Karin - Interview 28

Age at interview: 39

Brief Outline:

Karin found out she was a BRCA1 mutation carrier four years ago. She has had a double mastectomy and her ovaries removed.

Background:

Karin works as a director/administrator. She is married and has one child. Ethnic background/nationality: Jewish

More about me...

Karin found out four years ago, that her mother’s side of the family were BRCA carriers. Some members of her family had withheld this information which has caused a family rift. Karin went through the screening process which she describes as “amazing”; the information, the support and the lack of pressure as to what to do. She found out she was carrying the mutation and her risk of getting breast cancer was around 90%. Karin, with the support of her husband, chose to have a double mastectomy “within about 20 seconds” of getting her results. She opted for a bilateral deep which involves using tissues from the stomach to reconstruct the breasts. This was major surgery which involved several weeks of recovery, but Karin and her husband preferred this option to having implants. The decision to have her ovaries removed was more difficult but both Karin and her husband decided that they would not have any more children and the surgery was done as soon as possible. 

 

Karin feels that the experience has been very positive. She has been proactive, very well supported and informed by health professionals and now has “new boobs and a tummy tuck”. She is very concerned about whether or not she has passed on the mutation to her daughter who is now 8 years old. Her daughter will enter a screening process when she turns 18. Karin feels it is very important to talk about these experiences with other people and to realise that you are not alone.  

Karin was very impressed by the screening process to find out if she carried the BRCA mutation.

And at the time my mother was convinced that because my sister had breast cancer, that I, there’s no way I’d have the BRCA gene. And we went to [town] and we went through the whole screening process, which I have to say was amazing, because the support, the information, the encouragement and the lack of pressure. It’s your decision, even up until the point that they give you results, it’s, “Do you want your results or don’t you?” Because I mean, people have a change of heart. I didn’t. I always wanted to know.  

Even though she has had her breasts and ovaries removed Karin still takes reassurance from regular check-ups.

I will always feel like it’s there. I suppose that’s why I still see the breast guys, and I’m sure at some point they’ll send me for a mammogram, and ultrasound, or an ultrasound just to keep me quiet, and get me out of there [laughs]. Just because, I just like to know there isn’t anything. 

 

They’ve removed…

 

They’ve removed my breasts, but they can’t guarantee removing every single cell. 

 

Right.

 

And they just have to leave one rogue cell. So, there is always, it’s not a 100% certainty. So there’s always a very, very slim chance. So do I feel it’s hanging over me? No. But I am aware of it. It doesn’t cloud my every day life. I suppose I think about it every so often, oh I know I’ve got a hospital appointment coming up. And it will all come with that as a package if that makes sense.

 

But no, it doesn’t. it doesn’t cloud my decision at all. But I’ve got friend, I’ve got a very, very good girlfriend, who… was diagnosed with breast cancer, and the BRCA gene, and did nothing about it. Literally went through chemo and said if she gets it again she’ll have mastectomy. Whereas for me, I found it very, very difficult to deal with that because it’s totally opposite of what I dealt with the problem, like I never had cancer, but there was no way she would entertain having a mastectomy. Even though she’d had it, and her risk was quite high. 

 

Everyone’s different, it’s not something you can say is right for everyone. Some people want to do it, and are focused, some people need to know the positive side of it, as well as how hard it is to go through. But at the end of the day, you’ve got to do, what you’ve got to do, for yourself. Or for your family?

 

Karin's husband influenced her decision to have breast reconstruction using tissue from her stomach rather than implants.

I mean they get forgotten, the husbands, partners because they’re very focused around you, but they do so much. And my friends. It was, it’s amazing to see, some people are amazing… some people surprise you in a bad way. People you expected would be there are not, and people you never dreamed would be there are there. There was someone turning up with dinner or whatever. It’s amazing. But I was very, very dependent on [partner’s name] for, certainly for the first month, six weeks. And then a friend of mine took [daughter’s name] away for a week, when I came out of hospital. 

 

And so how much of an impact, it sounds like you and your husband are really close?

 

Hm.

 

Has it had much of an impact on your relationship?

 

No, not really. No, it hasn’t, we’ve always been very close, and we discuss everything. I suppose the decision to have it, to have the tissue, the DIEP which is the tissue from my stomach was a joint decision. He has a thing about implants which is fine. I suppose it’s a decision that we needed to make together. I wasn’t… I didn’t have strong… I didn’t have strong feelings at the time, as to which to go for. But once you sit there and talk about it. He’s an engineer, so… those sort of things matter to him. And I’m please I did the one I did because I don’t have to think about it. It would have been far easier and far less painful just to have implants. But, my boobs are my tummy [laughs]. And as [friend’s name] and I sometimes go out for dinner. We rub our boobs and say, “Ooh I think I’m full now,” [laughs].

 

Members of Karin's family kept quiet about carrying the BRCA1 gene and this caused a rift within the family.

Why do you think your family, members of your family kept, just kept quiet about carrying the gene?

 

I don’t know. Because... I don’t know. Because maybe they thought, if they kept quiet it wouldn’t happen. It hurt a lot of people. It could have been a... my sister may... hindsight’s a wonderful thing. My sister may have gone on a screening process, and she may have not had it. But then they may have caught the cancer earlier. They may not. It’s not, it’s like you have a scan every so often and the tumour grows, you could just miss it anyway. So, one doesn’t know. But I mean we don’t talk to the cousins that withheld the information, no longer talk to them. Round about the same time, another cousin, who was 27 was diagnosed with breast cancer as well.

 

Karin doesn't think there is a better place to be treated than her specialist hospital. The downside is that her appointment is often changed.

So do you feel you're being well looked after by the health professionals?

 

Actually without question. There is, in my opinion there isn’t a better place to be because they specialise. I mean the downside to being in a hospital like the [hospital name] is, and I now have a standing joke, with my plastic surgeon’s secretary which is whatever date she gives me, can she give me another one at the same time because I never, ever make my first surgery.

 

My big surgery, that was very, very, very traumatic because I like to have everything organised in my life. I like to know where everything is, and with [daughter’s name] I had everything scheduled, spread sheeted, everything, went into hospital, and literally I was just about to go down to theatre and everyone was in theatre, and my plastic surgeon came into me and he said, “I’ve got something to tell you.” And he wasn’t changed or anything. He said, “We have to change your surgery. I have to cancel your surgery.”

 

He had drawn... I mean I was covered in black marker. I’d psyched myself up. I was, at this point, a total wreck, because I’m going in for anything between 10 and 15 hours of surgery. And he says, “We’ll have to cancel,” which was devastating. But the reason I had, they had to cancel it, was because they had another patient who needed the intensive care bed. Which however devastating it was for me, someone else was in a more devastating position. So he said to me, “Is there anything he can do to make it better?” So I said, “Just let me walk out of here with another date,” which he did. And we had it then.

 

And anything else I’ve had since then has always been the second date. My surgery next week, should have been last June, but I opted to cancel last year because I had too much on. And it was, it’s purely cosmetic, it wasn’t medical. So I didn’t, I thought if I put it off it’s not the end of the world. So …

 

Yes.

 

So we’re now on part two [laughs] the nipples. But, as annoying as it is, it’s inconvenient. It’s not life threatening. It’s annoying. But because you’re in a cancer specialist hospital, you always run that risk. So … 

 

Karin couldn't live with the uncertainty and stress every time she had an MRI or mammogram so she decided to have a double mastectomy and her ovaries removed.

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. 

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

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. 

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

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. 

Karin's biggest fear is passing on the mutation to her daughter.

Was it explained to you at the time, that it was a gene that was carried by Ashkenazi Jews?

 

Yes. Yes.

 

And what did you think about that?

 

I was unlucky. Ah. I suppose you’ve got to look at everyone’s got their characteristics, their heritage and what it brings, green eyes, blond hair, BRCA genes. You, ah my sister spent a long time blaming my mother, because she got breast cancer, and it was my mother’s fault because she had the BRCA gene. I just got on with it. I knew what I wanted to do. And I did it. 

 

Did your mother feel guilty at all?

 

Terrible. She would... she felt very guilty. She felt guilty about me. And I think any mother would. I mean that’s my biggest fear with [daughter’s name]. You know, what if I’ve given her that? Because just after my big surgery, NICE got the consent for embryo screening for BRCA, and I did a whole TV interview for BBC on my opinions about that. And I just felt at the time, oh my God, she’s four years too late, because I would have done it. Had I known, things might have been very different, but you don’t, and you’ve just got to move on, but if I had my time again I would have been screened. 

 

 

Finding out she carried the BRCA gene enabled Karin to be proactive and she had a double mastectomy and her ovaries removed.

It was a bit of a limbo because you try and convince yourself you haven’t got the gene, but then equally you need to start preparing yourself if you have. So it’s, it’s very difficult to deal with trying to be positive and say no, no, no, you don’t have it. But actually being realistic and how you’re going to deal with it if you do which is why, when it came to making my decision to have a double mastectomy, I’d spent a long time, and we’d spent a long time talking about it, and what we would do, and how we would handle it. 

 

I mean for me it has been an incredibly positive experience. To be given an opportunity to be proactive, because it eliminates, I don’t know, eighty, more than eighty five per cent of my risk factor, which is huge, when you have a ninety something per cent risk.