Hayley - Interview 3

Age at interview: 39

Brief Outline:

Hayley discovered she carried a mutation on the BRCA1 gene after her cousin was diagnosed with ovarian cancer. She has had her ovaries removed and is considering a double mastectomy. Hayley feels it's important to read about the BRCA1 gene and cancer to maintain control.

Background:

Hayley a teacher, is married and has three children. Ethnic background/nationality: Jewish

More about me...

Hayley was tested for a mutation on the BRCA1 gene after her cousin, who had ovarian cancer, opened up her medical records and Hayley received a letter suggesting she was tested. In April 2008 she found out she had the mutation which was passed down by her father. Hayley describes this as a bombshell and despite being screened for ovarian and breast cancer, felt the ‘sword of Damocles’ hanging over her. She was given the statistical chances of developing cancer, which varied over time, and decided to have her ovaries removed. The keyhole surgery went well and, as Hayley and her husband had completed their family with their two sons, she did not feel this was a big issue. The Tiberlone hormone replacement therapy she takes on a daily basis has not produced any side effects.

 

The next decision for Hayley is whether to have a double mastectomy and this is a big decision for her. She wants to get as much information as she can about reconstruction, the extent of scarring, the level of pain and so on before making this decision.

 

Hayley describes her husband as “an absolute star” and he brings her back down to earth if she becomes melodramatic about the possibility she might develop cancer. She has read a lot of information about cancer and the BRCA1 gene and describes how important it is to be knowledgeable and have some sort of control over the experience. Hayley has a yearly counselling session, a yearly mammogram and MRI scan and describes the treatment she has received on the NHS as brilliant.

 

Hayley’s family are Ashkenazi Jews and while her parents follow some Jewish observances, Hayley describes herself as “not religious in the slightest”. She feels that being Jewish is a strong part of her identity (though one she is not necessarily proud of at the moment). Her sons are aware of their Jewish background and she likes some aspects of Jewish culture such as the humour. 

Hayley inherited a copy of the faulty BRCA1 gene from her father and had her ovaries removed as a precaution. She worries about her sons and their future families but hopes that screening and treatment will improve in the future.

So that’s where I’m at. Ovaries removed. And unfortunately I had my operation and then a week later [cousin] died in August. But I’ll always… I mean I wrote to her loads. And I’ll always be grateful because if she hadn’t opened up her records, I would never have known. And if I was the older out of all of us, it could have been and probably would have been, possibly one in 68, or whatever it was chance it would have been me. So it’s just … it’s just, it’s just something you’ve just got to deal with. But I would rather know about it, then not know about it.

 

And having two boys is a relief rather than having two girls I can’t deny. I know they’ve got a chance of a slightly higher risk of prostate cancer and a slightly higher risk of breast cancer which is very rare in men anyway. And I just think, well by the time they’re older, there may be a cure, and certainly screening processes would be even more refined. And now on the news you hear about …

 

Then I would always worry about my potential grandchildren who may be girls. Although my boys and five and seven, you know, it’s just like… but with the… I mean on the news only last week with the embryo being screened, I reckon it will be second nature in 2030, you know, who knows? So I’m (?not) too worried any more. Something I have got to deal with. That’s my story, it’s not, you know…

 

And so I was in bits, [husband] asked all the logical questions and said, “Well you have a chance, yes, you have a strong chance, but you know, it’s not going to happen.” So he said, “We’ll have the blood test.” And of course there is the two months waiting for the results of the blood test, and what, they are very good. They take two lots of blood to be sure, to be sure. You know, it wasn’t like, “We’ve made a mistake.” They took two and my match was absolutely… because they had [cousin] on file, and they had mine, it was a complete match. Whatever her flaws, mine was the same flaw. So there was no, it was a no go brainer. I had it.

 

And I remember when she told me, I looked at [husband] face, it fell and then it rose. And he’s a strength. He is a mega star. He’s an absolute star, he’s brilliant.

And that was it. He didn’t say, he’d have to deal with it. Of course it was all tears [bit teary].

 

Do you want to stop for a moment.

 

But he’s so… I came prepared. And it was seeing his face, because he almost cried, and then he just, I was just watching him, because it was like this ear to brain, you know, you got the… and it was like the register, and I was watching him register. Because I don’t know at the back of my mind, I just thought, because there’s a 50/50 chance of me having this gene, because my dad was the carrier which we didn’t know at the time. Basically we knew obviously [uncle], basically my dad and [uncle], they were two brothers, that’s it, there was no girls in their family, and it was obvious that [uncle] was the carrier and so it was a 50/50 chance that dad was a carrier, and I just thought, you know, it’s sod’s law, he is going to be a carrier, and I take after dad. Even though I asked the question, because I look like my dad does it mean, I just knew that I would have it, I don’t know, because there’s a 50/50 chance. But [husband] was convinced I didn’t have it. And my sister was convinced, you know, she said, “We’re lucky people, we don’t have this stuff.” And anyway his face just crumbled. I’ll always that have picture. And then it was like, he was like of like, “I think we’ve got to deal with it.”

Well, you see, both my parents are Jewish, they are all, they’re both, both my grandparents from all sides, all four of the grandparents came from Eastern Europe, Russia, Belarus. It’s all moved the borders of that, all from there. And, from what I understand, this gene comes, we’re not a hundred per cent sure. My paternal grandmother, she definitely had breast cancer, but my paternal grandfather, his sisters had cancer as well so where the cancer comes from, whether it’s the grandmother’s side or grandfather’s side or both. It might have been a double whammy and it was no wonder both my uncle and my dad had the BRACA 1 gene. We just don’t know.

Dad’s never been tested, but it’s, obviously dad doesn’t need to be. So they’re all, you know, Ashkenazi Jews, and since knowing about the BRACA of course I have read up on it. And wandering round the, if you can believe it, wandering round the desert for forty years, well the inbreeding doing anyone any favours, because there’s so many… I mean the doctor who examined me, he said it’s normally one of the standard answers, is Ashkenazi Jewish, was the disease Ashkenazi Jewish? They have they Carrion’s, Crohn’s all sorts of stuff, it’s such a flawed.... I am lucky, I have to say my husband’s not Jewish, and we used to say, and my Father-in-law, used to say it’s hybrid vigour, because now, we have nev… there’s no way that our roots would have, you know, in the past, because if you go back far enough, I’m sure you must be related to every … and, it’s, but because I’ve brought this flawed gene into the equation it’s not such a hybrid any more. But there you go. Yes. It’s definitely Ashkenazi Jewish, and now I know there’s a lot of flaws on those genes, so there might other stuff I don’t even know about.

Hayley's mother was shocked by her decision to have her ovaries removed after she tested positive for a mutation on the BRCA1 gene.

And what did your mum think?

 

Well you see I told... Dad knew I was being tested. I played the whole thing down, hoping... because he was going through cancer himself, which was completely... it was just like, he has got cancer of the bladder which is clear now, and that was just like an old man’s cancer, you know, it’s not anything to do with this BRCA thing, it’s just unlucky, you know, but I did think it happened for a reason, without that [cousin] probably wouldn’t have opened up her file so, you know, Dad... it was good thing, you know, in a funny old way.

 

Well Mum knew nothing and I was... at all, she didn’t know, because we’re not, as I say we are dysfunctional family. She knew [cousin] had cancer, but that was about it. She didn’t know what it was cancer, she wasn’t that interested, and, so, I remember I got the results on the Tuesday and I thought well I have got to tell Mum and Dad. And I was calm, I was very calm about it, I wasn’t even tearful. I was, thought ‘ugh’, you know, I could probably do with a couple of gins. 

 

When I was on the phone, I said, “Right what I’m tell you, I don’t want you to interrupt. I just want you to understand” and of course Mum was in this complete... I don’t know. I told them, I said, “Have you got any questions?” And they said, Mum said, “Well you’re alright aren’t you?” I said, “Yes. But the likelihood is I’m going to have an operation and have my ovaries removed.” “No, don’t have that. Have a second opinion.” I said, “They took two lots of blood, they… I’m not having a second opinion. This is the deal.” 

 

But luckily my mum’s brother is gynaecologist, and she was on the phone before, you know, and he said, “You know it’s a common thing. Women have ovaries removed all the time for various reasons. It’s a procedure which is, a... you know, a very straightforward procedure” and made her feel better and calmed her down. 

 

And I told Mum and Dad and Mum was like, “Are you definitely sure you are going to have it. It’s a very drastic op.?” And I said, “Yes, I don't have a choice.” 

 

NHS treatment might include waiting around for appointments and having to travel to get tests done but the care Hayley received was brilliant.

And I was on the list, you know, it takes time, you are on that conveyor and then I was on a new conveyor belt, which was the ovary removal conveyor belt. So I am on that conveyor belt where once a year I have my counsellor. I am on the conveyor belt of once a year I have my mammogram and MRI. Then I am on the ovary conveyor belt. So I was on the ovary conveyor belt, because its blood and make sure you are healthy, and pre op and all that kind of stuff, and filling in forms and all that.

 

And, so I was on that and I was waiting. I was told don’t go to the [hospital] because their wait list is too long. And then when I was on the [hospital] ovarian removal department, who also had this genetic cancer department. And, you know, you can’t fault them. Whatever people say about the NHS, they are amazing. I mean absolutely supportive, and the nurses, everybody is just so caring. There is no one situation where I thought oh… they’ve been absolutely brilliant.

 

So you are saying the NHS was really good?

 

Yes.

 

Did they give you enough information do you think?

 

Absolutely. I don’t know if everyone did, but you have a counsellor who is at the end of a phone and you can phone them. The only time there was, not a blip, but an issue, was [hospital] run out of money to do the MRI. And, so it was a wait, it was a wait, it was a wait. And I said, “Well what can I do?” And she said, “Well go through your GP.” So, which was fine. So I went to my GP. She was amazing. And I got my MRI through, a local hospital, the [Hospital] and now to be honest with you, it saves me going up to London, now I have my mammogram and MRI through [hospital] and not the [hospital] which saves me a real trek to London, which is ideal. 

Hayley thinks that knowledge is power.

Do you have a message for anyone who might be thinking about being tested or is just about to be tested? Is there anything you would say to people?

 

I would say, absolutely do it, sort of get control. You know, absolutely do it, without a shadow of a doubt, because you’re best off to know. I mean you don’t want sort of die of ignorance. With breasts at least they can check out, and you can detect something relatively early, as long as you don’t ignore it but ovaries you haven’t got a hope because just by your monthly cycle you bloat. You don’t know, whether it’s you, it’s them, you know, if it’s a cancer rather. So I would say don’t be ignorant, go for it. Knowledge, I do believe knowledge is great. And then you can have control, and yes, I mean, yes, it does blight you from here on in. 

 

I mean if there’s a room of five people, five women, I have got one in five chance of breast cancer. It crosses my mind every time. If someone’s going to get cancer in this room, it’s going to be me … but then other times I don’t think about it, you know. You do think it’s there. I think it’s there for every woman to be honest Every woman has to check herself, every woman is told, be aware, be aware of this, that and the other. So, particularly, I think when you hit your forties, I think it becomes even more relevant. So… go for it.

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

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.

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.

 

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

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.

 

Hayley received a 'to whom it may concern' letter about being screened after her dad was diagnosed with cancer.

Well it goes back to, let’s think, October, September of 2007. Basically what happened was, well I suppose even before that I suppose, my cousin was diagnosed with ovarian cancer about three, three and a half years ago. And, it took a long while for the doctors to guess that she had cancer, and they treated for irritable bowel syndrome, and all these things because she was so young, and then when it was like a final sort of chance, that they checked out and she had cancer. By that time it had time it had spread and she has had to deal with it. You know, she had to fight it. 

 

And I didn’t know anything about this tumour at this stage, and I think because she was so young, she was just turned 40 when all this process started and 41 by the time they diagnosed the cancer. That she was so young for ovarian cancer that they checked her out for this gene. Meanwhile we are not a particularly close family. We knew she had cancer, we were sorry. I hadn’t seen her for over 20 years. I still haven’t seen her for 20 years. And that was it, that just ticked along in the background.

 

It wasn’t until my dad got diagnosed with cancer, that, I think it triggered something in her, that she released her records and I got a letter out of the blue, in as I say about September 2007 saying To Whom It May Concern - which was me - there was BRCA 1 gene in the family, we suggest that you get tested.

 

Having her ovaries removed hasn't affected Hayley much, but she feels unsure about having a mastectomy. She checks her breasts for lumps on a daily basis.

Do you feel different not having your ovaries do you think?

 

Not at all. Absolutely not at all, I think it’s like, because I knew, I had already decided not to have any more children. And children, I thought, no not at all. Makes no difference, they don’t weigh anything; I didn’t come out any lighter. The size of olives. Whenever I think of olives, whenever I see olives, I do think of my ovaries, and having, I mean I’ve got so many stretch marks and God knows what. There’s no scars or anything particularly, well I hardly have, you know, so it was, and they don’t even stitch you, they glue you.

 

So I went to the GP who like you know, and they said, “How often you often do check your breasts. I said, “Oh, nearly every other day.” And she checked. She said, “There’s nothing wrong with you.” I said, “What are those two nodules?” She said, “[name], they’re your ribs.” And I just needed that just to think I could get a bit of perspective on this. Just because, I don’t smoke, yes I drink, but not, you know, addictively, you know. Since I started work it’s increased, but you know what I mean I’m not an alco… and I just needed that, just to, as I say put things in perspective, but I’m not going to get breast cancer overnight.

 

It’s not just going to wake up with this huge lump, you know, or huge pea sized, you know, but I have read up on it. I know how to check my breasts. I know as best as I think I know, you know, using which bit of the hand. I do my best. And of course, when you go to the clinic, you know, have, it’s really odd, you have like this young doctor, who is chatting to you, pressing your boobs, you know, and saying, “Well one’s lower than the other.” “Well yes, okay. I’m not perfect,” [laughs] you know, and that kind of thing. You know.

But I think once you’ve had kids I think your bodies like a piece of meat anyway. I don’t think it really matters.