Hysterectomy, double mastectomy, BRCA1

A few months ago I was diagnosed with the BRCA1 gene mutation. My Aunty has the gene & I was tested & it came back positive, my sister has also tested positive.

I’m 41 & my grandmother passed at 51, my Aunty was diagnosed with cancer in her mid/late 40’s & has been battling cancer for over 15 years.

The more I read, the more scared I am. Honestly the amount of personal stories of women going for the preventive surgery to find the cancer has already started! Most are in their 30’s & 40’s.

I already knew if I was to be positive I wanted a hysterectomy & double mastectomy. I was told originally I would have an appointment with the clinic at the RWBH within about 6 weeks & then I could discuss my options & treatment plan.

I have received a letter saying this is a cat 3 & I’ll be seen by the clinic within 12months. I called to check & they confirmed this is the case. My understanding is that I’ll see a specialist & then likely will be placed again on a list for both hysterectomy & mastectomy.

With what I’ve read & my family history I am not wanting to wait this long. I’m a single parent & only recently started working in a professional job.

My sister is going private for her hysterectomy & has private health cover. I’ve not had any private health insurance.

I called a clinic today to see about the possibility of being intermediate & their is someone in Brisbane that does this.

My question is has anyone else been in this position? Can anyone tell me roughly how much I’d be out of pocket considering I have no private health cover? Does anyone know how much this may cost?

Are their any ladies here that have been through this process & done a double mastectomy?

I’m not a small busted women (E cup) & I’ve seen so many cases of women having reconstruction & getting infections. I know there’s a number of ways to go about a reconstruction, & I wanted to go down that route. But the more I read the more I’m thinking it’s a very painful process & lots of risks of infection.

I just can’t imagine myself with NO boobs. I’m not a small woman & I’m worried I’ll look like a freak...but at the end of the day I’d rather look weird than be dead or fighting cancer. Keeping them is not an option for me. I want to be around to see my kids grow up.

I’ve found it hard to connect with others in Aus, most of the groups I’ve joined are in the U.S. & their health care system is different to here. Anyone been through this or know where I can find helpful & accurate info?