Topic: Any BRCA carrier who lived a long life with no cancer?

Feb 23, 2012 10:06 PM Sahar wrote:

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.

Mar 14, 2012 09:51 PM SAMayoFL wrote:

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

Mar 17, 2012 09:06 PM kerri72 wrote:

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?

Apr 14, 2012 07:43 AM dj59 wrote:

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

Apr 14, 2012 06:12 PM dj59 wrote:

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

Apr 17, 2012 09:42 AM dj59 wrote:

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. 

Apr 17, 2012 10:04 PM dj59 wrote:

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

Apr 26, 2012 04:25 PM jenlee wrote:

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. 

May 19, 2012 08:54 AM DebFox wrote:

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!

May 27, 2012 01:18 PM, edited May 27, 2012 01:23 PM by BRCAmomof2

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.

Jul 16, 2012 08:42 PM AG42 wrote:

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.

Jul 17, 2012 10:10 AM kerri72 wrote:

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.

Aug 5, 2012 10:21 PM SAMayoFL wrote:

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

Aug 6, 2012 01:08 PM exbrnxgrl wrote:

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

Nov 21, 2012 09:29 PM kerri72 wrote:

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!