ILC with or without genetic testing?

If your insurance will pay for it & especially if you have a daughter, I would go for it.  I did not qualifying, even though my 2 aunts ( only aunts I have ) both had bc, & my mom died of cancer. 

I was only interested to know for my daughter, other genetic tests will be used in the near future, from what I have been told.

Hi Sinclair,

I would definitely consider genetic testing before you decide to do a hysterectomy/oopherectomy. From what I understand, the BRCA mutations are the ones that increase your chances of ovarian cancer - there are other mutations that increase breast cancer risk -- some of which have been identified and can be tested for, others of which have not been identified. Having breast cancer does not necessarily mean you're at higher risk for ovarian cancer - again, a qualified genetic counselor can look at your family history and make some suggestions even prior to testing. 

I clearly have some sort of genetic pre-disposition to breast cancer (pre-menopausal BC in both me and my mom), but there is no ovarian cancer in my family that I know of. I did the BRCA1/2 test, and I am negative, and so for now, have kept my ovaries. I did not do any more extensive testing (I also had a double MX, one prophylactic). I will reconsider an ooph/hysterectomy in the future if evidence comes out that it is really beneficial - or possibly ovarian suppression, but it is not a procedure to do lightly from what I understand, as the sudden, surgical onset of menopause sounds like it can be pretty rough. 

What type of genetic testing are you referring to?

If it's simply BRCA1 / BRCA2 genetic testing, then definitely do that.  If it's more extensive genetic testing beyond the BRCA mutation, that is a different conversation. I'd imagine your doc is not referring to the more extensive testing though.

In terms of insurance, everyone's coverage is different. Some plans cover BRCA testing at 100%, while others only cover a portion. Despite this, knowing your BRCA status is important when deciding on a oophorectomy.

This breastcancer.org link for Genetic Testing may be useful. 

Hi Sinclair, I had already had a total hysterectomy 4 yrs ago due to endometriosis and had been on HRT since then. My grandmother died from BC and I have other relatives that were diagnosed with other types of cancers at a relatively young age so when I was diagnosed with ILC my doctor also suggested that I at least go talk to a genetics counselor. I did and decided to go ahead and let them do the testing. I gave some blood, it tested 21 genes for mutations and I actually had a mutation of a gene that they call NBN. It does carry an increased risk of 30% for breast cancer and an increase risk for prostate cancer so good info for my kids to know should I have passed the gene to them. They would just need to start screenings at a younger age at this point and stay up to date with the findings regarding this gene. If you do decide to do genetic testing after talking to the genetics counselor, then make sure your insurance covers it because the panel they tested on me was quite expensive.

My mother was just diagnosed with ILC, grade 2. She had a breast MRI on Friday and we are waiting for those results so we don't know a stage yet. She is 57, post menopause and my grandmother had IDC. I am trying to help her navigate through all of the information and have spent the last week reading these boards. 

They recommended the genetic BRCA testing. How do the results of this test affect the treatment plan? And should I also have the genetic testing considering my mother and grandmother have both had BC?

as for the foundation one testing. Is this a proven help or is it trial