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2 good responses--But how do I---?

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

In the Christmas letters I sent out this year, I included a paragraph about EC, getting tested and a link to the ECAN site. We've already had a note from one friend saying he was having a physical this month and will talk to his doc about it and thanked us. Then today, we had an email from an old friend who had a colonoscopy scheduled last week and, after our letter, asked to have an endoscopy done also. He hasn't gotten results yet. But, yay for them!

Now, the MOST frustrating thing to me: our kids--son and daughter in their 40's. I've sent them the ECAN link, told them of all the people their ages who are being affected and stories from here, begged, talked about their responsibilities to their families, etc. They are really smart, responsible people and greatly supportive of us. But, to them, this falls in the category of unnecessary medical testing. Any suggestions or other supporting evidence I can use?

Angie

dodger21's picture
dodger21
Posts: 83
Joined: May 2011

Angie,
it's not unnecessary testing. If they get tested young they might be found to have barretts, a pre cursor to EC. Then they can do something to prevent themselves ever getting adenocarcinoma. I have no idea how long someone can have barretts for before it turns malignant. Maybe a way of getting thru to someone young is young people normally do something if they have cartilage problems in their knee cause they don't want it to turn into something requiring a knee reconstruction. Tell them to think about the esophagus the same way and test for barretts like they would for knee cartilage problems.
Danielle

T-Bird
Posts: 25
Joined: Aug 2011

This is just FYI info, but you will get the drift.

We have a movement/non-profit organization out in Vancouver, BC by the name of F$ck Cancer who basically are trying to educate Generation Y, along with their parents of early detections of cancers.

"About
It’s not just a T-shirt, it’s a movement

F&ck Cancer saves lives by teaching people how to look for cancer, instead of just find it.
We change the way society perceives cancer by challenging the stigma and the victim mentality. We shift the balance of power from the cancer to the patient, and turn “patients” into “cancer F&ckers”, fighters, and survivors.

We change the way cancer is treated by promoting early detection. While we may not see a “cure” for cancer in our lifetimes, early detection is the surest way to prevent a lot of suffering and save a lot of lives. We can only do this through education, which is why raising awareness is just as important as raising funds."

They have a facebook page and their website is www.letsfcancer.com if you are interested in looking at their sites.

For me personally, I suffered for many years with severe GERD and had I known (awareness & education) and got tested years ago, I believe it would have been detected early with a better, or at least some chance of surival - too late for me, but not for others, provided they have the education and are aware as you are obviously trying so hard to do. For me, an endoscopy SHOULD have been as routine as my yearly pap or mammogram testing.

I wish you the best of luck and understand how very frustrating this must be for you (been there), being these are your children.

Teresa

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

You can tell them about my case, if you want. Yes, I was older than them at 55, but when I went in for my first colonoscopy my GI doc (who knew I had GERD symptoms from time to time) figured as long as he had me on the table unbeknownst to me he might as well do an endoscopy, as well. And he found Barretts, which led to tri-annual “routine surveillance” endoscopies. It was during one of those routine endoscopies that he found a very early Stage 1 distal adenocarcinoma in my esophagus. At my first meeting with my surgeon, after EUS, CT and some other diagnostic procedures, the surgeon was startled at how early stage I was, and said to tell my GI doc that he had probably saved my life.

I didn’t need any chemo or rads – before or after – I had an MIE a few weeks later, and as of right now I appear to be cancer-free. Had I not had the routine surveillance the cancer would have been growing in my esophagus anyway, the only difference is that I wouldn’t have know about it until the beast wouldn’t let me swallow, at which point I would likely have been terminal.

So does that sound like unnecessary medical testing? Not to me, it doesn’t. The endoscopy is easy, it’s not expensive, and it’s certainly less expensive to discover some Barretts or a Stage 1 lesion and treat it, than to have to treat a later stage or even terminal stage tumor with chemo, rads, etc. So I look at it as short money and a life saver. I’ve even been encouraging friends who haven’t ever had an endoscopy to lie to their GI doc, if necessary, and say they have GERD so he’ll perform an endoscopy. DON’T WAIT – get ‘er done!

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

nickgunboat's picture
nickgunboat
Posts: 37
Joined: Dec 2009

Bob has a great story and I couldn't have said it any better. All I would like to add is that EC happened to me when I was 42. I think that puts me in your kid’s age group. If I had known more about EC (symptoms etc.) I would've insisted on a routine endoscopy. I would have paid out of pocket if I had to. I suffered with terrible acid reflux in my twenties and early thirties. Then it went away. That’s the tricky part. I assumed because I was taking better care of myself that I had fixed the problem. Turns out the acid had done so much damage that I didn't feel the burning any more. It was still happening and I developed Barrett’s which eventually turned into full on stage 3 EC. I consider myself extremely lucky that they caught it when they did. Not out of the woods completely but it's looking good. Please share our stories with your kids. It would be much better to catch a stage 1a like Bob or even a 3 like me than to be too late. What the heck?! You lie down, they put you to sleep (a nice little nap), run the camera through your stuff and you're done. Worth every minute and every penny if you ask me. Good luck!

Kirk
T3N2M0
Dx 03.09
6 wks. chemo/rad
Esophagectomy with Gastric pull-up 07.09
Dr Tom DeMeester/USC
NED

ChaadMN's picture
ChaadMN
Posts: 33
Joined: Sep 2011

I was diagnosed with EC at age 39. If it wasn't for a routine Endoscopy my cancer would not have been caught at Stage II. I can see how your children would think that it is another unnecessary medical test, but if they have ANY symptoms of EC at all, it becomes a necessary medical test.

Wpturner05
Posts: 120
Joined: Aug 2011

Angie,
Because of Kevin's age at diagnosis - 36!! - we were told by GI oncology thought leaders at Sloan Kettering, Mayo AND MD Anderson that our son - currently age 8 - should start being screened in his mid to late teens!!!! Yes, honestly. Becasue there is enough unknown about EC, treating, origin, etc - and the fact that it has such devastating effects - we were highly encouraged to not leave this undone for our son.

Scary, but true.

Sincerely,
Whitney

PMT
Posts: 15
Joined: Jan 2012

my sister Teresa was diagnosed at age 50. She had symptoms a long time before she went to her MD but attributed them to her previous GI surgery. The symptoms are so vague they are easily overlooked. I hope your children listen to you.
Paula

Rick0311
Posts: 38
Joined: Jan 2012

Angie
I was diagnosed with EC at age 55. Some of the people I work with are a couple years older than I am and were getting colonoscopies as a routine check. I had never had one and the guys kept after me telling me that it wasn’t that bad and that it was better to be safe than sorry. So I finally gave in and called to schedule a colonoscopy. Afterwards when the Doc discussed the results, which were good, nothing found there, he asked how long I had been on prescription Prevacid. I told him that it had been 7 or 8 years. He asked if I used tums or Rolaids , which I did. He then asked if I had any trouble swallowing, which I didn’t. I didn’t really have any of the classic symptoms. The Doc scratched his head and told me that he wanted to do an endoscopy and check the other end of things. I told him I wanted to talk to my wife and our family Doc. I talked with everyone and had pretty well decided not to have the endoscopy. A few days later the GI Doc’s office called and the nurse told me the Doctor really wanted to schedule the endoscopy. I told her I didn’t think so and that the Doctor was just looking for money. About a week later the nurse at the GI Doc’s office called again. So, I had a talk with my family Doc and he told me, you know, you have insurance and they put you out so you don’t know anything and well it couldn’t hurt. So I relented and set the appointment for a Monday, on Wednesday the office called and asked if my wife & I could come in and talk to the Doctor. I asked when and the nurse said today! I knew right then it wasn’t going to be good. Needless to say I am really glad that the GI Doc was persistent and got me in. We caught it early enough to beat it. I was staged at 2B. After chemo, radiation and surgery, I am glad to say I am 4 months cancer free. I hope and pray your children get the endoscopies and that absolutely nothing is found. Better to know and be informed than to be in the dark.

Richard (Rick) Watson
Neoga, Illinois

DX – 0411
EC – T2N2M0
MIE – 083111
Barnes Hospital, St Louis
Dr Brian Meyer
NED

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

My husband was 49 when diagnosed Stage 1. He had been having scopes every 2 years for the previous 11 years due to them finding Barretts on his first scope. There are less invasive surgeries that can be done if Barretts is found. Today, you don't have to wait till it turns cancerous for a fix. Look into the TIF procedure. This can be stopped before it turns to cancer.

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