Questions? 

Lots of people have questions on this topic, which I’m more than happy to help with if I can.

Il put a few common ones on here but anything else please comment on this page and I will then put the question on this page and answer it 🙂

confused

How long did it take to decide to have the risk reducing surgery?

No time at all, once I knew I had the brca mutation it was a no brainier for me. I didn’t want to go through the same as my mum and have no control, I want to have kids and watch them grow up.

Once you decide to get tested how long does the whole thing take? 

From finding out my results to my op was a year. And obviously i had apts before the results, it’s a lengthy process. So don’t keep putting it back if your thinking about it.


What’s the recovery period like? 

It’s slow. But you get there. I was great after a month. But that really does depend on the type of reconstruction you have. Don’t push yourself and undo their hard work, ie blowing stitches.



How are the scars? 

Not bad at all, faded brilliantly already . It depends on where they cut you and how you heal.



Can you feel your breast after wards?

Hmmm not really. They are pretty numb , but who cares I would rather numb boobs than cancer.



Can you breast feed? 

No. Everything including milk ducts are taken out.


Will you stil need mammograms ?

No further screening is needed RE your breasts

 

What if I don’t qualify for NHS BRCA testing?

The criteria in the NHS is so strict, and unfortunately they won’t test everyone. I have spoken to lots of ladies who were refused testing and then went privately and it turns out they carry the gene. I think this is awful and the criteria needs to be re assessed.

A few links are below to private companies people have used for BRCA testing:

Gene health UK

Color

 




18 thoughts on “Questions? 

  1. Hi Charley firstly I think your very brave and this blog is really helpful to me. My family have recently been struck by breast cancer, once again! My Grandma had breast cancer and is still with us, my auntie died from breast cancer at the age of 28, my mum has just recently been diagnosed with breast cancer and starts chemo next week. The results have come back that it is the brac gene. We have been through the genetic process before my mum was diagnosed but at that time they would not do any further testing on me unless my mum was to develop breast cancer. So obviously now everything has changed and I am now booked in for a mammogram on the 1st of December. However I had a phone call to say even before my testing at this stage with my family history I would be offered preventive surgery. Would you have gone ahead with the operation if it was offered to you just based on family history, even before you knew you had the gene? x x x x

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    • Hi Tara yes I definitely would. How old are you? I think from family history you can tell a lot of things, and if your mum has it there’s. 50/50 chance you will. Maybe just get the test ASAP? When can you have it? Xx

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  2. Hi Charley
    Thank you for your reply, I’m 31 and have 3 daughters so this is important for them too. I have a few appointments coming up so hopefully I can find out ASAP. Did you have yours done in Manchester?

    Thanks Tara. X

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    • I had my genetic testing done at st marys in manchester and my operation at wythenhAwe. from the day of my results to my op it was about a year. So I would really try push through your genetics stuff ASAP really if your at high risk of getting the gene. They will draw up your family tree etc there and calculate your risk. Hope your feeling ok about it. Pester them on the phone it’s the only way to get things moving unfortunately xx

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  3. Yes I’ve already had to pester they wanted me to wait until my mum was well into her treatment 6 months on but I don’t see the point when they have what they need from my mum. I’m awaiting an appointment to see a lady called Tara Clancy at the genetics place to discuss the surgery option. She saw my mum just this week and told her that I’m eligible for surgery regardless of if im positive due to family history. So I telephoned to speak to her and she confirmed that this was the case and is sending me an appointment out. But like you say I have to just keep pushing for them to see me.

    Thank you again for getting back to me. X x

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  4. I’m definitely going to, I just thought I would have to push for it a bit more. I was surprised when she told me that it would be offered to me. However I might need to yet because I haven’t actually been to the appointment it’s only what I have been told over the phone. I live in Poulton-Le-Fylde just outside of Blackpool. X x

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  5. Thank you so much it’s tely helpful speaking to someone who has been through it. I will definitely be in touch you have accepted my Facebook request so I will keep you updated on my progress.

    Thanks again
    Tara x x

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  6. Hi Charley hope you can help?I’ve just been to genetic clinic at st Mary’s today ,the breast cancer type in our family history can’t be gene tested ,however they have obtained all the family history and classed me and my sisters as high risk, I’m now currently waiting for an appointment to speak to the pshycololoist as surgery is with no doubt the only option for me . From reading your blog I notice you suggested research Into the right surgeon …can you advise me how and where do I start with doing this ?(I saw proffesor Gareth Evans at my appointment today) kind regards ,Laura

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  7. Hi! I’m having the same procedure on Tuesday and reading this helped relieved so much anxiety! Thanks so much!
    I’m in a Dilemma now on the incision point. I don’t know if I should do the under boob or side boob incision. I’m thinking under boob so you can’t see the scar in a bikini. Whould you mind sharing your thoughts on this?

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  8. Hello. My sister who was also my best friend found out she had breast cancer at the age of 30 while pregnant with her first baby. Within a year and a half she passed away. We knew nothing about the brca 1 gene before her diagnosis. We both are brca positive. My double mastectomy is in November. All I’ve wanted was to be able to ask her questions and talk about it with her….but she is gone. And it still hurts to talk about it to anyone. I was wondering if you could give me some tips or advice about the surgery. I’m 29. I’m not married but I have a very supportive boyfriend for the past year. But it’s still very scary, irregardless I plan on being an advocate…it was something my sister was so good at and I already have one story going out in the papers. I think after seeing your blog I’m going to make my own. You’re a very strong person and I’m the exact same way in wanting to share my story in order to save more people. Thanks so much, any advice is helpful. The attached website was my sisters blog. I’m not the best with words so my blog will be difficult for me.

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