If you are here, thank you in advance for reading this (sorry it's so long. Has taken me a couple of years to put it out there.)
I am 23 years old and was diagnosed with the BRCA1 mutation 2 years ago. I've had a bit of time to think about things and ultimately feel extremely fortunate to have this early identification of risk...my worries lie in what to do next.
I have been searching the forums and support groups over the last two years hoping to find people with similar experiences / mindsets to me but haven't quite clicked. I've been afraid to share my story incase I am met with negative opinions or offend anyone else's choices - after my diagnosis, my sister got tested and we had a few arguments about what the right path was regarding children but luckily her test came back negative (she will be the best mum afterall!).
I am very set on having a double mastectomy after I finish university next year but what to do about my ovaries is what troubles me. My dads cousin died only a few years ago of ovarian cancer (she was 34) and almost every other woman on that side of the family also died fairly young of cancer (before we knew about the gene). My mum has had both breast and ovarian cysts (luckily all benign) and her mum died of breast cancer when my mum was 15 (not related to BRCA but still worrisome).
So I suppose here is my mindset: I know I am very young but I do not want to waste the opportunity early diagnosis has given me and know that the longer I wait, the higher my risk. I am worried about things like body image and recovery post-surgery but most of all I am worried about my independence. I am really very happy being single and taking care of myself and have no plans to bring a child into my life by any means until much further down the line, if ever. Although I think 30 is a very reasonable minimum age limit to have for ovarian surgeries, I was really disappointed that the provided reasoning for this was "after you've had all the children you want". Although there is some maternal urge within me and I do think that pregnancy is an amazing thing, I don't feel like it would be right for me to pass on this gene. My sister wanted to have naturally conceived children regardless of her results and my parents have tried to push me towards thinking about selective IVF - it pains me to think that if they had known about the gene when they were trying to have kids that I wouldn't exist. Early menopause is also scary, but not as scary as cancer.
People say to me, 'but what if you meet someone who wants to have kids?' or 'maybe you should wait to have the surgery until you've found the one'. Trust me, to be entirely candid, these things do worry me to some extent and I'm sure my dating and sex-life will be affected but ultimately I want to put my health before vanity and hope that any potential romantic partner would do the same.
I really hope my attitude does not come across as radical or negative. I have made peace with my choices as best I can but I do feel quite alone in this since my family don't agree with me and I haven't found any like-minded people online.
I'm really glad to hear stories of women who have managed to overcome the difficult choices that follow this diagnosis with the support of a loving partner or the joy of a new baba. Any way that positivity and light can be found, I wholly support. I just wish sometimes that I could find women like me, who are young and maybe worry less about how they will look or how they navigate the choice of having children and more about what this means for their life and career as an independent woman.
If you are still here, I really can't thank you enough for taking the time to read this.
Emilia42 thank you for your response. I have also found this forum has helped me to feel less alone in all of this.
Some years ago i worked with a woman who had Huntington's disease. both her children had been tested and her daughter tested positive for the gene.They were both in their early 20's. I felt a kinship to this family through the pain of watching their mother deteriorate as well as the predisposition they had to genetically inheriting this gene.
There is very little if any preventative measures that can be taken for Huntington's and it was at this time that i begun to explore some of the preventative measures available to people who had BRCA1 mutations. I watched a documentary that followed a young woman in her early 20's and documented her decision making process in comparison to her siblings decision making in regards to the choices she made with preventative measures. I also watched a talk show with a mother and her 3 daughters. They had all had preventative surgery regardless of whether they carried the gene or not.
These are big decisions to say the least but unlike some inherited genes there are preventative measures that can be taken with BRCA mutations. I wish you brave young women well. I would love to know of the choices you make. When and if you do.
I'm really sorry to hear about your family history, must be very worrying as well.
I can share with you some information from my personal experience. I'm not sure preventive breast surgery is offered to women under 30s unless they actually have/had breast cancer. Same for ovarian cancer, preventive surgery is not done until you reach 39/40 years old.
The reason why, and this is what my genetic counsellor told me, is because the risk of developing ovarian cancer before the age of 40s is very little (something less than 1% according to data) so the side effects of taking the ovaries away from your bodies (menopause, hormone replacement, etc) would be greater than the risk percentage. Things are different after 40 years old, where the risk exponentially grows, then the side effects would justify it.
I don't know regarding breast cancer, but I suppose is the same - despite, I think, data shows that there is more than 1% risk of developing breast cancer before your 30s and I am the living proof that it can happen :(
I was also reading somewhere that all the preventive surgery are done when someone has completed their family. But I'm not sure how this affects and how it's used or if it was just for trials - to be honest, my mind makes me think "how can I look after my child if I have cancer?" or anyway someone should be allowed to do anything they can to prevent cancer.
The only available thing for ovarian cancer before 40s are trials. The genetic counsellor was telling me about this particular trial where they study if eliminating just the tubes will help in not developing ovarian cancer because they believe it starts in the fallopian tubes and then moves to the ovaries. So it's not really preventive, but they do take the tubes off, leaving the ovaries which still produce the hormones that we need. Because it's a trial, they don't know if it actually works and I don't know if when you reach 40 you can still have the option of preventive surgery. Anyway, for the trial, I remember you need to be at least 30 and have finished your family.
Regarding the IVF, there are options. They can collect the eggs, do the IVF to form embryos and then check the DNA of the embryo. If the DNA contains the BRCA1 gene, the embryo will be discarded. If it doesn't contain the gene it will be implanted in your utero or the surrogate, depending on what you decide. There success rate (at the moment) it's 38%.
