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BRCA mutations and preventive surgery

Usually people who want to find out if they are a carrier of a mutation on the BRCA gene see their GP who refers them for screening at a specialist cancer hospital, where a blood test is taken. People were impressed by the support and information they received during the screening process. They were also often shocked by their diagnosis (see Feelings about diagnosis).
 
When people discover they are a carrier of the mutation, they can choose to have regular screening to closely monitor changes in their breasts or ovaries. This usually involves CA-125 blood tests (ovarian cancer screening test), a yearly mammogram or MRI and a yearly trans-vaginal ultrasound. The type of scan used for monitoring will depend on factors such as age, whether there is a known BRCA mutation,or how likely this is. The specialist clinic will decide this and advise the individual. Caroline entered the UK-FOCCS study (Familial Ovarian Cancer Screening Study), which provides screening using a CA-125 blood test every four months and an annual ultrasound scan.
 

Caroline’s mum was very pushy about screening and encouraged her to get in touch with the...

Caroline’s mum was very pushy about screening and encouraged her to get in touch with the...

Age at interview: 36
Sex: Female
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Then because I was only 34 at the time, and they won’t do any kind of screening until you’re 35, I just ignored it because there was absolutely nothing I could do. You sort of feel like well I’ve got something, and something horrible might happen to me, but there’s absolutely nothing I can do. You feel quite powerless and the easiest thing to do is to ignore it, because there’s nothing else you can do.
 
So, I didn’t think about it at all until I’d turn 35, and then my mum said, “Right you need screening. You need it now. Phone the consultant. Sort it out.” She was really pushy, pushy, about getting screened. I was a bit more relaxed. So I emailed the consultant and said, “You know, I’m 35 now. What happens next?” So he started chasing up appointments with the breast clinic for me, and for ovarian screening. And that’s how it all started. And that’s when I started reading up on what BRCA II meant and then I thought, ‘oh my God, this is quite frightening’.
 
I think at that point I got very obsessed with it, and read absolutely everything I could find anywhere, because I had to know exactly what it meant. And I think you’re very, very drawn into it, and then you feel very isolated, because its not something that people really understand. You say to people, “I’ve got a genetic mutation, and I’ve got an 85% chance of getting breast cancer”, people can make all the right noises and go, “Oh that’s terrible.” But they don’t know how you feel inside.
 
And I think it was something I read on a website that I can really relate to. A lady said, “Having breast cancer is less scary in a way, because you can get rid of it. You can have chemotherapy or radiotherapy or your breast off and it’s gone. If you have a BRCA II mutation, it’s at the core of you, it’s never gone. It’s something that’s always part of you.” So that’s what’s quite scary about it. It’s not something you can get rid of, and it’s not something that is definitely going to do something to you, it might or it might not. So it is a bit frightening.
 
An alternative to regular screening is the option of preventative surgery to remove the breasts (mastectomy) or ovaries (oophorectomy).
 

Caroline describes taking part in the UK-FOCCS study and her reasons for deciding to have a...

Caroline describes taking part in the UK-FOCCS study and her reasons for deciding to have a...

Age at interview: 36
Sex: Female
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I went for a mammogram. And, in fact actually, I went for ovarian screening first. So, you go along and you speak to a clinical nurse specialist who takes your family tree and talks to you about... there’s a study that you can go on, called UK FOCCS which means you get a blood test for CA125 which is an enzyme in your blood once a quarter, and they just check that it’s in a certain level, and if it goes above that level, then they’ll call you back and do another blood test. And you have a once a year trans-vaginal ultrasound.
 
The blood test is not exactly an exact science, because she was telling me if you have any kind of inflammatory diseases, and I suffer from IBS which is classed as an inflammatory disease, that can make your results zoom out of control. So, she said, you might get false positives, you might be called back all the time. You also might have things show up on the trans-vaginal ultrasound that are not there when they call you back for another one. And you know, they might say to you, ‘Right there’s something there. What do you want to do? Do you want to have an oophrectomy? It’s all quite scary. A bit up and down.
 
So I decided to go the study. I thought it’s better than not doing anything at all. So I did that, and I had my first scan, and then I do my quarterly blood tests. And I’ve only been called back once, because one was very high. But I think that was more due to stress, because it was taken just before I was due to go in for my mastectomy. So… Then I went for my mammogram, the first mammogram, and then you have an MRI, and I went for an MRI, and then straight after my MRI, I went on holiday. And when I came back there was an answer phone message from the breast physician, who said, could I ring her urgently. 
 
And so I rang, and apparently on my MRI they’d found shadows on both my breasts. And could I come in for an ultrasound? And I think it was like a week in between getting the call and getting my ultrasound, and it was the most stressful week, because I thought, oh my God, what is it? What have they found? What did they mean? And it was then that I realised I can’t live my life thinking every time I have an MRI or a mammogram, if something comes up, what it is? You know, I can’t live with that. And it re-enforced my idea of having a mastectomy because I just think, I didn’t need my breasts anymore. I’d fed my children. They’d gone south you know [laughs]. I’d get a new pair, and you know, they’re only breasts at the end of the day. They’re not, they don’t define me as a person or woman or anything. So the reason they’d found these shadows was because they’d done it very close to my period but not checked. So had they checked, I wouldn’t have had any of the stress.
 
 

Karin couldn’t live with the uncertainty and stress every time she had an MRI or mammogram so she...

Karin couldn’t live with the uncertainty and stress every time she had an MRI or mammogram so she...

Age at interview: 39
Sex: Female
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I didn’t have the 90% figure when I got my results. I had a, I think we were up to about 70 at that point. But even with that, there was no question [name] was three and a half at the time, yes, she was about three. So I didn’t have a choice because I was 35 or 36 and I had a baby.
 
So you had no choice other than to have the mastectomy?
 
Well, I felt I had no choice. Everyone makes their own decision but for me, I had to do some, if I had an opportunity to do something, I didn’t want to actually ever run the risk of regretting it because I didn’t want to do it, or I’d do it in a few years time, or finding an excuse. I wanted to actually deal with it, and deal with it now. So after my genetics appointment they made me an appointment with the breast surgeon.
 
I went to see him, he was very nice, we started discussing what form of surgery we’d go for, and he said, “Well you need to do plast… see plastics, because I opted for a bilateral DIEP, which is basically moving the tissue from the stomach to the breast. And it’s more a plastics job than a breast job.
 

I don’t know whether I would, it would always be a concern. If I wouldn’t have been genetically screened, it would always be a question, because of my family history. If I’d been genetically screened and not done, not had surgery, I think I’d be very anxious, I’d be a very different person. Because one’s breasts change and you feel things, and, I mean even now I know, I know what my breast feels like, but it’s different to the way it used to feel, and you feel different things. And you would just always wonder. Yes, is this lump, is this cyst, is this… whatever and you don’t know. I would do it again tomorrow. I would say, if you’re in doubt, speak to your doctor. Go and get tested, and take it from there, because the support is out there. Because it’s such a specialised thing, the people who support you are knowledgeable and they know what the best thing is for you which may not necessarily be surgery. It may not be the sort of person who can deal with that, and you can deal with having to wake up every day and wonder. Always a sort of a time bomb because you don’t know. It’s like Russian roulette. You don’t know whenever your time’s up. 

Making this decision was very difficult for the women we spoke to. (See Feelings about diagnosis) Some women found it easier to have one of the operations than the other. For example Hayley found it easier to decide to have her ovaries removed because she'd already had her children, than to have a mastectomy. When Karin discovered that she was a BRCA carrier with a 90% risk of developing breast cancer, she said it was an “incredibly positive experience to be given an opportunity to be proactive” and immediately after getting her results she knew she wanted to have a double mastectomy.
 
Some women found the decision to have their ovaries removed harder. Michelle didn’t want to have an early menopause but eventually decided to go ahead with the preventative surgery. Karin and her husband, who have one daughter, decided not to have any more children and to have her ovaries removed.
 

Hayley found the decision to have her ovaries removed “a no brainer”.

Hayley found the decision to have her ovaries removed “a no brainer”.

Age at interview: 39
Sex: Female
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On that day, they said, because at that time I was 38, 39. Yes, 38. This is the deal, I had at that time, an 80% chance, no a 60%, no an 80% chance, I had a, hang on basically it was something like a 60% chance of ovarian cancer, and something like 80% chance of breast cancer. No. I lie. 60% chance. The previous ten years, because I had this gene in my thirties, I had an 80% chance of breast cancer because I didn’t know about it, yes, because I lived those ten years, it went down to 60%. So 60% of one and I think 30% for ovaries to 60-60. I can’t remember the figures now. 60-60 I think. I don’t know. But high risk. I was like high risk. High risk. [laughs] So they said, “This is the deal, you either have a mammogram and an MRI once a year to check you out, and then every four months we give you a blood test and every year we will give you an ovary scan, but of course it’s not foolproof.” And so you come away thinking ‘Oh God’. And then they said the alternative is to have your ovaries removed, which gives you instant menopause, and of course all the side effects of having, you know, HRT, and that kind of stuff. But that in turn reduces your chance of breast cancer by 50%. 
 
So to me it was a no brainer. I had to have my ovaries removed. You know, I had my boys. I wasn’t going to have any more kids. They were kind of superfluous to me, save my husband having a vasectomy [laughs] so it was just kind of like, I had to have my ovaries removed. So then the pressure is on, and you are thinking I have to have, you know, my ovaries removed before I get the cancer… you see you are convinced that, just because you know about it that you are going to get it, which doesn’t always figure, but of course, with turning 40 this year, and they… I suppose I just thought that’s the trigger to all, you know, at that age that was when [cousin] had her cancer and I was… And because ovarian cancer… she never had breast cancer. Ovarian cancer was the thing in our family, then we should think about it. So I had my ovaries removed in August, which wasn’t such a huge operation as keyhole surgery.
 
 

Hayley is not sure how she feels about possibly having a mastectomy.

Hayley is not sure how she feels about possibly having a mastectomy.

Age at interview: 39
Sex: Female
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With the mastectomy I have no idea. So I am not sure I’m going to have it. I don’t know. I just don’t know. I need to find out more information. I need to find out how they’re built up. I need to find out, because the photos I’ve seen on the internet, you lose your nipples and I think, I don’t know if I can, I mean I’m not body beautiful or anything in any way but that’s a biggy and I need to see what kind of scarring it is. I mean if I could come out with a pair of, a perfect pair which don’t sort of sink underneath my armpits when I lie down, maybe I’ll consider it, [laughs] you know, it depends what I come up with. 
 
I don’t know, and I also need to know where they get the infill from it, I mean if it’s going to come from, if it’s going to cause me a lot of pain, then I’m not into pain in any way, but equally if it takes a wodge of fat off my hip and shove it there, maybe I don’t know. I really don’t know. I need to find out more about it and that’s what I’ll find out in April. I need to know what they do. If they absolutely take everything away and I have nothing then that would be a biggy for me.
 
 

Michelle found it helpful to talk to a genetic statistician when deciding whether to have a...

Michelle found it helpful to talk to a genetic statistician when deciding whether to have a...

Age at interview: 41
Sex: Female
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So you’re planning, you’re organised your surgery for your other breast then?
 
I have. Yes. The, because of my age, and you know, I went to see a statistician and a genetic statistician who helped me work things out and put things into some kind of perspective for me. And sort of said, “Well look your age is this, this is the statistics of you getting it again within x amount of years. My advice is that you think about having a…. doing things… you know, you have choices,” and helped me make a decision. You know, for a long time I was battling it with that decision. You know, I’ve got a healthy, one healthy breast. I don’t want to have more surgery. It might never happen. I’m on Tamoxifen. That might keep it away. Do I really want to have surgery? Is it really going to happen again? You know, battling with, with all these things and then ultimately I’d come out the other side with, okay I’ve negotiated with myself enough now. I don’t want to take any chances now. Actually I am scared. Actually I am going to go and do it.  
Mastectomy
Caroline’s decision to have a double mastectomy was reinforced when a mammogram showed she had shadows on her breasts. Caroline and Karin both had their operations cancelled at least once because another patient needed the bed. Karin said, “I mean I was covered in black marker. I’d psyched myself up and was at that point, a total wreck”. Caroline, who had a double mastectomy and a reconstruction on the same day, said the build up to the operation was more stressful than the operation and recovery afterwards.
 

Caroline’s mastectomy was cancelled the afternoon before she was due to go to hospital because...

Caroline’s mastectomy was cancelled the afternoon before she was due to go to hospital because...

Age at interview: 36
Sex: Female
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Then I was due to have my mastectomy in October 2009, and it got cancelled once, because they had a cancer patient come in, who needed my slot which was fine, I didn’t mind. But then it was due to be, I think, November, no a couple of weeks later in October 2009, and I got a phone call the afternoon before, saying, “We have no anaesthetist, your slot is cancelled” which threw me into turmoil, because the afternoon before, you’ve got your whole life, you’ve got your bag packed, you’ve got your husband’s taken three weeks off work, your kids are going here, there and everywhere. Grandparents are looking after them. You’ve got everything in your head as it should be and then it’s gone. So that was an incredibly stressful time for me. And then I finally had my mastectomy in November last year.

Reconstruction after a mastectomy can either be done during the same operation or at a later date. A new breast shape can be made by removing all the breast tissue and inserting an implant or by restoring the shape using tissue from another part of the body.
 
Karin, who had reconstructive surgery using tissue taken from her stomach, had a 14 hour operation. Her stomach was very tender which had made her recovery longer. She is now waiting to have an operation to have the nipples put on her new breasts.
 

Michelle found her skin saving mastectomy very painful and she has decided not to have the same...

Michelle found her skin saving mastectomy very painful and she has decided not to have the same...

Age at interview: 41
Sex: Female
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And are you having the same procedure?
 
No, no because that was hateful. That was hateful, now if I knew then what I know now, I’d never have had that surgery. It was horrendous.
 
Why did you choose that procedure in the first place?
 
I didn’t choose it. It was chosen for me. Based from my surgeon, based on, oh, because I had something called a skin saving, or skin sparing mastectomy which mean that they just took out everything but left my skin. And you can’t put, just put, you could just put an implant in there, right, but I don’t think it would have… and at the time we didn’t know I had BRCA. Although he had feelings, he didn’t share them. So in order to match it up with my other breast, he felt, and everyone else around him agreed, and me, but I was like a lamb to slaughter in those days, didn’t have a clue. I was just in a state of constant drug induced panic. Horrendous. It would be the best way of getting a good shape to match my existing breast and they take like, it’s like an ellipse shape from your muscle of your back. And that is…. I mean it’s incredibly clever … they wrap it round. They sort of thread it round under your arm and make the shape which is amazing. I mean I’ve got a great shape there which I would not have had without it. But it was very, … and looking back I suppose I’m grateful that I’ve got a great shape. But so painful, so painful, and the recovery was not great. And knowing that I had to down the road of chemotherapy, only six weeks later, gloomy, miserable and because they take away this muscle from your back, your body naturally is missing something. So, it fills the hole with fluid every ten days. You have to go to the hospital to get it aspirated. I mean, honestly. I don’t like needles. I’m needle phobic. This hole where they took the muscle from fills with fluid basically, and you have to aspirate it literally every two weeks. For about five months. It hurts. When it’s building up it hurts like you’ve got a leech there, like… I mean grim, grim. So no. However, and I’m not having it this time. No. However, and I’m not having it this time. No because I don’t care.
 

Caroline had a mastectomy and reconstruction using saline and silicone implants and now has a...

Caroline had a mastectomy and reconstruction using saline and silicone implants and now has a...

Age at interview: 36
Sex: Female
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 And so they removed both breasts?

 
Yes.
 
And did they do a reconstruction at the same time?
 
Yes. I had a prophylactic bilateral mastectomy, which meant I had the skin sparing mastectomy, so they kept all my skin, and I had my nipples removed. And I’ve now got implants, which are saline and silicone implants, which over a number of weeks have been inflated with saline.
 
Yesterday, I went back because what they do is they over inflate them to make them softer, and yesterday I went back to take some of the saline out. And that makes them a little bit smaller. The size I wanted now. They are softer like they were before.
 

Karin describes her recovery from her double mastectomy and reconstruction using tissue from her...

Karin describes her recovery from her double mastectomy and reconstruction using tissue from her...

Age at interview: 39
Sex: Female
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Just from a logistics point of view, a support point of view. We knew the surgery that I opted for was very major. It ended up being fourteen hours of surgery. And because obviously, they remove tissue from your stomach, they cut you from one side to the other to move everything up. So it’s quite debilitating, and you’re very restricted for a long time.
 
What sort of time?
 
I didn’t drive for about ten weeks just because, your stomach is just so- my boobs are fine - it was just my stomach was just so tender. And just moving and helping to shower just generally, every day things that you actually take for granted, that you need help with.
 
What sort of length of time were you in hospital for?
 
I was in hospital for ten days, which in this day and age is a long time. I was in hospital for ten days. I was in intensive care overnight and then moved down onto the ward. But I think the main reason for putting you in intensive care is because you’ve just come out of such a long period of surgery, that they want you monitored closely. And also the, after the surgery, the most critical time for the breast tissue to take is the first 24/48 hours. If it fails, it’s going to fail in that period of time. So they like it closely monitored.
 
So did you go, was, was your main reason to go for the stomach tissue to avoid the fact that you wouldn’t have to do it again?
 
Yes. Because I always knew that if that failed there was always implants as an option and I’m not a great one for surgeries, and I think, putting yourself, personally for me, putting something foreign in your body, if I can avoid it, I will. And that gave me the option. So I’ve got new boobs and a tummy tuck [laughs].
 
How did you feel when you lost your boobs? The boobs that you had?
 
Delighted [laughs]. It was [exhales], I looked on it as an opportunity, it was an opportunity for new boobs, that weren’t saggy, that I was happy with. ...I try and look at things very positively, and I thought it was brilliant. I would never have considered having my boobs done on a, on a normal, everyday basis, but I’ve been given an opportunity and why not take advantage of it. I mean it wasn’t easy, and I know I’m very flippant about it now, but would I do it again tomorrow!? No question. Would I go through all the pain and all the dressing changes that used to take two hours? Yes. 
Both women were pleased with the results of their operation although Caroline reflected on feeling uncomfortable having the operation on a cancer ward.
 

Caroline felt a fraud being a patient on a cancer ward. She is very pleased with the results of...

Caroline felt a fraud being a patient on a cancer ward. She is very pleased with the results of...

Age at interview: 36
Sex: Female
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From going in, it wasn’t stressful at all. I think the build up is far more stressful. From getting your date to going in is really horrible. When you’re in, it was not as bad as I thought it was going to be. It was quite relaxed. The staff at the hospital are fantastic.
 
I did feel, and I’ve heard a lot other people say this, I felt like a fraud being in a cancer ward, because I don’t have cancer. I’m not unwell. And to go in and get the same treatment, and care and support as a cancer patient made me feel horribly uncomfortable because I saw people on the ward who were really ill and, you know, suffering a lot, and I felt like I had a chance they hadn’t had which made me feel very, very guilty.
 

But my experience was very good. I had a very, very good surgeon, and the staff looked after me really well. I made a lot of friends on the ward, who I am still in touch with. And, yes, it was, less painful than I thought. The recovery was good. And I’m very pleased with the results. 

See more experiences of mastectomy in our 'Breast cancer in women' section.
 
Oophorectomy
For carriers of the BRCA gene mutation, having an operation to remove the ovaries reduces the risk of ovarian and breast cancer. Most people who had an oophorectomy talked about it being a relatively straightforward operation. Hayley had her ovaries removed when she was 40 years old, by keyhole surgery. She left hospital the day after her operation and within three days she was feeling much better. After the same surgery, Karin explained that she had tummy ache and felt tender for a week and then she felt back to normal.
 

Hayley’s surgery to remove her ovaries and her recovery afterwards had been very straight forward.

Hayley’s surgery to remove her ovaries and her recovery afterwards had been very straight forward.

Age at interview: 39
Sex: Female
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And that was the deal and the deal was, “Okay you go home, and these are your options, you have your ovaries removed, you don’t, you have all your tests”, and what was brilliant, like she gave me tests straight away just to make sure that because you are kind of convinced, as soon as you know about it, you are going to have cancer, because that was like this cloud over my head, but you know, though obviously it’s not ideal, I can say it with hand on heart, I will not have ovarian cancer because I haven’t any ovaries [laughs] so that’s the deal. So at least I feel it’s like a nought point something per cent change where you can have cancer of the lung, of the womb, well I’m on par with every other woman on that one, that doesn’t make me more, you know, so you think, you know, I don’t know. It was crap. I can’t tell you how you feel, it is a horrible time.
 
I felt it was like a clocking ticking I was getting in before the ovaries got me kind of thing. And it was a very simple operation. I have never been, I have had kids, but I’ve never been in an operating theatre, and it was a long drawn out day and, but you are knocked out. It’s marvellous. And that’s it. And the recovery rate within three… I was out the next day. And within three days I was fine, not even three days. I managed as best I could, and that was it.
 
One of the major side effects of an oophorectomy is that it is accompanied by a premature menopause. Menopausal symptoms such as hot flushes, night sweats and mood swings can be managed through Hormone-replacement therapy (HRT). Hayley and Karin both took Tibolone [also known as Livial], a form of HRT, and they were pleased that they suffered few symptoms.
 

Karin still has regular check-ups and sees various doctors.

Karin still has regular check-ups and sees various doctors.

Age at interview: 39
Sex: Female
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I’ve got a breast appointment, my first one in a few years. They don’t feel it’s necessary, but they do like you to see your various doctors. So I’m seeing him. But then I have seen my plastics guys pretty much every year. So I suppose they know what they are feeling, and if there is anything to be concerned about. But no, I don’t have mammograms or ultrasounds. I do still have my CA125 monitored whenever we go to [hospital name], which is annually. I suppose genetics have to check to let us know what’s happening if there’s anything if we have further questions on. 

Last reviewed September 2015.
Last updated June 2013.
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