Jewish Health

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.

 

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.

 

 

 

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.

 

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.

 

Yes.

 

 

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.

 

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.