BRCA Genes

[House Cat]

I uploaded my DNA to Promethease and I have over 3,000 gene mutations for BRCA1 and BRCA2. I don’t know if that is normal or not. I’m actually taking another test specific to BRCA either today or tomorrow. I’m having trouble uploading my file ATM.

Does anyone carry either one of these genes? What did you do about it?

 

[HS4S_2]

I also have a BRCA gene mutation. I did not know this until recently. I did many medical tests recently as part of the IVF process. One of the mandatory tests on my check list was a mammogram. I have always had dense breast tissue and have fibrotic breast disease. It has never been an issue except in the fact that I usually have to go back after the initial mammogram and do an ultrasound (I have no idea why my insurance insists on doing it this way). Well this time the ultrasound revealed a mass in two of my milk ducts. At this point they did genetic testing, a biopsy and sent me to a surgeon. The mass ended up being cancerous but the mutation was not to the point of moving outside of the area it was in because we got it before that mutation. They placed a sonar tracker into both areas and I had a partial mastectomy two weeks ago and my lymph nodes were also biopsied to be safe. I will also be doing radiation therapy to be safe. Had I not done the mammogram as part of the ivf process I likely would not have known for another year when my next mammogram was due. Being 44 I was on a two year schedule. Now I go every 3 months for a year and then they will spread out a bit, but I will always need to do enhanced screening. I also had blood work and screening done to check for cervical and ovarian cancer (including CA-125 antigen screening). I would not have known I had the BRCA mutation either had this not come up. I do think that more women have this mutation than we think.

Science has become so advanced that we are able to see any changes immediately as long as diligent testing is done. Treatment is also much less invasive and less radical. My surgeon told me in previous times my diagnosis would have ended with a complete mastectomy. I imagine science will continue to advance.

EEdited to add: my mom also had breast cancer but they do not generally check for the BRCA mutations without a family history of 3 people with certain cancers.

 

[House Cat]

I also have a BRCA gene mutation. I did not know this until recently. I did many medical tests recently as part of the IVF process. One of the mandatory tests on my check list was a mammogram. I have always had dense breast tissue and have fibrotic breast disease. It has never been an issue except in the fact that I usually have to go back after the initial mammogram and do an ultrasound (I have no idea why my insurance insists on doing it this way). Well this time the ultrasound revealed a mass in two of my milk ducts. At this point they did genetic testing, a biopsy and sent me to a surgeon. The mass ended up being cancerous but the mutation was not to the point of moving outside of the area it was in because we got it before that mutation. They placed a sonar tracker into both areas and I had a partial mastectomy two weeks ago and my lymph nodes were also biopsied to be safe. I will also be doing radiation therapy to be safe. Had I not done the mammogram as part of the ivf process I likely would not have known for another year when my next mammogram was due. Being 44 I was on a two year schedule. Now I go every 3 months for a year and then they will spread out a bit. I would not have known I had the BRCA mutation either had this not come up. I do think that more women have this mutation than we think.

I’m sorry you had to go through all of this. I’m glad they found it early. After you finish IVF, will you have your ovaries removed?

 

[tyty333]

Lucky timing on the mammo @HS4S_2 . So glad they found it now instead of a year later! Hoping the radiation goes well for you and they
declare it "gone" when you are done. Wishing you and @House Cat both good health.

 

[HS4S_2]

I’m sorry you had to go through all of this. I’m glad they found it early. After you finish IVF, will you have your ovaries removed?

I have actually decided not to move forward with ivf. My age plays a big factor in that decision and I could not move forward for a few more months (at least because of radiation) when I will be almost 45. This is the age many clinics will no longer readily do ivf using your own eggs. It has just been a lot to deal with and the stress involved with that and a recent loss made us reevaluate our decision. We do have 4 healthy because kids (16-23). We are just going to enjoy them and each other. The risk factors were getting pretty heavy and the was a bigger risk for a bad outcome then a good. I would like to be here for my kids so we make this choice. I have donated my medication to the clinic for another patient to use since it can be difficult for people to afford and hope it brings someone else a healthy baby.

I have not decided if I will have my ovaries removed. My doctor said with regular screening, including blood work and diagnostic testing, he does not think it is necessary "right now". Everything is very fresh and the combination of all of this with the ivf has been a lot. I am concentrating on healing and then the radiation right now before I reevaluate.

 

[HS4S_2]

Lucky timing on the mammo @HS4S_2 . So glad they found it now instead of a year later! Hoping the radiation goes well for you and they
declare it "gone" when you are done. Wishing you and @House Cat both good health.

Thank you. I had clear margins after removal so they are doing radiation just as an extra defense. Doctors are as sure as they can be that all will be good .

 

[House Cat]

I have actually decided not to move forward with ivf. My age plays a big factor in that decision and I could not move forward for a few more months (at least because of radiation) when I will be almost 45. This is the age many clinics will no longer readily do ivf using your own eggs. It has just been a lot to deal with and the stress involved with that and a recent loss made us reevaluate our decision. We do have 4 healthy because kids (16-23). We are just going to enjoy them and each other. The risk factors were getting pretty heavy and the was a bigger risk for a bad outcome then a good. I would like to be here for my kids so we make this choice. I have donated my medication to the clinic for another patient to use since it can be difficult for people to afford and hope it brings someone else a healthy baby.

I have not decided if I will have my ovaries removed. My doctor said with regular screening, including blood work and diagnostic testing, he does not think it is necessary "right now". Everything is very fresh and the combination of all of this with the ivf has been a lot. I am concentrating on healing and then the radiation right now before I reevaluate.

I can’t imagine how overwhelmed you have been, so many decisions in so little time. Good luck with the radiation.

 

[Asscherhalo_lover]

I have one friend who was positive, her Mother as well (and had breast cancer). She chose a preventative double mastectomy. She is still having children but when she's done plans on removing her ovaries and uterus.

 

[HS4S_2]

I can’t imagine how overwhelmed you have been, so many decisions in so little time. Good luck with the radiation.

Thank you. We discovered the breast lump in early December. It has been chaotic.

Will you meet with your primary doctor to see how to proceed. I know there is so much information and differing opinions so it can be overwhelming.

 

[House Cat]

Thank you. We discovered the breast lump in early December. It has been chaotic.

Will you meet with your primary doctor to see how to proceed. I know there is so much information and differing opinions so it can be overwhelming.

I’m waiting to see if I actually carry the gene mutations. If so, I will definitely meet with my doctor. I’m 46 years old. I’m not sure what options are out there for me. It seems that a lot of the surgical options are for people under 45.

 

[HS4S_2]

I’m waiting to see if I actually carry the gene mutations. If so, I will definitely meet with my doctor. I’m 46 years old. I’m not sure what options are out there for me. It seems that a lot of the surgical options are for people under 45.

It does seem that way. I think that with monitoring and scans for early detection is a great way to go. I hope that you do not carry the mutation. I will send good thoughts .