Penny - Interview 52

Age at interview: 47

Age at diagnosis: 37

Brief Outline: Penny was diagnosed with breast cancer in 2000, aged 37. She had a mastectomy, radiotherapy, tamoxifen and Arimidex. She also had her ovaries removed and has been clear of cancer for ten years.

Background: Penny is a married training development manager. Ethnic background/nationality: White British.

More about me...

Penny was diagnosed with breast cancer in 2000, aged 37, after finding a lump. She had a mastectomy shortly after diagnosis and further surgery to remove her ovaries. Penny said ‘As an extra precaution, because of it being oestrogen positive, they wanted to remove my ovaries as well. So straight away I just said, “Yes, just do whatever.” Now I was in a fortunate position. We don’t have children but we had already made our minds up that we weren’t having any children. So to lose my ovaries wasn’t a big thing, which I appreciate it would be to many people.’ Penny was also prescribed tamoxifen for five years and given radiotherapy.
 

Having her ovaries removed led Penny to have an early menopause, including hot flushes. She said it was difficult to tell whether she was having menopausal symptoms or whether these were side effects from taking tamoxifen. After five years on tamoxifen, Penny was prescribed Arimidex. At the time of interview, she had been taking Arimidex for almost five years and would find out at her next follow-up appointment whether she would be staying on or stopping it.  
 

Penny chose not to have breast reconstruction as she did not want a long operation and recovery. She was also unsure how happy she would be with the results. She wears a prosthesis and is happy with the range of mastectomy wear now available. She said that, compared to ten years ago, there is a lot more and better mastectomy wear than when she had her surgery.

 

Since recovery, Penny has been involved in a lot of breast cancer awareness raising, including fashion shows and photographs for a magazine about breast cancer.

 

Penny has re-evaluated her life since having breast cancer and, having worked very long hours for some time, now wanted to spend more time on the things she enjoyed. This included further study and saxophone lessons.

Penny praised the support she’d received from her breast care nurse, her husband and family.

Penny had tamoxifen for five years and then went onto Arimidex. She has been taking Arimidex for...

During the last ten years, and certainly during the first five years, I used to go to see the oncologist every six months, and then my consultant in six months, so there was two visits per year. And after year 5 when I finished the tamoxifen, I said, “What happens now?” And it was a case of, “Ooh, that’s it now.” And I suddenly thought, “Oh my goodness, my safety net’s disappeared.” And I went away and within a week I had a phone call from the oncologist and she said, “We’d like to see you.” And of course I went into panic mode thinking they’ve missed something.

Anyway the upshot of it was, some recent research had shown that ladies of my age who had had an oestrogen positive tumour, ovaries removed and early menopause, they recommended putting onto Arimidex for five years. Well at that time for two years. So, which is why I went onto Arimidex.

And then I didn’t see my consultant, sorry my oncologist, since then, I’ve come off from seeing her. But I have stayed seeing my consultant and they, it was, it’s been my choice and they said, “You don’t have to, but you can stay and come back yearly.” Which I have done so, just for my own peace of mind. And any updates on new medications and things like that, and I’m dealing with my consultant actually next week, and it will be, my Arimidex will be five years, because each time I went back it had been shown to stay on it for another year. And I am expecting him to say, “That’s it now. Ten years,”

Penny didn't know if the symptoms she had were because of the menopause or side effects of...

For tamoxifen I felt maybe quite lethargic. Because I was going through the menopause anyway, so I couldn’t say whether it was the menopause giving me the hot flushes or the tamoxifen. Or if I just had a double whammy, but I did have the hot flushes, and to the extent I still do. But it was explained to me that, because of my ovaries being surgically, obviously being removed, I was going to have a surgically induced menopause really. So it did come on very quickly. So I and also, what else? I sort of had achy bones, achy limbs as well, which caused me a bit of concern at one point. Which I had some tests done but everything was absolutely fine.

And then the Arimidex I think has been better for me personally. Yes, so hot flushes, but that’s the menopause. And also as part of the menopause you go through the vaginal dryness, and so I can’t really say whether it’s the Arimidex that’s caused it or because of my menopause. But overall I think I’ve been one of the luckier ones, that I haven’t had major side effects. I know I have got friends that get very bad headaches and suffer extremely badly and, I have to say, I can’t really think of anything that’s really, really bad. I think for me it’s more been the hot flushes and yeah your body, and weight gain.

When I was diagnosed I was a very small size 10, and now I’m more of a sort of a 14 top and a size 12 bottom. But it’s the tummy and the hips which are harder to move. And again that can be a side effect, but I think mine has been a combination of both. So it would be interesting to see if I come off the Arimidex if it, how I would feel after that.

And you’ll find out about that next week?

Next week. Yes. Yeah.

How would you feel about coming off the Arimidex?

It’s interesting isn’t it? Because about a couple of years ago I thought, when I thought I was going to be taken off it, I was still unsure because it was my safety net. But now I think I’ve been just thinking it through and working my way through to the fact that, at ten years, that’s a fantastic mile stone. And if anything was going to go wrong, it was going to go wrong before now. And I feel, and I think we don’t know if the Arimidex is doing me any good or whether it’s not. It could be doing me more harm because there’s nothing to say at the moment.

And so I’ve really sort of resigned myself now, that if I come off it that is really good news I think. And I hope that perhaps I might lose a little bit of weight. I don’t know. Maybe the hot flushes may not be as bad, I don’t know. Or I might not see any difference at all. But I was just very positive that here I am, and I’ve, yeah, I’ve worked myself through now that ten years, so it’s a bit like the milestone really.

Penny looked at her mastectomy scar with her husband when she was still in hospital.

The following morning, obviously they come round and they woke me up and the first thing they want you to do is up and about, which was fine. And the first thing I did was look down and I’d a, just a dressing going across here. And I just looked down and I thought, “Oh well that’s it.” And I think for me, because of being small busted, it wasn’t a huge, it wasn’t a, oh, I don’t really, I want to use the right words but it, I just thought “Well okay, there’s probably other people that perhaps it can affect a lot worse than I, than myself I think.” And I just looked at the dressing and thought right okay, that’s what I’ve got. There was a drain in as well which was, that was all fine. I got up and went in and had a shower and thought right okay, let’s get on with this now.

And at the time I got back into bed and had some breakfast and all the ward rounds and everything else. Visiting came, all my family came in. And I was great. We were chatting away. I was up sitting in a chair. I felt great, I had no pain. I just thought, “Right, that’s fine, let’s get on with it.” So that was on the Saturday and then, by the Sunday, they wanted to change the dressing. So I made sure my husband was there and the dressing was changed. So we both looked at the scarring together. Yes there was a scar and yes this was ten years ago, and I believe they do it differently now and I had a lot of stitches, but okay, you know it’s going to heal.

And then they let me out of hospital on the, oh I think I came out on the Tuesday.

Penny had a lot of support from her family. She showed them her mastectomy scar because she...

My family were fantastic. My Mum and Dad came and stayed. I’ve got a sister that lives down in, away from me, down in Hampshire and she was on the phone every day. And then when I came out of hospital on the Tuesday, whichever day, that following weekend on the Sunday, it was a beautiful day and I had a house full of people. All of my husband’s family were visiting. They came down for the day. My sister and her husband came and visited for the day. I have a cousin that lives like an hour away, she came and visited for the day. And of course I’m one of these people, because I like, my background is catering as well, so I’m there trying to say to Mum, right we need to do this, this and this. “No you’re not doing anything.” And that, and they were making me sit down. And I went, “Oh no,” because I said, “Oh no they’re coming to my house,” you know, “You can’t do it all.”

But they were all running around doing everything, and amazingly when they came in they were very, they were going to me, “Hang on a minute, is it the same person? You look so well.” And I said, “Yeah, do you want to see my scar?” And I was showing everybody my scar. I didn’t care. Male or female, “Do you want to see it?” I was on the face of it sensitive to that, but to me it was important that, “Look I’m, you know, here I am, I’m still the same person, nothing’s changed.”

Penny went on holiday shortly after having a mastectomy. She had to find out about mastectomy...

Then after that I had my holiday. I look back and wonder how I did it, but I did do it. And my Mum helped me pack. And that’s where things became, perhaps hit home a little bit more for me because suddenly I couldn’t wear my bikini. Well I could, you know who cares? But I had to think about this now. Summery tops, strappy tops, gosh what am I going to wear? And I didn’t really know much about mastectomy clothes then. And my husband had read an article about a local place to where I live that did mastectomy wear.

And so I rang them up and went over there, and I said, “Right, this is the situation.” And they were lovely, lovely, two lovely ladies. And they showed me lots of different bras, and ten years ago I have to say the bras weren’t the prettiest of bras, very thick straps and that. But it was to hold your prosthesis in. And at this stage I just had what they called a softie. So it wasn’t particularly brilliant, and they showed me some swimsuits and swimwear, and it was very expensive. I remember it being so expensive. And I’m thinking, “This is crazy, there’s many of us out there,” and they were charging all this money. “But what can I do? I have to go with it.”

So I bought I think a bra and a bikini I think it was, and anyway it was just to get me through my holiday. And I’ve gone off on my holiday and had a great time.

Penny feels that, compared to ten years ago, there is a lot more and better mastectomy wear than...

When I look back, at the time there was no pretty underwear. There was no lovely strappy tops, things weren’t pocketed, and you had to really think about the cut of your clothes. And I think for the younger lady in her twenties, and I certainly felt this being at thirty seven, if I put a t-shirt on or a V t-shirt, I had to think about when I leant forward because of the prosthesis in the bra, the weight pushed your forward so all you could see was this hollow. And it was being able to wear things that didn’t happen like that. So you became, you started wearing things underneath clothes so you got like a little lace bit showing, which now you can get quite a lot of, and a lot of the mastectomy bras now have the lace bit put in. Which is brilliant but at the time you didn’t have this.

And evening wear, oh a nightmare for evening wear. To find a really lovely black dress that you could wear, no difficult. And not so much now because I think, because the underwear now is complementing what you can get. So you can get halter neck bras and things.

Penny's husband massages her mastectomy scar almost every night. Sex has changed because she had...

My husband was with me all the way through. Now I have spoken to ladies who’ve said “It’s been really difficult. My husband doesn’t really want to talk about it, he doesn’t want to look at the scar”, “My husband’s a boob man. I can’t show him the scar, I go and get undressed and put my pyjamas or my nightdress on before he comes to bed.”

Now I’m somebody I don’t actually wear any clothing in bed and I still don’t, and that has been the same since my mastectomy, apart from when I had the dressings on and everything. You know we were obviously waiting for it to heal. And for me, one of the things my husband always does every single night, apart from probably if we’re on holiday or perhaps it’s a very late night, I use aloe vera gel. And from the day I’ve had this, my husband massages this gel into my scar tissue, my mastectomy scar, all around under my arm and to my back, because I’ve shown how to keep the fluid moving to stop lymphodema. And that is so important to me, so my husband touches that scar all the time.

Now to me, I think the most important thing is make sure, when you first have those dressing taken off, that he, or your partner, is with you to see it at the first stage.

Because, at the end of the day, you’re still the same person, you’ve still got your same personality. And talk. I think the most important thing for me is to talk to each other.

And from a, you know, from a sexual point of view, yes our sex life has changed. But I think a lot of that has been down to me being menopausal as well, hot flushes, “Oh gosh, I’m all hot.” Yes, I’ve gone through the vaginal dryness. However, it’s so important that you discuss those things and talk to your doctor. Because there are so many things now to assist and not to be frightened to go and ask.

Penny now spends more time on the things she enjoys. She did some further study and has saxophone...

When I was working part time, that was the time I thought it’s time to do something for me. And I’d always wanted to do my qualification in personnel, so I actually went back to college and I did the first year doing just a foundation course, to see how well I could study again. Really enjoyed it. And then took on a three year course. Always had the ambition to play the saxophone. And my brother in law, who is a bit of a, likes music and plays guitar and things, he got me a saxophone for my birthday, which was lovely. So I’ve been playing for the last three years and having lessons. So that’s great. Did all that, did my qualifications and within, I worked with my friend for basically about eighteen months and then I now work for a local authority where I’ve gone back full time as a trainee manager, which I’ve been at for seven years now. And when I look back I think, “Crumbs,” you know, “Where’s the time gone?”

During this time I’ve done other things as well, where I’ve, the two ladies that run this local business with the mastectomy wear approached me within the early days, within the first eighteen months, to ask if I could help them out at all, working for them. Which I did, and I didn’t do it for any payment, it was just to be there to help out. But also they wanted to do a little brochure on their website, so myself along with this friend I met and three other ladies, we did lots of photographs wearing different things. And we went off to a hotel and there was a swimming pool and that. So we made our name in a brochure and we were on the website, so that was good.

But for me that was really important because you see a lot of ladies and female models and they look absolutely gorgeous, and when they’re modelling mastectomy wear, I’m sorry, but you don’t get the true picture of how it could perhaps really look. And I think you need to see people that have gone through it, that can actually show you, “Look here I am,” and “I feel great in this.”

So I did that for the local company and then I did a couple of fashion shows for them, which was for the couple of, I think it was breast awareness groups that they knew about.

And then there’s another  magazine which is called , some people say Amoena, some call it Amuna, which is a fantastic magazine and you can, there is a website and they do two  magazines a year which comes out and has everybody’s experiences. So you can write in. And the articles are so informative about breast cancer, medications, treatments, it’s brilliant. And they also, in link to that, they have a brochure on their swimwear and bras and mastectomy wear. And I wrote to them or e-mailed them and just said , “If ever you want anybody to do anything I’m really happy, I’d love to be involved. And it’s my way of giving something back.”

Penny advises women to ask questions, take someone with you to appointments and not to feel hurried.

Ask your questions. When you go for your check ups, always have somebody with you, whether it would be a parent, your partner, your best mate. And the reason I say that is because when you go for those check-ups, you don’t actually hear everything that’s being said to you. You’ll only hear what you want to hear.

And before you go write all your questions down. And I used to have quite a lot of questions and, quite often by the time I’d gone in, the consultants are very good because obviously they’re very knowledgeable and very skilled. And the way they talk to you, they’re answering all your questions. But there might be just that one that you need an answer to. And for me is to have that person with you to make sure those questions get answered.

And also don’t feel as though you’re being hurried. We’re all a patient. And yes, appointments are very tight. And don’t feel as though you’re being a nuisance either. Because I remember, because I was only 37 and when I was on my ward I was, the hospital I was in is no longer there, they’ve pulled it down and there’s a brand new hospital now. And I was on a ward of about 20 other ladies who had all different conditions. It wasn’t just cancer. And some of those ladies were very, very elderly. And I was thankfully was put down one end of the ward. And I felt all those other people needed more care than I did. And when I look back I think I was still the patient as well.

So don’t be frightened to ask, they’re there to care for you. Write your questions down. Take somebody with you because there is sometimes a lot of information that you, at the time, you walk away and think, “Oh don’t know what they said, what do they mean by it?” And then when you come away, if you’ve got any uncertainties, ring the breast care nurse. Because that’s what they’re there for. They are there to support you. Don’t be frightened to ring them.

And I found with mine, which was something I found, that I had to go for a mammogram on my other boob. First of all I was going yearly for the first five years. And now I go every two years. And I seemed to be always waiting for results, but I felt oh I don’t want to be a nuisance and phone up. And I’ve since found out, my breast care nurse, she said, “If you just give me a ring,” she said, “I can actually look up the details and tell you if you’ve got any, if there’s anything you know you need to know. And I can get hold of the consultant to chase things up for you.”  So they’re there, you know, so.

And finally I think use people, not use, but if you’ve got other ladies around you of the same age, get to know them and share your thoughts. Because that’s what I did and we’ve had some great laughs. We have some great times out. We take the mickey out of each other and that’s what it’s about. You know, we can look back, and yes it was extremely serious, but now when we meet up we hardly talk about it.

Penny chose to have her ovaries removed to reduce her chances of getting breast cancer again. She...

He [doctor] said my treatments would be radiotherapy and I’d be put onto tamoxifen for five years. But that’s all he could really tell me, oh but the oncologist really explained more to be about how that was all going to work. He said, but in addition to that, as an extra precaution because of it being oestrogen positive they wanted to remove my ovaries as well. So straightaway I just said, “Yeah, just do whatever.”  Now I was in a fortunate position, we don’t have children but we had already made our minds up that we weren’t having any children. So to lose my ovaries wasn’t a big thing, which I appreciate it would be too many people.

So I said, “Okay, when will this happen?” So they said, “We’ll be having you back in a week on Monday.” I went, “Oh, okay.” I said, “Well on the Friday of that week,” which was the end of September, I said, “I’m due to go on holiday to Tenerife for two weeks,” and I said, “I can go can’t I?” And he said, “There’s absolutely no reason why you’re not able to go. I said, “Well but if you’re taking my ovaries out, am I going to have stitches? And I’ve got to come back?” And he said, “No.” He said, “Just make sure when you come in, remind the consultant and the doctor that we’re not to stitch you,” he said, “Because it’ll be done through keyhole anyway, and you’re going on holiday.” “Okay.”

Penny described what happened when she went to hospital to have her ovaries removed. She felt a...

I was asked to go in in the morning to have the ovaries removed. And just went in, and my husband came in with me and sat with me. And they told me I was going to be going down to theatre in the afternoon, which you think, through hanging around. And they explained that they would just be making an incision below my belly button and then sort of one either side, just by my hip bones so to speak. And they would put a camera in and then they would be removing them in whatever way they do through the keyhole. And they said afterwards you may or may not have a drain in, it all depends what was, depending on your surgeon as well I think. And you will, might have some discomfort. But it won’t last anyway, and should be out either on the same day or the following day.

But because I didn’t go down till late afternoon as it turned out, by the time I came back from theatre it was about six or seven o’clock in the evening. And I remember I came to pretty quickly and, nothing like the mastectomy. Came through very quickly. I do remember being in the recovery room and as I came, I can remember them bringing me round and they said, “Oh how do you feel?” And I was in some discomfort. And I can remember the nurse going off and getting me some pain relief.

Anyway I was back on the ward and my parents came to visit, as did my husband. And anyway I can remember just laying there, but every time I moved there was a lot of discomfort. And it was just like a really, really, really bad tummy ache and period pains really. And I just thought, “Oh gosh, Oh gosh, how long is this going to last for?” And the nurse came over and she said, “Are you okay?” And I said, “I am in some discomfort.” And because they had already given me some pain relief from theatre, she said the only thing they could do was give me like a, I can never say the word, oh not depositary. I can’t say the word, oh, but it’d be, it’d be inserted into, if you like your back passage. I went, “No thank you. I’ll deal with the pain [laughs]. I’m fine thank you.” And I can just remember laughing, everybody was just laughing at me.

I can remember then when every, after visiting, and trying to move and I did have a drain in as well. And I thought, “Oh great.” But okay it was for a reason. Then I can remember the nurse coming round and saying you know, “Once you’re up and about walking, we’ve got to get you walking. So tomorrow we can get you home.” That was the cue for me. “Right, what do you want me to do?”

And then my legs weren’t you know, anyway, it absolutely killed me to get, and I put my legs on the side of the bed and got up and walked. Walked around and got back into bed. And then I can remember during the night, I needed to go down and use the bathroom. So I called the nurse over to say I needed to go up to the bathroom, so she said, “Oh,” she said, “We’ll get you a bedpan if you wish?” “No thank you, I’ll walk.” Because I thought the more I walk, oh, and I shuffled my way along, and anyway and made my way up there and made my way back.

And in the morning they came round and thankfully I’d done that because, when they did the ward round, they said that I had got up during the night, and I’d walked. And so they were really pleased about that. My drain was brilliant; there was hardly anything in that. So yeah, I could go home that afternoon.

So later they phoned my husband up so they could bring me some clothes. Because that was the other thing, my tummy was very extended and very sore. And so I went in stupidly in a pair of jeans, and I had to come out in a more of a smocky type dress. And that was great, because it was a dress of my Mum’s that’s she’d