Ovarian cancer and Endo

[darylchristianne]

Before I found out I might have endo, I found out that I have the BRCA1 and 2 genes for ovarian/breast cancer. I haven't had my laparoscopy yet and I've read that endo also increases chances of these cancers. Which could mean my risk is going to be very very high. But I've not been able to find out if having the BRCA1/2 increases your likelyhood of having endometriosis? I'd really like to know this before my laparoscopy. Has anyone else ever been in this situation or know any more information??

[ehttie]

I am also BRCA 2 positive. I got referred to see gynae for awful periods. I had a transvaginal scan and all appeared normal and I didn't really fit the bill for having endo as only experience awful pain at the start of my period and not other time (though having thought about it I do have some other much more subtle symptoms.

How long have you known you were BRCA positive? You managed to have both of them? It is such a difficult thing to work out mentally when you have been told you have it, I've know for about 5 years.

Whilst at gynae appointment we ended up talking about BRCA and how it increases the risk of ovarian cancer. There is now some research suggesting that it often starts in the fimbrae of the fallopian tube and moves to the ovary and removing these can reduce the risk.

I've never wanted children and having BRCA put the nails in that coffin as I would not want to pass it to the next generation for them to have to deal with it also so having my tubes removed seemed a no brainer for me.

When I had my op they also found awful endo- which was a surprise which was something else to get my head around again.

I've always intended to have double prophylactic mastectomy and now beginning to think that it ought to happen early spring next year.

If you need someone to talk to I'd always listen.

Your questions are something that your breast care consultant would probably be able to help you with. I'm lucky and have found them very supportive.

Are you having yearly MRI scans aswell?

best wishes

Leila

[darylchristianne in reply to ehttie]

Hi there, thank you that's really interesting to hear from someone in the same situation. I know it's ridiculous I don't know off the top of my head but I think it's BRCA 1. Actually I meant to say I could have the genes, I haven't actually got my results yet and I still might be clear, but at the moment all I know is that I have a 50% of having it after my mum was diagnosed with ovarian cancer and it was found she has the gene. I was just wondering about the implications for if I do.

I don't have actually have a breast care consultant at the moment because I'm only 17 and even if I am positive I won't until I'm a little older. If I am positive along with endometriosis I will really have to consider about having a family, thats something I really want to do but as you say, my gene pool is just a shark infested mess I don't want to passing on, so whilst it's too early to consider doing what you have done, I do occasionally wonder about adoption.

My mum doesn't think I should worry about it because by the time my kids have grown up everything will be advanced enough it won't matter. And not knowing about the gene is half the problem anyway.

It's been really weird to see how many people can have endo without realising it, it's making me feel better about getting the operation.

I'm not getting MRIs yet just because of my age and it's not confirmed yet. Thank you so much for your help, and I'll keep that in mind, you too.

Best wishes, Daryl

[ehttie in reply to darylchristianne]

If you do have BRCA 1 you can have IVF and select clear embryos. When you get your results please let me know either way. If you are positive you will be offered risk reducing choices. But you don't need to worry about that yet.

[darylchristianne in reply to ehttie]

Yes I had heard something about that, I'm trying not to worry about it all too much now. Who knows, I might be clear! will cross that bridge when I come to it but thank you so much, I will certainly let you know xx