1 in 4 odds. Anyone have experience?

K8orade_ · May 2015

I'm waiting for my genetic counseling appointment and of course I'm googling everything I can thing of

Here's my history:

I'm 30 and have no bc, but a history of cervical precancerous cells with surgical removal, and a biopsy which showed fibroadenoma, and surgical removal of that as well. I'm also an X-ray tech and although I practice safe radiation protocol, there is a margin of error.

My mother was diagnosed with bc at 49 and had a bilateral mastectomy.

My maternal grandmother had bc in her 70s

My paternal grandmother had bc in her 70s, and my father had a carcinoid of large intestine (colon) in his 60s.

According to the models online, my risk falls around 22-26% lifetime and 0.9% in the next 5 years. (Assuming I don't have any gene mutations of course). Can anyone tell me their experience with this type of "odds"?

What did you do

vlnrph · May 2015

It would probably be helpful if one of the diagnosed women would have genetic counseling with you and be tested first. Perhaps your mother is the best candidate, unless your grandmas are also alive. There is so much out there beyond BRCA 1/2, you are wise to be seeking professional guidance. Are you of Ashkenazi Jewish heritage?

My situation was different which means I can't really answer your question but wanted to make the suggestion above. Once a mutation is detected in a family, perhaps from a broad based panel, others can focus on that defect and not always undergo the full routine which may be less expensive. Hoping you get information that will clarify your options.

PistolMama · May 2015

K8orade_, I have a similar lifetime risk and my breast surgeon put me in the high risk program. Do you have something like that available in your area?

K8orade_ · May 2015

Hey PistolMama!

Yes, we do have a high risk program here. I am still awaiting my genetic counseling appointment (phone interview this morning- so nervous!) so I guess we will see what they say. I'm certain they will recommend high risk screening at the minimum. I just got a copy of my mammo report (had one in 2011 even though I was only 26 due to suspicious finding) and it reads "very dense homogeneous tissue". GREAT. According to my research that alone increases risk to around 1.5 the "average risk" of 12%. Which means that would bump my number up to 36-40% factoring in the other risks above. If my number is that high I will be having a pbm for sure :

Ddw79 · May 2015

what vln said. I had genetic testing back in 1992 due to family hx. Took almost two years to get results in study . Now that is what I call a long wait. I am Ashkenazi Jewish.... Completely . We needed to test other family members too to have greater confidence in outcome. I am high confidence negative for BRCA 1. Others in family most definitely positive . Shit though because here Inam anywa

K8orade_ · May 2015

Just wanted to update everyone. I saw the GC last week. She estimated my lifetime risk to be 26.3% based on history alone. That's double the average risk or 1/4 instead of 1/8. My mom (who had bc in 2008) is refusing to test so I will be going ahead with the testing myself.

For now since I'm in the "high risk" category I'm eligible and have set up a schedule for high risk monitoring, alternating mammos and MRIs every six months.

I guess we will wait and see what my testing shows. For now I'm just confused because I feel like my risk percentage is too low to warrant surgery, but too high for me to not go crazy screening every six months for the next 30 years.

Ddw79 · May 2015

Too bad your Mom is refusing. Adding her to testing mix would help you a lot.

Your status would be " informed."

1 in 4 odds. Anyone have experience?

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