Caroline - Interview 27

Age at interview: 36

Brief Outline: Caroline, a BRCA 2 mutation carrier, has had a double mastectomy. In the future she will consider whether or not to have her ovaries removed.

Background: Caroline is married and has 3 children. Ethnic background/nationality' White British (Jewish)

More about me...

Caroline was encouraged to go for screening for the BRCA 2 mutation by an aunt who had ovarian cancer and was a carrier. She eventually went to her GP who sent her away without referral. When her father died of cancer, the family found out that he was also a carrier. Caroline then went for testing with her sister and they were both relieved to find out they were both carriers, rather than just one of them. Caroline describes how the significance of being a carrier didn’t really sink in at the time because ‘it was a lot of numbers reeled off’ and the testing occurred at the same time her youngest child was being treated for congenital heart disease.

 

When she turned 35, Caroline’s mum persuaded her to go for breast and ovarian screening and it was then that she started to read about the implications of being a carrier. She describes how isolating the experience was, at first, and how scary it was to have something at the core of her that would always be there. A series of screening procedures included a mammogram, MRI, yearly trans-vaginal ultrasound and quarterly blood tests for CA125. When the MRI showed shadows on both breasts, Caroline decided to have a double mastectomy rather than live with uncertainty. The surgery, a prophylactic bilateral mastectomy, was delayed a couple of times which Caroline found very stressful but the surgery and reconstruction went well. Her new breasts “do the job and look natural” and her risk of breast cancer has been reduced from 85% to 2%. Caroline will think about whether or not to have her ovaries removed in her 40’s.

 

Caroline describes the two issues that she finds difficult. The main one is whether or not she has passed on the mutation to her daughter and two sons and when to talk to them about possible screening. The other is feeling very guilty in hospital because she was alongside cancer patients who she felt were more deserving of the time and resources. Her advice to other people who discover they are carrying the gene to talk to other carriers. She recommends the BRCA Umbrella website - http'//brcaumbrella.ning.com/ - as a very good resource to enable carriers (or fellow mutants as she describes them!) to talk to each other.  

Even though she never experienced cancer and has had preventive surgery, Caroline feels the BRCA2...

You said that having BRCA 2 is at the core of you, can you explain what you mean by that?

 

If you have, it’s definitely like if you have cancer I feel, and this is what I’m taking from other people, because obviously I haven’t had cancer. Often it’s something you can get rid of. Not always, but you know, you could have your breast removed, you can have surgery or you can have chemotherapy or radiotherapy and it will go, or maybe you’ll go into remission and it’s gone. But I feel like with having a BRCA mutation that is part of you, that is something that can’t be removed, that’s something that will be with you forever, and it’s the core of you, it’s something that will never go. So, I feel that’s in a way more frightening because you just don’t know what it’s going to do. You don’t how it’s going to behave or, it’s like an un-quantified part of you. So, I find that quite frightening.

 

Do you, or any of the people you are in contact with, not reframe it in terms of because of developments in technology you’ve now got advance warning perhaps?

 

Yes, I feel incredibly lucky that I know I’ve got it because when I first found out, and the genetic consultant said to me, “You’re one of the lucky ones, because you know what your future could hold. You know what your mutation is.” He said, “Everybody has a genetic mutation, but you know what yours is, so you’re lucky.”

 

So I feel incredibly lucky I know what it is, but it’s just frightening knowing what it is. I’m happy, you know, I’d rather know that this is what I’ve got, and this is what the future could hold, then I could have a mastectomy or have my ovaries removed so I can get rid of that, the possibility of suffering breast or ovarian cancer. Whereas there are people who have absolutely no idea what their future holds, and they’re powerless to do anything about it.

So I did feel that knowledge is power. So although it’s frightening, I’m very glad that I know. 

Caroline feels confident about her new breasts and is quite happy to show them to other women who...

How do you feel about your new breasts?

 

Not bad, [laughs] I quite like them, they do the job, they look natural. I mean they don’t feel natural at all. I can’t squeeze through small spaces like I used to. You know, they, they poke back, but other than that they don’t bother me in the slightest. They obviously don’t look anything like your normal breasts because they have no nipples and a scar across them. But it really doesn’t bother me, I’ve got used to them, they are part of me now, so. As I said before my, my breasts never defined me as a person, I feel actually more confident with them, for some strange reason. 

 

Why do you think that is?

 

I know this is really odd, I think it was a nipple thing. Now there are no nipples I don’t feel quite as, as I don’t know. I don’t know what it was. I don’t know. I just feel quite confident and less shy. Not that I ran round showing them to everyone before [laughs] but now, if anyone wants to see them, I’m quite happy to show because I just think there could be one person, you know, such a large circle of friends, there’s probably going to be one of your friends whose going to have breast cancer unfortunately. And if I can make their, their journey less stressful or less painful and show them, that actually you’re going to look like some kind of horrible freak or you know, scars are not horrendous or you know, you don’t have to be embarrassed to go swimming or any of these things. I can do that, then I will.

 

Caroline finds the whole issue of when and how much to tell children about possibly carrying the...

When you talk about it, you are talking about mutations, do you feel very different in and of yourself knowing you are carrying this gene?

 

I do feel I’m not the same person I was before I)knew. I don’t know what makes me feel different, but I just feel, I just don’t feel, not carefree. I feel like it dominates my life, even quietly in the background it is always there, even if I don’t talk about it or think about it or I don’t think I am thinking about it, it’s there. And, I do feel different than I did before I knew. Probably because I have the worry of will my children have this? How do I tell them? When do I tell them? What do I tell them?

 

You know, they’ve seen me go through a mastectomy and they’ve asked me' why did I go to hospital and what it was for. But with a 6 year old, a four year old and a two year old, you can only say so much. You don’t really, you can’t go into any great detail because they’ve seen one grandparent die of cancer, so I don’t want to mention the word cancer, because they think that’s what makes you die. So it’s quite, you know, it’s always there, so I do feel quite different.

 

You mentioned about worrying about your children in the future, about passing the gene on to them. Have you been given any advice about how you can deal with that?

 

Nothing. Nothing whatsoever. I had a 50/50 chance of getting it. I was told if I married, which I have, a non Jewish person that meant they had a lower chance, because obviously if I married another Ashkenazi Jew then they may also be a carrier. So, that made me feel a little better. I’ve been given no information whatsoever. I know they can be tested at 18. I was discussing it last night with my husband, because having been on my conference call with these other ladies, they were all saying how guilty they felt, we were all saying how guilty we felt that we may have passed it on. And that they can only be tested at 18 which is a very difficult age to tell them. I mean if they’re doing A Levels or whatever, and then you say to them on top of that, “Oh by the way, you could have this horrible genetic mutation. Let’s go and get a blood test.” You know, it’s a very difficult time for them.  

Caroline was not impressed by the psychologist she saw before her surgery.

I didn’t have any genetic counselling as such which I know some people do get. I went to see a psychologist before my surgery which looking back on it I don’t think it was particularly useful at all, because for a start it was a man which I hadn’t really, it didn’t bother me, until I mentioned it to someone yesterday who said, that they thought that was quite weird that they sent me to see a man about breast surgery, because I don’t, I don’t think a man could relate to it in the same way as a woman. But it hadn’t really bothered me at the time.

 

But he just asked me questions that again now I think back at them, I think, what a silly question to ask me. He said to me, “When you’ve had your mastectomy and you get changed in the communal dressing room, how do you think you’re going to feel? Would it bother you?” I said, “Well I have absolutely no idea if it’s going to bother me, because I haven’t had it yet. And if it doesn’t bother me that’s very good, and if it does I’ll come back and see you.” But I just thought what totally useless questions. And I knew more than he did about what I was going through. And he just said, “Well it’s seems like you’ve done a lot of research, so I think you’re fine for surgery. I think he was just trying to see if I was some kind of nutcase that just liked surgery. Yes. So... 

 

Caroline developed a "morbid curiosity" about the risk attached to carrying a BRCA mutation.

When you found out and you started doing all the reading about this, and you said you got quite obsessed with it..Was it the figures that worried you or what was it that particularly worried you?

 

Definitely the figures. If someone says to you, you know, you’ve got a 15% chance of not getting something, you know, you think well I could get this and because then looking back into my family history, having found out who’d had it, and it was like six women, grandparents, and aunts. I thought this is, you know, this is frightening. 85%. It’s frightening. And also just reading up, its not only breast cancer, ovarian cancer, there’s other cancers. You just read through this list and it terrifies you. And then you just read more and more and it becomes like a morbid curiosity, and what have peopled suffered with and what have they done? What’s gone wrong? And you know, you read up on absolutely everything, and your head starts swimming, and you do get horribly obsessed with it, and then I wanted to meet other people that had it because as I say, you can make all the right noises if you haven’t got it, but I think unless you’ve been through it, you don’t really understand what’s worrying somebody. So that’s what I found BRCA Umbrella and I met other people who have the mutation. And it was just so nice to talk to people who felt exactly the same way and had, I suppose, irrational fears some of them, but absolutely understood what I was thinking. They have the same issues regarding your children and what if you passed it on to your children, and all of these things. 

Caroline thinks that carrying the BRCA gene is less scary when you talk to people.

I just want people to know there are plenty of us out here, and the best thing for me has been talking to other people who are carriers. It can be the most isolating thing in the world to think you have this mutation and you don’t know anybody else. Just try and find other people. Look online, go to support groups if you can find any, but talk to other people, because it is really, really frightening and I’ve seen a lot of people who look like they’re falling to pieces because their partners don’t understand what’s going on inside their head. So just make sure you talk to people and talk about it because it’s not nearly as scary as you think when you talk to someone else.

 

Caroline admits that she was difficult to live with when she first found out about having the...

You’ve said you’ve been quite obsessed and reading lots about it, since you found out you are a carrier. Has that had an impact on your relationship?

 

Yes. I think when I first found out I got very, sort of obsessed with it and then I was thinking about my surgery and my surgery got cancelled. I was very stressed and apparently I wasn’t a pleasant individual to live with according to my husband. I didn’t actually notice. I thought I was dealing with it quite well but apparently I was quite moody and grumpy and…. I think I was just so lost in the world of BRCA, I couldn’t relate to anything else. You get totally obsessed with it. You’re so involved in it, nothing else seems to particularly matter. You know, that’s the thing in the forefront of your mind and it’s just always there. So, I think he did suffer. I think I was quite grumpy with my mum and my sister, because I was just so stressed and then being cancelled twice, it just really messes with your head because you’ve got into that mind set that, you know, you are saying goodbye to part of your body, a healthy part of your body, and then it doesn’t happen and you have to go through it all over again. And I think I didn’t know if I could do that again. So, yes, I think it had an impact on my family relationships and the fact that …

 

Did you discuss your options for treatment with your partner, mum or sister?

 

Yes, more with my partner because he was going to go through it with me. And he needed to take the time off work and look after the children. I didn’t particularly want to talk about it so much with my sister, because I felt guilty, because she is younger than me, has no children, and has no partner, I didn’t feel it was fair for me to make her feel like did she have to do this, was it something she’d have to go through. I just felt like, I didn’t want to upset her so I tried not to talk to her about it, which I think upset her more, the fact that I didn’t include her. And then with my mum I tried to talk to her about it, but I could see that it upset her because you know, obviously seeing her daughter go through something like that, she… I could see she was upset. And I could see maybe she was thinking, is this really necessary? Is this something you have to do? But I think eventually when I got her to read more of the information she realised it was a sensible option. I do think it really did upset her quite a bit, so I tried not to talk to much to her about it.

 

Caroline would like doctors to try to understand what it is like being in a cancer ward for...

I think health professionals need to encourage patients to meet other people, they need to know more about where they can find support groups because you go along to your GP and they sort of talk to you and get excited about your mutation and it makes you feel there is something seriously wrong with you. And they need to say, there are support groups for this. There are places you can go to talk to other people. I think that is the most important thing, that they put people in contact with other people and just explaining things clearly. Not just throwing a bunch of numbers at people saying you’ve got a chance of this, this, this, this, this because that’s terrifying. I think more counselling and an approach that’s the same all around the country because I come across people who have a totally different experience to me. So it would be nice if all the PCT’s did the same thing because otherwise some people are having a really good experience and other people are having a really horrible experience. And also just to be aware that when people go into surgery for risk reducing surgeries, people are going to feel very like frauds going into cancer wards. And just be aware of that, not necessarily do anything. Because we feel that we are taking up precious resources or time when we’re not ill.

 

I mean you look at people on the ward who have lost their hair or who are really, really ill and you think ‘I’m fine, there is nothing wrong with me and I’m being treated as well as they are. I’m getting the same level of care and there is nothing wrong with me’. And you feel horribly guilty that they may not make it and you are being given this amazing chance and the nurses are coming round and being lovely to you and the doctors are being nice and you think ‘I don’t deserve this, there’s nothing wrong with me’. And you feel like shouting ‘There’s nothing wrong with me, don’t be nice to me. I feel bad because the woman in the next bed is really ill’ and I just feel awful.

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

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.

 

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

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.

 

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

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.

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

 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.

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

 

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. 

Caroline was tested for the BRCA mutation after her father died and the family found out he was a...

How did you find out?

 

I found out because my auntie had ovarian cancer. She had it later on in life. I think she was diagnosed in her sixties, was tested for the mutation, because many members of her family had had breast cancer and she was Jewish, they did genetic testing. And when she found out she had it, her daughter was then tested, and then she begged my sister and I to go and get tested, knowing that it was in the family.

 

And for a long time I ignored it. I thought what’s the point in this? I don’t know what this means, and didn’t do anything about. And she kept on and on about it. So eventually I went to my GP with a letter from her hospital saying that she was a BRCA II carrier. Showed it to my GP and he asked me who in my family had suffered with breast or ovarian cancer. And at that point she was the only person I knew of who had ovarian cancer. I didn’t know about any of the other members of my family. And he looked at the letter, and said, “I’ve just been on a course about this, I don’t think you have the mutation. Off you go.” And that was it. So I didn’t think any more of it.

 

Then in June 2007 my father passed away, and not long after that my mum got a call from a genetic consultant asking to speak to him. And she told him that my father had passed away, and he said, “Oh he’d been for genetic testing and he was, a carrier of a BRCA II mutation.” We didn’t know that he’d been for testing, because he was quite secretive about these things. And when my mum said, “You know, I’ve got two daughters. Should they come for testing?” He said, “Absolutely.” And that’s when my sister and I went to be tested.

 

And what were the steps you took when you decided to go for testing; can you describe what you did?

 

The consultant then made an appointment for me and my sister to have testing which, it was a bit of stressful time anyway, because my son was born in August of that year, and in the October he was found to have congenital heart disease. And was taken to [hospital] for open heart surgery, and it was while he was in intensive care that we were tested at [hospital] by the genetic consultant. So …

 

So that must have been quite a time then?

 

It was very stressful, yes. I think my mind was sort of more on [son] being ill, rather than being tested, so I sort of took it in my stride. We didn’t, my sister and I weren’t overly stressed about it. We went and we had a blood test. The consultant said to us, “If you’re BRCA II it means you’ve got this percentage of getting this cancer, that cancer, the other cancer”, and it was a lot of numbers reeled off at us. I think we didn’t take any of it in, because we were more worried about what was going on upstairs. And it was just pie in the sky if we’d got this, if we’d got that. So we didn’t really take it in, and I don’t think we were that stressed at the time.

 

Was that, was he quite serious when he said, do you want to see these results?

 

Yes. He said, you know, we didn’t have to see them, if we didn’t want to.”

 

Did you and your sister discuss whether you’d want to know the results?

 

No. We both, I don’t think we discussed it much in between. There was so much going on and it was just, you have a blood test and you get your results. We didn’t sort of think of it any other way. 

Caroline says that the "sensible part of her brain" tells her she shouldn't feel guilty about...

You mentioned about worrying about your children in the future, about passing the gene on to them. Have you been given any advice about how you can deal with that?

 

Nothing. Nothing whatsoever. I had a 50/50 chance of getting it. I was told if I married, which I have, a non Jewish person that meant they had a lower chance, because obviously if I married another Ashkenazi Jew then they may also be a carrier. So that made me feel a little better. I’ve been given no information whatsoever. I know they can be tested at 18. I was discussing it last night with my husband, because having been on my conference call with these other ladies, they were all saying how guilty they felt, we were all saying how guilty we felt that we may have passed it on. And that they can only be tested at 18 which is a very difficult age to tell them. I mean if they’re doing A Levels or whatever, and then you say to them on top of that, “Oh by the way, you could have this horrible genetic mutation. Let’s go and get a blood test.” You know, it’s a very difficult time for them.

 

When you sort of say that you and these other people talk about the guilt you feel about passing this gene on, can you not see it as an ongoing... that obviously it was passed on to you. It’s not your responsibility necessarily?

 

No. I sort of do and then I don’t. That’s how I felt before, I thought, you know, this is me and we all pass something on to our children but when I heard all these other people saying about this guilt, it did dawn on me, I did feel, you know, bad that I’d done it. But what could I do? You know, it’s not something, had I known about it before I had children, you can have your embryo screened, and I know somebody… it was on the news not so very long ago, a couple did that. But then I think would it change my mind? If I knew I had it before I had children would I still have children? Yes, I’d still have children. And, you know, as you say it’s not my responsibility. It was passed on to me. And it was passed on to my dad, and so in a way, I sort of, the sensible part of my brain, thinks I shouldn’t feel guilty, because what can I do? I can’t help passing it on. But then the other part of my brain thinks, well what if my children turn round and go, you know, you did this to me, you gave me this, and you know, as teenagers do, I hate you. And I’ve got to go through this, that and the other. So I sort of look at it in two ways, it depends how I’m thinking on a particular day. 

Caroline took part in a telephone support group run by Breast Cancer Care. She also found their...

I found out most of the information myself, and there isn’t that much there. You can go on the Macmillan’s website or Breast Cancer Care or whatever, and there’s a bit of information, but its, its generally aimed at people who’ve had breast cancer and so on. There isn’t that much, so …

 

Are there any websites you would recommend to people?

 

Definitely the BRCA Umbrella which is brilliant. The charity Breast Cancer Care have been running a telephone support group for people with a family history of cancer, which I’ve been participating in which is a six week group on the phone with six women, and we just chat about how we feel. What’s worrying us. So they’ve done that. I’ve had some good booklets from, they’ve got a good booklet on breast reconstruction. Macmillan have got one now on breast reconstruction and hereditary breast cancer. So I think other charities are realising that it is a growing problem and that they need to do more for it.