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LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Wow, I have been reading and am amazed at all of the stories of courage. My husband Larry was just recently diagnosed and life seems to be in a tailspin. We don't know what stage yet and quite frankly, I am quite terrified.

Lynn Fla.
Posts: 1
Joined: Sep 2012

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

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Thank you so much for the welcome. I definitely look forward to a plan.

NLMCEM
Posts: 52
Joined: Aug 2010

welcome and please read and research so many things to learn as you travel this road. There is a wealth of information. Please check my about me page and others as many add what they have gone through, what they are going through now and other things. Best to you as you search any answers you are seeking. One thing I would like to share, go to a hospital that specializes in this, doctors that specialize in it and not just any where so your husband can get the best care possible.
you will also learn about help, places to stay if you need to travel from home etc.. feel free to message me here in the CSN Email link you will see to your left in the orange colored links.
EC Fighter Caregiver, Carolyn

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Thank you. As you will be able to see from my post today, we are fortunate to have a specialized center in our state. U of M has a "hotel" on their premises for family members. We stayed there when my adult son was injured. It was wonderful. It could be 2am and the nurse would call and I could run in my PJ's if needed. I will continue to research as well, never giving up!

Bermudagirl
Posts: 120
Joined: Jun 2012

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

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Thank you Sandy, I will accept nothing less than the "big boys".

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

Welcome Laura, Tell us a little more. What were his symptoms? Is he going to a cancer center. Does he have squamous cell or adiocarsonoma?
Of course you're terrified, the word cancer is a scary thing to hear. Remember one thing-It is not a death sentence. The stats are scary, but your husband is an individual. I had stage three adiocarcinoma and it's been almost five years and I am cancer free. It is a roller coaster ride and the whole family will be effected. Educate yourselves. Communicate with us and look for other sites as well. There are lots of people that want to help with lots of knowledge and info.. The doctors and cancer sites, often do not have life experience to help like we do.

When does Larry have testing to determine the staging. Please let us know,

Sandra

BMGky
Posts: 666
Joined: May 2010

Glad you found us. Sorry you had to find us.

Very important you let everyone know as soon as possible the type of EC, the stage, the cancer team you will be using. The sooner you know, the better as it helps everyone to give you the benefit of their experiences. This site is awesome. There are other informative and helpful sites as well.

We look forward to hearing from you and hopefully being of help.

BMGky
Caregiver. Husband. Stage 2A.N0M0. Chemo radiation. Ivor Lewis April 2010. Last scan. No evidence of disease.

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Thank you and am sorry to have met all of you in this place as well. However am so grateful. I have compiled a binder for all of Larry's medical records, appts, etc. I call it Larry's Road to Recovery. I will never give up

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

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!

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Hi Paul, I posted this morning regarding "our story", and you will have many answers to your questions there. Thank you so much for your response. I see you are in Grand Blanc, MI. Are you going to U of M ? I have not had time to read all of your postings. He does have invasive adenocarcinoma. His symptoms were years of reflux, which progressed to difficulty swallowing and hoarse voice. Yes our insurance has a few bleeps in it as U of M is out of our network. U of M and our local hospital are guiding us through this process. Larry will be 65 in May which brings Medicare in. Everyone's first response was to have Larry retire, however there are two problems with that. #1 we own our own small business, we provide our group insurance which is pretty good insurance, without our business we have no coverage. #2 Our business is Larry's life and dream and it keeps his mind busy. He feels that he supports 11 families and he would rather not have treatment than to let them down. I can't take that away from him. He does not have any other medical problems besides high blood pressure which has been controlled with meds.

NLMCEM
Posts: 52
Joined: Aug 2010

I try to send csn email and hope I am doing it correctly.
I know you are busy with all you are dealing with.
Just wanted to be sure my csn emails are getting out.

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

Hi Laura:

I remember well the fright and tears that first weekend after my diagnosis, when my wife and I had so little information and were scared to death. It will help you and Larry a lot when you get more information from the EUS, CT scan, etc., after which the doctors will give you a plan and you’ll realize that the situation is not entirely out of control.

I think the most important thing for you right now, as you’re researching and learning about this disease (I’d never heard of EC before my diagnosis) is to ignore any statistics you read online. There are so many variables for each patient, so please remember that each of us is a statistic of 1! Age, general health, stage, prior medical history…they all play into our diagnosis and prognosis, and you don’t have all of that information yet. So hang in there and try not to worry too much. Today marks 1 year since my surgery, and my life has change but is good. Sadly, not everyone can say that, but EC is not necessarily as terrible as you might think right now.

So try to have a good weekend, hold each other a lot, and wait for the medical information you need. And by all means please keep us informed. There’s an unbelievable wealth of experience, compassion and information here that will almost certainly help you and Larry on your journey.

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

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

Welcome to the site, as like all others, I hate that you have found this site due to current circumstances.

You are now part of a weird, yet loving family. You will find many here posting all sorts of needed information. Be sure to copy and save soemthing you find helpful, when you need it immediately, it is a pain to search this site for the right post, in a hurry.

We are praying for you and Larry, may God watch over you and guide your every step.

Chad Charles
South Carolina
DX 11/11/2010
T2N3M0
Ivor Lewis 03/28/2011
Pre Op Chemo and Rads
Post Op Chemo
Last Scan 4/2012 NED

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