New to the board and new to cancer

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

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 .

jaycc said:

You are not alone

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 .

 

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 said:

Little about my self

 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.

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

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