BRCA if you're triple negative did you test positive on BRCA

Joliel · May 2016

BRCA negative and no family history

RTChris · May 2016

I have TN and was tested due to an unknown family history. BRCA 1 & BRCA 2 were both negative.
There are other possible genes that may have a link to triple negative breast cancer that tests are still being developed for. I should be able to be testsed for those in the fall

seejuliago · June 2016

Just got my results back as well. I was tested for a panel of 7 genes. I came back negative for the BRCA 1 and 2, PALB, etc. I came back inconclusive for the CHEK2 mutation, but that's it. Just leaves me wondering...no family history, no clear genetic mutation...where did this come from?

Margdahl · June 2016

my daughter is triple negative and also BRCA2 positive. I'm not sure what you would do if you find out but for sure you would have ovaries removed and notify family members.

Milwmama · June 2016

TN and BRCA2+ as well. Those are the two I know of that I did. Also started researching diet helps for TN.

Eschindler · June 2016

Hi All,

I've started a new thread to specifically connect around issues related to people who are TN and BRCA+. Here is the link: TN and BRCA+: Support and Connect.

Here is the content of the first post, which explains why I started it.

Hi,

I was wondering if there is already a thread where folks talk about the specific challenges associated with being triple negative and BRCA+. For instance, here are some that I've been confronting lately:

1) I am on my fourth surgery in a year. I had a lat flap construction two weeks ago, and although it has gone great, and I am thrilled with the results, the ongoing cycle of recovering from surgeries is leaving me low. It is very hard to stay out of the "I had TN, it's going to recur, and my daughter's going to get it too after I die from this horrible disease." I am managing to reach out to my family and therapist, and I have a support group, but I find that there is a different narrative with non-heriditary, non-TN cancers. Most of the people in my support group see their cancer as one event, as opposed to a series of events, or even a chronic part of your life, which is how I've experienced it.

2) My kids. I am having the hardest time guiding them through this last surgery. They are just so tired of it, and for my three year old, she's just now being able to articulate her fears. How do you calm your kids when you're so scared too, and when you can't truthfully say for certain that they will never have to deal with all of this?

3) How do we manage fears of recurrence, knowing the reality of TN and BRCA?

4) How can we make sure we get into time-sensitive clinical trials, particularly those that are testing vaccines to prevent recurrence in TN survivors? I missed a good one because I didn't know about it until after the eligible window (14 weeks post-chemo) had passed.

5) How do we advocate for treatment specific to our situation, knowing that not all oncologists understand the aggressive nature of BRCA associated triple negative cancers?

6) How do we talk about the experience for those who undergo treatment for cancer AND preventative surgeries related to their BRCA status?

I have been looking at other communities, such as FORCE and the Triple Negative Breast Cancer Foundation, as well as the Basser Center at Penn, and they are all very useful, but none of them (as far as I can tell) have places for people who are BRCA+ and who have HAD CANCER ALREADY to discuss these issues. I hope this will be a good place to connect and discuss. Thank you in advance for your participation and support!

samanthamala · June 2016

TN and BRCA1+. No family history, but my entire paternal side is unknown to me.

Jacklin · June 2016

RTChris, just wondering what other tests you are talking about for us as Canadians? I have TN and am BRCA-, so I'd be very interested what else could be done. Thanks.

anotherNYCGirl · June 2016

TN and negative genetic panel here. My Mom had bc when she was 68, no chemo or rads, lived until a month shy of her 99th birthday! We dont know if she was TN. Mom's first cousin also had bc, as did one of my first cousins.

Eschindler, - i believe that when you are physically healed from your surgeries and treatments you will feel better emotionally as well. Right now you are dealing with what is similar to ptsd. You mention a 3 year old, but not if there are older children, too? I would tell them that you have good doctors, and that scientists are hard at work finding new and even better ways for doctors to help people. There are always new medicines and treatments being discovered. If you think positively, they will, too! Lat flap surgery is a tough one, - allow yourself time to recoup, - and if you can, go for PT! Talk to your children and explain that you can do some things , but not everything, yet. Remind them that when they get sick, or hurt themselves, it can take a while before they feel all better, too! Perhaps they can help around the house, or do something to make you more comfortable. Ask them to do something age appropriate that makes them feel that they making things easier for you right now. Children learn empathy in a situation like this. Praise and thank them for their understanding and helpfulness. You dont list your history, so i dont know if you are undergoing chemo,etc. Keep your chin up! Life WILL return to normal, albeit a new normal!

blamoms · July 2016

no family history. I'm brca 1 and brca 2 negative. I'm also triple negative

Lovebird65 · July 2016

I Tested negative for BRCA but positive for ATM.

jac13 · July 2016

Hi I have triple negative and a had the BRCA test. I am still waiting on the results. I really dont understand what it will mean if I do have the gene. I am very anxious. How did you make ou?

mom2allboys · October 2016

TN and BRCA1+ here.

Stacyd · November 2016

Diagnosed April 2016.Triple negative. Brca positive.

Bumblebea18 · November 2016

I am TNBC and was tested..positive for BRCA. I understand there is a relationship between BRCA 1 and TNBC...

amw5 · November 2016

TN here, and I tested negative for BRCA1 and BRCA2.

Rayna_666 · November 2016

I am triple negative and BRCA 1 positive. My sister also had breast cancer, but she is HER 2 positive and BRCA 1 positive. We are 33 and 30.

mom2allboys · November 2016

TN and BRCA1+

Corgwn · November 2016

TN and genetic panel was negative -- some "unknown" mutations and a promise to inform if future research turns up anything. No BC family history, but don't know a lot of family. Did have an aunt with either pancreatic or liver cancer -- don't remember exactly, as I was a kid at the time.

Carolg516 · November 2016

I am also Brca neg with variant of unknown significance: BRIP1 - c.1629-3T>C.

Oncologist said I would be notified if further research turns up anything.

cams · August 2017

I was diagnosed last year in 2016 with TNBC and mutations of unknown significance for BOTH BRCA 1and 2. The onc specialists can't make up their minds whether oopherectomy would be beneficial.

I am Asian with no known family hx of BC. My mother is neg for genetic panel while I don't know about my father. Am convinced this may be lifestyle/exposure related although exercised and ate a pescatarian diet. Considering a vegan diet.

Finished chemo in December and found a pea-sized lump in my armpit in June. Needle biopsy confirmed malignant cells. Will find out options today. Angry and discouraged because I thought I'd have some breathing room and was told chemo effectively kills aggressive cancer cells like mine