Gillian - Interview 4

Age at interview: 52

Age at diagnosis: 50

Brief Outline:

Gillian was diagnosed with high-grade DCIS in 2006, aged 50, a year after her first routine mammogram. She had two breast conserving operations and, later, a mastectomy.

Background:

Gillian is a married housewife with three adult children Ethnic background / nationality' White British

More about me...

Gillian re-wrote this section and talks about her experiences in her own words.

 

Gillian was invited for her first routine mammogram in 2005, aged 49. She was recalled shortly afterwards. This was a big shock to her. She had no breast lump or symptoms and thought nothing was wrong and that it was just going to be a routine check up. The test detected areas of calcification and she was told that this could take up to twelve years to develop into anything but they would like to do a needle biopsy. Gillian was not very worried after being told it could take that long to develop and was very concerned regarding how painful a biopsy might be. She was told some find it painful and some don’t. It was then suggested that she come back in a year’s time to have another mammogram but that they didn’t need to see her again before that unless she was in any way concerned or worried herself.

 

A year later, Gillian had another mammogram and was told there were some further changes and the radiologist said she would need an operation regardless of what the biopsy revealed. She was diagnosed with high-grade DCIS and told that she would need a wide local excision. She was extremely shocked. After the first operation she was told the doctors were concerned she didn’t have clear margins and she was told she would need to decide whether to have more conservation surgery or a mastectomy. This was an extremely difficult decision to make and Gillian would have liked to have been able to talk with a health professional as soon as possible to have the pros and cons of each option in more detail.

 

Gillian decided to have further conservation surgery but, when she discussed this with her consultant and the cosmetic result after this surgery, she decided to have a mastectomy. Gillian decided not to have breast reconstruction because she ‘wasn’t very happy about having a foreign part in my body. I wasn’t very keen to have muscle cut and moved within my body’. Gillian’s first operation was in August, the second one in September and the third at the end of October.

 

Before having the mastectomy, Gillian asked her GP if she could have some counselling to help her prepare herself for losing a breast. Because of a long waiting list, she was unable to have counselling before surgery. After the mastectomy, Gillian recovered well physically and was playing tennis again six weeks later. Emotionally, however, she really wanted to talk to another woman who had been through something similar. The mastectomy felt like a bereavement and Gillian felt depressed. She found it difficult to cope with day-to-day life and was prescribed anti-depressants by her GP, but would have preferred counselling. She didn’t take the anti-depressants, though was struggling to eat and sleep and still wanted to talk to other women who’d had mastectomies. Over a year after her surgery, Gillian received some counselling, which she found extremely helpful. Joining a local support group and talking to other women who had been through something similar was also very supportive.

 

With hindsight, Gillian said she wished she’d had the biopsy she was offered at the very first recall appointment, although she is not sure what the outcome of it would have been as the mammogram at the time was indeterminate and there was obviously a significant change noticed when the mammogram was done a year later.

 

At the moment, she has two-yearly mammograms. 

 

Gillian was interviewed for the Healthtalkonline website in 2008.

Gillian was with her husband when she was told she had DCIS. She was shocked, scared and, later, tearful. She found it hard to talk to anyone and felt short-tempered.

Fortunately my husband was with me for this mammogram. All the mammograms I had at the hospital he has been with me and a great support. I was very shocked, very shocked when they said I was going to need treatment. I was very, not at the time while I was there with the radiographer, but later on I was very tearful. I couldn’t stay in the house sometimes, I found I was just too worried and anxious and I just needed to go out and just walk around the estate that we were on. I didn’t really feel I could talk to anyone about it and I didn’t really want to worry anyone or bother anyone with it. So the only one I really talked to was my husband. Later on I talked to a friend.

 

…At the time I think it was very scary, at the actual time. You could just go shopping in Tesco’s and you’d just, it would come to you, “I’ve got cancer, I’ve got cancer’. It would just, you know, you’re just thinking everything’s going on as normal but you, things have changed for you. And you think, ‘Oh, I’ve got cancer.’ You know, you’re in Tesco’s and, “I’ve got cancer.” You know, ‘I’ve got cancer’. And I was quite snappy with my husband, you know, as well, because I was so frightened and scared. It was a difficult time.

Gillian felt losing her breast was like a bereavement. She felt anger, sadness and depression. Eventually, she had some counselling.

I’ve had lots of emotions I think with having had my breast removed. I’ve discovered that it is like a bereavement, and that is the nearest thing I can describe it to. Yes you’ve not lost a person. But you have lost a part of yourself and it’s a part of yourself that you’ll never have back. And it is an important part, I feel, to a woman to lose because it is part of being a woman or at least a lot of women do feel that. Some probably don’t. But I did feel that. And I did feel that my body didn’t look as nice as it was before. It did matter to me dreadfully. But I decided it was important that I had the operation. And it would prolong my life I felt to have the operation and that meant I could spend my time with my family and my friends. And that was important.

 

Like a bereavement you go through various stages. I suppose anger is probably one as to why it’s happened to you and how you’d like to have your breast back please. But no way is that happening. I don’t think I really let the anger out because I’m someone who feels it’s not right to scream and shout and make a fuss. But there were times when I was alone and I did just quietly punch a pillow [laughs]. But I didn’t actually express great anger. Inside I felt very sad. I think more than anything I’ve been sad and very down about the fact that I’ve lost my breast. And it was also sudden as well, unexpected. And I got very down. And because I got down, I then found I couldn’t really cope with day-to-day things. And I don’t think I felt particularly happy. I did what I could but normally I would help everybody. I’d run around after everyone. I’m very organised. And I just wasn’t feeling myself. Wasn’t able to do all the things I normally did. And struggled and struggled alone with that.

 

Eventually I went to the doctor. So I had the operation for the mastectomy in October. In the March I went along to the doctor and explained that I was feeling very down. And really I was hoping, and I may not perhaps been strong enough in saying this to my doctor, but I would’ve liked counselling. I really would’ve liked some counselling. Unfortunately I think my doctor felt she’d already offered counselling because I’d asked for counselling before the mastectomy. And because I’d then cancelled that, obviously because it wasn’t in time, I think therefore there was a bit of misunderstanding there. I really wanted counselling.

 

…It is quite a big thing to go through I think. And, emotionally, I don’t think I realised how big emotionally it was going to be. I was expecting to be unhappy about it, definitely, absolutely, definitely. But it’s taken me a year to get over it and if you manage to get over it in less than a year, I take my hat off to you.

 

I’ve also heard that cancer and mastectomy is different to other cancers emotionally I mean, obviously there’s an emotion if you’re told that you may not have long to live or it’s very aggressive and whatever. But to lose your breast is quite a big deal to me. You know. To lose the way you’ve looked, even though you’re getting older, when you get old, you gradually get old. When you lose your breast it happens over night. And it’s a big deal. It’s a big deal. But you can get through it.

Gillian didn't want reconstructive surgery for several reasons. She wanted to be as strong and healthy as possible and felt more surgery could cause other problems.

You can have reconstruction and I decided not to go for reconstruction. And my reasons for that, I’d seen what reconstruction looked like. And while others might be very happy with them and yes it does give you a breast form that’s still within your body, I wasn’t very happy about a) having a foreign part in my body. I wasn’t very keen to have a muscle cut and moved within my body. So although it would be nice to have some cleavage and to be able to wear the lower, the clothes that have lower necklines, I felt that was too big a compromise or too big … I can’t think of the word [laughs]. Just too, too big a price to pay really. I felt it was best to keep my body healthy and in as best working order as possible. My understanding which, you know I’m not a doctor, I don’t know if this is correct. But my understanding is that you possibly might need further surgery in later years. And as I’m already in my fifties I didn’t really think the surgery in my sixties or seventies, just altering something prosthetic, was worthwhile for me.

Gillian hadn't had any symptoms and was reassured by the doctor that DCIS could take a long time to develop.

I had further mammograms and they saw a few speckles on the mammogram. Very small, very tiny area. And it was indeterminate as to what was there. They did think of doing a needle biopsy. However, I was a little uncertain about having that done as a) I didn’t feel anything was wrong with having had no symptoms and no lump and they did reassure me that it could just be calcifications and that it could take up to 12 years to develop into something. They did, however, decide to put me on early recall so a year later was when they called me back. They did say if I had any concerns in the meantime I could contact them if I was at all worried. But they didn’t expect to see any change for at least a year.

 

I went back the following year for a mammogram to the hospital again and they did further mammograms. I also got called back in again the same, while I was there for them to try and get the area more clearly that they wanted. So they did another one. I then went in to see the radiologist and she told me straight away that I would need an operation and whatever happened I was having an operation because there were changes.

And you mentioned before we started the interview, that you had a mammogram …and they called you a year later. Did you say that, in a way, you had, you wished you hadn’t waited for that?

Yes. In retrospect I think I should’ve had the needle biopsy, I think they call it. I think I should’ve had that straightaway, definitely.

Was it offered or …

It was offered. But yes I went for my first mammogram and, well it was the second mammogram because it was, the first one was at the unit. And then I was recalled at the same time, at that time.

So you were recalled after your very first mammogram?

Yes.

At the age of….

I was called from the first mammogram, 49 actually. I just was a few months short of 50 when I was called for my first mammogram, which showed something. I then went and had another mammogram within a few weeks. And that was when they saw a few speckles of the DCIS.

And at that point?

And at that point they did say, “Oh we would like a needle biopsy.” I was, I think I was concerned more than anything, well about the pain of that. I was concerned it was going to be painful. So I wasn’t very keen. I was also obviously quite shocked that they’d found something with not having had any symptoms. And I was quite reassured that it took up to twelve years really for DCIS to sort of develop, for the calcifications to develop sorry. So I thought I had a few years was how I was thinking, to think about it, was what I thought. And I had no lump whatsoever.

And how did you feel …

No cyst nothing.

Nothing. How did you feel then, being told then that it could take up to twelve years, was it still worrying?

I felt reassured.

Reassured.

No I felt really reassured by that. If anyone, but if someone had said to me, which I now learn later on, I learned that DCIS can, when it’s high grade, which is what I had, that can take, that can develop within five years. Had they told me that, I would’ve definitely have had the needle biopsy then. 

Gillian would have liked more information about the surgical options from a health professional. After talking to the doctor about how another excision would look, she opted for a mastectomy.

I went into hospital I think within two weeks to have this operation. I had the operation and then went back to see the consultant afterwards. And they like to have clear margins around the area that they have removed. Unfortunately, they found that the area wasn’t clear. The margin that they would like to see clear wasn’t. So I would have to go in and have another operation. They felt it still possible to just take a small piece of breast tissue.

 

Again I was booked in and that was about a month, the following month, for another operation. I went in and I had that operation. And again I went to see the consultant and again they found that the margins weren’t clear. They told me I needed to go away and decide what I would like them to do next. I could either have another operation to try and get clear margins or I could have a mastectomy. And it was up to me what I decided.

 

They gave me a leaflet and I went away with this leaflet to read up on it all. And they said when I’d decided I was to come back and let them know. Now this I found very difficult. First of all, DCIS as I understand it is not invasive cancer, or at least the stage mine was at was not invasive cancer. It was ductal carcinoma in situ and it was high grade but it had not become invasive as far as they were aware. I understand that high grade DCIS starts out as high grade DCIS and continues as high grade DCIS.

 

Anyway, I went away and read the leaflets and looked on the internet, tried to just find any information I could. I already had a book that I’d picked up myself from a shop, which just outlined all sorts of cancer, to just give me information, basic information, that was understandable to the layman [laughs].

 

It was a very difficult time. It was almost the worst time I would say because it was making a decision and you were choosing something that you didn’t really want to choose because none of the options were really what you wanted at all. If I’d just had another piece of the breast removed I would have radiotherapy, so that was another consideration that I had to think about. I was also told with regard to DCIS that radiotherapy was not as effective on DCIS as it is on actual cancer, but at a later date. So that again was a consideration. I read up on the radiation aspects of things. Fortunately it was my right breast so the organs in that areas were not as important in a way. It wasn't near the heart or anything where I’d had the radiation. So I thoroughly looked into it and all the aspects of that.

 

I found it very, very difficult not to have somebody to talk to or have somebody at that point explain the options to me. I was told I could see the breast care nurse. The breast care nurse I wanted to see was actually on holiday away at that time. So I had to wait for her to come back. And that gave me longer to think about it and worry about it as well.

 

I did request to see the breast care nurse and she did explain the operations to me. I asked her to show me a picture of a mastectomy and what it looked like because I had no idea what a mastectomy looked like. Anyway I talked it through with my husband. And we decided that we would try for the extra little piece of breast tissue to be removed. So I went, made an appointment to see the consultant which was what I had been told to do. I went to see the consultant and discuss it with her, that I just wanted a small piece of breast tissue removed. She examined me and had a look to see how the breast was doing at this time because obviously having surgery you have some bruising, swelling. Some of the swelling’s gone down. But it’s not quite gone as much as it would do.

 

So she had a look at the breast to see what the situation was. I

Gillian found the mammogram uncomfortable. She hadn't had any symptoms and didn't expect to be recalled.

I was called for a routine mammogram about two years ago and I went along to a breast screening unit outside our local shopping centre and I didn’t know what to expect because I’d never had a mammogram before and no-one had told me what to expect either. I found it quite, slightly painful but uncomfortable more than painful and I didn’t expect anything to appear on the mammogram or to hear anything further as regards to them finding something. I had no symptoms, no pain in my breasts or anything. No lumps, nothing.

Gilllian came home with a drain, which was later removed. A district nurse visited her for a week to check her wound. She was surprised to be in no pain after surgery.

I went home and I had someone keep an eye on my dressing. I may have had some internal sort of stitching but I didn’t have any external stitches. I just had like a sticky see through plaster, I suppose you call it, over the top of the wound. I went home with a drain. I had one drain in. I was in the hospital on the Friday and I actually went home Saturday morning. So it wasn’t very long in hospital at all. And for up to about a week, I had a district nurse visit, just to keep on eye. And eventually the drain was removed. I would say it was slightly uncomfortable, the drain. It was a tube that came from the area where you’d had the operation, just under your arm. And you had a bottle, the tube went to bottle and that was just to get excess sort of fluid from the area.

 

I didn’t find the mastectomy painful particularly, if at all really. I was very surprised at that. I thought I was going to be in pain for quite a while, having had part of my body removed. But to be honest, I can honestly say I was hardly in pain at all. They gave painkillers obviously straightaway as soon as the surgery was finished. They gave me painkillers to take home. I just took one or two of those. But I sort of phoned the breast care nurse up and said, “Do I need to take these?” And they said, “Well try without and see what happens.” And I found that I wasn’t in any pain at all. So I don’t think I had more than four all together after the mastectomy. So I just didn’t find that painful, thank

goodness.

Gillian now has to think a bit more about buying bras and what she wears. She has some good prostheses and describes how she looks after them.

The side that’s not so easy to deal with I guess is the way you’ve been left, the way your body’s been left. That I found hard to deal with. You have to be a little bit more careful with your clothes. I go to a specialist shop for my bras. I have a prosthesis that you can put in the bra and also a stick on prosthesis. And both I find very good to be honest, very good. I’ve been swimming with the stick on prosthesis on, with a water one you can wear in water. Again I’ve got swimming costumes from the specialist shop. And they have a nice choice there. So you just have to go and get your bras from somewhere different. And your swimming costumes from somewhere different. On the plus side, they are actually more fitted to your bust size. So that’s a bonus.

 

… I still like to look good…. I just like to, you know, make an effort. It is a bit more of an effort, as I say, because you just have to but your prosthesis in. And also while you’re going through this, having had the mastectomy, once you get your prosthesis, you are reminded every time you get up in the morning, you have to put something on. You know, you have to put a special bra on, you have to put this special thing in, a prosthesis that isn’t a stick on, you have to wash it, you know, just as if it was a part of you. You’ve still got to wash it and put it on and dry it. If you go anywhere you have to go with it, you’ve got to make sure you’ve got it with you to wear. And you need to the box to put it in to help it keep its shape.

 

I’ve got the stick on prosthesis as well. Again you need to wash that and put it on in the morning. But in the evening you take it off. It’s got a sticky back to it and you put a special cleaner on it. And with a scrubbing brush you scrub the sticky part and then you rinse it. You mustn’t let it, you know, it’s got to be a sort of tepid water. And then you dry it, you either leave it to dry naturally or use a hair dryer on a low setting to dry it. So it’s quite involved what you have to go through with, but you get into a routine with it. But it’s something I do every night. I just take my breast off and wash it. And put it carefully in the box and cover over the top where it’s sticky to keep it clean.