I just got my results back yesterday. I have the mutation Deleterious in BRCA1 gene. It wasn't much shock since my mother had breast cancer also at 35. I now worry about my sister almost 20 and my daughter 9. I've been reading the book Pretty is What Changes. My sister is thinking about going with the Prophylactic surgery (preventive mastectomies) like the writer in this book. My sister has not taken the test yet but this is what she's thinking if she does have the mutation. I wish I would have taken the test sooner, I may have went the same route. Probably more than likely if I was able to have immediate reconstrution. So with my new findings as of now I intend on get an Oophorectomy ( removal of ovaries ) I'm still reading on this, but I am done having children, I had my tubes tied in 07, that was a waist. So I really don't have alot holding me back. Anyone with any experience personally advice welcome.
- Resources
Positive BRCA1
Hi My name is Michelle and I am 35 yrs old. I live in Australia. I got diagnosed with IDC last yr in July. I had a double mastectomy in Sept (I had a lumpectomy before that but there was more cancer in there). My mother got diagnosed with IDC in April last yr aswell. I was 34 and my mum was 55. My grandmother also died from breast cancer when she was 54 (30 yrs ago). My mother had a lumpectomy and got clear margins with no lymph node involvement. I had 27 lymph nodes out and 3 were +. I have had chemo and am currently on Herceptin and Tamoxifen. My mother has had the blood test for the gene mutations but we are waiting on the results. The Drs say that even if these come back negative they are going to assume that we have some mutation that has not been discovered yet as we have 8 women in 4 generations that have had breast cancer. I am having a hysterectomy in 5 days to decrease the risk of ovarian cancer. Like you I have a daughter who is 8 (I know yours is 9), and I am very concerned about her future and like you I have read the book Pretty Is What Changes. I am writing notes about it so that if the need arises(i.e they dont find a cure in the next 20 yrs) I am going to pass it on to my daughter so that she can decide what she needs to do. In a way I feel sorry for her because I have gone through my whole life until now not knowing about this, but she wont get the chance. Her mother will always have had breast cancer from an early age and she will always have to deal with the fear of getting it herself. Up until now there were other women in our family who had it, but the closest generation to me that I knew about was my nan 30yrs ago, until last yr. But from the other side of the fence at least she will know about it and all the medical proffessionals will know that she is at high risk and that she needs a lot of education on self examination (something I never had) and also she will have Drs keeping an eye on it. This is the greatest fear of my life that I may have passed this onto her but I cant do much about it. I love her with every ounce of my body (and I have a few ounces) and that is one reason for me to fight on because I have only known her for 8yrs and she is a beautiful person and I want to know her for a lot longer. I am not sure if you know of Jane McGrath in America but she is a famous cricketers wife here and she got diagnosed with BC 11 yrs ago and unfortunately she died last month. I was pretty upset about this as she has 2 young children and also she was like my poster girl:( If Jane McGrath can get through it and she is young, then that means not all young women with it have to die, but still we fight on. There is nothing we can do about having this ourselves except deal with it and pray as much as possible for ourselves and others with this or any type of illness, but I especially pray and hope that by the time our kids have to woory about this there will be a good chance for them to be ok. God bless all. xxx
I couldn't of said it better. I feel the same way I want to see my children grow up and have children. You really dont no how much you want to be here til you go through something like this. I no I intend to fight this cancer with everything I got so I can be a grandma one day. I pray also there is a cure so our daughters don't have to go through this. If they do we'll be there for them and they will not blame us for this mutation we have just as we don't blame our mothers. Take Care
I couldn't of said it better. I feel the same way I want to see my children grow up and have children. You really dont no how much you want to be here til you go through something like this. I no I intend to fight this cancer with everything I got so I can be a grandma one day. I pray also there is a cure so our daughters don't have to go through this. If they do we'll be there for them and they will not blame us for this mutation we have just as we don't blame our mothers. Take Care
Hi Tiffany...I am going to genetic counselling in Sept...I can't imagine how you must be feeling. I have been through a mastectomy with reconstruction & reduction & chemo. I have triple negative cancer & will be tested for the BRAC1 & 2 gene if necessary. Please check out the advantages/disadvantages of removing your ovaries. I have been told by my dr that only if your are BRAC2 positive removing the ovaries would be beneficial. The ovaries are needed for hormones for you bone density among other things...please check this out. You are just too young to lose your ovaries unnecessarily.
Ms Tiffany....I was told if I am BRAC1 I should consider getting another mastectomy...if I am BRAC2 I should consider getting my ovaries removed as well. Ovaries do serve a purpose...even after menopause...please strongly research & get different opinions before removing them. My heart is with you...my strength beside you....keep in touch...hugs to you...Flossy
I do know if you have BRCA1 you do have more of a risk of getting ovarian cancer than if you have the mutation in the BRCA2. Ovarian cancer is also in my family and that is not something I want. I'm curious to why you would you need another mastectomy tho? I did read in my case it is over about a 46 percent chance of getting ovarian cancer. I read the point you made on the internet but then it turns and still suggest the ovary removal in the same artical. I may just need to talk with my genetic counselor again.
Ms Tiffany,
I'm confused too...I was told if I had the BRAC1 I would need another mastectomy because having the BRAC1 gene makes a person very likely to get breast cancer...BRAC2 would mean the likelyhood of getting ovarian cancer is high as well. I will ask this when I go to Indianapolis to see my genetic counsellor too. I have no family history of cancer at all. I am worried for my children too. Cancer seems like the modern day leoprosy! Being triple negative I was told increases the risk up to 30% to get cancer back...more than likely in the brain or liver....I feel like I can't win for losing...I guess I'm just having one of "those" days. I NEED to get away.
Hi there,
My mother's mother died of breast cancer in the 60"s, my father's mother had breast cancer with a radical mastectomy and radiation in the 60's and lived. My mother died of ovarian cancer 3 years ago, my older sister had breast cancer at the age of 32 and I had breast cancer at the age of 36. Even with that strong family history, I am BRCA 1&2 negative. My younger sister chose to have prophylactic mastectomies when I was diagnosed. She has not regretted her decision for a minute.
You can't waste time regretting what you didn't know. Take every day one step at a time and keep moving forward.
As to the oopherectomy, there is a link with breast and ovarian cancer. I have had the oopherectomy too. Just do your research and speak with your oncologist. This is a big decision and a life changing one - more so than I was prepared for. I would not change my decision but menopause is not to be taken lightly!
Hang in there! Life is worth fighting for!
Sherree
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Tiffany, I probably don't have the gene because I'm the first person in my family to have a premenopausal breast cancer, but I do have a possible resource for you. A friend who does have the gene told me about FORCE, which stands for Facing Our Risk of Cancer Empowered. They have a website and support groups for women with a genetic risk of breast or ovarian cancer. Their website is www.facingourrisk.org. She has found the information she received there very helpful, and she went to one of their conferences where she got to meet others in her situation.
Thanks Phyllis. The genetic counselor gave me this same website and its in the book i'm reading. I've not been able to go through like I want yet but I do intend to check it out more. Thanks again.