Strong Family History and Prophylactic Bilateral Mastectomy

farmerlucy

Trust your gut. Three biopsies in one breast = very busy stuff going on. That w a sketchy family history could be an issue. I had three opinions. The second guy said "You've done all you can do, I'd ignor it." Sorry Charlie - this is my life. The third guy was excellent and gave me the care I should have had all along. 

Don't be afraid to move on. Also you might want to meet with a genetic counselor to have them put a number to your risk.

Me1962

Lucy,

I was tested 12 years ago before I went for my reduction. It was the deciding factor in my decision  to do either a total reconstruction or just reduction. I do not have the mutation. My mother finally got tested 7 years later (she was afraid too due to insurance reasons) and she does have the mutated gene. My sister who had breast cancer at the age of 34 refuses to this day to get tested. I keep telling my sister, you have a daughter, you need to get tested but she refuses. 

farmerlucy

Me1962 - That is a tough family history! Wow. At my urging my DIL sought the advice of a GC. Her Gma was positive for BRCA1 and had recently died of ovarian cancer, and her mom had BC at 35, so we knew that DDIL was at about a 50% risk. The GC counselor met with her, mapped her entire family tree on both sides, then ordered the BRCA test. She, like you was negative. That is a godsend, especially since she has two little girls. The GC said since they knew the mutation DDIL was at risk for, and since she tested negative, her risk was back to that of the general population - about 12%. She is only 32, so she can now rest easier, stop the high risk screenings, and breathe. 

If you met with a GC they might be able to give you a similar assurance, though you do have more risk factors than DDIL, mainly busy breasts and being a woman over 50. 

I would hope someone has spoken to your sister about her ovarian cancer risk. Also, since they knew the mutation that was positive in DDIL's family, the GC was able to order the BRCA test on just a couple of genes for my DDIL and that test only cost around $500.

lintrollerderby and lojo are incredibly knowledgeable with regard to genetic breast cancer risks. I know they'd be willing to help you or your sister with questions.

Me1962

My family tree was traced back to the person who brought in the gene back in 1886, my great grandmother on my mother's side. Since her arrival in the family we have had most every cancer under the sun, each they are slowly discovering as the years go by that are tied to somehow to the tail end of the original gene. My mother and her sisters did the tree for their brother was dying of prostrate cancer at 42. This information was then handed over to the NIH, since that time we do not know what has happen to the information. The cancers range from breast to vulva (basically any given organ someone in our family has developed it).

But as you pointed out, my breast have had now with the most recent biopsies on Monday 7 total- they are busy , my age and to be honest I am tried of the scares. I am tired of the expense. Its like playing Russian roulette without the bullets- just tired. Doctors that do not agree, just aggravating.

As for my sister and discussing any type of cancer, I refer to her as the ostrich. My sister feels there is no reason to discuss such matter nor is there any reason to test . Where as every year I get a vaginal ultrasound since they now feel CA125 is not a worthy test anymore. I believe in being proactive vs having my head in the sand. It is something I have instilled in my 3 daughters- address the issue because it can kill you if you ignore it. My sister does not agree. But in her defense I still feel that it might have to do with insurance companies flagging you. She does not want her children or herself flagged but as I have always pointed out- you had cancer you are already flagged.