Genetic testing after LCIS diagnosis

NicolaSue

Hi All,

I'm having BRCA1 and 2 genetic testing after a LCIS diagnosis earlier this year. It's taken a while to get to this point. I have 2 cousins within same branch of family who had breast cancer so I was borderline in terms of eligibility for testing. I haven't come across anyone yet who has had genetic testing after only LCIS. Anyone here done so?

MelissaDallas

I did. I was tested for BRCA, CHEK2, PTEN and another I don't remember. I was negative for everything. I was tested mainly because I had ovarian cancer & my dad's mom & sister both had colon cancer

leaf

I did too, and got tested for about 10 or 15 genes. This was about 10 years after my initial LCIS diagnosis. I did test positive for a gene I had never heard of; it is a 'moderate risk' mutation of which there is not much info. At least 3 cousins had the same mutation in the same gene. This was unexpected because the affected side of the family only had a grandmother with breast cancer; the unaffected side of my family had about 3 aunts and a cousin with breast cancer. My genetics counselor said she checked the guidelines and my cousins could count toward my risk.

LoveT

That's great that you all were able to get the testing at some point after your LCIS diagnosis! My Dr. did do a Gail Model screening for me after my 2nd LCIS Lumpectomy. But I was at the "eye roll I'm over this stage." Because once again, I was thrown into a high risk 25% of possibly getting invasive bc by the age of 90. Everything about this diagnosis from biopsy to 2 Lumpectomies has put me @ some sort of 20-30% chance of something worse. I'm adopted. So I have no way of knowing what I'm up against. I'm considering getting BRCA testing independently at some point. For now, I'm just going to live in gratitude that I didn't have to go through anything worse than this!

pegasus68

After my LCIS diagnosis I was told I wouldn't qualify for genetic testing with only a cousin and aunt with breast cancer. After my sister was diagnosed with DCIS, I was approved for testing. It came back negative for all genes tested.

NicolaSue

I'm guessing there are differences in approach here between one country and another. Here in the UK I've been offered testing solely because I've had LCIS and two cousins with breast cancer. The testing is only for BRCA1 and 2 however. It is fascinating - some of my friends have reacted in horror that I'm being tested as in 'you haven't got anything so wait until you have.' ! And yet I have 6 children so I consider it a responsible thing to do.