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What prompted you to have the BRCA test and did you have genetic counseling prior to testing?

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Topics (Tags):

BRCA-1 Breast Cancer Genetic Tests Genetic Counseling BRCA-2 BRACA-1 / BRACA-2 Screen

Topics:

BRCA-1 X Breast Cancer X Genetic Tests X Genetic Counseling X BRCA-2 X BRACA-1 / BRACA-2 Screen X

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Answers (5)

member9277 (High Risk Individual) - 08 / 17 / 2011

All of the women in the last several generations of my father's family died from breast, ovarian and, as my grandmother used to put it, cancer "down there". I was doing IVF with PGD and decided to have the test because it's a gene that they could screen for in my embryos. I wanted to make sure I had a daughter without that risk. No, I didn't have official "genetic counseling" first...

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afreshchapter (Survivor (1 year)) - 08 / 17 / 2011

A study was done in the early 1990s on my paternal grandmother's family because she and two of her sisters all got diagnosed with ovarian cancer within a few months of each other. Luckily, they all survived even thought it was the 1980s and many people with ovarian cancer did not survive.

My Dad and his siblings were tested and he turned out to be a carrier. He wanted my sister and I to get tested as soon as we were legally allowed to at age 19. So, we went in for genetic counselling and I found the whole experience to be surreal and silly. Even when I heard the news that I had the gene mutation and my sister did not, it still didn't seem real. At 19, you can't necessarily grasp the risks even though the counsellor tells you about them and asks how you feel.

It was challenging to live with a known risk for 10 years. Especially in my early 20s. Doctors encouraged me to get my breasts removed and I just wanted to be a "normal" college student. I didn't want to deal with losing my breasts and having to get reconstruction. I told myself I would make a decision after I got married, had babies, and was able to breast feed them. Unfortunately, this put a lot of pressure on my relationships and I found myself single and child-less when I got diagnosed at age 30. In some ways, I wish I hadn't known because it felt like I was waiting to get cancer.

On the flip side, I am alive today because of the aggressive screening by the Cancer Agency here in Vancouver, Canada. They alternated between MRIs and Mammograms (one every six months) and because of this, the doctors found my Triple Negative, Grade 3 tumour when it was still small enough that it hadn't spread to my lymph nodes. Given it's placement against the chest wall, I would never have felt it until it was much too late.

My Dad and his siblings were tested and he turned out to be a carrier. He wanted my sister and I to get tested as soon as we were legally allowed to at age 19. So, we went in for genetic counselling and I found the whole experience to be surreal and silly. Even when I heard the news that I had the gene mutation and my sister did not, it still didn't seem real. At 19, you can't necessarily grasp the risks even though the counsellor tells you about them and asks how you feel.

It was challenging to live with a known risk for 10 years. Especially in my early 20s. Doctors encouraged me to get my breasts removed and I just wanted to be a "normal" college student. I didn't want to deal with losing my breasts and having to get reconstruction. I told myself I would make a decision after I got married, had babies, and was able to breast feed them. Unfortunately, this put a lot of pressure on my relationships and I found myself single and child-less when I got diagnosed at age 30. In some ways, I wish I hadn't known because it felt like I was waiting to get cancer.

On the flip side, I am alive today because of the aggressive screening by the Cancer Agency here in Vancouver, Canada. They alternated between MRIs and Mammograms (one every six months) and because of this, the doctors found my Triple Negative, Grade 3 tumour when it was still small enough that it hadn't spread to my lymph nodes. Given it's placement against the chest wall, I would never have felt it until it was much too late.

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member3831 (Survivor (2 - 5 years)) - 08 / 19 / 2011

My twin sister was diagnosed at age 33 with Stage 2 invasive breast cancer. She underwent testing (twice) and both times the result was "Variant of Undetermined Signigicance'. She didn't and I didn't discuss this with a genetic counselor (in retrospect, I don't know what would have changed but it would have been nice to speak with a genetic counselor to find out what that VUS meant statistically in terms of risk). I was diagnosed with Stage 2 invasive at age 39. Underwent testing. My twin and I had the same mutation in our BRAC1 gene. Still, VUS. Since we were both stricken at such a young age, I did bilateral mx with reconstruction. Ovaries removed 9 months later. My twin did a prophylactic bilater mx (she only did a lumpectomy at the time of her original dx) and ovaries removed. Since all this happened, our analysis of our mutation has been updated (more data is better statistical analysis) and our mutation has been reclassified as 'suspected deleterious'. Long answer, but I do think that genetic counselors my be underused. Not that they tell you what to do - just what this data may mean to you and your family.

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member9723 (High Risk Individual) - 08 / 24 / 2011

When you've watched every other woman in your family be diagnosed with and treated for breast cancer, you just know that your risk is not average or random. Despite that, it took a good deal of time and insistence on my part to convince my siblings to undergo testing with me. Ultimately, 5 out of 7 of us (including me) were confirmed to be BRCA2 carriers. We all respond differently. Some of my siblings just didn't want to know.

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Susan,
Thank you for sharing your story. You are so right when you say that everyone responds differently. My Dad and one of my Aunts have the BRCA1 mutation (2/5) siblings). My Dad insisted my sister and I get the testing at a young age so we could be proactive. Luckily my sister does not carry the gene mutation. However, my Aunt encouraged my cousins to NOT get the test. She didn't want it to scare them and impact their lives given how tough her own diagnosis of breast cancer at the age of 44 was on her daughters. So, my two cousins, who are both around my age get access to bi-annual screening, but don't live with the same degree of fear. When they lie in the MRI machine, they can tell themselves they probably DON'T have the gene, whereas, I would lie there waiting to get cancer. In some ways, I wish I would have had the opportunity to deal with it that way. But, hindsight is 20/20, isn't it?

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afreshchapter
- 08/24/2011

member1110 (Survivor (2 - 5 years)) - 08 / 18 / 2011

It has been interesting to hear from someone who has a known mutation at a young age and what it felt like to have that information. Thank you for sharing. I'm so sorry you were diagnosed but as you point out on the flip side you were watched more closely and the tumor was small when found.

Both of my daughters have my brca 1 mutation. One is 24 completing her Masters, newly married and will begin her vigilance other than sbe's when 25. My oldest daughter 43 was dx 4 yrs ago with multi-focal bc but is now doing great. I was dx with tnbc, had surgery, treatment in 2003 but it came back as a new primary on the other side in 2007 one month after my daughter had been dx. So I did have the brca test done as did my daughters and sister. I do have a heavy family history of cancer, lost my mother at age 46 of ovca. My sister was brca - but she was dx with cml leukemia.

I did not have genetic counseling, my sister did in another State and her counselor was able to contact my Onc who got the test done for me. I have read and researched alot on brca mutations and tnbc. It's a tricky monster!

Both of my daughters have my brca 1 mutation. One is 24 completing her Masters, newly married and will begin her vigilance other than sbe's when 25. My oldest daughter 43 was dx 4 yrs ago with multi-focal bc but is now doing great. I was dx with tnbc, had surgery, treatment in 2003 but it came back as a new primary on the other side in 2007 one month after my daughter had been dx. So I did have the brca test done as did my daughters and sister. I do have a heavy family history of cancer, lost my mother at age 46 of ovca. My sister was brca - but she was dx with cml leukemia.

I did not have genetic counseling, my sister did in another State and her counselor was able to contact my Onc who got the test done for me. I have read and researched alot on brca mutations and tnbc. It's a tricky monster!

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2 Replies

Thank you so much for sharing. It IS a tricky monster and it forces you to consider big issues that you never would have thought you would have to consider. The issue I am now faced with is when to get my ovaries removed. At only 32, I still am hopeful I will meet someone, get married, and have my own children. But, with every year, I feel more pressure to make a decision. My second cousin had breast cancer at 28 and now has Stage 3C Ovarian Cancer at only 41.

Because of the mutation, when my cancer was diagnosed, everyone recommended a double mastectomy and reconstruction. Although it was tough to go through, it helped alleviate my fears of getting it on the other side, which I am sorry happened to you!

None of this is simple, but I credit this genetic research with saving my life. I am so happy to hear your older daughter is doing well and your younger one will get access to screening.

All the best to you and your family!

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afreshchapter
- 08/18/2011

Thank you for your perspective on being a mom with children with the mutation. My children (3 daughters and 1 son) are too young for testing but it's never to soon for me to begin thinking about what my mutation (and that of my twin sister) may mean to my family and the potential that my children have interited it. Thank you for sharing.

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member3831
- 08/19/2011

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Latest Activity: 12 / 23 / 2011
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