Feel It On The First: An interview with breast cancer previvor and survivor Gila Pfeffer

Gila Pfeffer is a Jewish American writer and humourist currently living in the UK with her husband and four teenage children. Gila is a 13-year breast cancer previvor AND survivor, and she uses her social media platforms to promote breast cancer prevention. She posts a tongue-in-cheek “Feel It On The First” post every first of the month on her Instagram which prompts women to prioritise their breast health by doing a self-exam. Gila has been published in a variety of lifestyle, parenting, health and humour publications and is currently writing a reluctantly inspirational, searingly honest essay collection about outsmarting her genetic destiny.  You can find Gila on Twitter, Instagram and TikTok, as well as her website, ‘The Mom Who Knew Too Much’.

At the time of your breast cancer diagnosis in 2008 (just 14 years after the discovery of BRCA2), were you familiar with germline testing for breast cancer susceptibility genes, including BRCA 1 & 2?

Only just. I first learned about it when I started having children – around the early 2000s. It was through a friend of mine in New Jersey who had a preventative double mastectomy because her mum had cancer – that was the first time I had heard of that as an option. My mum died in 1994, and it was between then and the early 2000s that I started to realise there were things I could do to prevent cancer, other than checking myself, not smoking, exercising, etc. After I heard about this treatment, I knew I had to do it. My mum died at 42, her mum died at 49 – I thought “enough of this. We need to tackle it”. By the time I went for testing I was 31, and I knew it wouldn’t be negative. I needed that push to go for the double mastectomy. They were only testing for the three BRCA mutations, two BRCA1’s and one BRCA2.

You had a prophylactic bilateral mastectomy, but they found cancer in the excised breast. Had you been warned that that might be possible?

My understanding was that being BRCA positive meant I have an 87% chance of developing breast cancer, and a 60-something per cent chance of developing ovarian cancer. The numbers didn’t mean anything, though – I could see what was coming and I knew I had a 6ish year window to prevent it. If I had the surgery, it would put me back into the risk category of the public at about 5%. That was the plan. I had a double mastectomy, and they found cancer in the excised breast. I thought I was being so preventative; I was so focused on the surgery that it never occurred to me that anything would be found. When I got the phone call explaining that they had found two tiny but very aggressive cancers in my right breast, I was absolutely floored. I was likely made aware this was a possibility, but I wasn’t very receptive to it as a fact – no one was expecting it to happen.

Do you think that women having prophylactic surgery should be better prepared for the possibility that they may already have cancer?

On the one hand, I think knowledge is power and you can never be too prepared. On the other hand, I didn’t need another thing to be nervous about. It’s a very personal call. For me, I wouldn’t have wanted to hear that. I think there’s a way to work it into an intake question – to ask if people want to be aware of all the risks.

Your diagnosis, BRCA testing, surgeries, and treatments were all completed in the US shortly before relocating to the UK where you currently reside with your husband and four teenage children. How did you find navigating the UK healthcare system and were you able to identify the resources you might need as both a breast cancer survivor and having a BRCA mutation?

For me it wasn’t too difficult as we’re orthodox Jewish, we live in a Jewish community, so we have those community links. We met a lot of people through our Synagogue. I’m also post-treatment, so it’s more about maintenance, and looking for further cancers. What’s most surprising is that everyone here goes to the GP, but as an American, there are things I want to go straight to a specialist for.

I think most of us can recall when the Hollywood actress, Angelina Jolie, shared her personal story in 2013 after she discovered her BRCA mutation status and the subsequent decision she made to proceed with a bilateral prophylactic mastectomy and later a bilateral oophorectomy. Did you observe a shift in perceptions and breast cancer prevention awareness amongst the communities you worked with as part of your ongoing advocacy work after this story was released?

Big time! One of the chapters in the book I’m currently writing is about this. People ask ‘What happened to you?’ to which I just respond ‘Like Angelina Jolie, but three years earlier’. To which I always joke– she stole my thunder! We had a similar goal, to let people know you can do this preventative work and come out okay on the other side. There was more awareness, people better understood what I had done. There was also a change in the narrative, where previously people wondered why I had mangled my body, it was suddenly seen as a virtuous thing. It was the same thing with the oophorectomy. Kudos to her for bringing it to the forefront and making it an acceptable path to prevention. I try to continue that in my work – I have a ‘feel it on the 1st’ campaign, where on the first of every month I post myself holding two season-appropriate things. Pumpkins for October, dreidels for December, beach balls for August, to get people’s attention to check themselves. Over the course of months and years, I’ve got DMs from people thanking me for the reminders.

Looking back to the time of your diagnosis in 2008, do you feel that progress has been made in terms of available support and resources for individuals with mutations in breast cancer susceptibility genes (including BRCA1 & 2, among others)?

For me, I know where to get the help and support I need. Since the time I was tested and diagnosed Instagram has come into being, so it’s a lot easier to find a community. It’s important when you’re navigating such a scary time in your life to find someone who has been through it. There’s an organisation called Sharsheret. They’re based in New Jersey with offices across the US, and they support young Jewish women1 in the fight against breast cancer. I went to high school with the woman who founded it in November 2001. She was diagnosed with breast cancer at 28 and realised there was no support for young Jewish women with breast cancer. What Sharsheret does is link up people who are going through cancer with those who have gone through a similar type and come out ok on the other side. But just as no two breast cancers are alike, I think no two women’s coping mechanisms are the same.

How do you think the medical and research communities can grow and improve to ensure that breast cancer survivors and/or individuals at high risk of breast cancer may continue to be heard and supported?

We’ve just finished breast cancer awareness month, which started out with the best of intentions but has become very commercialised; I wrote a piece in the American satire publication “McSweeney’s” in response to a poorly worded ad for a Tiffany’s ring, which read ‘the ring that helps her remember surviving cancer’. It turns out the ring was part of a ‘celebration’ set for people to buy after they had been through a major event. That’s the issue, a lot of companies during breast cancer awareness month like to say that they’re supporting the cause, but there’s no transparency around how they do it. We need to be able to hold these companies accountable, so we can ask how they support it- not just by showing a pink ribbon. The month should focus more on prevention, on checking yourself for example – so much of what we do is preventative, we wear masks, wear seatbelts, etc.

Every now and again you hear something come out in the news about a new amazing treatment, e.g. targeted chemo which won’t have the side effect of hair loss. For me, the hair loss was so frustrating because of how public it was; it really impacted my confidence, and I was constantly aware of my altered appearance. I’m not sure people in the medical community always know how psychologically damaging the physical side effects can be. It’s not necessarily the role of the medical community, but there should be a lot more support around for the side effects. Clearer information about new treatments would be great. Every new treatment I’ve heard about in the last ten years has a few days of media buzz and that’s the last we hear of it. More follow up and more certainty of when it will be available to patients before going public with a new development would be helpful.   I would love to know that the treatments for future generations are better than the treatments I had.

What advice would you like to provide to someone who may have recently found that they have a BRCA mutation?

I would go back to my ‘knowledge is power’ mantra. Know your options and think about how you want to proceed. Try to fully understand what the implications of having the gene are before deciding how to proceed.

You have been advocating for breast cancer prevention and awareness on your blog for many years. If you could have a billboard, say in Piccadilly Circus or even Times Square, what would you want it to say and why?

If it was in New York, I would have a huge picture of two apples with the quote: ‘Hey New York, how do you like them apples?’ because New York is the Big Apple, obviously! If you can make someone think or laugh at an advert, they’ll remember it. They may not go home and do a self-examination that same day, but they may the next. They may take a photo of it and forward it to friends and family who will then remember to check themselves. For London, I’d have a quote saying, ‘Hey London, can you feel it?’ and maybe two London Eyes, or two scones, or two crowns. The point is to keep it top of mind for as many people as possible.

1About 1 in 40 Ashkenazi Jews have a BRCA1 or BRCA2 mutation compared with about 1 in 350 of the general population.

The views expressed are those of the author. Posting of the blog does not signify that the Cancer Prevention Group endorse those views or opinions.

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