Any BRCA carrier who lived a long life with no cancer?
I am just wondering what is the chance of not getting breast/ovarian cancer while being a BRCA carrier. I read it every where that a BRCA carrier has 85% chance of getting breast cancer and 40% ovarian cancer but this is something that we read in books and articles and hear from doctors. BRCA was discovered not too long ago so I am not sure that these statistics are really true in real life. Any opinion? Do you know anybody who is a BRCA carrier but lived a long life with no cancer?
Comments
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If my mom is my carrier (It's not my dad he's been tested) Then she is 60 with no sign of Breast or Ovarian cancer. I am 28 and I have stage 3 breast cancer BRCA 2+. My mom is one of 7 siblings, 5 girls, two of the girls have had cancer, one passed from pancreatic cancer a few years ago. Don't know if this is "old" but considering my age, if I did get it from my mom I am really happy for her!!
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MiniMacsMom, thanks for your reply. My mom is BRCA1+ and she was diagnosed with DCIS when she was 57. She had her ovaries removed when she was 52, she did it just to be on the safe side, at that time she didn't know she had the gene but she had lost her 2 sisters to ovarian cancer, that's why she decided to remove her ovaries. So she didn't get hit with ovarian cancer until she removed her ovaries at 52 and she didn't get hit with bc until 57. I am not sure how some carriers are affected at early age and some at older age. Maybe these genes are different from each other as far as strength. Maybe within BRCAs, some are stronger and hit women at early age and some are weaker and affect women at older age. Etnicity may play a role as well. I hope your mom never deals with this. I hope you are doing well too. I don't know if I am a carrier yet. I haven't been tested but thinking about it. I will be 40 in November.
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My grandmother was a BRCA2 carrier and lived to be 93 with no breast or ovarian cancer. She developed an elderly-onset leukemia at the age of 91. My BRCA2+ mother is 70 with no breast cancer (she just had ovaries removed and they were clear too). I am BRCA2+ and was diagnosed with BC at 37.
One thing my mother and grandmother have in common is they both had pregnancies by age thirty, while I've never had a pregnancy. In my family this seems to play a role because my grandmother's BRCA2+ sister died of breast cancer around age 50 and she never had children either. So in a way I wish I'd had biological children, but if I had, I might've passed down the bad gene to another generation.Ugh.
It seems that BRCA plays a different role in every family - some of the mutations seem really destructive and others not as bad. Both my grandma and mom did lead healthy lifestyles in terms of not smoking/good diet/not overweight, etc. so that probably helped keep them cancer-free.
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Kerri,
My story is similar. My mom is BRCA2+, is 66 and in really good health. She is a very young 66 year old. She has also controlled her weight and eats a failry healthy diet. I was diagnosed at 44. I had a child when I was 20 and 25 so that doesn't play a role in my family. Thankfully, my daughter is negative!! My mother had an emergency hysterectomy when she was about 25 and we have wondered if her lack of hormones played a part in her not getting breast or ovarian cancer.
I wish you all the best!
Susan
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My mother is BRCA2+ and had no sign of cancer but had a PBM at age 68 when she found out her genetic status. She may well have gone through her whole life without a cancer scare. I am BRCA2+ but had stage II BC at age 45. We are both active, both have two children. I can't think of any obvious reason why I developed BC and she did not.
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Susan, I'm so glad for you that your daughter is negative! All the best to you too!
Mamaoftwo, it's so strange how some of us BRCA+ women develop cancer and others don't. I wonder if environmental toxins play a role?
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Hi everyone....My great grandmother died of BC at around 40 apparently. My grandmother died at around 74 without having cancer. My mother had it at around 60, my sister when she was 37, and I had it last year at 52. I also had an aunt on the same side who had BC. In my family, BC has not killed anyone in about 100 years. I was tested and am BRCA2.
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Hi Ladies, Thank you for your stories. I am now in my second round with BC. First time at age 39 Right breast, DCIS, Stage 1, node negative HR/PR+.....Now, at age 52, back at it in the left breast this time, IDC, Stage IIa, node negative, HR/PR+ HER2-
My mum has now had it twice as well, age 59 then at age 75. (both DCIS stage 0 found very early), aunt had it at age 80....both still going strong. My mum's other sister had what began as cervical cancer (it's rather shrouded in mystery actually...), it ended up spreading to bones and she died at 48. An awful fate. Not sure about my great grandmum...think she might have had some sort of cancer as well.
My MO has recommended that I be tested for BRCA1, 2 I have set up the genetic counseling appointment. My mother was asked to be tested years ago and would not. I do fear for my 25 year old daughter, my sister and niece etc...so I figure, knowing is better than not. My MO said that if I turn out to be positive (he is thinking BRCA2), that gives my daughter a 50/50 chance of having the gene.
In our family, it seems to be a less aggressive type, but still reared its ugly head twice with both my mom and me....I would rather not deal with it again, nor see my beautiful daughter deal with it at all....
My mother did not handle this news well,when I told her I was going to be tested...she somehow has taken it personally and feels responsible. I don't know what I will tell my daughter or my sister as I don't want to panic them, but I also want them to be armed with the information. I don't want to see them go through this hell, if I can help them at all.
How did others react around you (mothers, sisters, daughters)? I would rather KNOW for myself. If I am positive, I will probaly opt for a BMX (at this point I have had lumpectomies) and have ovaries removed as well because I have had a scare there too....
Would love thoughts on this. Thanks!
Dorrie
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Hi Dorrie,
My parents were inconsolable when they found out I was BRCA1+. They felt such guilt that "one of them put me through so much". In that vein, they both refused to be tested. They did not want to know "who did this to me". I had no family history of BC at that point that might lead to which parent I inherited this mutation from. I was worried for my mom and encouraged her to test to no avail.
Approximately one year from diagnosis, a paternal cousin was diagnosed with BC and matched my mutation. The mystery was solved.
I have two teenage daughters, 17 and 15. They are not aware that I am BRCA1+. They have clinical breast exams annually and the oncologist does not recommend more aggressive screening until they are in the early 20s. My husband and I agree that nothing is to be gained from them knowing at this point. There is nothing more to be done, and they cannot be tested until they are at least 18. We think it is a heavy burden to place on our daughters at this stage of their life. Knowledge is power, and I'm thankful every day that my oncologist tested me. There was no compelling reason to do so, other than I was 43 at diagnosis. My daughters will not have to walk my path (BC, BMX, hysterectomy, chemo) because we can be proactive and take measures to hopefully prevent BC in them if they are positive.
Once the news broke about my BRCA1+ status, my father's sisters and brothers were tested. 2 of the 6 siblings were positive. Only my cousin and I are positive from those siblings. I pray every day that my girls are negative, but if they are not, we will do whatever is necessary in the years ahead.
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de...thank you so much for your story and thoughts on this. My maternal cousin is considering being tested as well. She has not had bc, but is the same age as I am (52) and her mother has had bc...
As for my daughter...at least she may be armed with the information. At 25, she certainly has to make her own call...my MO was saying things like...if I am positive and she is tested and is as well...she should consider having any children before age 30 and having a BMX at age 35...that is awfully drastic and I certainly would not want to frighten her with that scenario. So...one step at a time. Find out if and what we are dealing with and go from there. I really would love to save my baby girl from going through this mess even once...let alone twice.
Thank you for your take on this .....
Dorrie xo
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My mom is my carrier (BRCA2) and has not had any type of cancer at age 69. I was diagnosed last year at age 39. I had a child when I was 19 yrs old and breast fed (nursed) for a year. Go figure.
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Lori, yep...
Went through another uncomfortable conversation about being tested for BRCA1 & 2 with my mother again this AM. She almost seems angry at me for pursuing it. And yet...my oncotype dx already came back with "a variant of uncertain significance" on the BRCA testing that they performed. Great...vague enough to be disconcerting. I have an appointment with a genetic counselor on April 30.
She and my sister seem to prefer to bury their heads in the sand. My sister has not experienced this hell...I am on my second walk through this thing...I prefer NOT to have a 3rd pass...so if I can get as much data as possible to determine what will give me the best odds, I damn well want it!
I am only 52, I hope to have another 30 years in me....I don't want each decade of that 30 years marred by more breast cancer or ovarian cancer....if these are the areas where my body wants to make cancer cells..I need to do what is best for my body...that is arm myself with information and make decisions to be proactive.
I cannot help being a bit angry with my family for being so unsupportive of my decision.
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Dj59 - You're doing the right thing, though I'm sorry it's causing so much frustration.
I tested positive for brca2. I'm 43, and Ashkenazi Jewish, so that was enough for the insurance company to cover it. My paternal great-grandmother died of ovarian cancer and paternal great-aunt died of breast cancer in her 50s, so we assume that's where the gene comes from. However, my mom, whose family isn't Jewish, has a sister who had DCIS about 5 years ago. Despite my dx, and my aunt's, the insurance company refused to cover the test for either of my parents, which is frustrating because we'd like to confirm what side it is on for the sake of other family members. My sister tested positive as well, but she's had a child, so hopefully that reduces her risk.
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Thanks Rachel.
I understand that knowing you have the gene can cause another set of issues. But I have always been a person who would rather know what I am up against.
I really don't want to go another round with bc or end up with ovarian cancer...proactive is the plan!
Thanks for your take on it Rachel. I do appreciate it!
Dorrie
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Yes Dorrie! I agree. We must look on the brighter side (sometimes hard to do). I do not want to have another round of bc either, or have an ovarian cancer diagnosis to boot!
I hope to hear more stories though. I'd like to know that long term survial is out there.
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My sister's best friend is positive (not sure if 1 or 2). She is 50 years old, has not had surgery and doing fine. My sister said she is very vigilant about it, but not sure specifically if that means more mammograms or what...
Rachel, I can't imagine an insurance company not covering this (especially for your mother), I'm Ashkenazi Jewish on one side and had a great grandmother who I was told had some kind of cancer. That seemed to satisfy them.
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I'm BRCA2+. My Dad died at 82. He did have lymphoma at 80, but was cured of that. Don't know if that is BRCA related. My Mom is 85 going on 86 and is healthy. The only other cancer has been a cousin on my Dad's side. She had hodgkins lymphoma as a teen (some 50 yrs. ago) and then developed BC. She has passed. But we don't know if the BC was caused from high doses of rads. when she was a teen. No one else in the family wants to get tested. I'm thinking it's from my Dad's side, but all my cousins and aunts are fine. So, I guess folks can have a mutation and it doesn't express itself.
Rachel
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My mother is 76 years old. She just found out that she is a carrier. Both of her sisters died of ovarian cancer and she had 2 aunts that died of ovarian cancer. She did have hysterectomy about the age of 45 due to fibroid tumors. No cancer!
I have just been diagnosed with breast cancer. And all 3 of my daughters carry the mutation. But my mother is alive and doing well. She also did not use any HRT, I have. My tumor is ER+.
Hope this helps!
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My mom (BRCA 1) was 55 the first time she was diagnosed with triple negative. We believe her grandfather passed the gene to my mom's mom, (who died of ovarian cancer when she was 37), but he never had any type of cancer. Died in his late 70's, something to do with his heart.
Edited to add: My mom did have a hysterectomy when she was about 46 or 47 because her sister had been diagnosed with ovarian cancer.
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No one in my family, unfortunately, that has tested positive has not had cancer. I am the first member to have PBM. Over at the FORCE board there is a similar discussion about age.
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I am brca2+. Came from my mother's side. My mother and 2 of her sisters had BC, all in their 50's. Out of their combined 9 children, 5 of them girls, 2 of us have had BC. I am the youngest of the 5 females. My mother had a very aggressive cancer and did not survive long after discovery. One of my aunts simply didn't get treated. The remaining aunt had a 2.5 inch tumor by the time she had a masectomy (late 1970's) and lived til she was 80. She died of bladder cancer, which is neither related to her primary or brca2. One remaining sister, presumed not brca2+, lived til she was 95.
Their father, the presumed carrier, died in his early 40's of "stomach cancer." I think it could have been pancreatic cancer. It is only a guess it came from their father's side as their mother and her sisters all had cancer,in their 70's, but "colon cancer." Two of their daughters (my mother's cousins) had BC. It's all very confusing.
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My mother is an obligate BRCA2 carrier who is currently 92yrs old with no known cancer, she had four children and smoked into her late 40s. My brother, a carrier, had a malignancy at 12 weeks of age, but has survived to 64yrs inspite of a very unhealthy life style. My sister who has always lead a healthy life style was diagnosed with an aggressive BC at 38yrs after two children. Of my mother's two sisters, one, an obligate carrier, died from a primary BC at 29yrs, her second daughter was only 16mths. The other sister bore two children and had one miscarriage. She has had primary colorectal cancer at 65yrs of age followed by four primary breast cancers over the ensuing 30yrs, she is now almost 98. She had a lumpectomy at 94yrs and a mastectomy on the remaining breast was discussed when she was 95, but was eventually decided against. She has not actually been tested for the mutation, but the multiple primaries and fact that her daughter was diagnosed with BC at 47, it seems highly probable that she too is a carrier.
There are very many cancer cases in our extended family, some occurred relatively early in life, others were very late in life (mid to late 90s). There are a number of cases of extreme longevity in the affected family branch, which begs the question whether an inherited defect in one of the repair pathways has lead to evolutionary selection of counterbalancing repair mechanisms elsewhere?
Personally I believe much effort should be put into researching the long-lived carriers, they are the key. It does not seem credible to me that my mother experienced such different environmental, hormonal or pathogenic exposures to her two sisters that none of her cells ever became cancerous. It seems more likely that she has a subtle difference in her genetic make-up which has lead to improved immune surveillance, such that any cancer never got a hold and became detectable. We need to find out what that difference is and see whether it could be more widely protective for other BRCA2 carriers.
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I have a variation in BRCA1 of 'unknown significance'. But, my oncologist, who is also a genetics specialist said that he regards me as being full BRCA 1 + due to the type of cancer etc. Unfortunately, my sister / nieces cannot be tested because of my 'unknown significance' status. I was diagnosed with TN when I was 45 years old in Sep 2009. I had the tumour removed in Jan 2010 after neoadjuvant chemo (nil pathological response). By Summer 2011 I had pain in the other breast and another BC was found in Oct 2011 - this time DCIS 4cm grade 3 (not detected by mammogram or ultrasound). Mum had ovarian cancer when she was 52 and her sister had BC at 55. Her brother died of pancreatic cancer at 62 and I am currently undergoing tests because of pain on left side and abnormal pancreatic enzymes. I am taking part in the BRCA research in the UK.
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AG42, I couldn't agree with you more. I have to believe there are some other genetic factors that override or compensate for the BRCA mutations in some carriers. I hope there are some good studies trying to find this out.
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Like you Kerri72 I hope that there are some studies out there, but to date I have not come across them. I enrolled my mother in EMBRACE, but in over 8 years there has been no attempt to follow her up and find out what's happened to her. I was told they had no cover for collecting tissue samples, only blood. They do look at possible modifier genes, but as far as I can tell this is a bit of a fishing trip rather than a comprehensive approach.
Would be interesting to know how many elderly BRCA2 carriers they have in their database who have not shown signs of cancer. Many of the earlier studies in the literature did n't bother to look for carriers beyond 70 or 75yrs of age, more recently there seems to be a realisation that BRCA2 cancers can be occurring very late.
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Hey Ladies, I thought I would jump in on this very interesting conversation. At 44, I was diagnosed with ILC. I too had absolutely no family history. The only reason I even agreed to the BRCA testing was because it was covered by insurance. Much to everyone's surprise I am BRCA2+. My sisters and my daughter were all tested and were negative. Initially, my Mom declined to be tested. After a consultation with a genetics counselor she decided to go ahead with the test. She was also positive. At 65 years old she had a prophylactic double mastectomy. She will be 67 in September and is healthy with absolutely no history of cancer at all. Her Mom lived will into her 80's.
I have often wondered how some people are BRCA+ but never develop any type of cancer while others are diagnosed at very young ages and fight various cancers.
Thanks for letting me join in!
Susan
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My 90 year old grandma is BRCA1+ and she was 88 when she was diagnosed with breast cancer. She did a double mastecomy and no treatment and is doing well. My Mom is almost 70, she is BRCA1+ and has had breast cancer twice, but is doing well. I am 48, BRCA1+, breast cancer in 2008. My 22 yr old daughter is also BRCA1+. Breast cancer has hit our family at all different ages, but with my grandmother being 88 before she was diagnosed gives me hope for my daughter.
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Someone mentioned earlier in this thread that their parents did not want to be tested because because they would feel guilty or responsible or passing the gene down. I think that's one of the reasons genetic counseling is important. It helps family members deal with feeling of guilt/resonsibility. Caryn
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I was the first in my family to be tested...I am BRCA2+. My three siblings were tested...2 of them do not have the mutation, 1 does. My sister who is also BRCA2+ had BC around 20 years ago...was treated aggressively..she has not had a reoccurance. I had my ovaries and tubes removed this past May, my sister was in last week to have hers removed but they could not find them..so she has to go back for a full open surgery. YIK
My mom also had BC at around 60...Her mom lived to 72 without having cancer, she died from complications of a fall. We figure the mutation is from my mom's side...but she refuses to be tested. I have read that smoking is preventative for BC if you are BRCA2. Strangely enough, I did not get BC until I quit smoking. My diagnosis was 2 years almost exactly from my quit date. Anyone else get BC after quitting smoking? My surgeon said it is also preventative against cervical cancer...but he said that was no reason to start again lol. Both my mom and grandma smoked...my sis who had BC at 37 never smoked. I think I didn't get BC until I was 52 because I smoked. Sorry if I'm off topic here...it's early lol.
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Wow, isee, that's fascinating. Can you point me to the literature that says smoking prevents BRCA2+ breast cancer? I've never heard of such a thing!
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