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Patient Perspectives: Caroline Presho – Director of BRCA Umbrella

Caroline Presho is a mother, motivational speaker and Director of the online platform, BRCA Umbrella. After testing positive for a BRCA2 mutation, Presho decided to opt for preventative surgery. Since her diagnosis, Presho has been an active campaigner and advocate  raising awareness and encouraging both men and women to open up about their diagnosis.

Please note the transcript has been edited for brevity and clarity.

FLG: Hello, everyone, and hello, Caroline, thank you so much for joining me today for the latest Patient Perspectives as we take a look at the impact that genomics is having within patient lives. Today, we are joined by a patient advocate, Caroline. So, if you could just introduce yourself and tell us a little bit about what you do as well.

Caroline: So, I’m Caroline Presho, I’m 47 years old, and I carry a BRCA2 mutation.

FLG: When was the first time that you became aware that cancer ran in your family?

Caroline: I think I always knew that there were a lot of cases of cancer in my family. But I wasn’t aware of the genetic link till about 2002, when my paternal aunt was diagnosed with ovarian cancer. And her mother, my paternal grandmother who I’ve never met, was diagnosed with breast cancer at 48 and passed away at 58. I think I was aware there were some other aunts on that side who’d had breast cancer, and my maternal aunts had had breast cancer as well. So, I was always aware there was a lot of cancer in my family.

FLG: Your aunt encouraged you to get testing. What were your thoughts at the time and what made you then eventually want to get tested?

Caroline: At the time she told us about it, I didn’t know anything about BRCA mutations; I’d never heard of them. It was before Angelina Jolie came out and spoke about it. So basically, I ignored what she said because I didn’t understand what it meant. And she was very, very persistent, because she understood what having this knowledge meant. So, she would send letters and she would phone and say, ‘Have you been tested? Have you taken this further?’ And it was in 2006, when I thought, ‘If she’s this insistent, I really ought to do something about it.’ So that’s when I went to my GP with the letter from the Royal Marsden asking for some genetic testing.

FLG: Would you able to discuss the process you went through to get testing?

Caroline: So, I went to the GP and he basically, to cut a long story short, decided that I wouldn’t carry a mutation and told me to go home and stop worrying about it. So, I did because I trusted him, being a GP. And it wasn’t until 2007 when my auntie died from complications due to the ovarian cancer, and then my dad died 10 days later. It was a bit after that that we found out my dad also carried the BRCA mutation. He’d gone off and had a testing in secret. So, the consultant who he went to see said that my two half-sisters and my full sister and I had to get tested. So, we went to see a consultant geneticist at Great Ormond Street Hospital, and he explained to us what carrying a BRCA mutation meant. And I still don’t think it sunk in what it really meant, all I could hear was lots of numbers, and 85% lifetime chance of breast cancer, and this percentage chance of ovarian cancer and pancreatic cancer. And if you’re a man, male breast cancer and prostate cancer, and you know, you just hear a lot of words and numbers.

And I just thought, ‘Well, it’s a tiny little vial of blood. How is that going to change my life?’ So, my blood was taken. Six weeks later, my sister and I were called back. We went together and that’s when we were getting our results. We were asked, ‘Do you want to know?’, we said, ‘Yes.’ And he went through the same percentages, and we still didn’t really understand what it meant to us. And then he gave us the news that we both tested positive for the same BRCA mutation that my dad and his sister carried, which had obviously come from their mother.

FLG: How did you feel at that moment in time realising you had the mutation that had affected other family members?

Caroline: I don’t think it sunk in at that point. I really didn’t understand quite how it could impact me. There was no information in the news; it wasn’t like it is now. And they also said to me at that time that they didn’t start screening till you were 35. So that meant no breast screening, even though I was told I had an 85% lifetime chance of developing breast cancer. It was, ‘Well, you’re only 33 at the moment, so come back when you’re 35.’ I had three very small children, so it was quite easy to immerse myself in babies and all of that kind of thing and ignore it till I was 35. And it was at that point when I think I started to panic, and my mum was really concerned and said, ‘You know, you need to go and start screening for this.’ But I still don’t think anybody understood the magnitude of what getting a positive BRCA test is.

FLG: How have you come to terms with your diagnosis over the years? How has it affected your attitude towards life?

Caroline: It became very real when I found other BRCA mutation carriers and realised the percentage of them who had gone on to develop cancer. And you’re pushed into this world of being a cancer patient when you’re not a cancer patient. So, you’re sent off with screening, the same screening that somebody gets when they find a lump in their breast. So, you have your mammogram, your MRI, and you’re waiting for results like people who have cancer are waiting for results. It’s a really scary world to be in, because you’re not ill but you have this terrible fear in your brain that you are going to be ill and that you’re going to die. It’s really difficult to manage, mentally, I would say. It made me feel very, very vulnerable. And I found that lots of people didn’t really understand my feeling of vulnerability and my fear, because they’d say, ‘Well, there’s nothing wrong with you, why are you panicking? You haven’t got cancer.’ And so, it made me quite fearful. And you start to second guess your body and what’s going on, and symptoms and lumps and bumps and things. So, it’s difficult to deal with.

FLG: What support have you received, not just from your family, but from healthcare professionals?

Caroline: When you get your test results, you are supposed to have genetic counselling, but I didn’t get any. The only information I got from medical professionals was when I went along and had a blood test and then got the results. And that was, to me, lots of percentages, and not really any emotional support. And when I had my risk-reducing mastectomies, I saw a psychologist. I didn’t really feel that that helped me very much, because by that time, I’d immersed myself in the BRCA world and found out the information I needed, spoken to peers. And I felt like I was being asked questions that I couldn’t answer, like, ‘How would you feel if you go into a changing room when you’ve had your mastectomy?’ I don’t know. So, there wasn’t really any support there. Now, it’s a very different picture, because there’s much more genetic counselling, there are support groups, there are charities who will support you. And obviously, with Angelina Jolie coming out and doing the work she’s done to raise awareness, I think people feel less alone and maybe less vulnerable.

FLG: What impact do you think people like Angelina Jolie and other people sharing their stories has on the community?  

Caroline: It really depends. There are lots of people who really respect her and a lot of people who just don’t like her and don’t feel that she’s helped at all. Personally, I feel like she’s made an enormous difference. You know, she’s a really well-known celebrity who was known for her beauty and she’s come out there and said, ‘I’ve had these mastectomies, I’ve had a risk of cancer, I’ve had my ovaries removed, but I can still be a beautiful woman who feels empowered and feels like I can share this with the world so that people know that this is acceptable.’

FLG: What are some of the reasons why people don’t like her?

Caroline: I think a lot of people felt like she was so privileged. She had the doctors who would do whatever she wanted, and she had the aftercare, and it’s not always that way. And it’s a very different medical system in the US. And they think, ‘Oh, she had the insurance, and she could have what she wanted, the top doctors’ and that kind of thing. And I think people just maybe didn’t like her coming out and talking about it. I don’t know.

FLG: You have opted for preventative surgeries; would you be able to just discuss that process and what made you want to go down that route?

Caroline: Yeah, so I went for that first mammogram and MRI that I mentioned, and the results came back as having shadows on both my breasts. And it terrified me, I was convinced I was going to die, that I was going to leave three small children without a mum. And they said, ‘You have to come back for an ultrasound’, and the few days that I had to wait for that ultrasound felt like a lifetime, a lifetime of panic, and a feeling that I couldn’t go through that every year. Because every year I’d think I’d go for this mammogram, MRI, and maybe it’s clear that day, but what if in three weeks’ time something’s growing and I’m not back for six months, and by the time I go back, I’ve got some tumour that’s incurable? And so, I went back for the ultrasound and the technician said, ‘Where were you in your menstrual cycle when you had the initial tests?’ And I told them, and they said, ‘Well, there’s nothing there now. The shadows were purely because of that.’ And that really cemented my decision. I thought I’m going to have to get rid of them before they try and get rid of me, and it was going to be done on my terms. I was going to have to get rid of them one way or the other. It was either when they were healthy, and then I’d need no further treatment, or if I develop cancer, and then there would be potentially chemotherapy, radiotherapy, maybe no chance of reconstruction.

So, I had a risk-reducing bilateral mastectomy with immediate reconstruction with expander implants. And I have to say, I woke up with the hugest sense of relief. And I would do it again in a heartbeat. The second surgery I had was to have a bilateral salpingo-oophorectomy, which is the removal of both ovaries and fallopian tubes. That one frightened me, I’d say, more than the mastectomies. Even though it’s a smaller surgery, in terms of the fact that it’s a keyhole surgery, my ovaries, in my mind, defined me as a woman. They produce my hormones. I was scared that I’d wake up from the surgery a wrinkly grumpy old prune, you know, hot flushes and all of those kinds of things. And it frightened me. I thought that it would take away me as a woman. Breasts to me were skin, they’d fed three of my four children. It’s fine, they’ve done their job, and I could have reconstruction. But once you take away your hormones, it’s very difficult to get that balance back. So that surgery was much harder for me. Although I have to say, with the help of HRT, things have been fine.

FLG: How do you kind of feel now? These surgeries have long-term effects. How have you managed to cope with that over time and even today?

Caroline: Well, for the ovaries, I take the HRT which I’ll now take till I’m 51. So, 11 years of HRT. And having lower oestrogen has already taken its toll on my bones. So, I already have osteopenia, which is the precursor to osteoporosis. It’s quite young to have that. And menopause does take its toll on your whole body. You have the old hot flush, and you have the brain fog, where I forget what I’m saying halfway through a sentence or forget to turn up for things. And so yeah, it does take its toll. Also, I had the breast implants and then 10 years on, I had complications. So, you’re going have to change breast implants anyway. They’re not there for life; they’re not permanent. So, you know that once you’ve had the surgery, you’ve had the implants, 10-15 years down the line, they’re going to have to be changed anyway. So, it’s not a fix-all having the mastectomy and the implants. If you opt for different surgeries and you haven’t got implants, then you know you’ve got your own tissue, so you don’t have to have a change. So, I always knew there would be that.

But I had complications and thought I had a very rare lymphoma that is caused by the implants and opted to have the implants removed and then found out I didn’t have the lymphoma. But I have decided to stay flat. So, again, that’s something to deal with going forward because I’ve gone from having my own breasts to having implants to now having none at all. So, it is a lifelong process getting used to your new body emotionally, mentally, physically. It really does take a toll.

FLG: You have four children as well. What has that process been like for you, knowing that they may also carry the variant? Did you receive any genetic counselling?

Caroline: I didn’t know I had the mutation when I had the first three, but I did when I had the fourth. And I found it very difficult to get pregnant with the fourth knowing that I carried something. But having spoken to a genetic counsellor, I got my genetic counselling just before I had my fourth child, and she said, ‘There’s no risk of a child developing cancer, it’s more when they’re older’. And it’s a 50-50 chance that they get it, or they don’t. And I hope that if they do choose to be tested, which I would hope they would, and if they do then carry the mutation, the medical field will be so different. They won’t have to go through drastic surgeries like me. There may be a pill that can suppress something or another, and they will have different decisions to make.

FLG: You mentioned earlier that your dad also tested positive for the mutation. What was it like finding out that he had gone for testing and was in fact positive?

Caroline: It made me feel sad that he had it. He never found out because he died before the results came out. I don’t know, I felt sad. But I also felt empowered. I felt like he’d left me a legacy, he’d given me the gift of knowledge before he died. And I still feel to this day, it was the greatest gift he gave me, because had he not given it to me, I may not be here now. But it does make me sad that his mother would have passed that on to him and that it goes down the generations. But now that we know, we have the power to change that and potentially stop it going on to further generations.

FLG: There is often a misconception that BRCA only affects females. Knowing now that your father was affected by the mutation, what would you say to people who maybe don’t get tested and things like that?

Caroline: I think what frightens me the most is men and boys carrying the mutation. I’m always asked the same question, which is, ‘Oh, you’ve got girls, I bet you’re really worried about them.’ And I say, ‘Yes, I am worried, but if they carry the mutation, I feel like they will be proactive, and they will know what they’re looking for.’ I worry about the boys because men notoriously don’t want to think about illnesses. They don’t go to the doctor unless something is falling off. They’re not going to be checking their breasts because they’re going to be at risk of male breast cancer if they carry the mutation. Also, prostate cancer. These are things that men don’t talk about; they are taboo subjects. And I think if there is a BRCA gene mutation in your family, please encourage men to get tested, to be proactive about their health, to talk to their daughters, their sisters, everybody! Work as a team and look after each other and make sure that everybody knows what it is they’re looking for, what changes they need to look for, and not to be afraid of talking about them.

FLG: What do you think we could do as a society, or as researchers, or as a media company to raise that awareness among men and encourage them to speak up a bit more about their health and things like that?

Caroline: I think it’s always good when celebrities talk about it because it becomes less of a taboo. And when people come out and talk about prostate cancer, what effect it has, and male breast cancer in men. So many men I’ve spoken to say, ‘I didn’t know men could get breast cancer’, but men have breast tissue, just like women. I think we need to be much more open in society to talking about taboo subjects, the things that people find embarrassing, and I just think we need to put it out there more. It’s really important that it is talked about.

FLG: You are the director of BRCA Umbrella, and you also provide peer support for the community. What made you start doing this? And what support has it provided you with as well?

Caroline: When I found out I carried the mutation and there was no support out there, I felt really alone, really vulnerable and very frightened. So, I came across the BRCA Umbrella, and then subsequently took it over. But I met like-minded people, people that understood that feeling of there’s nothing actually wrong with me, but there might be something wrong with me, and that’s something might kill me. And being a peer supporter has allowed me to make sure that other people don’t feel like I did, to be able to talk to them, listen to their fears, and tell them about my experiences, and let them ask questions. I will talk about anything, anything they want to know if it makes it less frightening for them. Then I’m like an open book.

FLG: What are your future plans for BRCA Umbrella and the peer support you do? And could you just tell everyone a little bit about what BRCA Umbrella actually is?   

Caroline: So, peer support I do through Breast Cancer Now and I will continue to do that. So, it’s either a phone service or an email service. And people are matched to trained volunteers who will be able to explain their experiences and answer questions. So that will carry on as it is. BRCA Umbrella has had a bit of a hiatus for a little while but will be back to its full potential very soon. It’s an online support forum for people who carry BRCA mutations or other mutations that have a risk of the same kind of cancer. So, there are all sorts of other mutations that we cover. And there’s a chat forum, there’s reconstruction photo gallery, there’s all sorts on there. And if people are wanting to join, then please come along. It may take me a while to approve you, but in the past, it has been a really, really lively forum for people who carry BRCA mutations to meet other people and organise face to face meetups.

We’ve had all sorts of things like that. I work with UCL to train medical students on the patient experience. So, I go in and talk to them with another BRCA mutation carrier. And so, we really want to educate people. We work very closely with charities and with medical professionals to spread the word, especially to talk about the patient experience. Because often, I think we’re seen not as a whole person; we’re seen as a pair of breasts or a pair of ovaries. And it’s really important for the medical professionals to know how things impact us emotionally and to see us as a whole person and how one thing impacts another.

FLG: What advice would you give to healthcare professionals and researchers who are working with BRCA-positive patients?

Caroline: I think get to know what it will mean to a patient. Make sure you read their notes. The amount of times I’ve been in a consultation and asked, ‘When was your last menstrual cycle? And could you be pregnant?’ And you know, I said, but I don’t have any ovaries. It’s difficult for a patient to deal with. And I think just listen, answer questions; we’re going to have a lot of questions. It’s a scary territory for us. And yes, there may be nothing wrong with us, but we may have watched our mother, our aunts, our father, even, whoever, struggling with cancer and be frightened that that’s going to be us. So, take the time to listen, answer questions, and just understand that this is uncharted territory for us, and we need support and information.

FLG: What has been your proudest moment being a part of this community and sharing your story and getting your voice out there?

Caroline: Oh, there have been so many! Just talking about my experiences. I’ve been invited to speak in Colombia to medical professionals. I’ve been to wonderful conferences in the US. I think my favourite thing is a plaster cast of my original breasts is on display in the medicine’s gallery in the Science Museum as part of an exhibition on genetic testing. And that made me very proud, because although it’s something very personal to me, I just wanted to show people what it was that I was losing, but what I was gaining from that loss.

FLG: What would be the one message that you would give to other BRCA-positive people or people who have family members who are affected by breast cancer and ovarian cancer as well?

Caroline: If you find out you’ve got a BRCA mutation, you’re not alone. There is now a huge community worldwide, who are the most welcoming people, and we understand. We know that you’re feeling scared, and we know that maybe you don’t have a diagnosis or anything, but you’re frightened that you might. Just reach out – we’re there. And also, for family members, because it’s frightening for them as well, frightening for children. Just talk to your peers, and they can share their experiences with you, which hopefully should make your journey less scary.

FLG: Thank you so much for joining me today, Caroline. It’s been really great talking to you. And I really hope that this interview encourages other people to come out and seek help and get that support as well. So, thank you so much.

Caroline: Thank you.

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