things to the Esophagus and the Docs still don't know if the tumor will respond fully to that treatment plus I don't think cutting is much of an option after that treatment either(not sure on that though)
Option 2: is to remove the windpipe and voicebox (as the tumor is behind the voicebox and leaning on the windpipe) cut the tumor from the esophagus and move my stomach up and join it up again, plus Radiotherapy. All of these are not flash options and my doctors just don't know enough about it to help me make the best decision.

My question is - has anyone on this site had the same procedure or know someone that has? Has anyone had any of the procedures and how are they coping?

I would so love some feed back as i'm feeling pretty lost and confused

Many thanks
Marcelle xx

fredswilma

Hi Marcelle
I am so sorry
Hi Marcelle
I am so sorry that you have found yourself here, we are a caring and loving community that has extensive knowledge being that we have all lived either with EC or as caregivers of EC, my husband is stg ivb so I do understand the terror you are feeling, have you been staged yet and have you had a second opinion, really really important, this cancer strikes really quickly and you need to be on top of it, let us know where you are at, there are some awesome people on this site that will be able to help you with any questions you may have, fire them at us.
Thinking of you
Ann

AngieD

fredswilma said:

Hi Marcelle
I am so sorry
Hi Marcelle
I am so sorry that you have found yourself here, we are a caring and loving community that has extensive knowledge being that we have all lived either with EC or as caregivers of EC, my husband is stg ivb so I do understand the terror you are feeling, have you been staged yet and have you had a second opinion, really really important, this cancer strikes really quickly and you need to be on top of it, let us know where you are at, there are some awesome people on this site that will be able to help you with any questions you may have, fire them at us.
Thinking of you
Ann

Hi, Marcelle,
You have come to a good place. I'm fairly new here, but there are very knowledgeable people here who have experience with EC in all it's forms. I'm sure you will be hearing from them.
I just want to say that it is really a terrible serious disease and some doctors do not have much experience with it. There is progress being made and success stories to be found. I hope you will not make any decisions until you see an oncologist who has a lot of experience with this. And the sooner, the better. It can move fast.
Just being diagnosed and starting to learn about the disease is overwhelming. ( My husband was diagnosed in June as Stage IV.) I can just suggest getting as much information as possible from doctors with lots of experience with the disease and from folks here with real life experiences dealing with it. Don't pay much attention to a lot of stuff on the internet--lots of old outdated data there. And the mantra we all try to learn and re-learn, take one step at a time, one day at a time.
Angie

BMGky

You need more information
You must know your staging. This is done by a specific scope. Others know its name. Also, you need a PET scan. This information will provide the basics for your treatment options. These tests need to be done as soon as practicable.

You need an experienced treatment team.

Once you get the above information, please post as then, those with the most experience with your stage of cancer can help you in forming a basis for decisions, can help you in dealing with various side effects that occur, and a host of other yet unasked questions you are sure to have.

There are wonderful success stories and poignant care stories. All on this site are pulling for the best outcome possible.

My husband had pre-op chemo/radiation and surgery with the stomach pull up you mentioned. He's 18 months post op and tests NED (which I learned is No evidence of disease.)

Hurry back and let us know what is going on. We wish you the best. BMGky

megmacmd

Hi Marcella
Hi Marcelle
Iam so sorry for your diagnosis I an a 56 your old widow my husband of 30 years died suddenly of a brain anuersym 3 years ago and I found out this March 2011 I had EC at first they said stage 3 but I had mets in my pelvis anf perihilar( around my lungs) I was not a surgical candidate which was fine with me the operation can be very debiitating I have opted for full quality of life I want to have to continue to work to keep my health bebfits and get my youngst child through college. I have done 12 flofox treatment which have stabiled everything my mets shrunk and my biopsy showed no cancer in my esopagus.But as a health professional ( Iam a pediatric neonatal Hospitalist) I know this is not a good disease . I have seen my dad die of bladder cancer and my sister and mother die of breastcncer over the last 5 years.I my self have decided to opt for quality of life not quantity I want to be able to work as long as posssible and I dont want to spend it in the Hospital since I spend lots of time there already.I may be nieve in thinking I will beable to ivea normal life until the bitter end. We must al make our own decisions my doctor is grest and is a high school friend and he knows my goals. I am beggining to have peripheral meuropathy from the cisplatinum after12 treatments no wonder I am taking a chemo holiday for2 months and then I will decide to continue.I know this isa very unforgiving disease and yes relatively rare except for in Asia where it is much more common.Everyone must make their own decisions I do not have a caretaker so I must forge on until I have no options I will go to live with my eldest daughter when I cant work any more .Until then I enjoy my beach house and my jack russell and going to work is a delight. You have a tough decision to make but as for me from what I read on these pages this disease tends to reoocur and I dont want to go through a lot and then have it be the same in the end I intend to enjoy my last year or so living life and enjoying my children Just got back from my nieces wedding in WashingtonDC and look forward to Thanksgiving when all 3 of my children will be coming I wish you the best in your tough decisions hope you have a great support system if you are scared you are welcome to email me or call me 1- 757-437-9663 best of luck Meg McIntyre

chemosmoker

WELCOME! NEED TO POST MORE INFO....
Marcelle,

As many have said already, a LOT of people on this site have had, are having, or have already survived the exact same procedure you are asking about.

More information MUST be provided from you to help you. What hospital are you going to, or what area are you in? Are you in the states? Do you have an Oncologist? Did they tell you what STAGE your cancer is or anything else?

There are a lot of people here just waiting to post to you and help, but we will need more information to be on target and help in the right way.

I hope you will post more soon and continue to be a member of our family of cancer patients and caregivers here on CSN. We welcome you and as many questions as you can think of.

I look forward to you posting more soon!

God bless,
-Eric

jim2011

Hi Marcelle
You need more information. The standard of treatment in the US is chemo/radiation and then surgery. It is tough treatment but lots of folks (including me)have done it before you. Continue scans and tests to determine the stage you are in and then your options will become more clear. I wish you the best.
Jim

Marce1

Still waiting
Hi everyone thankyou for you're response. I have had cat and pet scans and this showed only the one localized tumor
and one lymph gland stage 3. The problem the docs are having is the location. It is sitting right up behind the voicebox and leaning on the windpipe wall. Aparently not many documented cases world wide for my Docs to Decide the best and most efective treatment. We would travel anywhere in the world to have the best treatment if that is what was nessersary. I 42 years old, I don't feel sick, I don't have a sore throat, I haven't lost weight so it's hard to get my head around what is happening:-)
Kind and very special thoughts to you all
Marce xx

mjolee

Hi Macelle,
I just found
Hi Macelle,
I just found this site yesterday, needed info to help a friend. I had posted with questions and concerns about proper procedures. Everyone that responded gave me helpful info and questions that need to be answered. I know the people on this site will help.you as much as they can. I do not know much about this stuff, but what I have learned from here is you need a dr. that has alot of experience with this specific problem. Don't settle on one & ask questions! If you not comfortable with what one dr. Gives go to another and ask what they would do for this. Good luck, I know I did not offer much, but I know u will get great advice here.
Mandy

mjolee

Hi Macelle,
I just found
Hi Macelle,
I just found this site yesterday, needed info to help a friend. I had posted with questions and concerns about proper procedures. Everyone that responded gave me helpful info and questions that need to be answered. I know the people on this site will help.you as much as they can. I do not know much about this stuff, but what I have learned from here is you need a dr. that has alot of experience with this specific problem. Don't settle on one & ask questions! If you not comfortable with what one dr. Gives go to another and ask what they would do for this. Good luck, I know I did not offer much, but I know u will get great advice here.
Mandy

NGC1514

mjolee said:

Hi Macelle,
I just found
Hi Macelle,
I just found this site yesterday, needed info to help a friend. I had posted with questions and concerns about proper procedures. Everyone that responded gave me helpful info and questions that need to be answered. I know the people on this site will help.you as much as they can. I do not know much about this stuff, but what I have learned from here is you need a dr. that has alot of experience with this specific problem. Don't settle on one & ask questions! If you not comfortable with what one dr. Gives go to another and ask what they would do for this. Good luck, I know I did not offer much, but I know u will get great advice here.
Mandy

You need answers, Macelle...
And it doesn't sound like you're getting them from your doctors. What you need is a second opinion from a major cancer center. If you are in the United States, MD Anderson would be your best bet. (That is from what I've read over my 11 year esophageal cancer experience - I didn't follow that advise and had my treatments locally in Atlanta).

Eric in Atlanta

mjolee

NGC1514 said:

You need answers, Macelle...
And it doesn't sound like you're getting them from your doctors. What you need is a second opinion from a major cancer center. If you are in the United States, MD Anderson would be your best bet. (That is from what I've read over my 11 year esophageal cancer experience - I didn't follow that advise and had my treatments locally in Atlanta).

Eric in Atlanta

Hi, my name is Mandy, I was
Hi, my name is Mandy, I was just wondering who u used in atlanta, and if u had a bad experience?
I am in Atl. trying to get help for a friend that I believe was not properly taken care, and now has been abandoned by the dr.