Why high risk and how often are you checked?

PeaceChild

Why high risk and how often are you checked?

PeaceChild

I was 32 when cysts were removed and ADH was dx in surrounding tissue. My breast remains full of cysts. I did not do Tamoxifen, on advice of Cedar Sinai (they frowned on it's usefulness for my age/case and affects on my mental state--I struggle with chronic depression).

I have ultrasounds and an appointment with my oncologist 2 times a year to keep an eye on things, on Cedar's advice again.

I've had a lot of biopsies the last few years since the ADH was found. My breast has a lot of abnormalities. About to have another biopsy for a nodule that may actually be my first solid, if it turns out to be such. It looked like a possible solid on the ultrasound.

My family BC is not close to me, it's my maternal grandma. So far my mother is fine, so there may not be any genetic factors, but I do have the early period risk--for whatever that's worth.

Just wondering why others are high risk, how old you are, and how often (and how) you are checked? And how long you've been doing that routine.

I am so tired of the rollercoaster of this. I know it's better than being diagnosed with cancer, and I am a lucky girl. But it's an emotional rollercoaster I can barely handle anymore.

sharebear

Not to be the downer here but my maternal grandmother was the one with bc. I am BRCA 1 + and Ashkenazi Jew which I inherrited from my grandmother/mother. Although my mother carried the gene, she never developed bc. I did at age 32 and again at 44. It seemed to skip her generation and hit me twice so far.

Just because of my grandmother, they started checking me at age 30 and annually after that.  The funny thing is that no test found my cancers, I did. Self examination. Both times.

Sharon

PeaceChild

Sharon, what age was your grandmother when she was diagnosed? My grandmother was in her late 60s, so doctors keep telling me hers is probably not going to show up genetically in me. But what happened to you makes much more sense to me. In my mind it has everything to do with her, but my doctors don't think so.

Unfortunately (fortunately?) I'm very, very small breasted (34A) and my left breast is quite literally made up entirely of sub-centimeter cysts and centimeter cysts, so I would have a hard time finding a cancerous lump myself. Although, for the latest test, my dr. seemed to know from the physical exam that one was not right before ultrasound revealed it wasn't right. BTW my right breast is perfectly normal, no fibrocystic disease at all. My doctor thinks this is unusual.

Now just waiting on the biopsy.

Sharon, did you pay for genetic testing? Would you mind messaging me about it? Your story intrigues me because no one has ever told me genetic breast cancer can skip a generation.

leaf

Just because a person is BRCA positive does NOT mean it is inevitable that they get breast cancer and/or ovarian cancer.





"The estimated lifetime risk of developing breast cancer for women with BRCA1 and BRCA2 mutations is 40% to 85%. " http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page2#Section_627





This means that about 15-60% of women who have BRCA1 and BRCA2 mutations will NEVER get breast cancer in their lifetime. Maybe her mother had the BRCA mutation and transmitted it to her daughter, yet never developed bc because 15-60% of women with BRCA never do develop breast cancer.

otter

"...no one has ever told me genetic breast cancer can skip a generation."

As leaf said, not everyone who inherits a mutation in a BRCA1 or BRCA2 gene will get BC.  An inherited mutation increases the risk substantially, compared to women with "normal" BRCA genes, but it isn't 100%; so it's possible for the occurence of BC to appear to "skip".  The inheritance of the abnormal genes does not "skip", however.  If a woman has a BRCA1 or BRCA2 mutation, either one or both of her parents has that mutation, too.

One other thing to realize about BC that's associated with BRCA is that it usually requires two mutations in the BRCA1 genes (one in each gene) or in the BRCA2 genes, before a person develops BC.  At least, that's what the genetics counselor told me last month when I had my counseling session.  The "normal" BRCA genes encode "DNA repair enzymes" that cells use to fix mistakes and glitches in their DNA.  If unrepaired, the mistakes can lead to cell death or uncontrolled growth (= cancer).  Each cell has two copies of the BRCA1 genes and two of the BRCA2 genes.  When one of the pair is abnormal because of an inherited problem, that leaves only one copy to make the necessary repair enzyme.  If that remaining gene gets damaged, the cell has no way to make the DNA repair enzyme and it can't fix the mistakes.

So, someone can inherit an abnormal (mutated) BRCA1 or BRCA2 gene and still not get cancer, if she is lucky and the other member of the pair remains undamaged.

This is the short version of the story.

otter 

lvtwoqlt

My family history is as such, my mother's sister died from Ovarian Cancer at age 37, my mom was dx with BC at age 57 in 2001, I had my first abnormal mammo/biopsy at age 44  in 2005 resulting in ADH dx in the left breast. My mom had the genetic testing done at the time of her dx and she was negative for either of the brca genes. I was put on a 6 month regement of mammo and follow-up with the surgeon. 18 months after the first abnormal mammo, I had another abnormal mammo on the right with biopsy showing ADH. I was put on tamox and suggested by surgeon to consider preventive bilat mast. 6 months after 2nd biopsy, last April I failed the third mammo on the right again, biopsy showed DCIS. I opted and had the bilat mast last June.

About the genetic testing, My mom was told that it was best to first test the person with the bc if possible, that would identify the area in the DNA to look for the mutation in their offspring.

Sheila

flower123

Peace--I am high risk b/c of ADH. I get checked by my BS every four months.