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Post by katespade on Feb 5, 2018 13:53:18 GMT -6
Has anyone done genetic testing for cancer genes? If so, can you tell me about your experience and the costs associated?
My grandmother has been diagnosed with stage 4 ovarian cancer, and while I knew her older sister had cancer, I have now learned that more than half of her siblings had similar cancers. One of my mother’s siblings also had cancer, which leads us to think there may be a genetic component here. I have an appointment scheduled to speak to my doctor, but I’m trying to be as prepared as possible with information. I’m definitely someone who wants to know all I can.
Thank you in advance <3
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Post by enchanted on Feb 5, 2018 13:54:52 GMT -6
I don't have experience, but I'm sorry to hear about your grandma.
I'm also going to follow along, because I need to get tested as well and keep putting it off since I don't know what to expect.
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Post by katespade on Feb 5, 2018 14:01:02 GMT -6
I don't have experience, but I'm sorry to hear about your grandma. I'm also going to follow along, because I need to get tested as well and keep putting it off since I don't know what to expect. Thanks. Ive been the only one so far who really wants to do this to be prepared, and I keep hearing that it’ll be too expensive, so I’m curious if that’s been the experience of others. |
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ktg
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Post by ktg on Feb 5, 2018 14:11:32 GMT -6
My mom and my aunt both had breast cancer (both are living.) I got the genetic testing and it was covered by insurance because of the close family connections.
I do not have any of the markers they currently know to look for - this was specifically for breast/ovarian/testicular cancers that have known similarities and genetic markers.
My doctor mentioned that the testing company keeps all results and looks for new markers over time, too, and will try to contact past participants if something new is discovered as a marker. I thought that was interesting. I do not remember the name of the test or company, though.
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Post by sweetc129 on Feb 5, 2018 14:22:17 GMT -6
I started the process then stopped when I got pregnant, but plan to finish the process once I’m not pregnant. It is covered for insurance for me since I have a strong family history on both sides. My mom is dying of colorectal cancer and her father died of colon cancer. My father has prostate cancer (due to the BRCA gene) his sister, mother and aunt all died of breast cancer.
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lucylou
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Post by lucylou on Feb 5, 2018 14:23:40 GMT -6
I had genetic testing done for Lynch syndrome which increases your risk of colon and other cancers (negative, thank God). My dad and several of his siblings have it. It was a blood draw and cost about $100. Idk if mine was a special case because they had my dad's results and so they knew exactly which gene to look at.
He got his free as part of a research study through the VA.
Before the test, I met with a genetic counselor who took alllll of my (extended) family history which I thought was a little strange because it wasn't part of the study and with this gene, if your parent has it, there is a 50/50 chance you have it. If you don't, the buck stops with you. You can't pass it on. So idk what it really mattered to her how many of my aunts/uncles/16th cousins had it but *shrug.*
Eta: actually I just remembered my insurance paid it, but they had told me if it wasn't covered it would be $100.
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Post by lucilleaustero on Feb 5, 2018 14:43:04 GMT -6
I got BRCA testing done. It was quick, in the office, was asked a lot of family history questions. Insurance paid for it because of how many family members have had ovarian and breast cancer.
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Post by katespade on Feb 5, 2018 15:08:07 GMT -6
lucylou Lynch syndrome seems to be a possibility for us based on the cancer types. I have an added complication of sorts that I have no knowledge of the medical history of my biological fathers side of the family, and I’m really not sure I want to open Pandora’s box to try to find out. Thank you to those who have responded so far!
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Post by Lord Disick on Feb 5, 2018 15:08:37 GMT -6
I'm sorry about your grandma and that you are in place to be considering testing but I think it's good that you are. I know a lot about this but my actual testing was done many years ago and before the patents were overturned so it was much different, cost wise. Your insurance should cover it but if not there are so many companies doing the test by now that it's quite cheap. FORCE (facingourrisk.org) has great resources for all stages of testing or even if you're just considering it.
I'm happy to answer any questions I can or share my own experience.
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Post by Lord Disick on Feb 5, 2018 15:10:51 GMT -6
lucylou Lynch syndrome seems to be a possibility for us based on the cancer types. I have an added complication of sorts that I have no knowledge of the medical history of my biological fathers side of the family, and I’m really not sure I want to open Pandora’s box to try to find out. Thank you to those who have responded so far! I just want to say that you don't have to dig into your family history any more than you are comfortable with, just make sure that they know that it's unknown history and not that there is no family history of cancers on that side of the family and they'll probably just do more comprehensive testing. |
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Post by katespade on Feb 5, 2018 15:14:57 GMT -6
lucylou Lynch syndrome seems to be a possibility for us based on the cancer types. I have an added complication of sorts that I have no knowledge of the medical history of my biological fathers side of the family, and I’m really not sure I want to open Pandora’s box to try to find out. Thank you to those who have responded so far! I just want to say that you don't have to dig into your family history any more than you are comfortable with, just make sure that they know that it's unknown history and not that there is no family history of cancers on that side of the family and they'll probably just do more comprehensive testing. Thank you for this <3 |
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lucylou
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Post by lucylou on Feb 5, 2018 16:19:57 GMT -6
lucylou Lynch syndrome seems to be a possibility for us based on the cancer types. I have an added complication of sorts that I have no knowledge of the medical history of my biological fathers side of the family, and I’m really not sure I want to open Pandora’s box to try to find out. Thank you to those who have responded so far! I could be wrong but, from what I remember, I think there are only 3 gene mutations to do with Lynch. So it's not like it would be crazy to have to test for all of them. |
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Post by honeylemon on Feb 5, 2018 18:39:40 GMT -6
I had it done. My insurance paid for it but that was because I was already diagnosed with breast cancer and two of my grandmothers also had it. They gave me the option of testing 9, 14, or some other huge number of genes. I chose the 14 option. My results were negative with one variable that they said is very common and very likely also negative.
They did tell me my cost without insurance would have been around $400.
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