brca testing and oncotype

You don't mention what type of surgery you had--lumpectomy or mast?  I'm guessing lump. since you also had rads.

I was dx in May 2008.  Had a lump. with bad margins, so ended up having a mast in Aug.  Went thru chemo Sept - Nov.  Found out one week after completing chemo that I'm BRCA 2 pos.  Aaargh!  I was 35 at dx with no family history except a paternal cousin with bc who was dx in her 50's.  So, none of my docs particularly felt I needed to have the BRCA test done.  Something kept nagging me to do it, so I did.  Everyone was surprised by the result, except for me.  I just had this niggling feeling, KWIM?

When I elected to do the testing, I knew that if I was pos. I would have the other breast removed and get my ovaries out.  Too risky to play around with.  So, a week from today I will be having a prophylactic mastectomy and sometime towards the end of this year will have my ovaries out.

It's not fun being a genetic mutant, but I'm very glad to know so I can do something to prevent another bc.  

BRCA is only a strong predictor when it is positive. Negative BRCA generally means that your risk is not extremely high, but it may or may not be low. That's where Oncotype might fill the gap.

 The high BRCA+ risk is inherited. BRCA-linked cancers run in families, and although breast cancers are most common, some other cancers count too, especially ovarian / peritoneal but also melanoma and early prostate in males. (Risk in males is lower, so some women may get the faulty BRCA gene from their fathers without much of a family history to warn about a possible genetic connection...) What kind of cancer did your mother have?

 There are two BRCA genes. Since you are ER/PR+, it is highly unlikely that BRCA1 is involved. But BRCA2 possibility? Best to check with a certified Genetic Counselor ... they should know a lot more than ob gyns.

paweed - being BRCA positive wouldn't have taken you out of chemo, you just would have skipped rads. The oncotype & BRCA testing aren't related, they do not test the same genes.

Hi

My doctor did not suggest BRCA testing...I decided on my own to get BRCA testing before my masectomy (left side) however I did not wait for the results to go forward with the surgery ... I agonized over doing one or two.  My surgeon was positive I was BRCA negative (partly based on my age 49)..  even though my mom had Breast cancer in her 40's (a survivor...) she was wrong.

I opted to go forward on the left side only.  Found out I was BRCA2+ around two weeks later.  My invasive tumor -- lobular (and pleomorphic -- may be a link with BRCA2) is pretty high ER/PR -- my oncotype score 16 ... fairly low.

BRCA testing and oncotype completely separate issues...  so I do have more surgeries in my future   right side masectomy, implant exchanges and ovaries  (wish I could do it all at once).

My sister tested positive for BRCA2 as well but she is all clear.

I requested BRCA testing because I had enough of a family history that I wanted to know if I was passing on the known defective gene to my children.  As far as my surgical decisions, finding out my BRCA status didn't change anything for me. I had already decided to have a bilat mx and to get an ooph at some point in the future, though I may try tamox first.

I am currently awaiting my oncotype results.  Because of the size of my tumor and my desire to be around to parent my young children into adulthood, I am planning on getting chemo, pretty much regardless of what the oncotype score comes back as.  However, I love having as much information as possible, and wouldn't be able to sleep not knowing what my oncotype-predicted recurrence rate was.

As a prior poster noted, the two tests don't have much to do with each other, except as far as giving you more information to assist you in your decision-making.

Patty, you were so young at diagnosis, that I can see your surgeon's point about getting the BRCA testing--why not do everything possible to find out your future risk.

Daffy, good job being persistent about getting the testing you want. Your surgeon should not have said "no" to the BRCA testing--it's not up to her--and I'm glad your onco backed you up. 

Patty, I love your sig line.  I have felt that same thing many times, like maybe this cancer thing was just a bad dream and I can wake up now.

The way I understand it, BRCA testing doesn't predict recurrence rate for your existing cancer--but if you test positive you have a much higher rate of developing a new cancer, and it could be in your breasts or your ovaries, depending on if its BRCA 1 or 2.  I know there are people on this board much more knowledgable about this than me, so I hope they chime in, but this is how I understand it.

This is such a crappy club no one wants to belong to--I totally understand your wanting to put it all behind you.  Good luck to you whatever you decide.

I wanted to throw in something a genetic counselor told me. I, too, had a lumpectomy with radiation, although I was not offered chemo. With my family history and my type of cancer and my age (45 - some insurance companies are switching their plans so they only cover BRCA testing for women who get breast cancer at 40 or younger), she said it is highly unlikely that I would test positive. She said that if I did, it was not so much a matter of worrying about my breasts, second-guessing my surgery or rushing to schedule something more drastic, as my breasts were now going to be under close surveillance. She said the big concern with BRCA positive women is really more the ovaries. Ovarian cancer is extremely sneaky, and there are no tests for it. Often it's not discovered until it's advanced. So if you know you have a genetic predisposition toward it, it's a good idea to consider pre-empting it by oophorectomy.

(That said, I have not had the testing. I would bet money that there is a genetic component to my cancer, as there is a lot of colon cancer on both sides of my mom's family tree, but I don't fit ANY of the criteria for BRCA positivity. So, since we're into a new year with a whole new $5K insurance deductible to meet, I am going to wait until we either meet the deductible in one of the next few years OR there's a new test that targets some other suspicious genes. If the counselor had made the comment about the ovaries before it was too late to schedule the test for last year, when I had more than met the deductible, I likely would have done it then.)

Breast cancer does have a way of impressively blowing out one's deductible, doesn't it? It took me about a month to fly through $5,000.

I would just like to add that just because you have all the signs doesn't mean that your genetic testing will come back positive.  My mom was diagnosed with ovarian CA almost exactly one year before I was diagnosed with BC.  My mom has no sisters and both my grandmothers had early "total" hysterectomies for "fibroids".  My mother has one female cousin who was diagnosed with BC about the same time as I.  My sister had a "total" hysterectomy including her ovaries at 38 from proliferating benign uterine tumors.  So I was absolutely convinced that my genetic testing would come back positive.  But neither my mom nor I nor her cousin are BRCA positive.  It was just all some big fluke!  But by the time I got the results I had already decided to have a bilat. mastectomy - the stress was too much for me.