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New and Just got the news (BAD)

JS50_IND
Posts: 3
Joined: Sep 2012

Newbie here:
I just got the bad news that I have EC on 9-14-12.
Had Upper GI with bi-opsy 9-11-12
CT scan 9-13-12
I am scheduled for ultra sound endoscopy for 9-25-12
My Gastroenterologist did not know what stage I am at yet.

I am 50 years young and this news sucks!
I am a smoker which I am sure is the cause. Acohol free since 1989.
I work as a Land Survey Crew Chief and I am somewhat fit as my work can be strenuous with lots of walking in the great outdoors. I am the type that only went to doctor only when I got the flue or bad cold which was not very often.

So here I am learning everything I can on EC and what I have ahead of me.
All the success stories I have read here and other fourms are very ecourging and I am hoping for the best.
I am single with no kids and only have my 76 year old mother as a care giver and she has all kinds of her own medical problems and won’t be able to do much. I have been her care giver through several issues in past years.
My employer so far has been very supportive. I do have insurance questions and concerns and need someone to help me with understanding that. I need guidance and encouragement on what I need to prepare myself for mentaly and emotionaly.

I am actually going back to work this week and plan on working till I can't anylonger.

So as of now the jury is out on what stage i am at. My swallowing is ok off an on I just got to go slow when eating. The heart burn / chest pains have been getting more anoying and moving from one place to another. Other than the above I feel great!

How do you quit smoking during this high stress emotional time? I have quit 10 times since I got the news.

I will be back with updates.
I am in Central Indiana, so anyone with leads on a good medical team please let me know.
Thanks

DanTheMan
Posts: 24
Joined: Feb 2012

Hey js,
So sorry to hear of your situation and im sure you have come to the right place to help answer some of your questions.Im 37 from australia and 2 years post treatment for stage 4 oesophageal cancer.Even though im a world away i can totally understand what your going through.My brain couldnt shut down for weeks and i had a million thoughts going through my head all at once.Being diagnosed with it has plenty of unknowns and i guess the best thing you can try to do is just take it as it comes.Knowing what stage the disease is at and how the doctors will approach treatment of it etc will give you a better direction and help you come to terms with it im sure.I gave up smokes 50 million times,beer about 100 million times..you just got to do whatever makes you feel comfortable i think.Probably working is the best thing to do as it will take your mind off it and keep you active....i wish you all the best in your results of your biopsy ;)
dantheman

BMGky
Posts: 666
Joined: May 2010

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

BMGky
Posts: 666
Joined: May 2010

I can type better than this but I sure hit the wrong keys on this thing.

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Typing on an iPad is bad enough, but it tries to guess words and often strange words pop up. Hate that! Texting is equally bad. No worries!

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

At this point reading and gathering as much information as possible is what you can do. Push for quicker doc appts, and take any and all meds as prescribed. You will likely be starting some chemo and rads too. Good that you are going to keep working. Keep up the good fight. I pray for strength for you and your mom as you travel this road.

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

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!

GerryS's picture
GerryS
Posts: 240
Joined: Aug 2010

Keep positive until you have all the info. My wife always said , we will not worry until there is something to worry about!

Thanks for stepping up, Paul.

Gerry

BMGky
Posts: 666
Joined: May 2010

As always, you add an informative, calming voice. I was hoping you would post BMGky

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Thanks Paul, For stepping up to bat and posting such great and needed info.
I want to point out also the importance of keeping records and copys of all test results. Like Paul said, take someone or two with you for appointments and let them take notes.
As an almost five year survivor, I know the emotional rollercoaster you are own. One of the most important things you must do, is find a good thoracic surgeon that has plenty of experience in this type of surgery.
Don't let the internet scare you. It makes EC sound like there's no hope, but no matter how bad it is, there is hope. WE are all individuals and respond to treatment differently.
The two types of EC are caused by different things. Adeocarcinoma is caused from acid reflux, not smoking, where squamous cell can be caused from smoking (but not always).
The testing and waiting is very hard. Try to rush this as much as possible. Once staging and treatment starts, you will need answers to a lot more questions. We're all here to help as much as posible. Please let us know your progress.

Sandra

mardigras's picture
mardigras
Posts: 197
Joined: Sep 2011

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

oriontj
Posts: 390
Joined: Jul 2009

My husband has squamous ec diagnosed 7/20/09. His treatment was at the University of Chicago. He did not have the surgery, chemo and radiation. Was cancer free for a year, it came back in the same spot, very tiny, more chemo.

You need to know the type and stage.
You need to be at a major university one that offers clincial trials and sees this cancer. A local oncologist will not be your best choice.

IUPUIin Indianapolis should be checked. How far from Chicago are you? Cleveland clinic is also a good choice. University of Michigan always good.

Paul gave you excellent information.

So far my husband has been around for three years. At first glance I didn't think it was possible. Always remember you are a statisic of one. Information on the internet is often outdated. There are so many new drugs out there.

One day at a time.

jan

sideways's picture
sideways
Posts: 21
Joined: Aug 2012

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

jaycc
Posts: 131
Joined: Jul 2012

Sorry you are here, but this is a good forum with alot of caring people. You are not alone.
Not to be too redundant, as Paul mentioned make a list of questions. If something doesn't make sense to you, keep asking until it does.
There is a list 100 questions on EC (gang does someone have that?), but here is a link of EC questions for doctors by each area, just to help your thoughts. If they slow down at all with testing, keep them moving.

http://www.ecaware.org/patients/questions-for-your-doctor/

Glad to hear you are going to work. As you mentioned stay Positive.
Thoughts and some prayers coming to you from the east coast.

rose20's picture
rose20
Posts: 282
Joined: Jan 2011

Where are you from in Indiana? I am in Indiana also.

NLMCEM
Posts: 52
Joined: Aug 2010

sent you some info in the csn email link you will see on the left I hope you get to read.
placed a link to a possible Hospital and doctor for you.

NLMCEM
Posts: 52
Joined: Aug 2010

check with University of Chicago

Sally.L
Posts: 38
Joined: May 2012

Good luck with your scan tomorrow. I hope your news is as good as news can be under the circumstances. Should you be a surgical candidate, please don’t rule out your own backyard (so to speak). I live in Northern Indiana and my husband was diagnosed with stage 3 squamous cell carcinoma in May. He did the pre-op radiation and chemotherapy locally but decided on the IU Simon Cancer Center in Indianapolis for his surgery on August 31st. He had an MIE performed by Dr Thomas Birdas, (who also works for the VA for anyone going that route) he and the entire staff are incredible. He was in ICU for one night, then transferred to SPCU for the remainder of his 9 day stay. I can’t say enough about the compassionate staff at the hospital, they are absolutely top notch.

He did fail the first and second swallow tests, but we just learned this past Friday, after an endoscopy, that there is not a leak. There is some ulcerated tissue in the remnant esophagus at resection site that was giving the appearance of a leak, but no actual leak.

Paul is currently disease free. He had about two days where he needed pain meds while in the hospital, but has otherwise been pain free. The hardest part now is keeping him from being bored to death. He wants to get back to work ASAP.

Again, I just want to wish you the best with the scan results. Here’s hoping for early detection.

Sally

5002dblane
Posts: 8
Joined: Feb 2012

My husband Tim has Barrett's Esophagus since the 80's and was just diagnosed with Stage 2 EC in 2/3/12 during his endoscopy. Had Ivor Lewis at the IU Simon Cancer Center in 2/23/12 under Dr Ken Kesler's care. IUSCC was very good for us. It has been 7 mos. Tim did not have pre-op chemo and post op chemo as he was still very weak on the 3rd month when adjuvant chemo was to commenced.His first CT scan last month came back all clear and every 3 mo thereafter for the first year. He stayed in the hospital for 11 days, was back to work part time in 2 mos. His first CT scan last month came back all clear. On his 7 month , Tim says that he feels abt 80%. He lost a total of 30 lbs and is having a hard time gaining as he can only eat so much. His endurance and strength is slowly picking back up. It was a long journey and everyday is a gift of life. CSN is indeed a good support system. Family and friend too. And thank God for his mercy. You are not alone. Be strong.

jim2011's picture
jim2011
Posts: 116
Joined: Sep 2011

I used chantix but I am sure many methods work. I just felt that if I was willing to fight for my life and expected to be taken seriously then I shouldn't smoke. I just lost interest in smoking once the chemo started. I agree that a big group of oncologists and an experianced surgeon is the way to go. I am 17 months out of surgery and feeling pretty good. It was hard but worth it.
I sleep with a wedge and never eat within 3 hours of bedtime. Small but healthy meals.
I wish you the best!!!!
Jim

Tux's picture
Tux
Posts: 541
Joined: Aug 2009

I saw your post while cruising in this discussion group (I am actually a breast cancer survivor.)
I am in central Indiana myself & feel that I have received excellent care. I have great faith in
the IU Cancer Center in Indianapolis, though I was treated elsewhere for my particular situation. The doctors and nurses who treated me were the best! I wish you the best of luck!

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