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BRCA

Fellowship for kindred spirits.
ktg000
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BRCA

Postby ktg000 » Sun Dec 08, 2019 11:19 am

Hi all..I haven’t been around for some time. How is everyone..Stavia, Julie, Starfish..you all helped me so much at the start. I pop up every now and again. I’m 4/4. I did 23andme to find out about the BRCA mutations as my mom died of ovarian cancer at 46 (I’m 40 in 3 weeks). I hadn’t realised at the time but not all mutations are tested. I’ve now found out I’ve got a BRCA 2 mutation through a private test. My genes are rubbish aren’t they! Anyone else got both?! Just for moral support really.
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NF52
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Re: BRCA

Postby NF52 » Sun Dec 08, 2019 1:32 pm

ktg000 wrote:Hi all..I haven’t been around for some time. How is everyone..Stavia, Julie, Starfish..you all helped me so much at the start. I pop up every now and again. I’m 4/4. I did 23andme to find out about the BRCA mutations as my mom died of ovarian cancer at 46 (I’m 40 in 3 weeks). I hadn’t realised at the time but not all mutations are tested. I’ve now found out I’ve got a BRCA 2 mutation through a private test. My genes are rubbish aren’t they! Anyone else got both?! Just for moral support really.
Welcome back, ktg000!
We're glad that this is a place of hope and support for you. I thought it might help to know that we have had at least one other member who is ApoE 4/4, who was also 37 in 2017, and who also has BRCA2 mutations. "Katie" from northern California has not been active on the forum since her early postings, so I am hoping that receiving an email that she's been quoted will bring you two genetic "sisters" in touch with each other.

I also hope that you can reach out to BRCA support groups in the UK and talk with a genetic counselor about increasing monitoring for breast and ovarian cancers. As a 67 year old woman with ApoE 4/4, whose dad died at 67 of cardiac arrest and whose maternal grandmother died at 45 of a stroke, I believe that even strong risk genes are not going to determine how I find joy and purpose in my life. I hope that your toddler son is now teaching you new things he's learning at preschool every day!
kmg71580 wrote: My name is Katie. I am 37, a wife and mother of 3 girls, living in Northern California.

I recently completed 23andme testing and uploaded the data to promethease. I always knew I had some unfortunate genetics (family history says a lot) but wow! It turns out I have two apoe4 alleles and two mutations on my brca2 gene (substantially increasing my risk of breast/ovarian cancer). Both of my grandmothers had AD and my mom died at age 50 from ovarian cancer. My dad and the men on his family have a very serious history of cardiac disease....It helps to know I'm not alone. I've begun going through the primer and I'm looking forward to diving in deeper. If anyone has words of wisdom for navigating these first couple weeks please pass them on. It has been quite a shock.
Here's the link to California Katie's complete post:
https://www.apoe4.info/forums/viewtopic.php?f=2&t=3394&p=40647#p40647

Hugs to you both!
Last edited by NF52 on Wed Dec 11, 2019 5:58 am, edited 1 time in total.
4/4 and still an optimist!

Starfish77
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Re: BRCA

Postby Starfish77 » Tue Dec 10, 2019 11:44 pm

Hello ktg000,
Starfish here saying welcome back! I'm an e4/e4. I don't believe I have any BRCA genes but did have breast cancer when I was 43. I'm 82 and really closer to 83 so that makes it 40 years ago. Just keep yourself as healthy as you can with all the good information on the forum. We are all going to have a number of health problems during our lifetime. Keep yourself as healthy as you can and you will be better able to ward off whatever may come your way. Even if we do get diseases our family may have had there are often better treatments now, than there were years ago for many medical problems. If we do have a problem, we have lots of friends on the forum to help us do some problem research. I'm glad you are back with us and sharing your concerns.

ktg000
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Re: BRCA

Postby ktg000 » Wed Dec 11, 2019 3:00 pm

Thanks so much for your replies. Nice to hear fro you starfish..you’re an inspiration. I remember you saying you had been through cancer and divorce when I posted about my divorce! Thank you for your message too NF52...it seems I do have a genetic sister. I hope everyone is doing well. Thank you for the support.
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bosco
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Re: BRCA

Postby bosco » Sat Dec 14, 2019 12:58 pm

I've been involved with the BRCA community for many years. Especially with an organization called FORCE. The acronym stands for "facing our risk of cancer empowered". I would be happy to talk to you about the organization. I was tested for the BRCA gene about 15 years ago and I'm BRCA1. I was concerned for my children, especially my daughter since there was such a strong family history of breast and ovarian cancer. It turned out both my son and daughter, unfortunately, have the gene.
Also a family history, my father, of alzheimer's. I'm e4/e3 and so I'm concerned about that as well. Best, Michael

NF52
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Re: BRCA

Postby NF52 » Sat Dec 14, 2019 4:53 pm

ktg000 wrote:...Thank you for the support.
kmg71580 wrote:My name is Katie. I am 37, a wife and mother of 3 girls, living in Northern California...It turns out I have two apoe4 alleles and two mutations on my brca2 gene (substantially increasing my risk of breast/ovarian cancer)
bosco wrote:I've been involved with the BRCA community for many years. Especially with an organization called FORCE. The acronym stands for "facing our risk of cancer empowered". I would be happy to talk to you about the organization. I was tested for the BRCA gene about 15 years ago and I'm BRCA1. I was concerned for my children, especially my daughter since there was such a strong family history of breast and ovarian cancer. It turned out both my son and daughter, unfortunately, have the gene.
Also a family history, my father, of alzheimer's. I'm e4/e3 and so I'm concerned about that as well. Best, Michael

Michael, a warm thank you for sharing this information about FORCE with ktg000. I've included both her and "Katie" from California in on your reply. "ktg000" lives in the UK, I think, but the virtue of online forums is they can cross oceans easily!
I've included a link to the website for FORCE, in case they would like to check it out .https://www.facingourrisk.org/index.php

Genetic research into cancer prevention is racing ahead, with many hopeful that new gene editing technologies such as CRISPR will greatly reduce the risks faced by you and your children. As someone whose mother took a humongous dose of a synthetic estrogen called DES to prevent a miscarriage while I was in utero, I learned at age 18 that I might have a high risk of reproductive cancer and fertility issues. At age 67, I am happy to say that careful monitoring has led me to be a mother of 3 and grandmother of 2, with no sign of cancer or other serious issues. My fondest hopes are that you all share the same good fortune!
4/4 and still an optimist!

ktg000
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Re: BRCA

Postby ktg000 » Sun Dec 15, 2019 12:28 pm

Thanks NF52 and Michael. I did come across the FORCE website when I was reading around..I’ll have a closer look thank you. Glad to hear you’ve had no problems NF52. Luckily I only have a son but I know he will need his prostate monitoring too if he does have the mutation. I’m hoping things might have advanced before he gets to that age (he’s only 6). I must admit I’m glad I’ve got a boy, but as long as girls know early enough they can take some measures. I’d been asking about my risk for years since my mom died of ovarian cancer at 46 and a computer programme put me at very low risk. The NHS clinic referred me to have it done privately recently. I do feel I wish I had known earlier as I’m concerned I’m 40 now and had no screening. I’m planning to have everything off/out!
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