Liz - Interview 16

Age at interview: 50

Age at diagnosis: 50

Brief Outline: Liz had a wide local excision, and was waiting to have a mastectomy and DIEP flap reconstruction because more DCIS was found after her first operation.

Background: Liz is a separated mature student with three children Ethnic background / nationality' White British

More about me...

Liz had cysts in the past and a diagnostic mammogram to examine these. In 2008, at the age of 50, she had her first routine mammogram and was recalled shortly afterwards. After tests, including a biopsy which Liz found quite painful, she was diagnosed with DCIS and told she would need a wide local excision. Liz said she wasn’t given a lot of information so looked for more on the internet when she got home.

 

After having a wide local excision, Liz was told that more DCIS had been detected and she was given the choice of having more conservation surgery or a mastectomy. Her doctor recommended a mastectomy and Liz agreed with this advice.

 

At the time of interview, Liz was waiting to have a mastectomy and a DIEP flap reconstruction, which involves creating a breast by taking skin and fat from the lower abdomen but without any muscle. She saw the plastic surgeon twice before deciding to have this type of reconstruction because she found it difficult to choose between the different options. Liz was planning to have a breast one size smaller than what she already had and, six months later, the other breast reduced to match the reconstructed one. She said she felt fine about having a mastectomy and that, “I’d rather have no breasts and no cancer, and know that I can have something that resembles breasts and still feel like a woman.”  

 

While waiting for surgery, Liz said she was keeping positive and busy but felt daunted by the fact that both the surgery and recovery would be long. Since her diagnosis, she had started doing things that she had put off for years. She found Neuro-Linguistic Programming (NLP) techniques extremely useful and said these had helped her stay positive. Liz was training to be a reflexologist and said she found complementary therapies and meditation extremely helpful for relaxation.

 

Liz wrote to us after her mastectomy and said that, after this operation, much more DCIS was found than first suspected, so the decision to have a mastectomy had definitely been the right one.

 

Liz was interviewed for the Healthtalkonline website in 2008.

Liz says that it is important to stay positive for the sake of the children.

And how were your children through all this time? When you told them but also when you told them that you'd have to go back for more surgery?

 

They're worrying now, they are worrying and I know that, and I can see that, and of course all the while I'm positive and positivity, it's not just the key to be positive, you've really got to have, I believe, that state of mind too, because you can be positive but you can slip back into being negative quite easily, about it all and they can pick up on that. And I find that that there's, many things that I do that keeps me occupied and ready for anything that comes about now, and I can deal with it, and maybe see that, and so, them seeing me happy, whether inside I'm a fumbling wreck because I don't like the surgery, you know I'm not quite there yet, I've got two weeks till surgery.

Liz felt that a mastectomy would be the best option for her because she had widespread high-grade DCIS. She didn't want several excisions and was happy with her doctor's recommendation.

After you had the first surgery, later you then went back for another appointment and that’s when they said, the DCIS was more widespread and they would need to do a mastectomy, is that right?

 

That’s the case yes, I’d gone back two weeks after, sorry not two weeks after surgery, it must’ve, yes it was, I beg your pardon it was two weeks after surgery. It was going to be ten days after surgery, but I think they had a problem with the surgeon getting to see me. And obviously she likes to tell you, but she did the surgery and she knows exactly what she found, I went there, it was quite an anxious time but in a positive way, and I look at things on the utmost negative side but in a positive way, and I hope that sounds as though you can understand that. Its just that if I know the extreme of what she’s going to tell me and I can deal with that, because I’ve already researched what it could be, and so when she does finally tell me. And so I was prepared, and which is why I was called in, and I knew, I do feel that sometimes it gives you that opportunity to know before you’ve even been told, but to give you an opportunity to think, “Oh my word, what are they going to say to you?” And there was two other nurses that came in with her when she’d come in to check my wound, and then she went out again and she came in with two other nurses, and I knew that they weren’t there just to be trained or anything. I knew that they were there because she was going to tell me something, but I was prepared.

 

And that’s why I dealt with it, and she said that basically, her first words were that she has managed to find, there’s at least 31mm and not 6mm that they’d showed on the mammogram and the ultrasound and, to be honest in her opinion it would be better to have a mastectomy now. It wasn’t something that she said I had to have, but she said considering in the areas and she could actually, I could have another lumpectomy if I wanted to, but I could actually be going backwards and forwards for surgery for quite some time, if they don’t get it all out. And to be honest I didn’t really want to do that, and because I’d researched how DCIS progresses and what it can become, I really don’t see the point of putting anyone else through that, wasting people’s time and money and my health really, in sort of going backwards and forwards and trying to get rid of it. Because I know how the body works and I know that it’s probably the best thing for me because it’s high grade DCIS, they’ve recommended it, and if they’ve recommended it then, you know, and I’ve researched it, it’s good enough for me. And I’m happy with that.

Getting to the screening unit was easy but Liz postponed her appointment several times because of other commitments.

I went for a mammogram in January of this year, in actual fact I had a letter through for the mammogram but I’d cancelled the appointments a few times because of commitments. And what happened then was I went for the mammogram and it was a local mammogram unit that was in the local shopping centre, so it was quite easy to get to and I went up there, had the tests done and waited.

 

So you were quite busy at the time, and you changed your appointment a couple of times?

 

Yes, I changed my appointment a couple of times because, for one reason or another, I think it was something to do with my son’s school or something, but I knew I was going to go, it wasn’t something that I was going to say, “Oh I won’t bother.” I knew that I should go because something was telling me to be honest that I didn’t, I mean it might be psychological and I didn’t feel as if I was actually unwell, but because I’d been quite depressed over the last year and a half, on and off, and I hadn’t been well, and I was getting quite a lot of discomfort in that particular breast, I did feel that maybe, I must go, and whatever happens, don’t keep putting it off, I must go.

Deciding which type of reconstruction to have was difficult. Liz has chosen to have a DIEP flap reconstruction with a slightly smaller breast than before. Her healthy breast will be matched later.

It took me a while to make the decision of the type of surgery and reconstruction. The type of reconstruction, because I didn’t know which one to go for and that was the hardest part for me. I don’t seem to be thinking about the cancer, I still maybe haven’t quite, accepted that in one way or another, I’ve no idea. But I think, that part is the part for me to decide whether I’m going to have an implant, or a complete reconstruction of my own tissue. But that’s, you know, she was actually quite helpful the surgeon considering she was very busy and she has lots to do. She was very helpful in helping to direct me to the people that could help me.

 

Yeah, so did you talk to the plastic surgeon about the different options, or you were just given leaflets to read?

 

I was given the leaflets to read, and I was given the booklet, the standard booklet which I find is very helpful. But I then had an appointment with a breast nurse, who is my breast nurse, who deals with, in the local hospital, who deals with these issues, and she’s very, obviously very qualified. And she’s lovely, she’s very kind and understanding, and so I phoned her and spoke to her. And then I went to see her, and she helped me I think to a certain extent but it was actually when I went to see the plastic surgeon. And I’ve seen her twice because I couldn’t make a decision the first time.

 

The other one [operation] was to take the tissue and the fat from the stomach and then reconstruct. Now my problem with that, or not so much a problem, was the fact that she said that I didn’t have enough there to rebuild the same size. In actual fact that didn’t bother me, so she’s saying if I go down a size, what will happen with that type of reconstruction for me, is I will, she’ll be able to do a size less with what I have of my own tissue from my stomach and she will then be able to reduce the other one in six months time. So, for a while, I’ll be a bit lop sided, but I’m not that huge. But so she’s going from a D cup to a C cup and she said, don’t worry, I’ll do a fabulous job for you. And when she said that, I thought to myself, hey you know, Pamela Anderson, eat your heart out [laughs].