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Alternative Esophageal Cancer Sites

BMGky
Posts: 666
Joined: May 2010

Hi, friends.

I guess posting about alternative sites for information is not within the purview of acceptable postings.

It is even possible that those who advocate such postings are no longer permitted to post.

As we are all family here, there is nothing worse than a family disagreement.

This site is invaluable. The other sites are likewise.

Our goal here is to help as many as possible to be EC survivors. All information is important.

Any suggestions on how to get the word out about other sites?

www.esophagealcancerfighters.com is working to provide information that cannot be located here. Also, ECAN is great to help. There is an open Esophageal Cancer Board on several social networking sites.

Some sites are private; however, links, I believe, to private sites and others can be found at esophagealcancerfighters.com

Let's hope we can get information to those who come to this site seeking help. If it can't be found here, surely, it is permissible to suggest other sites.

BMGky

NLMCEM
Posts: 52
Joined: Aug 2010

I just tried to add a link for another site and its under review but after reading your post I am guessing it will not post. I was trying to send all to this place http://www.ecan.org/site/PageServer?pagename=Home
I learned about from my husbands doctor who is trying to get more research and funds for research for Esophageal cancer

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

This site is active. Please join. Also, www.4vitality.org Share your stories and meet people who are fighting this battle, too!

FlorenceNightin...
Posts: 9
Joined: Oct 2012

Dear “BMGky & Amjosmom”

Thank you for mentioning other forums where patients can discuss Esophageal Cancer. After reading your posts, I went there. Glad to know the EsophagealCancerFighters.Com site is active. I see that both “William W. Marshall” and “Bailey1459” (Sherri) are posting there as well as the "Vitality" site. I have learned so much from both of them during the past year. Actually, I have saved several of their postings from this site, for my own file. They certainly were so helpful to me when I sought help for my own relative. I will begin reading there as well.

Since all the information posted here is public and voluntary, one can’t imagine that it would be a violation to share helpful information with patients suffering with Esophageal Cancer. After all, this and all other sites are for the express purpose of sharing personal stories, whether they be sad or happy ones, about how the patients fared in their battle with this most often deadly Esophageal Cancer.

Sincere thanks,
“Flo”

goty2001
Posts: 71
Joined: Jul 2012

I hope nobody gets kicked off from here for mentioning other sites. surely not. speaking of other sites - seems to be a lot of discussion on acor.org ... but I think I'll have more luck self-curing my stage IV than I will posting a reply there. (would love to know if anybody has any tips in this regard)

paul61's picture
paul61
Posts: 1104
Joined: Apr 2010

If you are reading a post on the site itself, look to the right of the box that contains the message you are reading and you will see the word "reply" in blue. Click on that word and it will open a page for you to enter your reply message.

If you want to post a new message, look farther to the right under "Options" and you will see "post new message" click on that and it will open a page for you to post a new message topic.

Best Regards,

Paul Adams
McCormick, South Carolina

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!

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

I just lurk at ACOR. There seems to be some occassional info there, but I go to ECF, FB, CSN and I do LOTS of research for my forum 4Vitality. Goty, I'd love to get your story on 4V. If you're interested, please PM me. Thanks.

jaycc
Posts: 130
Joined: Jul 2012

EC cancer fighters.com is showing a list of sites.
Also Ecaware, (non-profit, goal keeping people in tough) also posts a list of contacts with emails. and 2500 members in Facebook for discussion.
Acor.org has an active discussion board.

I greatly hope in the small world of EC, we can put the politics of websites aside, and focus on getting people in tough with people.

With 17,00 diagonsised, and 15,000 passing away, we have to stay together. Newbies are growing and survivors are so precious.

Keep up all the good work here, it is so important, and it is one of the first discussion boards that comes up when your google EC.

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Jaycc,

You said "With 17,00 diagonsised, and 15,000 passing away" - are these numbers possibly right? I know the odds with EC are bad, but this bad? WOW!

Blessing to all of you in the fight. I hope you have the fortune and medical care necessary to bring you to number in the survivors.

Knowledge is our power against EC. Learn from those before you.

Terry
PROUD wife to Nick, age 49
lost EC battle, June 19, 2012

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Oops....

tcaba's picture
tcaba
Posts: 41
Joined: Nov 2012

Unfortunately, those numbers are somewhat correct in that they come from the ACS but they ARE a broad and somewhat misleading definition.

Stage 5-Year Relative Survival Rate
Localized 37% In the esophagus
Regional 18% Spread to lymph nodes
Distant 3% Spread to lymph nodes and other organs

www. seer.cancer.gov has detailed statistics, enough that they can be used as a sleep aid!

BUT

You have to be careful how you read EVERYTHING on the web.

When I was diagnosed in 2010 the first thing I did was research and I mean it was a SCARY AS HELL. All the info is overwhelming and mind numbing and It can suck you into a hole that can be difficult to escape.

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

At the beginning, I was an Internet ***** for information about EC. Then the sheer quantity of negative numbers began to get to me and I restricted myself to the CSN site. At least there were survivors AND hope found here.

I guess I had forgotten how horrible the stats are for EC.

Still - to those in the fight, do NOT give up. EC can be beaten. There are several here that are *living* proof of that.

Terry
PROUD wife to Nick, age 49
lost battle to EC, June 19, 2012

jaycc
Posts: 130
Joined: Jul 2012

Just FYI for those who like numbers.
We are going to to look at the seer data along with some other sources to get the number of survivors up, and more visible, hoping to take some of the fear out of things posted on the web now.

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

in 2010, when my husband was dignosed, the 5-year relative survival rate for localized was 33%. So in just two short years survival, for that group, has increased 4%. I watch the seer website closely, as I am a numbers person.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

For the newbies... check it out!

BMGky
Posts: 666
Joined: May 2010

Hopefully, it will reach newbies. Good idea.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

Today, I will be adding new members. If you're interested, come check us out. Share stories, support, add info, or lurk away. EC is a BEAST!! No one should feel alone!

www.4Vitality.org

~Jayme
Dad DX 8/2010 Stage IVB
Still fighting STRONG

crystalbay
Posts: 39
Joined: Aug 2010

Daily Strength has online support groups for every imaginable health issue, including EC. It's very supportive (the EC group), personal, and responsive. Just google "Daily Strength"and then "Esophageal Cancer Support Group"

jaycc
Posts: 130
Joined: Jul 2012

Thanks Crystalbay,
I'll look for it, and also add it to the Ecaware site links

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

Sorry!

BMGky
Posts: 666
Joined: May 2010

It's good to see that there are more and more sources for EC information. Please keep coming here as well as visiting the other sites. Glad to see the improvement in survival statistics. When my husband was diagnosed, the statistics were so very scary and they didn't tell the whole picture so I stayed away from sites having figures.

BMGky
Posts: 666
Joined: May 2010

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