Jacqui

Hi Jacqui,
Thanks so much for your inquiry about my health. It's good to know there are others out there with GIST, as they are so rare. As I live out in the country, there are no cancer support groups around, so I do really appreciate your input.
I have had many cancers, one in my 20's, (many, many years ago) a melanoma which was very deep & disfiguring, and then 2 last year, well I mean in 2011. I was diagnosed with Angiosarcoma, a super rare blood vessel cancer, and then as they tested every inch of me, a GIST, and a tumor of my Parotid Gland. All were removed, and so far, all clear scans. I had no chemo or radiation.
So far, so good. But my GIST surgery was very difficult. I had it at Christmas time and had some complications, some with the care I received from the hospital. It was so bad I should write a book about it! Now I am getting some odd feelings in my stomach, not really painful, but just like there are things inside poking me! I know that's not a very good explanation, but best I can do. It took me a long time to recover from that year, and I should feel happy to be alive.

Now, how about what's happening with you & your family?

Hello and welcome, we are glad to have you with us. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, any questions you may have just post them in the questions tab and everyone will see them there and be able to help you.

https://www.whatnext.com/conditions/cancer/rare-cancers

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

Greg P
3x survivor
Team WhatNext

Welcome. Thank you for registering. Here are a few tips to get you started:

1) Find other people like you. You can do this by clicking on "see more" in the "People Most Like You" box to the right.

2) Go to our Questions page to see what's been posted, ask a question or give some advice. Here is a link to our most popular questions: http://bit.ly/MfN45w

3) Complete your journey profile to share your experience. You can do this by clicking on "Add Experience" in the box next to your picture above.

4) Don't forget to upload a picture!

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Best,
Team WhatNext