Another newbie

Lynn Fla. said:

Hi Laura
I'm sorry about Larry's diagnosis. My husband also has EC and he was diagnosed 6 mos ago. I remember the day we found out and the horror and the tailspin you are speaking of. I'm new to this forum but there are a lot of people to help guide you along. Once you get the staging you can get a plan and the day to day walking through the steps of the plan set before you will help you to focus and feel like you are in the fight. Until then, keep doing your research. There are other forums with a wealth of information like this one. You can send me a message through my email if there is anything I can answer for you now.
Hugs to you and to Larry.

Lynn

Bermudagirl said:

Welcome!
Hi Laura,

I am sorry that you have found yourself here, but you have come to the right place. There are lots of us who have gone before you, and will be glad to help lead you and your husband along the path. First and foremost is getting the cancer staged, and then finding an oncology team that deals with EC cancer. You do not want a local oncology group. Friends may say that Dr. X is great, he got me through my breast, colon, whatever cancer, but for this disease you'll need the "big boys", doctors and surgeons and hospitals that see EC on a regular basis. We'll be glad to help you once you let us know where you live.

For now take a deep breath, continue reading and educating yourselves, and let us know how we can help.

Sandy

paul61 said:

Welcome to our group
Hello Laura,

Welcome to our little group. I know it is a place where you and Larry wish you never needed to find. I am sure at this point both of you are wondering what happened to your life and plans and if anything will ever be the same again. Well, things will definitely change as Larry goes through the testing required to classify what kind of esophageal cancer he has and where it is located in his body.

Since you said Larry was just diagnosed I assume he had an endoscopy and they found something of concern. I assume they did a biopsy and the results have come back that said the cells found were malignant.

The normal next steps from here are to schedule a PET scan or a CT scan to determine if the cancer has spread anywhere else in his body; and to schedule an endoscopic ultra sound to determine the depth the tumor has spread into the layers of Larry’s esophagus, and to determine if there is suspicion that the cancer cells may have spread to lymph nodes located close to the tumor. These tests will result in information used to “stage” Larry’s cancer. They should give you a T (number) N (number) and M (number). This information will give Larry’s medical team the information they need to stage the cancer and to define the appropriate treatment plan.

Here is some excellent high level information about esophageal cancer and the testing and staging process:

Click Here to find information about testing and staging of esophageal cancer

Next here are some suggestions as you make your way through the diagnosis and staging process:

1. Ignore the statistics you read on the internet. They are usually out of date and do not reflect the impact of new treatment methodologies.

2. Seek treatment at a nationally known NCI certified cancer treatment center that specializes in esophageal cancer. This is not to say that Larry can’t still receive the majority of his treatment close to home, but his treatment plan and surgery should be managed by a center that specializes in esophageal cancer.

3. Create a notebook of the questions you have and directions you have received to all of Larry’s doctor appointments. It is best if someone accompanies Larry to these appointments so two people hear what the doctor has to say and think of what questions to ask.

4. Always ask for a written copy of Larry’s entire test results and keep them in the notebook. Having that information readily at hand as you go to appointments can save a lot of time and avoid misunderstandings.


As an esophageal cancer survivor that has been through diagnosis, staging, surgery, and chemotherapy I can tell you that the treatments sound daunting but they are survivable and Larry can have quality life once he is done.


If you can answer some questions for us, we on the forum can provide you with better suggestions about next steps and where to go for the best treatment options. The questions would be:

1. What tests have been done to identify Larry’s cancer?
2. Did they say it was “Squamous cell carcinoma or Adenocarcinoma?
3. What symptoms was Larry having prior to diagnosis?
4. Where are you located?
5. Do you have insurance that is readily transferred between hospitals?
6. How old is Larry?
7. Does Larry have any other health issues that would interfere with treatment and surgery?

We are not trying to be nosey but we can make better suggestions if we know more about Larry.

You will find other survivors here who have had treatment and are now enjoying their life again after treatment. I know a diagnosis of cancer is frightening but getting information, having a plan, and moving forward takes a lot of the fear away.

We are here to help you as you go through the process


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!