BRCA1 - gutted - anyone with anything hopeful or encouraging to say?

[BRCA1]

I have daughters and nieces.

I have breast cancer

I am now heading for a double mastectomy and hysterectomy

I have been crying since I got the news, 2 days ago

@BRCA1 I'm so sorry. I've no experience of this but sending a hand hold. Do your daughters know, have you been able to speak to anyone about it?
Look at it this way, you're now in the road to recovery and the cancer will be gone. I've not idea how I'd feel, for a start learning I had cancer, let alone having my breasts off.
Thinking of you 💐

thank you, yes, my daughters know, they need to get the ball rolling to be tested themselves now, to see if they need breasts and ovaries removed too. I've been contacting my brothers one by one to let them know too - any nieces on the pill need to come off it at once- that is a tough conversation for the parents to be having. They could also all go for immediate mammograms in the UK, but they are all in different countries, so I don't know what the set up will be where they are.

Its like a nuclear detonation in the family

I haven't even started on cousins yet

I know this might be an odd thing to say but as someone who has a potentially life limiting chronic illness myself I think try to see this as a positive- not the cancer of course (!) but the fact you can now make everyone aware of the gene, it’s better for them all to know and make informed decisions rather than not know. Sending you lots of best wishes and strength.

I had ovarian cancer and was tested for BRCA. I was negative, but I did some research in the meantime and whilst it was a horrible prospect, I realised there was a lot that people can do to protect themselves. My DD has always wanted kids, and I found that ovarian cancer doesn't tend to start until I think it was mid 30s (depending on whether your BRCA1 or 2), so it would've been a possibility for her to have kids first before having them removed. Similarly, it's clearly crap to have a mastectomy, but it reduces the risk to below everybody else's. Also, the prevalence of cancer has massively increased - even people with the BRCA gene didn't used to get as much cancer as they do now, so with knowledge, your relatives can make lifestyle decisions that will reduce their risk.

Also, it isn't your responsibility to look after everyone else, make sure you focus on yourself and your DDs and let other family members take some of the burden

thank you. Is it BRCA 1 or BRCA 2 that generally doesn't cause ovarian cancer until mid 30s please? That would be good to know. I currently just don't dare google anything.

Ovarian Cancer Action charity says "In both BRCA1 and BRCA2, the graphs show no significant increased risk of ovarian cancer until age 45. If you have a BRCA1 gene mutation, risk increases at age 45-49 and again at age 55-59". The mean age of diagnosis seems to be just over 50 (without any surgery, obviously). Another study recommends getting the ovaries removed between 35 and 40.

My sis in law had a mastectomy and had recently had her ovaries removed due to having the Braca1 gene.

I'm sorry you're going through this.

That is very helpful, thank you. We have had earlier deaths than that in the family (we didn't know until last week it was BRCA1). Is that just the law of averages, do you think, or is there a "bad" one? I don't know which one weve got

OP, I know this is hard news, but agree with PP that having this information is good news for your daughters and nieces and cousins.

They will now be in position to have early and more regular scans, can have preventative surgery when the time comes, can avoid medication that would increase their risk and can bear in mind timing of planning a family and potentially embyro selection to avoid passing the gene on.

And they may not have inherited it at all.

You have your own health battles to face and focus on now so don't take on anyone else's more than you can help it. Information is power and now you all have this.

All the best OP.

BRCA1 has an earlier age of onset than BRCA2, breast cancer increases from around age 30 I think, so that's the earlier age risk rather than ovarian.

So sorry to read this. We have this in my family but in a stroke of luck, only one daughter of five was affected. And out of her four children, one son carries it but has been given lots of screening.

I believe it is just averages. Sorry to hear of the young deaths in the family. Genetic counselling should be available for all the close relatives and they will be able to advise.

I have the faulty brca1 gene - my mum was first diagnosed with breast cancer in her thirties and then again in her early forties.
She has had both breasts removed and also her ovaries. She has been cancer free now for over 10 years.

Just try and focus on yourself first, it is scary but try and stay positive. The genetic testing can be carried out further down the line. In my case my cousins couldn't even be tested until their parent had been. There is a 50% chance you won't pass it on to any of your children.

I inherited the faulty gene from my mum - I am grateful to have been tested as it has meant I can be monitored more closely and was able to make decisions which would potentially avoid going through the same as my mum.

Sending you best wishes for surgery and recovery

Thank you for your input. It is good to hear from others in the same situation

Sorry to hear this OP.
as others said, focus on the positives in that even if your daughters carry the faulty gene there is surveillance and risk reducing surgery for them.
You could not have done anything differently; you did not know.
How old are your daughters? They will be referred to genetics and be able to talk through their options.
Take it one step at a time and focus on your own health for now. 💐