High Risk Mutation (ie. BRCA, ATM, RAD51D)

Posted by corinneberg @corinneberg, Fri, Mar 15 9:46am

Anyone out there know they carry a genetic mutation that increases their risk for cancer? I run a support group every other month at the Dan Abraham Healthy Living Center (DAHLC) in Rochester. If interested feel free to reach out to me. We would love to build our group. 🙂

I am BRCA2. But I live 2.5 hours from Rochester. Two years ago I had metaplastic stage 2 breast cancer. I had a lumpectomy followed by chemo and radiation.

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@marykaym63

I am BRCA2. But I live 2.5 hours from Rochester. Two years ago I had metaplastic stage 2 breast cancer. I had a lumpectomy followed by chemo and radiation.

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I'm BRCA2 also! I am a "previvor" as I found out at age 25 and had a bilateral mastectomy. They have meetings in the cities too. Not sure if you are close to there? Facing Our Risk of Cancer Empowered (FORCE) is a great resource and support too (non-profit org). Best to you. Thanks for responding.

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I am BRCA1 and BRCA2. I had TNBC in the left breast and ER+ in the right breast. My maternal grandmother had ovarian cancer, my sister had ER+ breast cancer years ago and my brother had prostate and pancreatic cancer. After my diagnosis, my sister tested positive on BRCA1 and BRCA2. My brother never had the genetic test. I had chemo, bilateral mastectomy and hysterectomy. My daughter (30 yo) tested positive on BRCA1 (but not 2). She is being watched carefully every 6 months. When she is 40, they recommend hysterectomy. She does not have children yet, so no treatment at this time unless she develops breast cancer. It is odd that my mother and her 2 sisters have never had cancer.

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@corinneberg thanks for getting this discussion groups started. I'm glad that you're extending your in-person support group to include an online format. It's a great way to reach women who are unable to join you in person in Dan Abraham Healthy Living Center (DAHLC) in Rochester as well as to continue the connections and conversations between meetings.

I think you might also be interested in these related discussions:
– Anyone dealing with Atypical Ductal Hyperplasia (ADH)? https://connect.mayoclinic.org/discussion/anyone-dealing-with-atypical-ductal-hyperplasia-adh/
– High risk, NOT from BRCA but from typia, such as ALH, ADH, LCIS https://connect.mayoclinic.org/discussion/high-risk-not-from-brca-but-from-typia-such-as-alh-adh-lcis/
– ATM Gene Mutation and Care https://connect.mayoclinic.org/discussion/atm-gene-mutation-and-care

I'm tagging other members who have mentioned high-risk mutations to bring everyone together in the same "room". @elsie37 @ladylawdawg @elsajohnson @ckf1317 @icya2282 @cindylb @jrawls99 @khauff @camper1968 @doyoga @patsydanley @marciski @lnduh66 @zinath123

Why don't we start by introducing yourself, which mutation you carry and what if any steps have you taken?

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@patsydanley

I am BRCA1 and BRCA2. I had TNBC in the left breast and ER+ in the right breast. My maternal grandmother had ovarian cancer, my sister had ER+ breast cancer years ago and my brother had prostate and pancreatic cancer. After my diagnosis, my sister tested positive on BRCA1 and BRCA2. My brother never had the genetic test. I had chemo, bilateral mastectomy and hysterectomy. My daughter (30 yo) tested positive on BRCA1 (but not 2). She is being watched carefully every 6 months. When she is 40, they recommend hysterectomy. She does not have children yet, so no treatment at this time unless she develops breast cancer. It is odd that my mother and her 2 sisters have never had cancer.

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Wow! I haven't met anyone yet with both BRCA1 & 2 (although I have heard of it)! Do you live in Rochester? I'd love to meet you. 🙂

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@colleenyoung

@corinneberg thanks for getting this discussion groups started. I'm glad that you're extending your in-person support group to include an online format. It's a great way to reach women who are unable to join you in person in Dan Abraham Healthy Living Center (DAHLC) in Rochester as well as to continue the connections and conversations between meetings.

I think you might also be interested in these related discussions:
– Anyone dealing with Atypical Ductal Hyperplasia (ADH)? https://connect.mayoclinic.org/discussion/anyone-dealing-with-atypical-ductal-hyperplasia-adh/
– High risk, NOT from BRCA but from typia, such as ALH, ADH, LCIS https://connect.mayoclinic.org/discussion/high-risk-not-from-brca-but-from-typia-such-as-alh-adh-lcis/
– ATM Gene Mutation and Care https://connect.mayoclinic.org/discussion/atm-gene-mutation-and-care

I'm tagging other members who have mentioned high-risk mutations to bring everyone together in the same "room". @elsie37 @ladylawdawg @elsajohnson @ckf1317 @icya2282 @cindylb @jrawls99 @khauff @camper1968 @doyoga @patsydanley @marciski @lnduh66 @zinath123

Why don't we start by introducing yourself, which mutation you carry and what if any steps have you taken?

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Thank you Colleen! This is a great resource.

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@corinneberg

Wow! I haven't met anyone yet with both BRCA1 & 2 (although I have heard of it)! Do you live in Rochester? I'd love to meet you. 🙂

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My oncologist said it “is a bit unusual” to have BRCA 1 & 2. He said the same thing when they discovered I had 2 different BC at the same time. 😊 I live in Prior Lake (about 1.5 hours from Rochester).

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I do not have BRCA 1 or 2 but I do have RAD51C

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I currently have stage 3C ovarian cancer. I also was deemed negative for BRACs; however, RAD50 mutation was noted. It was suggested that this mutation may represent an occurrence (past, current or future) of BOTH breast cancer and ovarian cancer. I have had both. No cancers in the family, except a brother who smoked 4 packs a day and died of lung cancer.

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Are there any RAD51C gene mutation positive members on here?

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@rochellec13

Are there any RAD51C gene mutation positive members on here?

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@rochellec13, I believe that @gwinter has a RAD51C mutation. @corinneberg may be able to connect you with others as well.

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@rochellec13

Are there any RAD51C gene mutation positive members on here?

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@rochellec13 I do! Did you have to do anything special, surgically?

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@gwinter

@rochellec13 I do! Did you have to do anything special, surgically?

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Hi Rochellec13! I would recommend you meet with a genetic counselor if you haven't yet. The National Comprehensive Cancer Network (NCCN) states that with a RAD51C mutation there is unknown or insufficient evidence for breast cancer risk but an increased risk of ovarian cancer. They state to "consider a Risk Reducing Salpingo Oophorectomy (RRSO) at 45-50 y". This age recommendation can change based on family history. The surgery can be done laparoscopically and has a relatively short downtime. I help run a support group through Facing Our Risk of Cancer Empowered (FORCE) and we meet regularly at the Dan Abraham Healthy Living Center (DAHLC). Our next meeting is June 6th at 7pm. We would love to have you!

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@corinneberg

Hi Rochellec13! I would recommend you meet with a genetic counselor if you haven't yet. The National Comprehensive Cancer Network (NCCN) states that with a RAD51C mutation there is unknown or insufficient evidence for breast cancer risk but an increased risk of ovarian cancer. They state to "consider a Risk Reducing Salpingo Oophorectomy (RRSO) at 45-50 y". This age recommendation can change based on family history. The surgery can be done laparoscopically and has a relatively short downtime. I help run a support group through Facing Our Risk of Cancer Empowered (FORCE) and we meet regularly at the Dan Abraham Healthy Living Center (DAHLC). Our next meeting is June 6th at 7pm. We would love to have you!

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I agree. I would highly recommend genetic testing following the diagnosis of ovarian cancer.At the institution where I received my primary care, they advised me to have germline testing. In addition, I participated in a study that provided genetic information about the tumor itself which I have found helpful in my understanding of my specific diagnosis. It was also helpful to me to provide my daughters with this information for their health and well-being.

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@rochellec13

Are there any RAD51C gene mutation positive members on here?

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@rochellec13 with no Brca 1 or Brca2 but the RAD51C I decided to have a laparoscopic hysterectomy and Oophorectomy (I only had one ovary). Never again thank heavens. Down time is horrendous not the pain the patience! Cannot move much for almost 4 weeks!
But it was my choice!

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