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Preventative double mastectomy

6 REPLIES 6
Member

Re: Preventative double mastectomy

Hi Alexia, 

I’m also new to the forum and hope your situation has improved since you posted (also hope you get this message as I know you posted a while ago)

 

My Mum was diagnosed with breast cancer 5 years ago today. She had treatment and recovered and three years later she had it again in the opposite breast. I know the feeling of your world falling apart. My aunt also had breast cancer twice so our family history is pretty strong. 

 

They did the test for my Mum during her first course of treatments and found she does carry the BRCA2 gene. So myself and my sister (26 and 24) also got the test. My feelings were always that I’d rather know and prevent it if I could. Myself and my sister both came back as carrying the gene. 

 

I knew even before we had the positive result that I would have a preventative mastectomy. The other option presented to me was annual checks but I felt that this wasn’t enough especially considering how aggressive my Mums cancer was. 

 

Do be aware it’s quite a long journey to surgery, I found out I am positive just over a year ago and am still not close to surgery. You will be required to speak to all sorts of doctors: oncologists, breast surgeons, plastic surgeons and therapists. And of course you can pull out at any time. 

 

With any luck you wont test positive and you can carry on without worry but if you do please know it’s not as life changing as you may think and you can definitely get through it. 

 

Sending love to you and your Mum

Amy

Member

Re: Preventative double mastectomy

Hi Alexia

 

It's Emily here from Breast Cancer Care.

 

I wanted to let you know that we have an email volunteer called Gemma, who had a preventative double mastectomy in her 20s too. You'd be very welcome to email her for support as she's 'been there' and can share her perspective with you, if it's helpful.

 

You can email her at gemma@breastcancercare.org.uk and visit her profile here: https://www.breastcancercare.org.uk/information-support/support-you/someone-talk/someone-me/our-volu...

 

Thank you

Best wishes

Emily at Breast Cancer Care

Member

Re: Preventative double mastectomy

Thank you so much for sharing your own personal experience Lesley, I really appreciate it.
I didn't know about the implants and risk of cancer, I'm so glad you're being checked.
I feel like if there's any way of reducing my risk of breast cancer, and from having to go through all of the mental, emotional and physical pain that comes with it, then a double mastectomy is a small price to pay for that.
I keep thinking of when my Mums breast cancer surgeon told us the news that Mum had cancer, and how I felt that my world and heart had just broken. I can't ever imagine what I would feel like if that happened with my child sat there with their heart breaking for something I could have prevented. I mean I know cancer is a risk anywhere, to anyone, but with the high risk of Breast Cancer especially within our family, it seems like a good decision to make about preventative surgery. I think I'm definitely steering towards the option of surgery.
Thank you so much, and I just want to say Well Done for how brave you have been through your surgeries. It takes a strong person to make the decision alone, nevermind go through with the surgery, and I'm hoping your check on your implants goes well too!
Thank you again so so much,
Alexia xxxx
Member

Re: Preventative double mastectomy

Hello,I've had a double mastectomy around 4 years ago and straight away afterwards,had implants with stratus. They're not pretty,and I have no nipples,but I could have had them tattooed on. I chose not to. They look fine with clothes on and I never need a bra. The pain wasn't too bad and I managed to drive after 3 weeks. It takes around a year and a half for them to feel like your own,although they don't stay warm very long,they're nice and cool on holiday 😂 I saw something on Panorama tonight about stratus implants and this they CAN cause cancer in SOME patients. I have been invited for a check,am not sure what it entails,but shall go,it helps with their studies. We have the BRAC2 Gene in our family,I've had my ovaries out,too
Even if you don't decide to have implants,it's not if but when you'll get it. (I was lucky enough to meet the professor at the time,who advised me of this) and I do feel that I've reduced my risk of cancer, significantly. I don't feel any less of a woman,either. I wish you well on whatever you decide, best wishes Alexia x
Community Champion

Re: Preventative double mastectomy


If you’d like to find out more about the Someone Like Me service, then you can call 0345 077 1893 or email someonelikeme@breastcancercare.org.uk
Community Champion

Re: Preventative double mastectomy

Hello Alexia,welcome to the forum .Im very sorry you and your family are going through this.There is a lot for you to get your head round at the moment so maybe just take one step at a time .Even though breast cancer occurs a number of times within a family it does not necessarily mean there is a genetic connection .Your Mum may not have the gene and if she does you may not have inherited it .I believe you can opt more high level monitoring as an alternative to preventative surgery which you may wish to do while you get your head around things if you do find you have the gene .It might help to speak to someone who has been through this too - Breast Cancer Care has a Someone Like Me service where they can put you in touch with someone by telephone or e mail who has been through similar .I will try and post a link.Best wishes Jill.
Member

Preventative double mastectomy

Hey everyone,
I'm new to this, but I'm Alexia, I'm 22 and I have a very high volume of cancer in my family history.
Just two days ago, that family history hit my mum, she has been diagnosed with an aggressive form of breast cancer.
Due to this, and due to all of the breast cancer in our family, they want my mum to be tested for the BRCA genes, and ultimately me to be tested too.

I just wanted to ask people, if you were in my shoes (which I'm sure, many of you are or have been) would you want to find out and be tested for the gene?
And if so, would you take the preventative measures like a double mastectomy?
I have had my mind made up for years about the fact that if I did have the gene, then the double mastectomy would be what I would want. But I just don't know if I want to find out about having the gene.
I know I probably sound confusing. I'm in a rough place right now, my mum, who's my best friend and entire world, going through this is breaking my heart and it feels like my world has come crashing down, so please bare with me.
Thank you in advance,
Lots of love to you all-all of you are amazing.
Love, Alexia xxxx