Has anyone tested positive for the BRCA1 gene?

I tested positive for BRCA2 in 2006. Huge history of breast cancer in my family so not surprised. I had a prophylactic double mastectomy, plus ovaries and tubes removed, and reconstruction — all in one surgery. I’m very glad I did it. I had a Diep flap reconstruction - used stomach fat instead of implants and would recommend it.

If you have any questions feel free to ask here or pm me.

My genetics are unknown as I haven’t been tested since 2006 and we have many more things to test for now including rearrangements of the BRCA gene.

I had a prophylactic bilateral salpingoophorectomy (tubes and ovaries). Had a bilateral mastectomy as well but I was in the middle of breast cancer treatment at that time.

Men are just as likely to carry a mutation and BRCA is more than just breast and ovarian cancer. You actually do have a family history as your have a first degree relative. Did your dad die from a BRCA a related cancer like pancreatic or prostate cancer?

You may want to talk to a genetic counselor. There is an organization called FORCE (Facing Our Risk of Cancer Empowered) which is focused on “previvors” who are people with a genetic predisposition to cancer. They can be a great source of information and support as well.

chrispeas  Yes, I was tested and positive for BRCA1 early this year.  It was passed from my grandfather to my mom & 2 of her sisters (all died for and/or breast, ovarian or uterine cancer).  My grandfather passed in WW2 so we don't know anything of his medical history.  My grandmother lived until 82 and didn't have cancer.  

My aunt died in 1985 from ovarian cancer (very hard to detect) and it was from some dna that the labs were able to determine that she was positive for BRCA1.  Her eldest daughter, my cousin A, had breast cancer and then had genetic testing done.  She had the BRCA1 gene.  My cousin B, (youngest sister to cousin) was tested in 2020 and had the BRCA1 gene and since had a prophylactic mastectomy with reconstruction and a complete hysterectomy.

My other aunt died from breast cancer but she didn't tell anyone, as she was quite reclusive.  I don't know if my female cousin C has had testing done or not.  They live very far away.

My mom had the BRCA1 gene and had ovarian cancer and melanoma cancer.  We were able to test her dna after she passed from tissue samples that the lab had.

I had my dna tested and I also have the BRCA1 gene.  I previously had a complete hysterectomy when I was 32 due to many ovarian issues and also had a complete hysterectomy.  I had a prophylactic double mastectomy, with a latissimus dorsi flap in July.  

It was because my cousin A, that I was tested.  Her insurance covered my dna testing by Ambry Genetics.  This genetic place was trying to build a "family tree", so I didn't have to pay for any of that.  The gene testing at Hamilton (ON) Juravinski Hospital was not able to complete the "entire sentence" of the BRCA1 mutation and I insisted that the blood be sent to Irvine, CA to be tested.  I was very disappointed in the Ontario Medical system.  That is another long story.  I ended up going to Roswell Park Cancer Center in Buffalo, NY & had to pay out-of-pocket.  I was seen in early May and had surgery mid July. 

My sister has not been tested as yet.  She is older than me.  My adult son has not been tested yet and it is up to him if he chooses to do so.  My brother has not been tested.  My niece (she is an MD) has not been tested yet.

Cousin A has 3 dd, all were tested.  2 were positive for the BRCA1 gene.  Those two have both had prophylactic double mastectomy and complete hysterectomy.  They are both finished having children and after seeing their mother suffer so badly, this really wasn't a choice.  

Sorry for the novel.  If you have any questions, please PM me.

My close childhood friend lost her mother to breast cancer and her sister also had it, so she decided to get tested and she was positive.

She also had a recent suspicious mammogram and a biopsy showed pre-cancerous cells so she decided to go with mastectomy and reconstruction. I think that was a wise option.

I had breast cancer but do not have the BRCA gene and I'm the first that I know of in my family to have breast cancer.

With no family history of breast cancer, I was not eligible for genetic testing. 3 weeks ago my mother, 87, also had a breast cancer diagnosis. Mine were HER2-/ER+/PR+ and HER2+/ER+/PR+. Hers is HER2-/ER+/PR-. She is having genetic testing. I wanted a double mastectomy but they wouldn't let me. If they find a gene, I wonder if I would then be allowed testing/mastectomy of the other side?

Mum is having a lumpectomy next week, with a week of radiotherapy in the new year. It was found very early, luckily. I hope and pray that she'll be OK.

This.

I wonder if your friend tested positive for the BLM gene?  My sister tested positive for this gene.  As a result I'm going to have a genetic counseling appointment and will undergo a series of genetic tests.   We share the same parents, but oddly enough our results could be different. 

Genetic testing can be done for many different markers.  I was only tested for the BRCA1 as this was the one that was concerning and this was the only test that would be covered by insurance due to circumstances. 

You would need to talk to your PCP and then have them refer you to genetic testing.  The process can be long and very expensive.
 

By the way, men need to be tested also. This gene is linked to prostate cancer. Also pancreatic.

Very strong family occurrence of breast cancer on my moms side. So I’ve been tested. I’m negative. Amazingly, My aunt who has had 3 separate occurrences of breast cancer (and survived) tested negative for it. Another aunt and uncle have had breast cancer as well. I don’t know if they were tested for it or not.

Pam

If I remember correctly, you and I are in the same state the U/Huntsman has an AWESOME genetic cancer center. Myriad Genetics is also at the U. It's the testing I had done. 

There are many different procedures that can be done. It's best to talk with your doctor who can recommend a plastic surgeon for the reconstruction. (I have not had real nipples for over 35 years. But I have my life.)

Yes.

Although I will add that if one has a predisposition to develop breast cancer, my oncologists recommended removal of the nipples, as those count as breast tissue and also have a likelihood to develop cancer.

Both of mine are gone, along with both breasts, because I had multiple tumors in my left breast and my cancer had a high likelihood of recurrence. They can actually construct new non-functional nipples with skin, but I have opted to just live without them. Maybe I’ll have some tattooed on at some point, but my last reconstruction surgery was just in January, and my horizontal scars are very visible. A nipple tattooed in the middle of them would look odd at this point. 

Because I am Ashkenazi Jewish - genetically - my medical center immediately tested me for the BRCA mutations, as there is a higher likelihood of carrying the genes if one is Ashkenazi. I am lucky that I’m not a carrier. My sister was going to get tested if I carried the genes, but hasn’t now that I don’t. There isn’t a history of cancer in my family. 

My doctor did the testing, but I went to the U on my own after I found out about results. I'm glad I did because they do the testing for Pancreatic cancer. Very best of luck!