I went into this little room and they told me that I had cancer in situ [of the right breast]. Now the only word I heard was cancer and I was on my own, I didn’t have anyone with me and I thought, what are they saying? Cancer, what do they mean, what do they mean? I’ve got cancer? I’ve got cancer? And when they said, cancer in sit I didn’t know what they meant so I said, what’s cancer in situ And they said, oh, it’s a very early cancer very early forming and it’s something which will, if it isn’t addressed, will become a larger cancer. So it’s a very early form and you, it’s nothing terribly to worry about

But I was really frightened because it was something that I’d never touched upon before, I had no idea. Cancer was not in my world and, suddenly, here I was being told I had got cancer. And that was the only word I heard and I was frightened and I didn’t have any information. I didn’t know where to go to get information, I needed to know what cancer in situ was and nobody could tell me.

So I came home and I was so frightened and I didn’t know who to turn to or who to speak to, I just screamed and screamed. And I phoned up the nurses and they just kept telling me the same thing and I thought, well, yes, that’s fine but it’s not you that’s got the cancer, it’s me, and you keep telling me this and I need to know more.

To be honest that day I did feel there’s something wrong but I haven’t got life threatening cancer. And my initial reaction always when I’m not quite sure about something is to go and find out information. So I was finding out information in a very, quite a relaxed frame of mind and also quite a truly curious frame of mind. Not a kind of, Oh I’m anxious I’m worried. My God, what have I got frame of mind. And everything I found out increasingly reassured me. So I probably, maybe a bit optimistic about it. If I’d been wrong, if it had been breast cancer, it probably would have hit me doubly hard because I’d had this kind of terribly, this is fine, relaxed attitude. We can do something about this.

it’s just been, to me it’s been a distraction really, something to be dealt with rather than something to agonise about. I’ve done, I’ve looked at lots of websites and got lots of brochures that were useful and all the rest of it. They were, I got lots of information that was very useful at the time, deciding which kind of reconstruction to have. And deciding whether I wanted nipples or not and so on. But I was very conscious that it’s probably not a good idea to spend too much time on the web because almost by definition I think the people who are posting blogs or posting to websites are people who are anxious about something. And if you’re not careful you can get anxious where you weren’t anxious before and, because this is the kind of centre of concentrated anxiety. So I try to just dip in and use it for information and then come out again. And that was tremendously useful.

After I left the hospital my daughter tried to keep my spirits up. She’s a very positive person and I went back to work because I thought the best thing to do was keep working, try not to think about it. And I worked up till the day before I went back to the hospital and I had to wait an hour after my appointment date, which seemed like an eternity.

And finally got in to see him and he said to me, You’re a strange one I always remember that because I thought to myself, well my family could tell you that, I am. He said, You’ve, it’s come back as non-invasive cancer

Even though there was a lump?

Yes. Yes. He was certain it was going to be invasive. And the fact that it was non-invasive he was, thought was very strange. And I can remember I must be the only person whos ever been told that and I breathed a sigh of relief, because I just thought, Thank God for that

I went back to talk to the doctor. And she said, Well we think that this is probably DCIS And I didn’t even catch the name of it the first time. And then she started to try and explain what it was. And I was just interested really. I still didn’t feel particularly threatened by it.

And in fact I think she did such a good job in terms of being nice and being calm, that I really didn’t think it was serious at all. And for a long time I was saying, Well look can we just sort this out and I don’t think I need to tell to my husband anything about this, we’ll just sort this out” And at one point she said, Well actually Jane I think you will need to tell your husband about this and I don’t think we can just sort it out without him knowing And that’s when I thought, Oh this could be quite serious

Funnily enough I never ever got worried or frightened. And all my friends have said to me, Oh, you’ve been so brave And I said, No, it’s not a question of being brave When it’s happening to you, you just get on and do it. If it’s happening to your friend, your mother, your sister, then you fall apart. You know, because you’re worried and you’re helpless. But when it’s happening to you, you just do what they tell you.

I was shocked because I couldn’t feel anything. And I thought if you had breast cancer you could feel a lump. But I couldn’t. So I still didn’t really believe that it was cancer.

And at this appointment did you take someone with you?

I did. My best friend.

How did your best friend react at the time?

She went white. She was more shocked and disturbed than I was. Because, as I say, when it’s happening to you, you just get on and do it. But when it’s happening to someone you care about, it’s worse because you feel helpless. And you’re worried. And you think they’re going to be ill. they’re going to be in pain. they’re going to die. But when it’s happening to you, you just well I just didn’t think like that.

Yeah. So you didn’t react?

No. No. And I still haven’t never shed a tear.

Never?

Never [laughs]. No. Perhaps I don’t find value my life very much. I don’t know.

Everyone’s different. I mean, you sound as if you just had the attitude of getting on with what you had to get on with.

I just thought very positively. And then they were doing what they could for me. They were doing it very quickly. And I literally just put myself in their hands. And if they told me I had to be at this hospital, that hospital at that time, I was just there. And just let them do what they had to do next, you know. Get it out. Get it cured. And let me get on with life.

I became very depressed for a few weeks and I did think to myself, Beverly it’s non-invasive. What are you making all this fuss for But like all other women whove had breast cancer, I’ve had major surgery. I’ve had to put up with a lot of changes to my body. But after about five, six weeks the doctor had said to me did I want tablets and I said, No, it’s something I’ve got sort in my own brain The breast care nurse did say, said did I want to have counselling? And I said, No, I’ll sort it for myself

And after ten weeks, no twelve weeks, I started to go back to work. I thought best to get back to normal. So I went back to work and I actually, was probably one of the best things was to get back and just to start to feel you’re back to normality.

Because at home were you were just thinking things over and over?

Yeah. That’s the trouble. At home you don’t, you know, you’re just, there’s so much housework to do and that’s never been one of my most favourite things anyway. So no it was nice to get busy and do things and start to be normal again.

Can I go back to one other thing because a few women have mentioned that, that once they were diagnosed and then they had surgery things happened quite quickly.

They do.

But afterwards that they felt, Oh my God, I feelrdquo;, you know, they felt

Terrible

depressed.

Yes.

because it was afterwards that you’re at home with all this time on your hands.

Yes, that’s right. I think most women do. From what I’ve seen on most of the websites, most women, the minute they’re, any of their treatment has finished, whether they’ve had to go through everything, chemotherapy and the works, it’s the minute the treatment finishes you feel, I suppose you’ve kept yourself going, you’ve had to keep yourself going, you’ve been, you know, the brave person and whatever and done everything that was necessary to be done.

And then all of a sudden you’re just left to it. And you’re on your own. And you sit at home and you think, Oh my god You know. And it’s the first time you’ve really probably had a good chance to think about it, I suppose. Up till then you’re just going from one appointment to the next appointment, to getting an operation done, to getting something else done and you don’t really think about it. And then, and for my own personal thing, I just felt it was something I had to work my way through.

it’s strange that for me the whole thing of losing some part of me physically felt like going through some sort grieving. I don’t feel physically that much less now, it’s really just a mental bit, that this was a part of me who breast-fed two children. Been through breast feeding twice and now it’s kind of been taken away, it’s a bit like a loss but I’m not saying I didn’t want to lose it because I wanted to bring the operation date forward if possible rather than delay it, to get it out of the system before it can go ballistic.

it’s just a bit like going through the same stages when you go through a normal, grieving period. Of denial, of not being able to believe that it’s happened to you. To pretend that when you’re asleep, you’re still the same person as you were before the operation. Then all you have to do is just turn on your side and reality kicks in. If somebody could come up with some solution, what to do between those hours of the night when you get up and everything is dark, dark, dark, so black in your head, that would be good.

One of the things which a lot of us are told when we are diagnosed with DCIS, is that we are lucky. We’re very fortunate, we are the success story. I was actually told that by my pathologist, that we are the success story. When you are feeling absolutely depressed, like you’ve been hit with a sledgehammer, not only at having a breast cancer diagnosis, but also losing your breast or having quite major surgery to your breast, and possibly even radiotherapy, and with this unknown thing which might or might not turn into breast cancer, and you feel these conflicting emotions. On the one hand of being, yes relieved that they don’t think it’s invasive, but it might be. They won’t know actually until they do the surgery, so that sword is still hanging over your head. But at the same time, people telling you that you should feel lucky, when you don’t feel lucky.

And the other thing is that you certainly feel embarrassed and guilty. I’ve made contact with other DCIS patients who feel in exactly the same way, a fraud. People say – people know you’ve got this breast cancer diagnosis, and they are all concerned as they would be if you had real breast cancer, but then you feel a fraud, because you’ve got this thing that is pre-cancerous or early cancer, and there’s almost a hundred percent cure rate. All you’ve got to do is have it taken away and you’ll be okay, and then people also say afterwards – are you still in remission? But remission is a completely irrelevant concept to DCIS, because you never had breast cancer in the first place.

So there’s such a difficulty in relating to the general population of caring, concerned people who get the wrong impression altogether about what you’ve been through. And that’s a mismatch, which is really difficult. And there’s also a terrible mismatch between DCIS patients and patients with real breast cancer. Because people with real breast cancer are seriously worried about whether or not it’s invaded the rest of their system. And they would give their eye-teeth, wouldn’t they, to have a DCIS diagnosis, so why are we feeling terrible about it? It’s a really difficult emotional thing, and I’ve met a number of, I’ve contacted a number of DCIS patients who, like me, find it really quite difficult to discuss breast cancer with women whove had other breast cancer diagnoses, and not DCIS.

You feel a bit like a poor relation cos it’s like I’ve only got DCIS. You still have all the emotional baggage that goes with it, especially if you’ve had the mastectomy. In fact sometimes if it was an invasive cancer, sometimes, the breast care nurse said to me that its sometimes simpler because you could have a wide lump excision, you just follow the protocol for chemotherapy or radiotherapy and, its like the lady who I said was a receptionist, she’s said, I didn’t have as much to go through as what you’ve gone through Although I wouldn’t want chemotherapy I have to say. But she didn’t find that too bad. She said, I haven’t gone through as much as you’ve gone through she said, you’ve lost your breast, I really wouldn’t have wanted to have done all that. And she hasn’t.