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December 18, 2013

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December 18, 2013

I discovered NSFC when my father was diagnosed with gastric cancer and then found out he carried the CDH1 gene. My father was having issues after having his stomach removed and I reached out to NSFC for some advice. Somebody got back to me within 10 minutes. She was extremely helpful and sympathetic. My father passed away a year after his diagnosis. I found out I was positive for the CDH1 gene 2 weeks after my dad died. 5 more family members are carriers of this gene. NSFC was our saving grace!!! It was so helpful to talk to others who have gone through what my family was going through. So far, 5 members in my family have had a prophylactic total gastrectomy. NSFC prepared us so well for surgery and helped us find the best surgeon. They were there for us when we had questions after our surgery. I would strongly encourage anyone going through this to reach out to NSFC. I couldn't have done it without them!!!

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

June 22, 2011

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June 22, 2011

I have been diagnosed with the CDH1 gene which increases my chances of having stomach cancer to about 80%. My father and uncle have both passed away from Stomach cancer and my other uncle and aunt have both had their stomachs removed as a result of cancer. Due to the poor detection of stomach cancer through endoscopy, it is advised that those with the CDH1 gene have a total gastrectomy (removal of the stomach) which eliminates all risk. Based on our strong family history, I have elected to have the surgery. During my research of this gene I came across the NSFC website and have found it invaluable!! It gives factual information as well as personal experiences from others who have had TG and the opportunity to take part in discussion forums. I access this website on a weekly basis and will continue to do. It is very comforting to find such a site when diagnosed with this quite rare but deadly gene and to hear the experiences and receive the support from other members

The Great!

I've personally experienced the results of this organization in...

enabling me to find out alot of vital information relating to my condition and therfore helping me make an informed decision to embark on my life changing surgery. Reading the personal stories and join into discussion groups has really given me comfort and made me feel as though I am not alone through this. The founder of this site, Karen, has also corresponded with me on several occasions about her experience and knowledge which has been amazing.

Ways to make it better...

If I had to make changes to this organization, I would...

I cant think of any changes I would make - I think it is a wonderful organisation. I guess the only thing that would help is to be able to assist the site with more public awareness of this fantastic organisation and education around stomach cancer.

June 17, 2011

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June 17, 2011

No Stomach for Cancer is an amazing resource for people who are unfortunately affected by this horrible disease. They provide so much information regarding stomach cancer as well as help to unite people from all over the world to share their stories. My husband recently lost his 7 year battle with gastric cancer and this organization provided some comfort to me by being able to read the stories of others who have battled this disease. This cancer is so over looked in the real world, in fact there were no organizations and very little information available when my husband was first diagnosed in 2004. My hope is that No Stomach for Cancer will get the attention it deserves and in turn bring more funding to help fight this very serious cancer.

The Great!

I've personally experienced the results of this organization in...

Bring more attention to Gastric cancer as well as help explain total gastrectomy. Also they provide support to people suffering from this disease.

Ways to make it better...

If I had to make changes to this organization, I would...

No changes

More feedback...

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Some

How did you learn about this organization?

Searching the internet

When was your last experience with this nonprofit?

2011

June 15, 2011
1 person found this review helpful

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June 15, 2011
1 person found this review helpful

The summer of 2009 My youngest son complained of general abdominal discomfort but nothing that could be diagnosis. This went on thru the fall and early winter it just got worse with no one able to diagnosis what was wrong...Then Christmas Eve 2009 I got the worse news I think any mother ever can deal with. Ray was finally diagnosised with gastric cancer then we had to wait till monday to learn what type and what stage it was. That was 4 days away and it felt like a life time. Monday we were told it was signet cell adenocarcinoma of the stomach...any signet cell cancer is the worse to try to treat but we did. It was a long grueling time chemo was the only option because it had already advanced 9STAGE 4) and he had ascites. (fluid build up in abdominal cavity) He fought and lost his battle that August 10, 2010 thru this time it was suggested we have genetic testing done just to see...They drew the blood in February and said they would let us know, My dad had also died of gastic cancer about 10 years earlier. What a surprise in Feb. of 2011 when my daghter in law called to say she finally got Rays genetic test back and it was positive. It took my a few weeks to process this information but then I gathered myself and went to see the genetic testing doctor at our local hospital. So far three of my four adult childeren have recieved their tests and have been negative. I on the other hand am the carrier and came back positive. I have decided that I did not watch my father and son die horrible deaths from this awful disease for nothing ..I am having a gastrectomy next week to show my son Rays beautiful daughters they have nothing to fear if they do prove to be positive as adults and need gastrectomies (they are only 3 and 4 and can not be tested until they are in their late teens unless they get symptomatic) I pray they will find better screening in the next 10 years because without it having a gastrectomy is the logical alternative to prevent gastric cancer. I wISH I could do something to let all doctors be more aware of this killer of our young people. I am a nurse and my work brings across many people with gastric cancer and I wonder how many of them could be EChardin positive.

The Great!

I've personally experienced the results of this organization in...

It has been a helpful to have this organization to encourage us and a wealth of information that helped lead me to my decision.

Ways to make it better...

If I had to make changes to this organization, I would...

I WISH IT HAD A WIDER VIEWERSHIP SO MORE PEOPLE WOULD BE AWARE OF THIS LINK TO GASTRIC CANCER

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