This post is a bit different to my previous posts, as I have a guest! I want to share my sister Pippa's story with you, as I think this will be helpful to anyone going through something similar to her, and she is also really keen to share her experiences. For those of you who don't know her, my sister Pippa is 11 years younger than I, and she lives in Leeds with her partner and 5-year-old son. I interviewed her for this post, and for a forthcoming podcast series I'm creating, and this is her story.
Recording our conversation
Pippa remembers vividly the day in February 2017 when she received the call from me telling her I had been diagnosed with breast cancer. Although Pip and I are very different in many ways, there are some ways in which we are very similar. We have both inherited our granny's stoic pragmatism. Pip had a very practical response to my diagnosis, and felt optimistic once she knew my prognosis. We kept in touch all through treatment, and she sent me this awesome card when I got my scan mid-way through chemo which showed that the lump had halved in size:
Interestingly, Pippa didn't realise at first that I was quite young to receive a cancer diagnosis, but over time, her understanding of the situation deepened, partly through the information that I was sharing. She was grateful that we could be real with each other and she could ask me lots of questions. She remembers realising that cancer really could happen to anyone, as I had lived such a healthy lifestyle until that point so my diagnosis was quite a surprise. She was optimistic, and could see the light at the end of the tunnel; she shared my own positive attitude towards my cancer journey. When I received my BRCA1 diagnosis in 2018, however, she was more affected emotionally, because she had thought that I was done with cancer, finished with it all, whereas here was evidence that it hadn't necessarily gone away, but had the potential to return and affect her family once more. She found it less easy to compartmentalise my BRCA diagnosis, and it brought the strange semantic challenge of how to talk about my cancer. She wanted to say "My sister has had cancer" rather than "My sister has cancer", but the BRCA situation complicated things. And of course she eventually realised it had implications for her, despite the fact that I initially downplayed the risks and talked about getting screened rather than having preventative surgery.
Towards the end of 2018, Pip saw a genetic counsellor at a hospital in Leeds, and began the process of getting tested for the BRCA mutation herself. She knew she had a 50/50 chance of testing positive. (Incidentally, my dad and my two paternal cousins were also tested. Dad tested positive of course, and, thankfully, my cousins tested negative. Our youngest sister Caitlin also later tested negative.) The testing was quicker for them than it was for me, because their tests only needed to look for the specific mutation that I had been diagnosed with, whereas my test had sequenced the whole BRCA gene. As with my results, Pip got hers in the post, and she knew that she had tested positive when a leaflet about dealing with cancer fell out of the envelope! At first she pushed the issue to one side; our granny was ill and we as a family had other things to concern ourselves with, but as the weeks went by she thought and talked about it.
She was in a relatively new relationship, and one of the knock-on effects of receiving the diagnosis was that she had to have quite premature conversations with her new partner about their appetite for having children together, and the specific timescale of this. In fact, they had these conversations in a hypothetical context before she'd even received her results. It's a testament to Martin's all-round awesomeness that only a couple of months after meeting Pippa, he stepped up, engaged with these questions, and supported her through the whole process. In a similar way to the gratitude Pip has towards my partner, Tanai, for supporting me through my treatment, I am so grateful to Marty for being such a strong, positive presence in my sister's life.
The BRCA1 diagnosis brought Pippa a sense of urgency about completing her family, in order that she could then have preventative surgeries. As you can imagine, these issues all weighed heavily on her mind in the weeks and months after receiving the letter. To make matters even worse, and as regular readers will know, when I had my 'preventative' oophorectomy in February 2019, the lab results unexpectedly showed that I had already developed early-stage ovarian cancer, so I then had to have much more invasive surgery and more chemo. Suddenly the spectre of cancer started to loom over Pippa. It didn't help that the symptoms of ovarian cancer (needing to pee often, feeling bloated etc) are basically the same symptoms as those of simply being a woman! Our granny was also getting very ill, and we knew she was reaching the end of her life, and, understandably, Pippa started to feel overwhelmed with everything that was going on. She visited her GP who was very understanding, and got Pip some referrals to get herself checked out for breast and ovarian cancer (blood tests, scans, ultrasounds etc) to put her mind at rest. She had also, meanwhile, had an appointment with a CNS (Cancer Nurse Specialist) who had talked her through all the breast reconstruction options, and who suggested that Pippa had her breast surgery first, then once she had healed from that she could complete her family, and then she could have her ovaries removed after that. This sequence of events hadn't occurred to Pippa, but it seemed to solve a lot of her problems! It meant that she would be able to have her breast surgery without having to deal with lifting and carrying babies, and it meant that she had some time before she had to think about having another child. Of course it would mean that Pippa couldn't breastfeed her future children, but that wasn't high on her list of priorities so this seemed like the perfect sequence of surgeries.
Towards the end of 2018 Pip had come to a decision about her course of treatment, and she had an appointment with her breast surgeon. Interestingly, over the course of the year she'd been mulling over her choices, she'd changed her mind several times! As well as my own situation, she'd found out that another woman at work also had the BRCA1 mutation, and had undergone preventative treatment years previously, and she joined a secret facebook group of people with BRCA1 and BRCA2 mutations which she found incredibly useful. Pippa made different treatment decisions to me, and we discussed at length what made her choose to have implant reconstruction. Her surgeon had said that she was a good candidate for flap reconstruction, where the surgeon removes tissue from elsewhere in your body (usually abdomen or back) and reconstructs breast forms in your chest. However, Pippa wanted to avoid surgery which had a long recovery time, or which might negatively affect her experience of pregnancy and childbirth down the line, so in the end she chose to have a double mastectomy with immediate reconstruction using over-the-muscle implants. She didn't really ever consider remaining flat as I have chosen, partly because her body shape is very different from mine, and she felt as though she wouldn't feel right in her body without something 'up top'. She knew that to go flat would likely exacerbate her own insecurities about her belly and bum, and she would rather keep her curves and ensure that she felt good in her body and protected her mental health.
So on Friday 13 March 2020 (oo-er) Pippa had her surgery. Only days later, due to the COVID pandemic, all elective surgery was cancelled, so she was incredibly lucky to get in under the wire! She came home with two drains in, one which stayed in for a week and the other for a fortnight. Mum went to stay with her to look after her along with Marty, and her son was briefed beforehand that mummy was going to be feeling a bit poorly for a while and he needed to make sure he didn't jump on her or anything. He was really great and just got on with it, and after a while Pip started getting her strength and range of motion back, and she healed really well. Interestingly, before her surgery she'd decided on round implants, but while she was under the anaesthetic, her surgeon had tried them, discovered that they didn't quite look right, and so had put in teardrop ones instead! They are a few sizes smaller than Pippa's old bra size (from a size F to a D), and when I asked her how she felt about them she responded really positively. She thinks they're a great shape, she loves how she looks in all her clothes, and she's happy with the size and the feel of them. Obviously she no longer has nipples, but that doesn't overly bother her (she's undecided about whether or not to have nipples constructed or tattooed, or to just leave them as they are). She has phantom nipples which sometimes itch or hurt, even though they are not there! (I also sometimes have phantom breasts which is super weird.) Occasionally she will have a wave come over her, as she realises the enormity of everything she's going through, but that passes, and more often than not she's happy and grateful to have been able to take preventative measures, reducing her chance of getting breast cancer to much lower than the average woman on the street.
Sisters compared
Many people in the BRCA community who have not had cancer call themselves 'previvors', which is a cute and catchy term, but Pippa insists that she doesn't feel as though she's survived anything. As she terms it, she's "whipped the rug from under cancer's feet", and she would much rather have undergone the preventative surgery than endured chemotherapy. (I completely agree!)
I'm so proud of my sister for the way she has dealt with all of this. She has not finished her journey by any means, but she's achieved so much already, and managed it while caring for her family, keeping her home and bringing in an income, without losing her love of creativity and her incredible capacity to act thoughtfully towards others. I hope you've found this other perspective useful, and thank you Pippa for generously sharing your story.
