Felicity - Interview 23

Age at interview: 43

Age at diagnosis: 41

Brief Outline: Felicity was diagnosed with DCIS, aged 41, after being referred to a breast clinic because of breast pain. She had two excision operations, a mastectomy and radiotherapy.

Background: Felicity is a married health improvement practitioner with two children. Ethnic background / nationality' White British

More about me...

Felicity had a constant ache in her left breast and was referred to a breast clinic by her GP. In 2006, at the age of 41, she was diagnosed with DCIS and had a wide local excision.

 

After this operation, doctors told her that there were no clear margins and she was given the choice of having more conservation surgery or a mastectomy. Felicity found this a very difficult decision to make and decided to have more conservation surgery. Afterwards, however, she was told that there were still no clear margins. This time her doctors recommended a mastectomy and Felicity agreed. She also had some lymph nodes removed and these were clear.

 

Felicity chose not to have breast reconstruction at the same time as her mastectomy and said that, although the doctor strongly recommended she consider it because of her age, she didn’t like the idea of major surgery using other parts of her body. She also had two young children to care for and was comfortable wearing a prosthesis. Shortly after her mastectomy, she had radiotherapy.

 

Felicity said she had very good care and was given plenty of information. She also looked for more information on the internet, including information about the experiences of other women. Felicity had a lot of support from her friends and, after her recovery, did a walk for a breast cancer charity and raised funds to help research.

 

Felicity was interviewed for the Healthtalkonline website in 2008.

For Felicity, the time before the mastectomy was harder than having the operation. Later, she was glad she had a mastectomy because she'd had widespread DCIS and needed radiotherapy.

I think the time before the mastectomy was much harder than the actual reality because again I had really good care and I was in hospital for five or six days in [hospital name]. There were no complications and the nurses there were fantastic. I had my own room and I was very, very well looked after. So that was really good.

 

And I think the worry about it was much bigger. It was hard to think afterwards, the whole body image thing but I've got two small children as well. So you just have to get on with it.

 

So I was at home after that. I'm just trying to remember, piece it together. And when I went back again, my whole breast had been completely wall to wall covered with DCIS. And I'd obviously made the right decision then to have that mastectomy. I was very lucky that it didn't go into my lymph nodes. They did remove some of my lymph nodes but it hadn't gone through so they only removed two or three. So I was very, very lucky but because it had gone right to my chest cavity, my wall, my muscle, I had to go and see the oncologist and get radiotherapy.

Felicity had two excisions but, because there were no clear margins, she had a mastectomy shortly afterwards. Talking to another woman with DCIS helped her make her decision.

I went back and it was very much a case of, you could, it was very much a case of you have to make a choice here. You know, what we found and we found DCIS, we haven't, there were no clear margins so we have two choices. You can either have another operation to see if we can get some clear margins or you can have a mastectomy, just like that.

 

And that was the hardest thing for me because I didn't really, I couldn't make that decision. I found that really, you know, you have to decide if you're going to have your breast cut off. You know, it was a very difficult thing, and I don't think there’s any other way to say it, so I wouldn't say that they were at fault for saying that but it's, I think because it wasn't breast cancer it would have been an elective mastectomy so they were only in a position which they could say it's up to you. And that was a very difficult decision to make.

 

And so I went home and, after talking to friends and just working it through, I decided I'd go for second operation rather than the mastectomy. Which in hindsight, well I don't know if that was a good idea or not [laughs].

 

I did a lot of reading around it as well, so I understood very much what's happening to me. And again I also had, I also used the Breast Cancer Care website to get information from other women and also to take part in their peer support. And so that was a really, really good thing for me because again I had to make decisions about having a mastectomy and things and it was at that point that I did that. And somebody phoned me up who had been diagnosed with DCIS and it was twenty years ago and it had been left and they hadn't done anything about it. And then she had developed a tumour about six years down the line and then had had a mastectomy. And luckily she was fine but she had to go through chemotherapy and all of that because it had become quite aggressive very quickly which helped me make a decision very quickly actually [laughs] about what was happening to me.

 

So I had the second operation and I came in and I recovered from that, and then two weeks later I went back in and was told that there were no clear margins and that I would have to have a mastectomy. And that was the way forward.

Tests to find out why Felicity was having breast pain led quickly to a diagnosis of DCIS.

It started with a constant, I was getting a constant ache in my left breast and that's quite interesting and I’ll come onto that later but it was just a constant ache, a very heavy dull ache. So when I took my bra off at night I would kind of feel it, a very deep ache. And I just ignored it because you do. And then I went to get a new bra fitted at a department store in [place name] and there was a big poster on the wall of the changing room that said, “If you have any of the following symptoms, you should go and get checked.” And one of them was constant breast pain. And that's what alerted me to go along and see if there was anything there.

 

I had in fact, before I had my second child, gone to the breast consultant for something similar and that kind of came to light later on, I'd forgotten about it. And I was told it was just hormonal and to take evening primrose oil. And then I had my second child and it had come, it reoccurred and then.

 

So I went to the doctor who gave me a breast examination, the local, my GP, and immediately referred me. But I was never sure if she actually found lumps or not but I assume she felt something that shouldn't have been there. And I didn't really think anything of it. I just took it all as a routine thing because I hadn't felt any lumps and I think what I understand now is that they only give you as much information as they have really. They don't give you any assumptions or thoughts that they might have on it. Which is fine [laughs]. And I went along to get a mammogram at the breast clinic. I was referred very, very quickly.

Not having a reconstruction was the right decision for Felicity because, after her mastectomy, she needed radiotherapy. She didn’t want any more surgery and was comfortable with her body image.

They were very, very keen that I had reconstruction. There wasn't a kind of, I felt afterwards that there was a real emphasis on reconstruction. “You're very young, you know, you shouldn't let this change your life and we can cut this muscle and take this off your stomach”, which on top of all the other things that were happening, it's quite a daunting thought. But it was a real, there was a real, not a push but, you know, “You're very young and this is a good thing”. But in [hospital name] in fact you can have reconstruction at any point in your life. So if I'd chosen to have it when I was seventy, so long as I was in good health. And I found that very difficult because I really, I wasn't very comfortable with it at all. I felt that it was just too much surgery in one go, it was a huge thing.

 

And I had a lot of support from friends, who had spoken to other people and so, yeah, that whole thing about whether to have reconstruction or not was a very big decision, a hard decision to make. But in the end I just wanted to get the whole operation out of the way and I just opted for a mastectomy. And I think that was definitely the right decision in the end because I had to go on then to have five weeks of radiotherapy.

 

And are you comfortable with it now? I mean, do you think you might go for reconstruction at some point or is this?

 

I don't think I'll go for reconstruction. I think, I can understand why many women do and I think the body image thing is an important one but I actually, I'm not sure having, I just feel that, you know, for me to have reconstruction I'd have to have this muscle cut and possibly some surgery across my belly and I just think you'd just end up with lots more scars and the risks of major surgery and I think I'm a coward [laughs].

Felicity found radiotherapy tiring, physically and emotionally, because she had two children to care for as well. She found radiotherapy impersonal because she was treated by different staff every time.

I was referred to [hospital name] and I went up there everyday for five weeks. But again I had a huge amount of support from my friends and from the breast care nurse. I don't know, it was OK. You know, I was treated very well and it was, I just made the journey every day and by the end of it I was pretty exhausted and emotionally I think rung out by the whole experience.

 

How long did that take, getting to [hospital name]?

 

It takes an hour and a quarter from here with two small children. And to look after, but I made sure, they were very, very good actually. They put my times at a time that fitted into my timetable. So they were very, very good that way.

 

And I think that for me when I went into the radiotherapy it became a bit more impersonal because every time I went in it was different people. And that's just, I’m not, it’s not a criticism because I was treated very well. But I truly believe that if you have even one person that you have a relationship with, it makes care, especially I think if you have to go through chemotherapy or. And maybe that happens but that was very important for me. And I think it’s probably important for everyone.

Felicity's close women friends gave her the emotional support she needed.

I had an extraordinary amount of support from my friends. Yeah, huge support. I've got a very, kind of, close core of friends who just, [friend’s name] being one of them I have to say, who really looked after me. A lot of support there. I think my husband found it very hard to deal with, but not at all in terms of my body image. I just think he's not very good at looking after people who are not coping. You know, so for him you've been diagnosed, they are going to cure you, you're not going to die. It’s fine, what's all the fuss about? So that was quite hard. But that's a personality thing. He just, you know, he's not great on that kind of emotional support, generally speaking. It’s not something he does very well. So that was very difficult. And I think without my friends it would have been really hard. But they were great. No, I had a really close core of good girlfriends, and their friends as well.

Felicity is happy using a prosthesis, though does sometimes feel lop-sided. She said she feels lucky because 'I didn't lose an arm, I just lost a breast'.

Actually I'm very comfortable with the prosthesis and it's not great. I do feel a bit lopsided sometimes and I, but I really, I don't think about it that much at all. The prosthesis is great, you know. I'm very comfortable with it. The scar, you know, I have, I mean it’s healed up fantastically. I consider myself to be very lucky. I have a friend who’s in the last stages of cancer and I think, “I didn't lose an arm, I just lost a breast”.