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zeaks
Posts: 2
Joined: Jan 2013

Hello im a 36 year old male with a beautiful wife and four children. About 7 days ago I was diagnosed with Esophageal cancer and they believe it might be stage 4. I had a pet scan today and will get results from doctors early next week. I plan on fighting this until my very last breath. This is a very scary time for me and my family. I have not told kids yet that i have cancer, not sure how to go about it. If anyone could please give me advice on fighting this I would be very much appreciative.

paul61's picture
paul61
Posts: 1121
Joined: Apr 2010

I remember like it was yesterday, the day they told me I had esophageal cancer. Then, there was the wait through all the testing to determine my final staging before a treatment plan was defined. It seemed to take forever.  My wife and I went to appointment after appointment and it seemed as if we were in shock. They all used lots of words we did not understand and our friends did not know what to say to help us. The first few weeks after diagnosis can be very frightening.

 Here are some suggestions I would make based on my experience as a survivor:

 1. Ignore the statistics you read on the internet, they are dated and they do not consider your age. The “typical” EC patient is between 60 and 70 years old.

2. Take things one day at a time. The testing and definition of a treatment plan can take some time. It is important the staging be done correctly to define a successful treatment plan.

3. Seek a second opinion at a major NCI certified cancer treatment center that specializes in treating esophageal cancer. If you tell us where you are located we can suggest a center close to you.

4. Always take someone with you to all appointments and ask them to take notes for you. You will be preoccupied with your own thoughts about what is happening to you and will have difficulty remembering all the discussion. It is helpful to have a second set of ears and notes to review after the appointment.

5. Ask for the written results of all of your tests and keep a notebook of your appointment notes and test results. This can save time and insure that all the information is quickly available to other medical professionals you may consult.

6. Find an oncologist that shares your goals about treatment and your resolve about fighting this disease. If you start getting the “statistical doom and gloom” line; move on, to someone who shares your objectives.

7. Be open to complimentary and supportive approaches to fighting cancer that may augment traditional medical approaches as long as your oncologist is in agreement that they do not interfere with your medical treatment. Diet and exercise are important to maintaining your weight and stamina.

Most of all; be thankful you have a loving family to support you during this challenge, and do your best to maintain a positive attitude.

 I am an EC survivor and after surgery and chemotherapy I am back to enjoying life with the people I love. I won’t say it was an easy journey but you will find survivors here that can support you along your journey.

 If you answer some questions for us we can make better suggestions:

 1. Where are you located and where are you receiving treatment?

2. What were the symptoms that lead you to get your diagnosis?

3. Do you have other health issues that may impact your treatment?

4. On what medical evidence do they “think you are Stage IV”?

5. What diagnostic tests have you had so far?

 

We are here to support you,

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

 

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Sorry you have had to find us, but glad you did. You will find many people here from all over the world that have had similar scary times.

You are doing the right thing by having it staged property. Endoscopice ultrasound will also help with the staging. It will let you know how many layers of the esophagus are involved and they can do biopsies during that procedure of lymph nodes and nearby organs. Next step would be to get a second opinion and decide where you want treatment.  Finding a doctor that has seen and treated EC is very important… local, regionally or further. 

Telling your children is hard, especially when everything is so new and you don't know what comes next. There are some web sites that give information on how to tell family members.  I’m sure you and google have been very close in the last seven days.  Remember some of what you find on the web is old data.  There are long term success stories and short term victories.  We celebrate them all here and provide an safe place to be angry too.

Welcome,

Lee Ann

 

 

preacherchad's picture
preacherchad
Posts: 62
Joined: Dec 2010

Hello, my name is Chad. I agree that you need to follow Paul's advice.  I was 40 when I was dx in 2010. I havve 3 children and yes, that just adds another concern to worry about.

Please let us know what results you get from dr the first part of the week. We will be praying for you.

 

I will check in with you in the next day or two. You are welcome to pm me or send an email if you want to talk or ask some questions. j.chadcharles@gmail.com

 

God Bless you

chad

jaycc
Posts: 131
Joined: Jul 2012

Similar to you we never heard the word Esphogeal Cancer before , and the first few weeks are scarely and overwhelming. Paul has a good list of advice.

If you are in the PA area, I can help you get in touch with others local to you, and discussions on centers.

there are wonderful people on this disvussion board, and there are more survivors on Facebook.

Here's a link for some questions to ask your doctor:

http://www.ecaware.org/patients/prepare/

There is an addtiional list of questions but don't want to overwhelm you.

Ask,ask, ask questions .

 

Lee Christensen
Posts: 40
Joined: Nov 2010

If your in the Minesota area may I suggest Mayo clinic in Rochester. Thats where I had my MIE done in Dec. 10.
As far as telling your family members, let this all sink in and make sure you understand it, and the game plan that you and your doctors come up with. And maybe then you can answer there questions as I'm sure they'll have.

Lee Christensen
Posts: 40
Joined: Nov 2010

If your in the Minesota area may I suggest Mayo clinic in Rochester. Thats where I had my MIE done in Dec. 10.
As far as telling your family members, let this all sink in and make sure you understand it, and the game plan that you and your doctors come up with. And maybe then you can answer there questions as I'm sure they'll have.

zeaks
Posts: 2
Joined: Jan 2013

 Wow Im so glad to have found this board!!!! This is the most scared I have ever been in my life. I have been going crazy with thoughts running through my head, and not having any one to talk to. I do not know anyone personaly that has gone through cancer.

 I have had the worst five months! I use to live in Missoula Montana running a hardwood flooring company until the economy went south and forced me to move my family to Newport Oregon to take another job. That part was actualy pretty lucky because now I have health insurance.

 About two months ago my brother died from a tumor on his brain.He had a seizure while he was sleeping and it took his life, and now im diagnosed with esophigal cancer. One of the worst parts about this is having to call my parents and telling them I have cancer and the doctor said I probably have 10 months to live. They were devastated especilaly after loosing one child so soon.

 So now about my cancer, Around christmas time I was having really bad abdominal pains Felt like a burning sensation around my belly button area and wraped all around my lower section.Every time I would take some ibprofen the pain would go away. After dealing with this for a week or two I figured I should go get an ex ray.

 Went to a walk in clinic sence im new to the area and have not found a family doctor yet, and they did some blood work and everything looked fine. So they just perscribed some medicine to keep my stomach acid down. Medicine did not seem to help at all so I went back and asked if they could do a exray or something. They do not do exrays their so they sent me next door to the er. The Er did my bloodwork again and said everything looks fine they also said my heart is in really good shape. So now they wanted me to do a follow up with a family doctor they recomended.

 The family doctor was relly great and started me on a list of doctors to do random test. The first thing i did was go back to the er and had a cat scan and some ex rays of my chest. This was on a friday and I had to wait until monday to hear back from my doctor. When he called me monday afternoon he said That they spoted a lump in my stomach and their was a chance it could be cancer. He also said it could be an ulser but I had some swollen limp nodes in my abdominal area.

 The next place he sent me was to a doctor to do a ultra sound of my testicals, and that doctor said everything looked normal.

 After that I was sent a gastrioligist for colonoscipy and to have scope sent down my throat. The only thing he found was the lump in my stomach where the esophagus meets the stomach. He said it looked like an ulser that was heeling. So he took a sample and sent it off for biopsy. He called me a few days later and said he had bad news that it was cancer. My poor wife just lost it and broke down crying. He really couldnt answer any questions and sent me to the cancer doctor.

 Cancer doctor cant really rember her title but suposively deals with this stuff. She was the most discouraging person I have talked to through this whole ordeal. She pretty much told my wife and I to just give up and i had 10 to 11 months to live. My wife really lost it then and I felt so defeated. She says she thinks its stage 4 because I have swollen limp nodes in my abdominal area and one on the outside of my stomach. She sent me to get a pet scan and I should find out about results on that today.

 Sence friday i have been talking to the cancer of america in phoenix and they were shocked by how this doctor handled this, and they are checking on my insurance and will be sending me a plain ticket to go see them for further treatment.

 So nowmy biggest deal is telling my four children whats going on and I might be flying out wednesday to see some doctors. I have been up all night long because I couldnt sleep so sorry for all my misspelled words and grammar.

Joan C's picture
Joan C
Posts: 1
Joined: Jan 2013

Zeaks, don't every give up.Leave no stone unturned in finding what is the right course for your treatment.

 

I have stopped in to this site a few times in the past months, but this is my first input. My husband Steve was diagnosed with Stage 4 EC on his 60th birthday back in March 2012. We also went through the shock, not understanding why all the nurses, doctors, etc. kept saying "we're so sorry". Being in the Boston area, we are blessed with several great hospitals. As our family had past great experience with Dana Farber, that is where we ended up for his chemo.

 

And a big however....we opted to research on our own and came up with the following complementary therapies that we believe has kept Steve alive:

 

A great naturopath with oncology background...tons of very expensive supplements (120-140 pills per day)

An almost all veggie diet (no white sugars or white flour, etc.)

An exercise plan

Lymphatic and cranial sacrel massage

Reiki

EFT (a type of accupressure that you do for yourself)

Hypnosis

Lots of prayers and energy from all that we meet

And what we feel is one of the biggest contributions to his health: Less Stress! Meditation, etc. is key.

 

Steve was told that he would most likely not last a year. From the first CT scan at 8 weeks of chemo, his tumors shrank. In opting for a gene testing (we had to push to get it) in the summer, they required a new biopsy. The biopsy showed NO cancer cells in the esophagus. The tumor had become an "ulcer". The lesions in the liver have shrunk to 3mm in size at this time. No more in the lymph nodes.

 

Steve is looking and feeling great. However, we are both flustered with DFCI as the oncologist still refuses to even note all the other things that Steve is doing to beat this, even though she has stated that she has literally never had anyone respond as well as he has.

 

I do have a question for anyone who may know: Steve had the Greek test done a few weeks ago and had the results sent to a new doctor in CT, who actually believes in the test. Our Boston dr does not believe in it.  Has anyone else had this test? Did it give results that you used and that worked?

 

Thanks to all of you. My heart is filled with the love of life I have found in this new surreal world of EC.

 

Living in the Moment,

Joan C

 

Rickyr1219's picture
Rickyr1219
Posts: 54
Joined: Jul 2012

If a Doctor is telling you 10 months then find another doctor.  First,  I believe that God is the only one that knows when we will leave this earth.  Second,  there are Stage IV survivors on this site and other places that continue the fight and are doing pretty good at it.  I was diagnosed in May 2012 as Stage III and I started googling Stage III EC.  The google results scared me to death especially when I saw the statistics.  But then I found this site and saw so many survivors and statistics are just a number.  Who's to say you are not one of those survivors?  I beieve the key is to find a place that has spcialists for our type of cancer.  I'm fortunate in that I live in the Houston Area and one of the finest Cancer hospitals MD Anderson is here.

I sympathize with you telling your children and in your shoes I might wait until I knew more about my disease.  I was 56 when Diagnosed so have a few more years on you and my youngest was a daughter 22 that was in the Peace Corps in Mongolia.  Her mom was diagnosed about the same time I was with Ovarian Cancer.  She waited until one evening when our son was with her and she skyped my daughter in Mongolia and gave her the news.  Of course she wanted to come home and she did within a couple of weeks to care for her mom.  She did not find out about my cancer until after she got back home and by then we knew more about my treatment plan and cancer. 

It's almost February as I write this and me and my wife are still kicking.  We have good and bad days and rollercoaster emotions at times but we have kids, family, and a great support group that surrounds us with their love and prayers and for that we are very fortunate.

ooops,  maybe this was more like a nickels worth?  Keep your spirit up and I'm happy you found this site....

 

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

Hello Zeaks, I'm so sorry that you have found yourself here. I am my husband's caregiver and I know how difficult it is to keep fighting, but you are so young and you have your life ahead of you. Worth fighting for??? Hell yes!!

At the moment a post is on page two entitled 'esophagus cancer survivors'.Please have a look at it and it will help i'm sure. POSITIVE ATTITUDE!

Take all the good advice that you can. Keep yourself as healthy as possible with regular exercise  (we walked four miles a day as briskly as we could) and a really healthy eating plan. You don't say if you are losing weight, but if you are then the protein supplements in drink form are good.

When my husband began to really lose weight, we researched the best diet for him. At this time his tumor was 8.7 cms. Prior to Chemo we put him on a very high anti-oxidant diet of fresh tunos Indios in juice form. I guess cranberries might do the trick if you can't get tunos. We are living in Gran Canaria and are able to get these dark red cactus fruit and juice them. It was tricky, but worth it.  Also I pureed fresh mango and blitzed it with a half cup of quark and a desert spoon of linseed oil from the health food shop, for mid afternoon. The other things were just common sense. Leafy dark green veg. Lots of different colours in veg and fruit. By the time he got to his first chemo appointment, his tumor had shrunk to 5.3cms and he looked as fit as a flea. The chemo set him back quite a lot, but he came through it and he is 18 months down the road and still going strong.

Stay as well as you can and don't sweat the small stuff. Most of all get a new doctor who has a positive outlook and start believing you can beat this.

Hugs and prayers,

Marci x

Dad'sfight
Posts: 155
Joined: Feb 2013

Did your husband just have chemo? 

 

Justina

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