New and Just got the news (BAD)

BMGky said:

Sorry for your diagnosis. zGlad you are here.
Welcome. Will try to be of help.

Key things that will influence people's responses, among others, are the stage of your EC and the type. Most frequently, the DX is adenocarcinoma. There are a few who have squamous cell. Please let us know as soon as you can the requested information.

I am a caregiver. My husband is two years post op and is enjoying life. Bumps here and there but they're more distractions than anything. Don't take me wrong. Treatment is not for the faint of heart but doable. All of this is premature until type and stage is known. I would encourage, though I am not a medical person, that if a choice of stent or jtube arises, I feel, not medical advice, but I feel the jtube works great. If I can operate the little portable pump, anyone can! You may find your Mom is going to help you. Both my husband and I are.in our 70's.

I have more information; however, I'm on my iPad and am probably not typing accurately. When I get to my regular computer, I can write more. Feel free to send me an email through this site's mail service. It keeps the posts from being so long.

Oh, yes, be sure your treatment is coordinated by an experienced esophageal cancer team. A fine but solitary oncologist needs the additional support of radiation oncologists, thoracic surgeons experienced in EC surgery, etc. oftentimes, major universities have ranked cancer treatment programs. Usually, they'll have an EC "specialist" or one focusing on this rare cancer.

You need to be proactive in your knowledge. This site, although wr've recently had some of our more experienced survivors move to another site, is a good starting point.

Look forward to hearing from you. BMGky

paul61 said:

Welcome to our group
Hello JS,

Welcome to our little EC family.

I received my EC diagnosis in October of 2009. I had surgery and chemotherapy and here I am almost three years later. I will not try to convince you that the treatment and surgery you will receive will be easy, but it is survivable.

It sounds like you are off to a good start in getting the things done that you need to stage your cancer and getting a treatment plan defined. It looks like your next step is to complete the endoscopic ultrasound to complete the staging of your cancer. They will administer a mild sedative prior to completing the endoscopy so you will be asleep when the actual procedure is done. The gastroenterologist that completes the ultrasound will be able to give you some information about staging right after they complete the procedure. He should be able to tell you:

1. The position of the tumor
2. The size of the tumor
3. The depth the tumor extends into the walls of the esophagus
4. If there is suspicion of involvement of nearby lymph nodes or other structures

This information will be used to define a cancer dispersion that will be T (a number) N (a number) and M (a number) this information is then translated into a stage. For example, my cancer dispersion analysis was T2N1M0, and that translates to Stage IIB. Once the staging is complete they will define a treatment plan.

Here is some information about what to expect from the ultrasound:

Click Here for information about Endoscopic Ultrasound

Once the staging has been completed you are ready to begin the definition of your treatment protocol. Some advise in this area; Esophageal Cancer is a relatively rare form of cancer. Based on my personal experience, and the three years I have participated on this support forum, this is not the type of cancer that can be treated by your local home town oncologist and surgical team. I encourage you to go to a nationally known treatment facility for Esophageal Cancer. Since you live in central Indiana there are several relatively close to you. Some suggestions would be; Mayo Clinic in Rochester Minnesota, University of Pittsburg Medical Center in Pittsburg Pennsylvania, or University of Michigan Cancer Center in Ann Arbor Michigan. Most of your treatment can still be done close to home; but the medical team at one of these centers will cooperate with your local oncologist to define a tri-modal treatment plan that can be done locally. Your surgery and after care can be completed at one of these medical centers.

Click Here for information on UPMC

Click Here for information on Mayo clinic

Click Here for information on University of Michigan

“Tri-Modal” Cancer therapy typically consists of chemotherapy using several drugs to target the cancer throughout your body, Radiation therapy to kill the tumor and cancer in surrounding tissue, and surgery to remove all cancer cells that may be left after chemotherapy and radiation therapy. This threefold approach provides the best chance of insuring the cancer does not return.

I don’t want to bury you in too much information prior to knowing the stage of your cancer. Some suggestions in the short term:

1. Ignore the statistics you see on the internet they are usually out of date and don’t reflect current treatment results.
2. Take someone with you to all appointments and ask them to take notes, you will be given lots of information and you will be preoccupied with your diagnosis.
3. Ask lots of questions you will hear lots of words you don’t understand ask to have those words explained.
4. Keep a folder with a copy of all test results. Always ask for a copy of your test results. You will be seeing lots of doctors and having your information with you can speed things along and avoid mistakes.

I hope your treatment journey completes quickly and effectively. We will be here to answer your questions as they come up.

If you would like when you are ready send me an email via CSN and I will send along my private email and telephone number and we can chat if you like

Best Regards,

Paul Adams
Grand Blanc, Michigan

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

paul61 said:

Welcome to our group
Hello JS,

Welcome to our little EC family.

I received my EC diagnosis in October of 2009. I had surgery and chemotherapy and here I am almost three years later. I will not try to convince you that the treatment and surgery you will receive will be easy, but it is survivable.

It sounds like you are off to a good start in getting the things done that you need to stage your cancer and getting a treatment plan defined. It looks like your next step is to complete the endoscopic ultrasound to complete the staging of your cancer. They will administer a mild sedative prior to completing the endoscopy so you will be asleep when the actual procedure is done. The gastroenterologist that completes the ultrasound will be able to give you some information about staging right after they complete the procedure. He should be able to tell you:

1. The position of the tumor
2. The size of the tumor
3. The depth the tumor extends into the walls of the esophagus
4. If there is suspicion of involvement of nearby lymph nodes or other structures

This information will be used to define a cancer dispersion that will be T (a number) N (a number) and M (a number) this information is then translated into a stage. For example, my cancer dispersion analysis was T2N1M0, and that translates to Stage IIB. Once the staging is complete they will define a treatment plan.

Here is some information about what to expect from the ultrasound:

Click Here for information about Endoscopic Ultrasound

Once the staging has been completed you are ready to begin the definition of your treatment protocol. Some advise in this area; Esophageal Cancer is a relatively rare form of cancer. Based on my personal experience, and the three years I have participated on this support forum, this is not the type of cancer that can be treated by your local home town oncologist and surgical team. I encourage you to go to a nationally known treatment facility for Esophageal Cancer. Since you live in central Indiana there are several relatively close to you. Some suggestions would be; Mayo Clinic in Rochester Minnesota, University of Pittsburg Medical Center in Pittsburg Pennsylvania, or University of Michigan Cancer Center in Ann Arbor Michigan. Most of your treatment can still be done close to home; but the medical team at one of these centers will cooperate with your local oncologist to define a tri-modal treatment plan that can be done locally. Your surgery and after care can be completed at one of these medical centers.

Click Here for information on UPMC

Click Here for information on Mayo clinic

Click Here for information on University of Michigan

“Tri-Modal” Cancer therapy typically consists of chemotherapy using several drugs to target the cancer throughout your body, Radiation therapy to kill the tumor and cancer in surrounding tissue, and surgery to remove all cancer cells that may be left after chemotherapy and radiation therapy. This threefold approach provides the best chance of insuring the cancer does not return.

I don’t want to bury you in too much information prior to knowing the stage of your cancer. Some suggestions in the short term:

1. Ignore the statistics you see on the internet they are usually out of date and don’t reflect current treatment results.
2. Take someone with you to all appointments and ask them to take notes, you will be given lots of information and you will be preoccupied with your diagnosis.
3. Ask lots of questions you will hear lots of words you don’t understand ask to have those words explained.
4. Keep a folder with a copy of all test results. Always ask for a copy of your test results. You will be seeing lots of doctors and having your information with you can speed things along and avoid mistakes.

I hope your treatment journey completes quickly and effectively. We will be here to answer your questions as they come up.

If you would like when you are ready send me an email via CSN and I will send along my private email and telephone number and we can chat if you like

Best Regards,

Paul Adams
Grand Blanc, Michigan

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

mardigras said:

Hello and welcome
I am so sorry that you find your self here, but very glad that you have found us. We are a supportive and caring family of cancer suvivors and caregivers who will all try and help where we can. You will find a wealth of information here and at first may seem a little overwhelmed, so may I offer a few words of advice.
Each time you are looking for information or want an answer to something, do start a new conversation with a new thread and don't just post a reply to someone elses thread.
This way, it will be noticed by more of us and we will try and help you.
The advice Paul has given you is very sound.
Write down all your questions so that you can ask your surgeon and oncologists and not forget what you wanted to ask.
My husband had Ardenocarcinoma and his pain shifted all the time too.
As too the smoking, Rob's surgeon does not believe that his was caused by smoking, but never-the-less, Rob did just quit after 40 years of smoking, to give himself a better chance of survival.
You will need to keep yourself as fit as you can for the coming months. Walk a lot, eat what good foods that you are able and try not to worry too much. A member of our family used to say that worry was like a rocking chair. It doesn't get you anywhere. He's right.
You will almost certainly have chemotheraphy. Rob was fine with his, which was pretty standard treatment for EC. He wasn't sick as he was prescribed sickness meds and he got through it well and without too many problems.
The op, if you have on is a bit scary, but their are lots of people here who have had it and are still here helping others. My husband is included.
The most important thing is too get yourself to a team of EC professionals with an enormous amount of experience. Paul will guide you here i'm sure.
I wish you all the luck in the world and again welcome.
Prayers and hugs
Marci

sideways said:

Hang in there!
Howdy! I am 3 weeks post op from my minimaly invasive esophagectomy. Like Paul mentioned, look at the University of Pittsburgh Med Center, specificaly Dr. Luketich. In my research him, and Dr. Ninh Nyguyen in SoCal, come up quite a bit under the category of "Success". I had my surgery with Dr. Nyguyen.

Do you know which type of esophogeal cancer you have? There are 2, Squamous, which is in the upper Esophogus and caused by drinking and smoking. The second is in the lower half of the esophogus and is called adenocarcinoma. This is caused primarily by prolonged heartburn, which turns to Barretts Esophogus, then cancer.

Adenocarcinoma is what I have, even though I smoked heavy for 30 years and drink. As far as quitting smoking, I quit in January off this year, I used the electronic cigs. It took me about 3 days to make the transition to where I was OK with the e-cigs and being without the reg cigs. Once on the e-cigs, taper back the size off the nicotine cartridges. I went 1 week with "Full" cartridges, then went to "Half dose" cartridges for 1 week, then laid the ecig down. Yes.... it's hard, but if you're ready... you can do it.

I'll tell ya, I was SO happy I didn't have to worry about nicotine while spending 11 days in the hospital. Keep us up too speed my friend, and feel free to PM me anytime for anything! Also.... too add to what Paul mentioned, we bought a lil digital tape recorder too record all our Doctor visits (our memories suck! LOL )


Greg