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10:14 pm
October 2, 2010
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I am a 25 female, I lost my mom to stomach cancer when I was 15 years old. Even when my mom was alive I had my first upper GI endoscopy done and other tests at 13, which revealed I had H. pylori, acid reflux, IBS and Gastritis. They put me on medication to get rid of the H. pylori so I no longer have that. My aunt and grandmother died of cancer but I do not no what kind. I have had more upper and lower endoscopes since then and they just show gastritis and polyps. So am I at risk? Where can I get this test to see if I have a gene mutations?
2:24 am
September 20, 2010
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I think you could ask your primary physician, or your specialist (a gastroenterologist, perhaps?) to refer you to the nearest genetics counselor to talk about your family history and your own medical history. Then you would have professional help in deciding whether or not it is appropriate to have genetic testing done. It would be very helpful if you could find out what kind of cancer took your aunt and grandmother, and if they died of lobular breast cancer, stomach cancer, or colon cancer, you will want to raise the question of whether your family could be affected by HDGC (hereditary diffuse gastric cancer) syndrome.
Good luck, and keep us posted on your progress!
Take care,
Cindy
3:42 pm
October 2, 2010
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Thanks Cindy, I just made an appointment with a genetics counselor, I emailed her an explained my background so I have an appointment November 10, 2010.
6:17 pm
September 20, 2010
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So glad you have an appointment in a month to talk about your concerns! Do keep us posted here, ok?
All the best!
Cindy
5:55 pm
October 2, 2010
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Well I guess I won't be getting the test done after all since the VA does not cover it and I don't have any other insurance the doctor said it could cost between 1,000 to 3,000 dollars. I guess the VA does not care that much about its Veterans.
11:47 pm
August 11, 2010
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I think it is important to know your risks, and the to follow the appropriate course of action. As Cindy said, learning more about your own family history is an important step. Does your primary care doctor feel you are at increased risk for stomach cancer, of any type? If there are concerns about hereditary risks, are genetic counseling services covered for you? Does the counselor you scheduled an appointment with feel that you may be at risk? If you are at risk, and genetic testing is recommended, it would be worth further investigation to find other means to get it done. Beiing proactive about your own healthcare, no matter what the health issue, is the best thing you can do for yourself and your family.
7:43 pm
October 6, 2010
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I am going to email my genetic counselor to see why you wouldn't be covered under the VA and ask what the cost is because she will know for sure….this just doesn't sound right…
Teri
4:56 pm
October 2, 2010
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Thank You!
7:25 pm
October 2, 2010
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Karen,
Yes, my primary care doctor does say I am at increase risk including past GI doctors, when I was 14 I remeber my GI doctor telling my mom, when she was still alive, that I could inherit her stomach cancer. I have been having stomach pain but they say it is just the IBS and acid reflux and the primary care doctor prescribed Levsin which does not really do anything.
5:27 pm
October 6, 2010
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Ok is your doctor at least willing to referr you to a genetic counselor? If so that is what I would do as they are the experts in getting you what you need(: I heard back from my counselor and she said if you are the first one in your family to get tested it will cost at least $1400, if someon e in your family has already been identified as having this gene then the cost is morelike $365( this was cost 2 years ago). When you see the counselor they can write a letter of medical necessity in order to get your insurance to cover. She wasn’t real sure how the VA system works though. If your VA has a genetic couselor that person might have more influence , however any genetic counselor that’s familiar with this gene should be able to help you.
Hope this helps(:
9:07 pm
September 20, 2010
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tgarin1 said:
Ok is your doctor at least willing to referr you to a genetic counselor? If so that is what I would do as they are the experts in getting you what you need(: I heard back from my counselor and she said if you are the first one in your family to get tested it will cost at least $1400, if someon e in your family has already been identified as having this gene then the cost is morelike $365( this was cost 2 years ago). When you see the counselor they can write a letter of medical necessity in order to get your insurance to cover. She wasn't real sure how the VA system works though. If your VA has a genetic couselor that person might have more influence , however any genetic counselor that's familiar with this gene should be able to help you.
Hope this helps(:
what great info, Teri! And I hope you'll keep the November 10th appt. with the genetics counselor, Duarte (is that your name?) so you can explore these things as Teri is suggesting. Don't give up!
10:14 pm
October 2, 2010
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Thank you Teri and Cindy! The VA does not have a genetic counselor but I think the one I am seeing is going to write a letter to the VA to see if they will pay it.
2:22 pm
February 11, 2011
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I just got my blood taken for the test this week and my genetic councelor was able to find a lab to do it under $200. However, I am not the first in my family to be tested.
7:14 pm
September 20, 2010
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Hi Deborah,
I've heard that there is a lab in Ohio, in addition to the City of Hope one in California. Would you be willing to share the name of the lab?
Keep us posted on your outcome, if you'd like. We are here to support everyone!
And thanks for sharing this info.
All the best,
Cindy
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