Jo - Interview 11

Age at interview: 42

Age at diagnosis: 42

Brief Outline:

Jo was diagnosed with DCIS in 2007, aged 42, over two years after seeing doctors about a bleeding nipple when she was breast-feeding. She had a mastectomy.

Background:

Jo is a married mother with two young children. Ethnic background / nationality' White British

More about me...

Jo first suspected a problem when she was pregnant with her second child. She had had mastitis after her first child and, during her second pregnancy, had to express milk and noticed bleeding from her nipple. She was referred by her GP to a breast clinic, where she was told that the bleeding was pregnancy-related and nothing to worry about.

 

About two years later, when Jo was breast feeding, she noticed more bleeding from her nipple. She rang her GP, who told her not to worry because she had had this symptom before and had had it checked at a breast clinic. Jo said she felt she had been to a ‘centre of excellence’ and trusted the information she had been given.

 

Six months after phoning her GP, Jo again noticed bleeding from the nipple while she was breast-feeding. She visited the GP, a different doctor, and was referred again to the breast clinic, where she had a mammogram and other tests. Jo was diagnosed with high grade widespread DCIS and told that she would need a mastectomy.

 

Being a mother of two young children, one aged two and the other five, Jo’s overwhelming concern was for her children. Despite being shocked and concerned herself, she also had to arrange child-care quickly as she was scheduled for surgery three weeks after diagnosis.

 

Jo decided not to have reconstructive surgery because she felt that it was a long operation and she needed to be able to look after her children as soon after surgery as she could. A DIEP flap reconstruction, which involves creating a breast by taking skin and fat from the lower abdomen but without any muscle, was also unsuitable for her because she did not have enough tissue on her stomach.

 

Before surgery, Jo was anxious about having general anaesthetic and whether her children would be allowed to visit her in hospital. In hospital, she found it difficult to sleep because of the noise and, one day later, transferred to a private hospital where she felt she could recover better and quicker. She also had a lot of bladder pain and found it difficult to pass urine.  

 

Jo said that, much more than her concerns about having a mastectomy, were her concerns about seeing her children grow up and recurrence. She was disappointed that she had not been invited for a mammogram after she had given birth and said that she was misdiagnosed. She was diagnosed with DCIS about two and a half years after a visit to a GP, a referral to a breast clinic, a phone call and another consultation with a GP, and a second referral to a breast clinic. She wonders if, had she been diagnosed during or shortly after pregnancy, whether she would have had to have a mastectomy at all. She said she was also disappointed with the nursing care she received.

 

Jo advises women to get any breast symptoms checked out as soon as possible and, if they have been told that nothing is wrong but are still concerned, to get a second opinion. She will now have yearly mammograms and felt concerned about having these.

 

Jo was interviewed for the Healthtalkonline website in 2008.

Although Jo grieved for her breast, her main concern was being there for her children.

I definitely would say to anyone who’s having it, it’s not a huge deal. Honestly it isn’t. But it’s like losing anything, you will grieve. Because you can’t just do that, and it goes quite deep. You know….

 

It was fine on the day. I lost my sleep. Everyone’s sleep goes of course. I completely lost my sleep. I couldn’t sleep at all. I was so bloody terrified which is unusual because I have had a lot of illness in my life. But I was just scared for the children. And that again, that is the main difference I think between the old and younger woman is, your main concern is to be alive for your children. You must be there for them. And it was just horrendous.

Bleeding from Jo's nipple was dismissed by doctors when she was pregnant and later when she was...

The very first problem was, I was pregnant with my second child and because I’d had problems with my first child with mastitis, which is a bit lumpy, you know, in the breast, I sort of had a similar sort of feeling. You usually get it after you’ve given birth but I’d a similar feeling just, I can’t remember, I think I was in the last month or last two months of the pregnancy, so slightly lumpy. And so I expressed, because you tend to with mastitis, you express the milk out because you’re getting milk even before you’ve given birth. And blood came out.

 

When you expressed?

 

When I expressed, and obviously it was a bit of a shock because obviously throughout the first child, when I’d expressed many times because of mastitis, nothing like that had happened, only milk would come out. So I immediately went to the doctor, a bit worried. And they immediately sent me up to the breast clinic. You know, within a day or so, and I saw someone and they said, “You haven’t got any lumps, it’s just pregnancy.” So that was it. I was quite relieved, gave birth, breast-fed. And, of course, you don’t notice really anything because everything that’s coming from your breast goes straight into the baby [laughs], you know. So I didn’t notice anything. And sometimes you can, people say you might get bleeding anyway with breast feeding because of whatever. But I didn’t anyway notice anything.

 

And then about, well it would have been, it was just, let me think, it would have been almost two years later, two and half years later almost…blood again. Oh my goodness, what’s going on? So I ring my doctor and I say, “Look I’ve got this bleeding.”…And she said, “No, don’t worry, you’ve been checked out, no problem.”

 

So I waited and it was two years actually since, and then I waited another six months because I thought she, no, I’ve been to the Centre of Excellence, they surely know what they are doing. I’m very busy with my children that I haven’t really got time for that anyway. And the doctor’s reassured me. So I went another six months and I just thought actually, and then when I was feeding, the blood, you know, he was slightly spitting it out. And I’m thinking, this is so wrong. This is so much blood coming out. It can’t be right.

 

So I did actually go back. But a different doctor. I said, “Look, probably nothing but I’d really, I’ve got to go back to these people.” And she said, “Yeah, it’s probably nothing.” And there was a very quick slippery slope to having a mammogram, having another mammogram, having a, what’s the next stage, a …

 

Did you have an ultrasound?

 

… ultrasound, having a biopsy… And then, yes, you’ve got DCIS.

Jo didn't want immediate reconstruction in case she'd need chemotherapy or radiotherapy after her...

That’s my only concern' has it spread? So I didn’t really want any reconstruction until I knew that I wasn’t going to be having chemotherapy or anything like that. So I just said no. And he did paint a pretty gruesome picture so I thought I don’t think I’ll bother. And also I wasn’t fat enough for anything that he wanted to do, which was one of these stomach ones, you know they take the stomach fat. So I just left it. And then I just waited for the operation really….

 

Yeah. And you mentioned that possibly you would maybe consider reconstruction later. Is that …

 

I don’t know, I don’t know if I would. I think I was definitely against it at the time and the surgeon said, “Oh well we’ll see.” And I thought, “Well [laughs], I don’t think I will.” But actually as time goes on, you do think, maybe. For me, it’s just an issue with the children. I wouldn’t want to go into hospital again. Because I just don’t want to be away from them or worry them. Because they were very, very anxious and worried about it. Even though I really played it down very much. I wouldn’t want to do that to them so they would have to be a lot older…. And it is a major, he said to me, “Don’t do it unless you really want to.” This was the plastic surgeon. I thought, “Oh, do I really, really want to?” That’s what he said, “If you really, really want to do it, but don’t if you just sort of want to.” And I thought, actually, because it’s a major operation, it’s not like a caesarean or anything like that, it’s, not that I’ve had a caesarean.

 

You need time to recover.

 

You can’t have young kids and do it. And also if it fails, he said, it’s just horrific. I mean he was really quite blunt, which was great. Maybe I got a fuller interview because I went privately but certainly he was pretty good. He certainly scared the hell out of me. I thought [laughs], I don’t want reconstruction.

Jo's main concern was her young children. She was breast-feeding and had to wean her baby off...

It’s just a very emotional thing. I absolutely feel if I’d been older and the children were off, it wouldn’t be so huge. You know you don’t have to, you only have yourself to worry about. I wasn’t concerned about myself at all. I was only concerned what am I going to do with kids. Horrendous. And they were quite upset about it I have to say because I had to tell them.

 

I was breastfeeding. I was actually breastfeeding at the time because I did this sort of extended thing, just slightly. But, you know. And I had to sort of rip him off the breast and say that’s it. I had three weeks to get him off. And to tell, you know, say that’s it.

Jo found it very difficult explaining to her five year old that she would be having a mastectomy.

Then I had to tell my oldest who’s five. I’m going to have my breast taken off. Which he, it was horrendous. And he said well, what do you mean taken off? I said, well, because I had to tell him because he would notice…. He would notice it wasn’t there. “Do they use knives?” And I said, “Well yes but I’m asleep.” But then of course, oh my god I don’t want to tell him I’m asleep because then he might think, so it’s very horrible you know. So it was horrible. He was really upset.

 

But then afterwards they just, and in fact recently they said, “Your breast is broken”, what they call a breast, you know. It’s broken, I can’t fix it. You know, and they’ve seen the scar and they’re fine now. But at the time it was horrendous, really. The children thing is, this is why the young women thing, it’s important, not that I want to tell people it was horrendous but that’s the stress of it. The actual thing is fairly minor, the mastectomy, really. It really is.

Jo got hardly any rest on the ward. She had another illness to deal with, as well as DCIS, and...

The nurses were unbelievably terrible. Really horrendous. Terrible. And this is a cancer unit, with a cancer ward. I said, “Can I be in a quiet sort of room because you know I’m not actually. Well I have a chronic illness anyway.” Not interested in the chronic illness. I get tired quite easily. So they didn’t put me on the big ward. I think it’s a big ward, there’s about five women. But they put me right opposite the sort of meeting area / staff area, where they all congregate and because it was around Christmas time, I think it was 11th December I had the operation. And there was just, they were laughing and singing and joking all night long. You know, no rest.

 

And the woman opposite was just like, because I was sharing with one other woman, older woman in a terrible way. And the buzzers were out of our reach and we couldn’t reach them. And she’d have to say to me, “Could you try and call them?” And then I’d have to say to her, “Can you call them in?” And they’d be really annoyed with us. And I said, “Please shut the door.” “No, we can’t shut the door.” Because you’ve just had an operation, you just want to rest. You’re so exhausted. You know and it’s just ….

 

Was it specifically a breast cancer …or cancer generally.

 

No, breast cancer unit, centre of excellence. And honestly I would complain but what is the point, I feel totally defeated… I feel, like everyone else, you think what’s the point of complaining, they won’t … I just thought that was disgusting. The way we were all treated. Some people think it’s no doubt a great experience but the way we were treated and particularly me, I felt I was treated very badly. Even worse than the woman, because I was the complainer and saying, “Please shut the door. I need the rest.” You know, I can’t, you know, I had a very bad reaction to the general anaesthetic. I was very, very sick. Constantly being sick.

 

Just things like, you know, trying to, I couldn’t pee. When they give you the general, sometimes you lose your, and they just kept on making me try to pee naturally. And I just said, “You’re going to have put a catheter in.” Which I knew about because I had an epidural with my first child, so the same sort of thing had happened. And they were just sort of refusing and then eventually they did. In a really horrible rough way. And then they just kept on forgetting to empty it, which I later found out was very dangerous because it could just back up and, just things, really basic things like that. And completely unsympathetic. I mean, no sense that you might have been through anything. Really horrendous [laughs].

Jo's husband seemed to be able to block out his emotional reaction to the diagnosis. She does not...

How was your husband through these three weeks?

 

He was great. Fine. Yes he was great. What can I say about, you know, he was pretty worried. But he didn't say very much. But he was taking over more of the childcare at that point. A lot more because I was just a bit too wreck like, you know not getting my sleep. And just finding it, it's almost unbearable having anything to do with the children. It was hard to think when you're in extreme stress, just this whole childcare thing is so difficult for you. You just sort of want this operation to come. But [my husband] was great. Yeah. It was fine.

 

Did you feel that he needed someone to talk to? Or you felt that he was coping ok?

 

He was fine. I mean there wasn't really much to say. I don't think he would've spoken to anyone. You know, men. I mean I supported him if he needed it. But I think we were just waiting to see what happened. I think he really blocked it out, to be honest because you know it was a big worry for him. I think he blocked it out. He didn't seem overly upset. It was pretty horrendous for him and I at the hospital, and he had to say goodbye. He was very worried about that. I know that. It's awful.