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Topic: Share your Genetic Testing Story

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Sep 22, 2015 02:21PM - edited Sep 23, 2015 11:08AM by Moderators

Moderators wrote:

Dear Members,

Would you be willing to share your story if you have had genetic testing. We are interested in the following questions: What led you to doing the testing? What were your results, and what choices have you made based on the findings? Was payment an issue? How have you discussed these decisions with your family? What suggestions would you have for others?

Please share your story here, or send us a Private Message. We will be posting your stories here Community Members share their Stories, in order to inspire other visitors to our site who are in a similar situation.

Many, many thanks!

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Posts 211 - 240 (241 total)

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Jul 11, 2018 10:30PM Mominator wrote:

Druanne, wow, that is a whirlwind! I did not know much about Li-Fraumeni syndrome. Yes, that is much worse. 

Yes, sadly, I can see where your aunt would not mention it to you. My mother was diagnosed with BRCA2 mutation soon after her fist diagnosis of DCIS at age 62. She told my sister, who promptly got tested and was negative. NEITHER one thought to tell me. When my mother got ILC at age 79, I said, "wow, that's unusual. Two breast cancers in the same woman," to which my mom said, "well. I am BRCA2 positive!" 

It sounds like your MO has a good plan in place for you. Many best wishes for you.

Madelyn / Mominator 

Mominator, BRCA2+, STK-11 VUS. My Mom dx DCIS age 62, ILC stage IIIA age 79; Mom passed 2/28/18. My Grandmother died of ovarian cancer age 48. Friend to Lori M, passed 5/25/16. Surgery 11/11/2015 Prophylactic mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/18/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 6/30/2017 Reconstruction (left): Silicone implant
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Jul 22, 2018 11:59AM - edited Jul 22, 2018 12:04PM by hapi2bee

I am 73 years old. In 1996 I was diagnosed with ovarian cancer, which means I survived. In March I was diagnosed with breast cancer and by the end of March had had a bilateral mastectomy.

In 2008 my daughter was diagnosed with breast cancer, DCIS at 42 she then had genetic testing which came back positive for BRCA1. That helped her decide her plan of action and she had a BMX hysterectomy and oophorectomy. While in the hospital waiting room I was approached by the doctor asking if they could take my blood (like being approached by Dracula) Long story short I too was positive and they told me my chances for BC. I thought I was "one and out" with cancer and choose not to take tamoxifin or have a BMX at that time (10 years ago). My ovarian cancer was estrogen feed but my BC was NOT so tamoxifin wouldn't have made a difference.

Anyway, we let relatives know about the BRCA1 and the hospital was building a genetic testing data base and they tested our family members without charge. Some choose to be tested others didn't. I have two sons, one has the BRCA1 gene (he has 2 boys) the other doesn't (he has two girls, whew for now!). We made sure my brothers children knew but his daughter choose not to test, 18 months later, in 2009 she was diagnosed with triple negative BC, then was tested. She is BRCA1 and BRCA2 positive. Her brother also carries the genes. I have a cousin who has 4 girls and refuses to test.

My gynecological oncologist (specialist in women's reproductive cancers) kiddingly told me if he had seen my family history he might not have taken my case (it would blow his success rate, lol) he was wonderful and his skills are without a doubt why I am alive 22 years after a rotten ovarian diagnosis. All the women in my family survived cancer without a reoccurrence of another type of cancer, so I thought I was done.....hahaha. But, I'm more secure in knowing that my children know their diagnosis and they can choose when to tell their children.

I have always believed that knowledge is power, even if scary.

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Jul 22, 2018 01:34PM Moderators wrote:

hapi2bee, thank you so much for sharing your story! Would you be able to send us a photo to go along with it? It can be a picture of you or something that represents you, if you wish to remain anonymous. And you can either post it here or send it in a private message.

Thank you again for sharing!

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Jul 22, 2018 02:07PM Becca953 wrote:

In January I had a complete panel of 87 genes tested with no abnormalities identified. I believe they now have additional genes available. So perhaps, mine is a gene that is not identified yet, or perhaps it is something else. My mother had breast cancer at 44 years old, and is doing well 27 years later. She did not have chemo but did have a unilateral mastectomy and take Tamoxifen. My maternal grandmother died of lung cancer despite being a non smoker. My grandmothers one sister died from breast cancer in her 70s. There were six sisters in the family, no other cases, so there is some history but minimal I have extremely dense breasts, so when clustered calcifications showed up on my annual mammogram I knew it was not good.

The insurance covered the testing without issue. The genetic counselor recommended that my mother be tested, but she has not as of yet. I have a younger sister who is now being closely monitored every 6 months. She too has dense breasts. My mother has one sister, now in her 70s, and so far so good for her, BUT she does not have dense breasts, so that may be the genetic link here.

Dx 12/20/2017, IDC, Right, <1cm, Grade 2, 0/3 nodes, ER+/PR-, HER2+ Dx 12/20/2017, DCIS, Right, 4cm, Stage 0, Grade 3, ER+/PR- Surgery 1/30/2018 Mastectomy: Right Chemotherapy 3/4/2018 Taxol (paclitaxel) Targeted Therapy 3/4/2018 Herceptin (trastuzumab)
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Sep 19, 2018 02:31AM Elijahgirl wrote:

Hello, I thought I would share my story. For the last few years both my sister and my mother had stage 4 breast cancer. A year ago I had genetic testing and I had the Chek2 gene. My sister had the Chek2 gene as well.

I was already staying on top of my check ups but this was the first time I thought about being proactive. Well I lost my mother this past November. And I had a scare in January and had to get a biopsy fortunately it was benign.

My sister was also encouraging me to be proactive so I begin trying to find a surgeon and PS that took my insurance. This was a six month process because I had to get the military to refer me out in town because the PS on the base was deployed.

Then my sister lost her battle in March.

I finally got scheduled for a bilateral mastectomy with reconstruction this past August. What was supposed to be just a prophylactic surgery turned out to be treatment as my pathology report showed I had Paget’s Disease in both breast.

Usually with this type of breast cancer it requires a mastectomy followed by radiation and chemo. But because I was proactive I only needed the surgery.

So ladies I would encourage you too be proactive instead of reactive because it literally saved my life. Cancer really sucks but I refuse to let it beat me!

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Feb 12, 2019 01:25PM hrbrod wrote:

I'm just beginning my research into the BRCA gene. My daughter tested positive for it in her 23&me test, but her dad and I tested negative, so I'm confused. I've been a complete wreck with worry for her because the fact that she is "first generation" means our family history of no breast cancer doesn't really mean much. Both of my parents had other cancers which is why I have been interested in genetic testing. (Mother uterine, Dad throat) Is there anyone out there who can tell me about BRCA that is not inherited but mutated on its own? I blocked the result from her because she is only 13 years old and too young to carry this kind of stress, so it's just mom here trying to do what I can to prepare for her future.

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Feb 12, 2019 02:12PM - edited Feb 12, 2019 02:27PM by Moderators

Hi hrbrod, and welcome!

We're so sorry you're here and worrying, but applaud your proactive desire to educate yourself for your daughter's sake.

If you and your husband both accurately tested negative for the BRCA gene mutations, then it's not possible for you to have passed it along to your daughter. It does seem possible that the 23&me test was inaccurate with either you and/or your husband's results and/or your daughter's, We'd suggest consulting a genetic counselor to help explain the findings and potentially retest if they think your family history is enough to cause concern. You can learn more here:

We hope this helps and wish you the best!

--The Mods

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Mar 27, 2019 02:19PM - edited Mar 27, 2019 10:44PM by dnrd3000

My grandmother and I had genetic testing in 1998, about a decade after my mother died of breast cancer at age 41. The results were inconclusive – both of us have a BRCA2 VUS, which means my mother had it as well. Despite how much time has passed, there is still no new information about its relationship to cancer. I updated my genetic testing in 2017 and was negative for any of the mutations linked to disease during the past 20 years.

I've been screened (and screened and screened) since I was 24 years old. At the time doctors recommended mammograms start when I was 10 years younger that my mother was at the time of her diagnosis (age 34). Now mammograms aren't done on anyone younger than 30 and I'm frustrated that the extra x-ray exposure raised my risk level.

I've had 5 biopsies over the last 10 years and was recently diagnosed with DCIS. I feel over-treated already and very set against a surgery as difficult as a mastectomy. I've never had "peace of mind" and don't believe that a mastectomy would deliver it. I'm used to feeling like cancer could be coming anytime (which is true for anyone, really) and I'm reasonably happy anyway. I'm also older than my mother ever was. My grandmother lived to be 91 years old.

I don't have kids but it would be still be valuable to eventually get more information about the significance of my VUS. Now I understand that I may be informing the genetics research more than genetics are informing my treatment. Living with uncertainty is challenging but this is far from the only situation where figuring out how to do that is helpful and healthy.

Recently, I learned there about 6000 VUS and the probability is that most of them are neutral changes and don't actually raise risk for cancer. (This and a lot more is in the excellent book: Twisting Fate: My Journey with BRCA—from Breast Cancer Doctor to Patient and Back by Dr. Pamela Munster) So I feel free to stick to my screening schedule but avoid heavy-handed surgeries and radiation therapy. I feel strongly about going in the direction of the current science, where cutting-edge studies are examining lighter treatment options for DCIS. My doctors in Boston are excellent and give me their honest opinions while still being flexible on the options.

Dx 3/4/2019, DCIS, Left, 6cm+, Stage 0, Grade 2, ER+, HER2-
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Sep 8, 2019 05:20PM Caclcax6 wrote:

Hello everyone new here. I have the same ATM (VUS) c.5821G>C. (Val1941Leu) as my Mother. She had breast cancer ( with 14 of 16 lymph nodes that had cancer also ), uterine cancer and metastatic thyroid cancer which spread through her body. My Mother also had skin cancer. My beautiful Mother battled many other health issues and sadly on October 13th 2017 she lost this horrible battle with cancer with grace, love and courage. My Mother is my hero. I just wanted to be able to talk with others that have this ATM. Also maybe support dealing with thoughts and information about ATM VUS. Thank you

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Sep 8, 2019 09:53PM Moderators wrote:

Caclcax6, we welcome you warmly to our BCO community. You may want to use the Search box to find other with the ATM genetic mutation (e.g. We are so sorry for all your sweet mother went through. She sounds like she was indeed heroically strong and determined.

Thank you for sharing your story, and we are happy you found us.

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Sep 9, 2019 11:07PM ShawnaB wrote:

Just got my test results back to day. Having very mixed feelings about the experience. I am 45 and do not have BC. My mom had trip-neg at 42...survived and thrived. Her cancer seems isolated to her...she has 9 aunts and 5 cancer of any kind in anyone anywhere, male or female.

Her results were negative, but my doc wanted me to test anyway, in case I inherited something from my dad's side. (No BC there either, nor ovarian, or prostate.)

When I got my results, it showed I am a heterozygous carrier of the MUTYH me a slightly increased risk of colon cancer. My paternal grandmother had colon cancer at 75 (she outlived it), and I was already planning to have regular colonoscopies....

Anyway, what I'm conflicted about is that I realized after the fact that I had absolutely no idea what all this doctor was testing me for. I thought just BC mutations. He did not counsel me at all.

When I asked him, I found out that he had actually run a test on 81 different cancer-susceptibility mutations...most of which have no bearing on BC risk, and some for which there is no actionable risk reduction.

I told him I was a little shocked, and I felt totally unprepared for that level of insight into my genetic risk profile. He told me that "we did talk about this"...but I assure you, we did not. He simply said "you should be tested." I have never spent more than 10 minutes with this man at any appointment. I assumed, (bad on me) that since he was a BREAST doctor, he would be testing for BC mutations.

We got into it a bit...he got pretty defensive, and insisted that EVERYONE should know as much as they possibly can about risks. I told him there are quality of life issues with knowing too much, particularly with mutations in which the implications are still poorly understood. I This can create unnecessary angst in some people. At the very least, we need to understand what box we are opening up.

He told me that being dead was a pretty poor quality of life.


Anyway, I felt that I was woefully unprepared for the implications of such a comprehensive test. I am thankful that it didn't turn up an even more nefarious mutation for which there is no risk prevention. Colon cancer is pretty straight forward.

I also am kind of mad at myself for not asking more questions, and just going with the doctor's recommendation to test. I'm not sure where the responsibly lies...on me or the doctor.

I'd like to know if others felt mentally and emotionally prepared for the potential implications of their testing, and if anyone else was subjected to such a comprehensive test? Is this the new standard of care? To test for everything?

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Sep 9, 2019 11:36PM ShawnaB wrote:

Caclcax6, I'm so sorry about your dear mom. I don't know anything about ATM, but I'm glad you are here. So much support and information to be found.

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Sep 9, 2019 11:48PM SimoneRC wrote:

Hi ShawnaB!

Sorry you had unexpected testing! I had full breast and colon due to family history. Since you turned up a gene that is pathogenic for colon cancer, it may be recommended that you have more frequent, and/or additional surveillance for colon cancer. For example, perhaps a “normal" person with a grandmother who had colon cancer would have a colonoscopy every 10 years if there were no polyps after their first colonoscopy. But with the gene mutation they may recommend you may go every three years, perhaps. I was age 42 at my first colonoscopy. No polyps. Age 45 at my second colonoscopy. I had one large, precancerous polyp. I was age 48 at my third colonoscopy. 5 polyps. I was age 51 a my forth colonoscopy. 15 polyps. I was age 52 at my fifth colonoscopy. 35 polyps. After my first colonoscopy at age 42, had I waited 10 years I would probably be in deep trouble. I know it is scary, but it gives you the opportunity to receive better surveillance so you can lead a long, happy and healthy life!

ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy Surgery 4/6/2018 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 5/6/2018 Arimidex (anastrozole) Surgery 7/3/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 4/30/2019 Prophylactic ovary removal Surgery 4/30/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 8/6/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Sep 10, 2019 12:17AM ShawnaB wrote:

Simone, I agree, and I am ultimately glad for the information. And yes, I'll be discussing a screening plan with a GI. That part is good!

My issue is that I was not informed, at all, as to the scope of this genetic test. There was zero genetic counseling prior, and I didn't even understand that genetic counseling was a "thing". I don't think I would have wanted to be tested for "everything"....but rather, only those with actual, actionable risk reduction options. I probably would have opted for breast and colon, based on my family history....but not necessarily some of the others. I would have liked to have been more informed.

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Sep 10, 2019 08:47AM SimoneRC wrote:

Hey ShawnaB!

I get it. Sorry you had that experience.

For you and others, keep in mind that many of these mutations are not for one cancer only. So a “breast” cancer pathogenic gene mutation may be linked to an increased risk of other cancers as well. For instance the ATM mutation, which is part of the breast cancer genes tested, is also linked to ovarian, colon, prostate, lung, pancreatic and kidney.

Hopefully everyone gets to make an informed decision about genetic testing!

ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy Surgery 4/6/2018 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 5/6/2018 Arimidex (anastrozole) Surgery 7/3/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 4/30/2019 Prophylactic ovary removal Surgery 4/30/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 8/6/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Oct 20, 2019 11:28PM Utahmom wrote:

I am 52 years old. I have Dense Breast (3 out of 4), Fibrocystic Breasts, 1st child at 43 years old, Mastitis during breastfeeding, Breastfeed for 26 months. No problems with previous mammograms until after completed breastfeeding, then tons of Micro Calcifications.

2014 Mild Ductal Hyperplasia (Proliferative) based on Core Biopsy with PASH. Normal mammograms 2015,2016, 2017, 2018

2019, Atypical Ductal Hyperplasia Associated with Micro Calcifications based on VABB. Multifocal. New Micro Calcifications in both breasts. One breast appears benign. CRP (inflammation) was 64.

Doctor suggested Lynch Syndrome Testing with BRCA as well.

Mother had Stage IV Skin Cancer and Stage IV Colon Cancer during life. She is 89 years old. Her 3 other siblings had Colon Cancer. I had polyps found at initial screening at 35 years old. Removed and fine. 2 Uncles Colon Cancer. 1 Aunt Breast Cancer and Colon Cancer. 1 Uncle suffering Kidney (cancer) failure now. Two 1st cousins with BC. Both had identical breast cancers based on pathology, diagnosed at 52 and 54 years of age within years of each other. One died. One is a 10 year survivor.

Father had Prostrate Cancer at end of his life. Lived to 93. Longevity in this family as all lived in 87-105 years old 1 Aunt Breast Cancer. 1 Aunt Colon Cancer. 1 Aunt Uterine Cancer. One 1st cousin with BC diagnosed at 57 in 2012. (daughter of Uterine Cancer)

They want to remove all the affected area and make sure that something worse is not hiding in there near the grouped Micro Calcifications. I am willing to wait to see results of the genetic test. They have suggested lumpectomy and then chemo to try to prevent cancer. Based on all the studies that I have read due to the association of calcifications in pathology, the chance of recurrence is 30 % but the chance of progression to Breast Cancer alone without the family history or dense breast, etc is 50-60 %. I am thinking that I might be willing to consider a mastectomy. I know it may seem radical but I have an 8 year old child and I have been through Stage IV with my own mother 2 separate times, once as a 13 year old and once as an adult. I also have seen that they have now added the Benign Breast Disease to the High Risk Calculator. All these signs keep pointing to being vigilant about my research and making the decision that suits me, my family and my life.

That is why the genetic testing is important to me because it will aid me in making my decision, not a doctor who knows nothing about me.

The lady said, "The good news is that the biopsy does not show cancer but you have Atypical Ductal Hyperplasia Associated with Micro Calcifications. You don't have cancer yet and you can make the choice that is best for you while you still have a choice."

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Oct 20, 2019 11:37PM - edited Oct 20, 2019 11:38PM by Utahmom

This Post was deleted by Utahmom.
DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Oct 20, 2019 11:38PM Utahmom wrote:

I am so sorry for the loss of your mother. Thank you for sharing about this testing. My Doctor and I did not discuss this one. My mother had Stage IV Skin Cancer and Stage IV Colon Cancer and Macular Degeneration. Her family had sister with breast and colon, two uncles with colon, one uncle with Kidney and my Grandfather of lung. I will check into this testing. Thank you again.

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Jan 2, 2020 11:35PM - edited Jan 2, 2020 11:36PM by Momcat1962

recap; I'm sorry I'm not on here much. I think and pray for everybody on this forum and on this site. I had a typical ductal hyperplasia removed in July 2013 via surgery. I go every year for a mammogram, and ultrasound sometimes, and have an MRI yearly. My insurance refused the BRCA test two or three years ago. I had my mammogram and MRI done a couple weeks ago And today I received a phone call saying the radiologist has referred me for genetic counseling. She said counseling. I told her that insurance refused my BRCA previously and she said they will not turn you down now. I was kind of stunned because they sent me paperwork saying that my tests were benign. So confused, that I didn't ask her why I was referred. She simply told me due to cancer history which is too great aunts with breast cancer in both of my grandmothers died of colon cancer.Has anybody had genetic counseling suggested for atypical cells?

JER. 33:3 ...ADH Surgery 7/29/2013 Lumpectomy: Left
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Jan 10, 2020 08:18PM TrueWarrior wrote:

I am BAP1 positive. I had melanoma 12 years ago and am currently fighting breast cancer. Due to the lack of information long term on BAP1, choosing treatments has been difficult

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Jan 11, 2020 12:36AM Moderators wrote:

Welcome, TrueWarrior. We're so sorry you find yourself here, but we hope you find this to be a supportive place. Hopefully your post reaches someone else in this community who has the same mutation - we know how helpful it can be to hear from others dealing with what you're dealing with!

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Jan 16, 2020 01:22PM carissaminnow wrote:

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Jan 31, 2020 04:32AM mell0 wrote:

Hello All!

Due to my family history, I decided to take the BRCA2 genetic test. My father passed away and had Stage 4 Rectal Cancer. My mother was diagnosed with Stage 4 Uterine Cancer.

In early 2019, my result came back BRCA2 positive with two unknown mutations. I was 33 years old. Since then, I have been under surveillance. I was able to receive early breast mammogram and MRI screenings. With MRI, they were able to detect my cancer.

As for payment, I researched how much a typical genetic exam with and without health insurance. I had high deductible, and I paid around $500. I had an HSA account, and that helped a lot with the decision of getting the test done quickly.

My sister got tested first after my mom was diagnosed, and her result came back BRCA2 positive. She encouraged my mom to get hers done as well, and it came back BRCA2 positive. I was the last one to get tested and came back positive.

I don't know anyone in my family who has or had breast cancer. I am the first one in my immediate family.

I definitely recommend for everybody to get tested in their early 20s. I was feeling helpless after my parents' diagnosis, and the fear of cancer was increasing. My insurance would not pay for the screening as preventative if I didn't meet their criteria. Due to the result of genetic test, I was able to get the screenings and was able to find out about my cancer at age 33. I am thankful to find out now instead of later. In a way, genetic testing has helped to save my life.

I hope one day, genetic testing will be offered as part of our preventative and annual screening or free.

I wish you all the best with your journey! Smile

Be kind to yourself and others. Dx 10/2019, DCIS, Left, 4cm, Stage 0, 0/5 nodes Surgery 12/17/2019 Mastectomy: Left; Prophylactic mastectomy: Right
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Feb 19, 2020 01:18AM Shannon28704 wrote:

My polygenic risk score was greater than 50%. I did not test positive for a specific genetic mutation but I had SNP's that have been identified as significantly increased risk for breast cancer. I also have had a lumpectomy due to early radial scar. I have category D dense breast tissue. My maternal grandmother and great grandmother both were diagnosed with breast cancer before age 40 and both died of metastatic breast cancer in early 40's. After length discussion with my genetic counselor, oncologist and family, I decided to do prophylactic bilateral masectomy with reconstruction. I have two children with Autism as well which is another reason why I felt strongly and confident that my decision was necessary to ensure I remain healthy for my children. Since I turned 40 and had my first mammogram which led to my first abnormal mammogram which led to a lumpectomy due to early radial scar, every mammogram I have had since has been abnormal or required further imaging and recommendations of 6month follow screenings with mri imaging and ultrasound. My bilateral masectomy and reconstruction is being covered by my insurance due to my results and history both personal and family.

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Feb 19, 2020 09:56AM farmerlucy wrote:

shannon - is the polygenic risk score the same thing as lifetime risk? Also interesting about the categories for breast density. My daughter, now thirty, just started screening. Ultrasound was clean, radiologist said no mammograms until 35. It’s a crap shoot. Good luck with your surgery. I never ever ever had a second thought about the preventive surgery. Just should have done it when I first thought about it.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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May 21, 2020 09:12AM Vics1968 wrote:

I was diagnosed with right breast cancer in June 2010 at 42. No breast cancer in the family. Although my grandmother died of melanoma, grandfather stomach cancer and my mother ovarian cancer. My cancer was a grade 3, multi centric, estrogen positive, her2 positive. Right mastectomy, chemotherapy, radiation, immune therapy for her2 for 12 months, hysterectomy and ovaries removed. Commenced on tomoxifin and arimidex. I have been on arimidex the last 6 years. I undertook genetic testing in 2014. For all tests available at the time. BRCA 1, 2, lynch syndrome and was informed I was negative. I then participated in variance in DNA study in 2014 to look at my DNA in Australia. This year 2020 in January I received a telephone call from the study to request review with a genetic counselor. I was informed that I have the check21100delc variance. I have been having annual oncologist review, annual ca 123 and mammogram and ultrasound. I have been healthy the last 10 years. I also had deip reconstruction to my right breast after 5 years. I am due to see my oncologist in about 3 weeks. I have a few questions that you may assist

1. Has anyone found studies advocating for lifelong arimidex

2. I am aware that bowel cancer is a higher risk What about kidney cancer?

3.Has anyone had reoccurrence with check2 cancer?

4. Maybe a dumb question but If it was bowel cancer would the cancers features be that of an estrogen driven cancer or adenoma type cancer?

5. Would secondary cancer to breast be bowel or two completely cancer incidents

6. Wouldbreast cancer in each breast be the same type eg her2 positive estrogen driven or can the second breast be triple negative breast cancer

Interested in comments

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May 21, 2020 04:13PM Moderators wrote:

Dear Vics1968,

Welcome to BCO. We are glad that you reached out for some help with your questions. This particular thread is asking for stories and we appreciate your sharing your own. There are other topics on Check2 and one in particular is for those already diagnosed with cancer. You might find others to correspond with there. There are actually a few Check2 topics around the discussion boards. You can use the search function in the blue tool bar to find others. Let us know if we can be a help. Keep us posted on what you learn.

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May 21, 2020 06:43PM BlueGirlRedState wrote:

Before genetic testing, check with insurance. Mine was denied and is currently being appealed. Insurance felt it was not relevant to diagnosis or treatment. My DR ordered a genetic test specific to BC last September after BC diagnosed for the 3rd time. She felt each occurrence was a new BC rather than recurrence, but when pressed, admitted there was no way of really knowing. No family history of BC. Over 20 markers checked, none found. Dense lumpy left breast, normal right. 52 years old first diagnosis, 61 years old 3rd diagnosis. 2009 Left lumpectomy, radiation, tamoxifen 5 years even though I was postmenopausal. 2016 Left, chemo, bi-lateral (my choice, no reconstruction), anastrozole initially, switched to tamoxifen because of joint issues. 2019 Sept R axilla BC. Ibrance and Arimidex. Tumor has shrunk from 2.3 cm to 7mm. Hoping it shrinks into oblivion and never comes back,

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Jun 20, 2020 08:05PM - edited Jun 20, 2020 08:06PM by Violina

My mother passed away of uterine cancer in May of 2019 after she was diagnosed with ovarian cancer about 10 years earlier. She had a partial hysterectomy done when she was first diagnosed, but was warned that there was a likely risk of it returning. About 10 years later, she had symptoms with pain and abnormal bleeding, so after visiting her Dr, she was told that the cancer had returned. She underwent radiation/ chemotherapy, but that led to kidney failure, which meant she could no longer undergo therapy. Unfortunately, i had zero contact with her for about 13+ years, so most of her cancer related information was relayed to me by siblings much later, before I ended up seeing her in ICU for a few weeks (end of 2018 - early 2019) and then helping care for her during her in-home hospice months (2019).

My grandmother passed away due to breast cancer when she was 24, which is very young.

I decided to take a genetic test after my mother's passing, since cancer seemed to be a curse for our family. We are of Mexican heritage and I know that the BRCA1 can be an issue. My genetic testing results were discussed yesterday and I am BRCA1 positive. My genetics counselor gave me the run down; 60% chance of developing breast/ovarian cancer, reducing the risk if I have surgery to remove ovaries, fallopian tubes, double mastectomy possibility, prevention methods, etc. I have to say I wasn't too surprised, but it did sadden me that the mutated gene has a 50/50 chance of being passed down to offspring. Natural born children are now out of the question for me, unless I undergo special procedures to remove the mutated gene from the embryo, but I have no interest in that. I asked if the test is run twice to make sure that the results are accurate and I'm pending a reply since they need to look into that. Since BRCA1 mutations are so common in people of Mexican heritage, they likely figure the results they receive the first time are accurate, but I want them to double check anyway.

Given my young age of 36, I am highly considering removing my ovaries and fallopian tubes, then take preventative measures for my breasts and take it from there. I already have a non-cancerous cyst in one of my breasts, so already keeping an eye on that. If my uterus is affected down the road, I'll remove that too, but we'll see.

I'm also currently pending an appointment with an OBGYN due to abnormal bleeding. I have had ovarian cysts for about 4 years, but this time, the bleeding hasn't stopped and it's been over a week, so I'm a bit concerned.

I'll keep you posted as I continue to get information.

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Jun 20, 2020 08:32PM Moderators wrote:

Dear Violina,

Welcome to the BCO community and thanks so much for sharing your story. We hope that you will find support and helpful information here as you progress through your journey. Take a look at this page with links to information for people like you are considered to be at hight risk. While this topic in particular is asking for members to share their stories there are other topics of varied interest for those like you are dealing with risk factors. Let us know if we can be of help as you navigate your way around. Again a warm welcome to you.

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