Michelle - Interview 31

Age at interview: 41

Brief Outline: Michelle was diagnosed with breast cancer and had a mastectomy and chemotherapy. She was shocked to discover she has a mutation on the BRCA2 gene and has since had another mastectomy and her ovaries removed.

Background: Michelle is a tutor and housewife. She is married and has 3 children. Ethnic background/nationality: Jewish

More about me...

 Michelle was diagnosed with breast cancer a year ago and describes it as a huge shock, as there was no cancer in her family. The treatment was a mastectomy with a dorsal latissimus flap reconstruction and chemotherapy. Her consultant suspected she may carry the BRCA mutation but decided not to test her at first. She eventually was tested during her chemotherapy. As there was no family history of cancer, Michelle describes her approach to the genetic testing as ‘flippant’. She, and other family members, did not think she could possibly carry it. To find out she did was “horrendous” and Michelle describes how she has battled with the choices of preventive surgery. After much thought, Michelle chose to have her ovaries removed, a decision that she describes as worse than having her breast removed. She didn’t want to go into an early menopause and worried that she could experience depression. 

 

Michelle has also decided to have her other breast removed but this time have an implant rather than the latissimus flap reconstruction because she found that procedure very painful with long recovery period. Michelle feels she has “fought tooth and nail to keep her body intact but BRCA won”. She is very worried about whether she has passed the mutation onto her children.

 

Having to make the decision to have her 2nd breast and ovaries removed was much harder for...

Was it a big decision having your ovaries removed or was it …?

 

For me, that was the hard… one of the hardest decisions I had to make. I mean realistically I didn’t have a choice. I did not have choice. It was, you had to have your ovaries out because you don’t want, you know, you don’t want to get ovarian cancer and then you don’t actually know if you’ve got it. It’s a silent cancer and you don’t recover quick… the recovery’s less great than with breast. In that respect it was a no brainer, but I struggled terribly with actually doing that. I negotiated in my head for so long, for such a long time, about how long I should, how long I’d got that I could, I knew I had to take them out eventually, but do I have another five years? Do I keep them for five years, four years, and enjoy my life, and that’s what I tried to do. I negotiated with myself and I was trying to get the best deal I could to keep my ovaries for as long as I could, because I didn’t want to go into the menopause for many reasons. 

 

Ultimately again, I came to the… I was a bit pressurised by family and certain things and I’ve had them taken out, not really wanting to, I cry about it all the time actually. Yes. That’s … in a way that for me is almost harder than having, than my first mastectomy. Not my second mastectomy that I’m scared about as well, because that’s choice. Anything with choice is for me harder then being told, right you’ve got to have this done to save your life, okay, absolutely. But, but choosing because it might never be. I might never get ill again and it’s like well you’re doing this and it’s hard for me to make these choices which are going to affect my life in a big way when I’m well at the moment. 

 

I’m just interested in why the ovaries were worst? Was it just the menopause or were you considering having other children or … was it symbolic?

 

It wasn’t symbolic really. A little bit. For me, certainly not about having more children, I’m not really allowed to have children anyway having had breast cancer. It would put me too much at a risk. It wasn’t for the children. It was emotional. It’s an emotional thing. I said, I’m a very positive person, and I enjoy my life and I, you know, for me there’s no point in being miserable in your life, there’s no gain for that. For me everything’s about being joyful, and grabbing good times and living life to the full. That was me before I was ill and that’s me now. But I know that having your ovaries out, you could, one could be put in a place of depression. It affects your hormones so badly and there’s nothing I’m allowed to take. Now for me, being depressed is like the biggest, ‘no, no’ I could... It’s just not an option for me. And I was fearful that I might become this negative miserable person and out of control with my emotions. I didn’t, I don’t want that for me. And that’s what I fought with. I fought with not wanting to be a depressed person, a moody, whatever it is that I thought we was going to be like, this was before and having had it done, well, I’m not this depressed person that can’t get out of bed, no. 

 

That is not who I am but occasionally I’m finding myself in a situation where I’m miserable. And I don’t know why, and I’m attributing that to my ovaries wrongly or rightly I don’t know because it could be because of what I’ve been through in the last year. But it’s like a whoosh it comes over me and I can’t do anything about it. And that’s like hateful to m

Michelle was told that she might have the BRCA mutation only after she had completed her chemo...

The surgeon at the time did not mention to me that he thought that I might have the BRCA gene, but he did think that I might have due to my age, and being an Ashkenazi Jewish girl. He, alarm bells rang with him that he felt that it would be necessary to test me for the BRCA gene mutation. But he didn’t mention it at the time. Now I’m … the reason being when you’re just diagnosed with something like that, there’s so much information thrown at you at once. You know, I was otherwise a very healthy, fit and well person. It was too much information. So he decided to keep that information for a while. And I didn’t get…. This information wasn’t put to me until after my chemotherapy. 

 

But in most people’s cases I think it’s a good thing to know at the beginning because now I’m faced with the choice that I have to have my other breast off which I’m going to do. So I have more surgery to face now. And I also have the choice to have my ovaries out which I’ve now done. The ovaries are separate because you can do that keyhole. It isn’t so intrusive. But the actual going into surgery again now - I don’t really want to. I’m kind of getting my life back on track. Don’t really want to do that. But I have to. If I would have known then I could have had it done, dusted on that first day, back in 13th March 2009, double reconstruction at the same time, if I would have been more aware.

 

Have you read much BRCA or have you just relied on the information you’ve been given?

 

I’ve read a fair amount, a fair amount, but it’s quite complicated to be honest. I know there’s three identified genes that they’ve now found that are linked to BRCA, to breast and ovarian cancer, and other cancers with it. And BRCA 1 or 2 is either one of them. And you’ve got a 50% chance of carrying if you’re carrier, of passing it on, of course, to your children.

 

Michelle says it's good to take control back and make choices if you find out you are a BRCA...

Message? Well I I don’t know if I’ve got a message for them, but I say I totally understand if they’re feeling shocked and stunned and they’ve got some choices to make, but when they’re ready to make those choices, they can take control back. And actually, you know, it’s very raw for me still, very raw, you know, but the ovaries are separate but my boobs, great. It’s not, it’s not fantastic, you know, of course I’d rather not have that, but life go… it’s fine. It’s fine. Having a mastectomy. I would, the message I would give to somebody is “You want to see what my boobs look like? Because they’re great. See my boobs and you know what, it’s okay. But you’ll be here and that’s what matters.” That’s kind of where I’m at, but you’ve got to get there yourself. You won’t get there by people telling you that, you’ve got to go through everything and come where you’re going to be at the end emotionally, because everyone’s just, you know, different. I actually probably took longer to get there than most, and I think most of the people, “Oh my God I’ve got that. Take it out. Get my boobs off.” You know, but I wasn’t like that. I fought tooth and nail to keep my body intact. But BRCA won and I had to listen to the doctors and it’s not a good place to be having that gene.

 

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

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.  

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

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.

Michelle's counsellor helped her through chemotherapy, whereas talking to other women with breast...

When you’ve talked about choices, how difficult is it when you’re faced with choices, did you discuss the choices with other people a lot. Have you tried to resolves these choices yourself?

 

No I’m a very talky person. I like people and I’m not very good at making decisions and on these subjects I talked to genetic people, certainly medical profession people. [2 sec pause] And I have also spoken to other women in the same boat although that’s not been helpful and I’ve spoken to my close, my husband and my best, my girlfriends. And I have a counsellor. All of which has helped me consider the decision where I’ve, where I am at.

 

And you said it wasn’t helpful talking to other women in a similar position to yourself?

 

No, because no two people are the same. And, you know, one girl springs to mind, very, quite negative with her experience. Oh no I can’t face it. I don’t want to live with the fear. I don’t want to live with the fear. Well that’s not me. I don’t want to live with the fear. But I wasn’t living with fear. I was okay. I was working out that I’ve only got five years with my ovaries and working out that … [2 sec pause] I was trying to get a good deal for myself. Negotiate a good deal for myself with BRCA. And other women with their… have been like, “Oh God, you must check yourselves. If I get osteoporosis with Tamoxifen I’ve got…” Talking to other women is not necessarily a good thing. That put the fear in me. More than I had. So …

 

And you haven’t got involved with support groups then if you’ve not been talking to other women, or have you tried to be involved with support groups?

 

Now I have visited a local, it’s called Chai Cancer Care. It’s near where we live offering all sorts of services for men and women who have cancer. And that’s been okay. But I have actually found that the only person who really did it for me, was this kind of, my own counsellor that I found on my own… and it didn’t really did do it for me there. I didn’t want. It didn’t do it for me. My counsellor does it for me. She, she helped me through chemotherapy, which was at the time my biggest stuff. I found that horrendous. Again it was the lack of control. I don’t do drugs. I don’t do neurofen. I don’t do harmful things in my body. To have chemo was horrendous, psychologically for me. And she’s amazing with tips. She has been the one that’s really helped me through this experience mentally. And other women have been phenomenal in terms of when they found out I wasn’t well, people in the community have offered acupuncture for free, you know, physiotherapy. People have been so amazing. So, in that respect the extended community, alternative people, and I had that. That was amazing as well.  

Michelle was the only one in her family who had had breast cancer, so she was convinced that she...

So basically it had never occurred to me to be tested before. It had never been in my knowledge to be, you know, know what BRCA is. There isn’t anybody on either side of my family that has been unwell with cancer, let alone breast cancer, that we knew of. It was actually quite rare. My situation’s quite rare. Usually it runs, if it runs in family and people are aware. It didn’t happen in my case.

 

So, after all my chemo it was suggested to me, that, by my surgeon that I be tested for BRCA, because and we were like, well why? And he told us his feelings. And my mum at the time said, “You know what Michelle, you’re not going to have this thing, because nobody’s unwell. No one’s got it. No one’s had cancer. It’s not going to happen. Rule it out, get the test.”

 

I didn’t have counselling which was wrong. I didn’t have the proper… because we were so… It was such a rare situation that there’s no one else that’s got breast cancer. It was like a no brainer. Of course you’re not going to have this thing - that we didn’t even know what it was. Go and have tests.

 

So I went and had the test, quite flippantly, while I was having my chemotherapy they took extra blood and they just sent it off to be analysed. And unbelievably it came back that I have the mutation on the BRCA 2 gene which was a huge shock, a huge shock. And the repercussions are obviously huge. But it meant obviously that one of my parents carried the gene. It’s a 50/50 chance that you can get the gene from one of your parents. And initially my mother was you know, really concerned and worried that it was her. And that she’d carried this thing, and obviously it hadn’t come out in her, or in her mother and so forth. And so she had the test straight away and it wasn’t her. Which meant it must have been my father, who subsequently he had a test and it was proven, yes he carries the BRCA 2 gene. He’s 64/65, never been ill. His parents, although they’re not alive, did not have cancer in their lifetime. They both died of heart related illnesses. And we were trying desperately to track this back.

 

We now think, that, because my father was an only child, possibly his father carried the gene and his father’s sisters, we now know in Canada somebody had breast cancer. But it’s not close, and well it’s close, but it’s not obvious. In most people that I’ve met since, their mother or their aunt, or they’ve all had breast cancer. Because no one had, it was more of shock in my case. But that’s how it came to pass that I found I had BRCA 2.

 

Okay. Thank you for that. Can I ask, when you said that consultant delayed mentioning that you carried the gene, do you think that was the right decision for him to make at the time?

 

I’ve thought about this question a lot since. Now, I do believe... I’m sitting somewhere, there’s a good for and against on this one. I think when you’re first diagnosed with something like breast cancer, your whole world is literally pulled from under you. Everything is upside down. If I would have had family that had been unwell, I might have been more aware a) of breast cancer and b) that it runs in families. Therefore if that would have been me, which actually is most people then I think yes, I think he should say as it runs in your family, I think we should test your for this, because you will then have more choices. And the choices are that we could prevent you ever from having any other cancers by removing your other breast if you want - you have choices, you are aware of your choices and over your ovaries because BRCA is connected to your ovaries as wel