brca2 positive & worried

iolanthe

hi everyone & thanks for reading/responding to this!

i just joined this forum, and i learned i was brca2 positive in 3/16. brief background...i was diagnosed with thyroid cancer in 9/15 and underwent a total thyroidectomy. my endo referred me to a genetic counselor due to several factors, including family history. i met with the counselor in 1/16, qualified for the testing to be covered by insurance, and got the wind knocked out of my sails in 3/16 - frankly i thought that if i tested positive for any of the 42 mutations they screened for, it would be for a cancer syndrome that correlated with thyroid cancer. so i had the consult with the counselor and a surgical oncologist, where they talked about all of the screening/prophylactic options i'm sure all y'all are well too aware of. i figured i'd go for the ovary removal this summer/fall - i'm 37 y/o & have a daughter, so i felt more comfortable with that, not so much the mastectomy/reconstruction. well last week i had my first mammogram ever and was told to expect results within 10 days. 2 hours later i got a message in my e-chart that there is a possible mass in my right breast, and this tuesday i'm having a 3d mammogram and an ultrasound done. i'm terrified that there could already be something there & i just didn't know because i'd never been tested! i feel like this whole thing has been an out of control rollercoaster, and i thought at least i had control over if and when i had surgery because my boobs were still healthy - now i'm worried that was a premature assumption to make. i already had cancer treatment - i'm so scared to start this journey again. any advice/words of wisdom/thoughts from those that have been there/done that are greatly appreciated!

farmerlucy

Hello - welcome. Sorry about the call back but I would imagine they are being ultra careful with you because of the Brca2 dx. Be sure to ask the radiologist about your breast density, even if you get all clear something could be hinding in extremely dense tissue. MRIs are the best screening tool for extremely dense breasts.

I would ask your genetic counselor about the typical age of presentation for both breast and ovarian cancer. I know that some surgeons are offering to remove just the Fallopian tubes for a few years and take the ovaries a bit later that way you can stay pre-menopausal for a bit longer. I'm sorry for the life changing news. MY DIL's mom and gma are braca1 but DDIL is negative.

Angelina Jolie had her breast surgery at The Pink Lotus Breast Care Center and it is worth taking a look at that site. Also if you haven't already check out the FORCE Hereditary Breast and Ovarain cancer website.

I'm crossing my fingers and toes than your mammo is just fine. I know you have some tough decisions to make. Take things step by step.

Take care and let us know how things go.

iolanthe

thank you farmerlucy for the kind words!

on tuesday i had the follow-up testing - a 3d mammo & an ultrasound...dense breast tissue but everything looked ok! what a relief! they want to alternate breast mri's & mammograms every 6 months until/whether i opt for the mastectomy. i'm going to osu medical center for treatment - i've had treatment at their james hospital since last year for the thyroid cancer & have had very positive experiences there so far - the physicians/facilities are great, it's right in my back yard, and i like that it's a learning hospital. i'll ask about the fallopian tube removal - it would be great if i could delay surgically induced menopause a while longer!!!

farmerlucy

Super great news! Also excellent screening plan, I'm so relieved for you. Thanks so much for letting us know