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Breast cancer – a personal story (video transcript)

Being diagnosed with breast cancer can be both emotionally and practically challenging. Listening to others who have experienced similar situations is often re-assuring and can be helpful for you, your loved ones or when preparing questions for your doctor or a specialist.

Summary

Tess is a married doctor with three young children. When Tess was diagnosed with breast cancer, aged 33, she also found out she was pregnant. She had a mastectomy, chemotherapy, tamoxifen and Herceptin. She later had a second mastectomy with immediate breast reconstruction, and had her ovaries removed. Tess was 38 years old at the time of this interview.

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Please note...

This interview has been sourced from healthtalk.org, award-winning research into patient experiences in conjunction with the Health Experience Research Group at Oxford University, UK.

healthdirect doesn't endorse any personal opinions expressed in the video, and we recommend you discuss any questions you have regarding unfamiliar terms or descriptions, as well as how this experience compares to the Australian health care system, with a health professional.

Video transcript

Not knowing whether she had cancer was a difficult and lonely time. Tests showed that the lump Tess had was cancerous and that she was also pregnant.

It was a funny holiday because it was sort of amazing and it felt very precious, but I was completely, it puts you in a completely different place where you’ve never really been before. Where you’re just worrying about death and dying, and illness and you’re having to kind of, it’s a very lonely place. Because you’re having to sort of talk to yourself about all the possible outcomes. And I think the really difficult thing of that period is just, is the uncertainty. Because actually when we came back to England and we went to the hospital, and when I found out, I actually felt better because it was, then I knew. I knew what was happening and I knew what we had to do. And then I had a kind of plan.

But the two weeks of uncertainty, even though we were having this wonderful sort of time together, and it felt that it was almost the most precious time we’ve ever had as a family, it was I think lonely. It was just very, it just felt very, I just felt really in a very alone place. I felt like I was completely sort of separate from everyone else with these sort of dark thoughts. And, you know, my husband was very good and very kind of caring. But I think you can’t kind of go there with anyone else really.

And so the actual finding out, I think I already knew in a way. So we went to see the doctor. And my Mum came with me because actually my husband had gone to start work in this job.

She called us in, and she was actually the same surgeon that had diagnosed my Mum. So she, I think her first words were, “I’ve got a terrible sense of déjà vu.” And, you know, I just started crying because it’s just, even though you know, you don’t know until someone says those words. And then it sort of, as I said, I think you feel better, you felt better. You feel kind of raw but better.

But then it was a sort of ripple effect from then on and, and the next few days were just so much to deal with, so much. And everyone wanted to phone you and when you’re not feeling ready to talk to people and it’s just, it’s just a lot. It’s a lot and, you know, obviously my husband wasn’t there. I had the two older children, and my period was a bit late, which I thought was just because I was sort of stressed and we’d been on holiday. But we had to do a pregnancy test because we had, that would really imply, that would really affect the treatment. And then I found out I was pregnant. So that was the same day as, you know, having the needle biopsy and the diagnosis.

And so it was just very, it was just a lot. I think I’ve never, you’ve never had to deal with so much information and implications in my life until then. And I was only 33. And I think that, I know, I mean obviously people get cancer a lot younger and I was old enough in some ways. I think it did, I had expected it to happen later I think. And my children were just babies, I think that’s what I was saying when the surgeon first told me, was that my children were just babies.

Tess had tests to find out if she had the BRCA1 and BRCA2 genes. It took a long time to get the results but the information was helpful.

It wasn’t for me because I already had cancer, so I suppose I wasn’t really concerned for me. It was more for my younger sister. And I think it was very difficult for her waiting for these results and not knowing really what the implications were. And for my children.

But I think it’s helpful if, I suppose I felt all information was helpful. Because part of me almost didn’t want to get the tests but I suppose you sort of think well all information is helpful. And if it meant that my sister could then be tested and know kind of more clearly what she should have in terms of screening, then that was definitely worth it. But it wasn’t a nice kind of experience.

And for any women who are thinking about the having the tests? What did they, what did they involve?

It’s just a blood test. But I think to be prepared for how long it’s going to take. Because I mean it’s months to years where I had it done. Maybe it’s different, but it’s just worth checking how long and what actually the real implications of the result are. Because it’s not like the other tests you have, which are quite immediate and you can kind of find, you know, you’re sort of talking like days or weeks. And then you can make a decision based on that. It does take a lot longer, and it’s a lot, and the results are a lot less clear cut I think.

So from the start of the tests to when you actually found out, how long was the whole process?

From the BRCA1, it was over a year definitely. Maybe I got BRCA, I think maybe I got BRCA1 back within months, and then BRCA2 took about a year. I might have that wrong, but it was definitely over a year.

Tess preferred to have a mastectomy rather than a lumpectomy. She felt relieved after surgery and said it felt as if something had been lifted from her and taken away.

I found out that the lump seemed to be not too big, but when I had the mammogram there was an area of calcification so they thought, having first of all thought I was going to have a lumpectomy, it then became a mastectomy. But actually psychologically I felt better with that. I think I felt that I would rather get rid of the whole breast. I didn’t like the idea of them having to monitor it and feel for lumps and, you know I didn’t, I was quite, again it was a moment when I felt much better; that I had, after the mastectomy, I felt quite relieved. I felt like something had been lifted from me and taken away from me. And this lump which I’d been living with and feeling, and even though I had had to persuade myself not to feel it or touch it even, because it was just, it would give me a kind of whole, it just felt horrible. I felt that when it was gone and my breast had gone it just felt so much better. And the doctors and the care I had was just, they were just brilliant.

So I had that I suppose in two weeks maybe after the first diagnosis. And then I had the lymph nodes biopsied at the same time and they all came back negative, so again that was a moment of just feeling hopeful that it didn’t all have to be negative.

Tess had a family history of breast cancer. Two years after her first mastectomy, she had a second one and breast reconstruction. She was happy with the surgery she had.

I’ve had a mastectomy and then I had actually another mastectomy and reconstruction a year when, about two years ago, which was again really I think brilliant for my kind of quality of life. And just feeling like a functional, I mean you know again its, but everyone’s very different.

And I think that it was a lot about getting rid of the other breast because there was, you know, because of my family history there were lots of genetic kind of queries. I had to have lots of possible genetic investigations, which were all, came back negative. But I think they still felt that I was at risk because of the early, the sort of early time I’d got breast cancer and my family history.

So I was quite keen to get rid of the other breast, and then the plastic surgeon said they could do some reconstruction at the same time and that was really, really good. And I then, I think they were amazing what they can do with what’s there.

It can be difficult having treatment and looking after a new baby. At first Tess was also breastfeeding with her healthy breast.

I think also the other thing which my doctor said, which is very helpful, was you know, “Even if it doesn’t pose any extra risk to you or the baby, it’s a lot. It’s going to be a lot and, after all this treatment, you might not want a new baby.” And I think that was really helpful because it is a lot. You almost forget that having a new baby, it feels like such a positive thing, but actually it is hard work and it is again, you know, a lonely existence in a way when the baby’s very small. Even if...

Did you have a quite a bit of support, were you off work?

Yeah. Yeah I was off work, but I think even so, you do forget that there’s a lot of work to having a baby. It’s not all just a bunch of flowers and I think that was, I think him having said that, it’s just as well it’s almost there’s bits of reality, because you start, it becomes a bit like a fantasy in a way that you’re going to kind of come out of this with a baby and life’s going to be all beautiful and you know fine again. And actually I think there’s sort of the moments of realising that there’s a reality of another little person to look after. And that’s quite tricky.

And even just things like only having one breast and the fact that people kept asking me, in the hospital they kept coming and saying, “How are your breasts?” And in the end I just said, “I’ve only got one breast.” And she, you know, she just said, I mean they weren’t meaning to be insensitive, but you just felt that was just something that they wouldn’t even think to sort of correct themselves.


The doctor assured Tess that it was safe for her to have chemotherapy while she was pregnant. She felt, though, that some people were judgemental about this. She later had a healthy baby girl.

The chemo was really not that bad. And to the point where I remember the last session, my sister came with me and we were watching a video and almost enjoying it, which sounds ridiculous. But it was just, I think I felt very supported and very loved through it, and it didn’t even make me feel that bad. I know that’s not the same for everyone. But I felt that it was very well managed and the side effects were very well managed.

Were you pregnant through the chemotherapy?

Just yeah, pregnant. But you can have certain sorts of chemo after 12 weeks pregnancy. So actually it didn’t really change the treatment I was going to have. And they said because they’ve dealt with, they had treated quite a few pregnant people, that actually they did find sometimes the people that were pregnant do better with chemo, no real reason why, but they don’t always feel so bad.

When I was having the chemo there was a lot of people that feel that they can make comments or judgements. And they don’t know the evidence. They don’t know that you’re, but people would say to me, “Why are your doctors letting you have chemo when you’re pregnant?” And they would be almost rude about it actually and almost sort of saying that I was being kind of crazy or putting my baby at risk. And I suppose that’s the only thing I would say is just to be strong to those kind of comments and attitudes because people do feel they have a right when you’re pregnant to...

Is that friends and er....?

Lots of different people. I mean people, other people who were having treatment in the chemo suite, you know that, I think people feel they have, there’s something about being pregnant that makes you a public property a little bit. And I think people feel that they can judge what you’re doing more readily than otherwise. But, you know, no-one’s going to ask to be in that position. No-one’s going to ask to have breast cancer when they’re pregnant. It’s just not something that anyone’s going to request, so I think just to be strong to sort of insensitivities.

Having a double mastectomy and her ovaries removed helped Tess feel that she was doing something to help herself in the future.

The two operations, both the mastectomy and then the oophorectomy, the taking the ovaries out, they felt very different because they felt prophylactic. You know I suppose I felt a little bit more in control, like I was doing something, I wasn’t just getting rid of disease, I was doing something kind of to help myself in the future. And so I felt, you know, I think that sort of feeling in control made me feel quite, it wasn’t so scary. And I guess inevitably it’s not so scary because you just feel like you’re just, you’re sort of dealing with possibility rather than actual certainty, having to have it done. So I think it, and again I felt for both those operations.

Tess had her ovaries removed in the morning and was out of hospital the same day. She found the procedure easy and straightforward. She took two weeks off work and was fine afterwards.

Having the ovaries out was just a laparoscopic surgery, so it was just done by a camera and it was yeah, it was done one morning. I was home, I was sort of sat in a bed that afternoon. They said I could go home at 3, but I said could I not wait until the children were in bed because I didn’t feel, I felt great but I didn’t feel strong enough to sort of put my children to bed. So actually my husband came to get me about 7.30. It was a beautiful sunny evening and I think that was the sort of a high point of my treatment that I felt it was, yeah it was very straightforward. And I didn’t have really very many side effects at all. And it felt very easy.

And how long did it take to be up and running, back to normal?

So I think I took two weeks off work, and that was fine. Because sort of, almost, just it was more to getting over the anaesthetic, and you did, do definitely have a sort of feeling very good for a few days after the anaesthetic, and then you slump. It’s sort of like someone’s sort of taken all the juice out of you and you’re just like, but I think a lot of that’s the anaesthetic. And the operation itself was, and I think it’s straightforward and the scars were just tiny. I had one on my belly button and one about half an inch long lower down. So it wasn’t , it didn’t seem, and I suppose when you’ve had quite a bit of messing around inside you, I didn’t feel very, it didn’t feel bad at all actually.

Tess was prescribed tamoxifen¹ for five years and given Herceptin² for a year after chemotherapy. She was happy to have any treatment that would help.

There was a long time working up to when I had to have this new drug Herceptin. And first of all the first test didn’t look like I had, and they sent it off to something called Fish, which then showed that it was HER-positive. So I think, you know, having thought that I’d just have the chemo, then I found that I had to have another year of treatment. But again, nothing felt bad that was going to help. And I was happy to sort of do anything. And also the first results that I had back was also that it was hormone sensitive, so I take tamoxifen. But I think that felt like that was a positive thing because I knew that it meant that it was more amenable to treatment.

Tess had no side effects with Herceptin. She describes the procedure and said she found it straightforward.

It was just a one trip to the chemo suite, and so putting a line in and then hooking you up. And I think it was a couple of hours just of a bag dripping in. But it was quite different from the other chemo because it didn’t, you knew you weren’t going to then feel all odd and have to go to bed for a few days. So it was literally just like going to the chemo suite, a few hours of a bag and then I had to have heart scans through it, so that was I suppose the only other complication. I had to have two heart scans while I was having it. Well...

Just to make sure everything?

Yeah, just to make sure everything was okay. But in terms of the actual Herceptin, didn’t have side effects for me, and I think that’s quite standard.

And so you were there for two hours?

Yeah.

Was there a nurse or with you, or you…?

Yeah, I tended to take a friend with me or a book or something. In fact a couple of times I took the baby with me because it was just sort of nice to have her there when she was very little. And I remember those times being quite peaceful, quite you know, you’re actually forced to, especially when you’ve got small children, you’re forced to sit still and relax really. So it wasn’t that bad.

Footnotes:

You can read more information about tamoxifen and trastuzumab in healthdirect's medicines section.

More information

Learn more about breast cancer.

Copyright: ©2013 University of Oxford. Used under licence from DIPEx. All rights reserved.

Last reviewed: September 2016

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