Hello everyone and welcome to our next wonderful guest blog!
Today’s blog is written by the lovely Casey.
Casey is 33 years old and BRCA1+. She had a prophylactic total hysterectomy on 26th May 2020 and a prophylactic bilateral mastectomy without reconstruction on 30th June 2020.
Casey’s mission is to help normalise flat closure among previvors and young women, as well as to inspire the flat-chested among us with outfit ideas as she “shops her closet” post-op.
Casey has always loved fashion and clothes and having no boobs has presented a fun new challenge for her as she gets dressed each day.
Casey says that she is a beach girl through and through. She lives with her husband and three kids in St. Petersburg, FL, right near the Gulf of Mexico.She loves paddleboarding, reading NYT bestsellers, making art (collage mostly), and drinking iced coffee on road trips with her family.
Casey would love to connect with you all on Instagram @theflattiecloset!
Here’s Casey’s story in her own words:
“I have a hard time wearing high heels because I feel like I’m lying about my height. I’ve only ever dyed my hair with semi-permanent dye because I’m happy living with my natural hair color. I never liked the idea of push-up bras because they felt a little dishonest. Heck, I didn’t even get french tips for my wedding (all the rage when I got married) because I rarely painted my nails and I wanted to present myself accurately.
Now that I write that all out, I’m realizing how completely neurotic I sound. But stick with me! The point of these bizarre confessions is this: I like feeling like the person that I was made to be. Celebrating my unique genetic makeup. Being the one and only Casey. Being my true self (cue the Disney ballad).
So: when a BRCA1 gene mutation reared its ugly head and I needed to do something about it, I wanted to simply morph into a new, natural version of me: a girl who was losing her boobs in an effort to prevent cancer, and gaining some pretty badass scars in the process. In fact, I barely even gave implants the time of day. I knew in my heart of hearts that I wanted to go flat and stay flat. That might sound pretty crazy to most women my age, and I get it. I basically turned down a boob job. And believe me, after breastfeeding three babies, my chest could have used the revitalization. But in the end, I had to be true to who I am, and that meant opting out of further reconstructive surgery. Just scars, just flat, just my skin on my ribs.
I knew that women went flat – I’d seen information online that indicated it was an option post-mastectomy. But when I went to search the all-knowing Google, all I found was very limited information, some clinical photos of scars, and a few forum accounts of breast cancer survivors who had gone flat. To be honest, I didn’t feel like I fit in. I wasn’t a breast cancer survivor, I wasn’t middle-aged; I was “just” a previvor in her 30s.
I started to wonder if there really was anyone else out there like me. Did women actually just walk around and go to the grocery store flat? Were they self-conscious at all? Would I regret my decision? Would it be good to get a prosthesis? How would clothes fit? Could I still wear what was in my closet? What did not having breasts feel like? How would my brain process not having boobs anymore?
The questions kept coming. But my biggest question was: where were the flatties? Specifically, where were the previvor flatties?
I turned to Instagram, and began searching all kinds of flat hashtags. Once I’d waded through the photos posted by owners of Flat-Coated Retrievers (yeah, the main “flattie” hashtag is co-opted by dogs – face palm), I started to get somewhere. I found a small army of amazing women to follow, but I also began to learn that flat closure after a mastectomy was an option that had been fought for for years by a crusade of brave individuals. This group of women had been campaigning, dealing with botched surgeries, picketing for their rights, and advocating for all women to get the surgery results they desired. Going flat was a bigger deal than I initially realized – it didn’t used to be such a simple, easy decision to make.
It’s because of these women that my breast surgeon didn’t flinch when I asked her for a flat closure. She was aware because this group of women had fought to make doctors like her aware, and for that I am so very grateful. Not only did I find the flatties, but I found that those flatties were beautiful and badass.
I’m now proud to join the crew as a newbie, adding my voice to the mix, sharing my love of fashion, and writing honestly about life as a flat previvor. I am still slowly trying to find more women who are previvors like me who have chosen to go flat – if you are one, give me a shout! We seem to be few and far between, and that’s one of the main reasons I started my Instagram account – I want to connect with you!
I want to be able to talk about what life looks like for those of us who haven’t fought cancer, but still need to fight genetic mutations. I want to showcase what clothes look like on a flat chest, and encourage women considering a flat closure that being fashionable is still an option. I want flatties and potential flatties to know that life can be good even without lady parts; that we are free to be ourselves, no matter what form that takes.
And I especially want previvor flatties to know that their stories are valid and important, and they are not alone.”
Thank you so much, Casey. We love Casey’s mission to connect with and support other previvor flatties.
Like Casey, we are so passionate about doing what we can to ensure that you feel empowered and confident and that no woman in this community feels isolated and alone.
We’re delighted to introduce Susan. Susan is a digital communications professional and carries the BRCA2 gene.
She had a preventative double mastectomy with direct to implant, under the muscle reconstruction in December 2017 which makes her a proud breast cancer previvor.
Having had successfully coached herself to prepare for this surgery she is now working towards a Life Coaching diploma with a view to help people tackle their goals and improve their lives through the life changing magic of coaching.
You can find her on Instagram as @lookatsusie (as lookatsusan was already taken!).
Susan believes that mental health is equally important as physical health and just because she’s lost her breast tissue it doesn’t mean she’s lost her sense of humour.
After three knee surgeries in the last four years one of her goals is to strengthen her knee and leg enough so she can run every day…to catch her bus.
Without further ado, let’s hear from Susan!
“It was May 2013 when Angelina Jolie announced that she was a carrier of the BRCA1 gene mutation. She stated that this had given her a 87% chance of breast cancer and on the back of that knowledge, had made the decision to have a preventative bi-lateral mastectomy.
Back in May 2013 I was still five months away from receiving the results of my own blood test for the BRCA2 mutation. When I read her announcement and brave surgical decision, I remember thinking that Angelina was such a perfect ambassador for BRCA awareness and breast cancer prevention. To me she represented beauty, femininity and, above all, strength. I thought that if my results showed that I carried the mutated gene, then I would be proud to be associated with her.
You see, two years prior to Angelina’s announcement I had begun pursuing genetic testing as I became increasing aware of the prevalence of breast cancer on my dad’s side of the family. My dad’s mum had breast cancer. As did his sister (three times no less), his aunty and his female cousin. That’s a lot of breast cancer to consider.
Because of this niggling family history, I found myself broaching the subject with a practice nurse during a routine pill check in the spring of 2011. It was a sort of ‘by-the-by” kind of thing. I hadn’t previously discussed my growing concerns with anyone, not with my then partner, nor with my family or friends. To be brutally honest I wasn’t even sure what to ask…
“There’s a lot of breast cancer in my family..” I began.
“What side is it on?”
“Mainly my dad’s.”
“It doesn’t come down the father’s side” I was told by the nurse. Dismissed. Case closed.
Months later I tried again. Another pill check. Another practice nurse. Again, I told them about my family history of breast cancer.
“It doesn’t come down the father’s side”, I was told again.
I wasn’t taking no for answer this time.
“It’s on my mum’s side too.” I pressed, determined not to be fobbed off this time. This was true, my mum’s sister had finished her treatment for breast cancer and was still being closely monitored. So, on the back of it being present on both sides of my family, the nurse (I have to admit, somewhat reluctantly) referred me for genetic testing.
For this genetic testing meeting I was asked to bring in a family tree with the types of cancer my relatives had developed and the age they got it. After the consultant looked at my family history, he confirmed that due to the breast cancer history on my dad’s side, it did suggest that hereditary breast cancer ran in my family. To be certain I would have to have to have a blood test. Before that I would have to have genetic counselling so I was aware of the impact on my life should my test came back positive.
I had my genetic counselling and blood taken in October 2011. However, before it could be tested for the gene, a geneticist from my team explained that my breast cancer surviving aunty (my dad’s sister) had to have her blood tested first. This was to try and identify a mutation in her DNA. It’s like being given a book and looking through it to find a spelling mistake. Once you find a spelling mistake in that book, you know what you’re looking for and it’s easier finding it in other books. The other ‘books’ being my dad and myself.
Thanks to the complexities of the NHS and the difference of BRCA testing criteria between NHS areas it took a long time to get confirmation. My auntie’s genetic team in the North East had a stricter testing criteria than my team in London and were very reluctant to test her. In fact they initially flat out refused. It took some lobbying on my part to push this along. I say lobbying, I simply told my softly spoken geneticist in no uncertain terms, to Make This Happen. I had gotten this far into the process, I certainly wasn’t stopping now. To his credit and to with my undying gratitude, he made a passionate case for me, pointing out that my auntie had had breast cancer three times, and so they agreed to test her.
So, after waiting a painfully long year to find out that my auntie carried the mutated BRCA2 gene it was my dad’s turn to get his blood tested. He had the same spelling mistake. Then it was finally (finally!) my turn. After two very long years of waiting, somewhat bizarrely to the very day, I finally got my results in October 2013.
Being BRCA2 positive with my genetic variant (there are hundreds of known variants) put my risk of getting breast cancer somewhere between 70%-80%. Not as high as Angelina as the BRCA2 mutation carries less risk, but still very high. All things considered I think I took this news on the chin, as soon as my dad told me he had the gene I kind of knew deep down that I had it as I don’t physically take after my mum. I only cried that day because Billy Elliot is a very emotional musical. Honest 😉
I was immediately put under yearly MRI monitoring. At first, I was fine with just monitoring. Cutting off my healthy breasts felt counter intuitive and unnecessary. However, after my second MRI scan in January 2015 I had had enough. Scanxiety is a real thing l and I kept reminding myself of how high my risk was. I was fed up wondering after every scan if this was the year I would get breast cancer. I decided it was no way to live.
Reader, I chose to have a preventative bi-lateral mastectomy.
I had this preventative bi-lateral mastectomy with immediate reconstruction in December 2017. Was this an easy decision to make? Hell, no. Was the recovery difficult? God yes – more difficult than I imagined, both physically and emotionally. It’s a weird grieving process. It’s traumatic. It’s painful. It’s effectively an elective amputation which I stupidly tried to minimise because I didn’t have breast cancer.
Am I glad that I had it done? 100% yes. I no longer have the threat of breast cancer hanging over my head. My risk has been reduced from 80% down to somewhere around 5%. Hooray!
Not only do I no longer worry about getting breast cancer; aesthetically, I’m very happy too. I had a direct to implant reconstruction, placed partially under the muscle. I had a boudoir style photo shoot before my surgery to help me say ‘goodbye’ to the girls. Not only did this help me to emotionally prepare for my upcoming physical change, it also gave me an opportunity to compare my breasts as to how they used to be. Looking back, I genuinely think they look better now post-surgery. Thanks to my clever surgeons I managed to keep my nipples and I’m roughly the same size; both of which I’m thankful for. I didn’t want to feel as if I would be losing anything from having this annoying mutation.
I now have more headspace. I may not have had breast cancer, however just like having breast cancer, my life was effectively put on pause and everything revolved around hospital appointments and surgery consultations. It’s no exaggeration that it took over my life for many years. I was mono focussed – reading, researching and making decisions. Literally everything I did in the year leading up to my surgery date was to help me prepare for it. Work was something I did to pay the bills and I wasn’t even considering a new relationship.
Having a BRCA mutation does focus the mind, at the least the thought of having it definitely did. I broke up with my ex-partner in 2011 soon after I had my genetic counselling and gave my blood sample. It wasn’t the reason we broke up, however I believe it was a factor. The thought of spending the rest of my life with someone who moaned when I had a cold wasn’t really appealing. If they couldn’t care for me when I had a virus for a week (Susan, I’m playing a game), what would they be like if I had cancer? I imagine probably a bit sh*t.
Actually, it’s only just having written this that I’ve realised I’ve cut out some unhelpful people in my life (as well as cutting out unhelpful breasts) as part of this journey.
Reflecting back, I’ve definitely learnt a lot about myself. I had many ladies said to me that they couldn’t do what I have done. And once, years ago, I’m sure I felt like that too. However, I no longer remember that person. I’ve come to realise that people are stronger than they believe themselves to be.
More specifically, I am more stronger than I believed myself to be.
No one wants to become a member of the preventative mastectomy club; however, I’ve discovered there are definite upsides in joining the ranks. Not only have I futureproofed myself against breast cancer (I secretly call myself Susan 2.0 now) and can crack on with my life, I’m proud to part of a group of people who have had to make these difficult choices.
We are bold. We have courage and we can definitely do hard things. “
Thank you so much for your blog, Susan. So much of it resonated with us here at Valiant HQ. We love the idea of Susan 2.0 and we totally agree; we are bold and courageous and we can do hard things!
We have another fabulous guest blog for you today. It’s a real pleasure to introduce Alison (@alisonwillie8). Alison describes herself as a busy wife, mum of two, receptionist at Leeds Gymnastics Club, business owner, proud Sheffield Wednesday fan. She says she is half way to being a proud previvor!
Alison has written about her experiences finding out about the history of breast cancer in her family, undergoing genetic testing and ultimately the decisions she has made upon learning about the BRCA1 genetic mutation. Here’s Alison’s story:
“I sat in the doctors surgery aged 20 and told my GP that I was worried that breast cancer was going to come for me. Dramatic perhaps, but my nan had just died of it not long before. She’d had it twice and watching her suffer had affected me deeply. Despite my concern, the doctor did not seem worried and I was sent on my way.
Fast forward 18 years and there I am again, sat in my doctors surgery. This time advising them that the BRCA1 gene mutation had been discovered after my nan’s only surviving sister had undergone genetic testing. This time, luckily, I got a very different response.
I was asked to draw a family tree and mark those who’d had a cancer diagnosis and or had died from it. I knew there was a history running down my dad’s side of the family but only once it was there in black and white did it really hit home just how scarily real this was.
Breast cancer had taken the lives of so many relatives and there was absolutely no way that I was going to become another name on that list!
I planned to pursue the testing on my own, without anyone knowing. I didn’t want people worrying and just wanted to know where I stood so I could do something about it.
When the family history forms arrived though, it was obvious that it just couldn’t work that way. There were too many questions that I simply didn’t know the answers to.
A few months later a letter arrived with an appointment to see the genetic counselor. I didn’t like the sound of that! Why did I need to see a counselor when I know what I wanted?!
I convinced myself that they would try and talk me out of it, that they’d say I didn’t need testing. I spent days before the appointment planning how I would argue my case.
In reality I couldn’t have been more wrong. They were nothing but supportive. The genetic counselor completely understood that I was a mum, that I needed to know if I carried the gene mutation too, not only to make sure I was alive to see my children grow up but also so I could prepare them for the chances of also carrying it. The bloods were taken there and then and so began the wait.
The call came during our family holiday.
I knew what she was going to say. I had long since made peace with the likelihood of it being positive and as crazy as it sounds I felt relieved to know now where I stood.
That’s not to say I wasn’t upset. I was. That word, positive, had now changed things. Yes, it meant choices regarding my body but that’s not what got me. It was the 50/50 odds of me having passed it on to my kids that I found hard to accept. All a parent wants is to protect their children and I felt like I’d failed in that.
Always one to be in the know, I set about researching. Along the way I found not only information but people, just like me. I call them my “BRCA buddies”. They are such amazingly strong women. So open and honest and always prepared to share their stories, even the gory, personal bits. It was just what I needed. They were getting through their journey and so could I. And maybe I could repay the favour in the future and help other people too. I felt empowered.
Appointments came through pretty quickly from there. Specialist breast nurse, breast & gynae surgeons and my first round of annual screening.
Anyone who’s been through a breast MRI will know what an odd experience it is. I don’t think I’ve ever laid in a more uncomfortable position; face down, arms overhead with boobs dangling down through two holes in the table, oh and don’t forget the evening primrose capsules they tape to your nipples! Writing that, I have to laugh but at the time it’s not quite so funny.
A couple of days before Christmas I got a letter calling me back for more tests.
I called, desperately wanting to know what they’d seen. All they could tell me was that it was something on the right side, close to my arm pit. That was when I really did start to worry.
I tried to put it out of my mind. I didn’t want to spoil Christmas. Luckily, after a few anxious hours of what felt like endless mammograms and ultra sounds they decided that it was just my breast tissue and nothing to be concerned about. Phew! I was so relieved but I was then adamant, no way could I do this every year. For me there was no other option. I wanted rid of every part of my body that was going to try and kill me!
I’d always thought that I would have my mastectomy first as I deemed my boobs to be my biggest threat but while still waiting to see the breast surgeon I was offered a date for the hysterectomy and decided to just get one out of the way as soon as possible! I was fast approaching 40 and just didn’t want this hanging over for me any longer.
The operation went well and the recovery was quick. I was so glad I’d done it. I now felt like things were moving and it was a relief.
A few weeks post surgery I was offered a date for my mastectomy. March 25th. I couldn’t believe my luck. Both operations would be done and dusted. I’d be able to celebrate the big 40 with new boobs… that wouldn’t need holding up by a bra! For the first time in years I was going to wear whatever dress I wanted without having to worry about scaffolding!
3 days before the big day, COVID happened and my mastectomy was put on hold and now we wait again.
While completely understandable It was also frustrating. I’d packed my bag. I’d prepared the kids. My husband and I had prepared ourselves.
Lockdown brought many positives though. We got to spend more time together as a family, we took steps to get fit and be more healthy and in a bid to do something other than attempting to home school my 12 year old daughter and 13 year old autistic son, I set up my own business with Forever Living, sharing high quality aloe Vera products to support people trying to look and feel better.
Hopefully I won’t have too long to wait now. I can’t wait to finish this journey and be able to wear my previvor badge with pride!
I want to finish by saying a toast…. Here’s to those who are no longer with us, but who in death gave us the key to knowledge. The knowledge that gives us choices. Choices that mean we are in control of our own destiny and also mean we get to see our kids grow up. Cheers everyone. “
Thank you, Alison, for trusting us to share your story. We know you were apprehensive about the act of writing it all down but you needn’t have worried – we think your writing is wonderful and approachable and we empathised no end. (We vividly remember the undignified MRI set up!) Your story is important and we are honoured to share it!
One of the most amazing things about the journey we’re going through at here at Valiant Lingerie is meeting you; the wonderful and inspiring women in this community. It’s really important to us that Valiant represents you and your stories.
With that in mind, we’re delighted to share with you the first in a series of guest blogs. Please meet Laura. Originally from Northern Ireland, Laura is a 35 year old educator living in Worcestershire with her husband and two young sons. A BRCA1 carrier, Laura is preparing for a double mastectomy and reconstruction having had her ovaries removed last summer. In November Laura will be trekking 100km of the Sahara desert with CoppaFeel to raise vital funds for this worthy charity.
You can find Laura on Instagram; @brca1_mum_
Without further ado, here is Laura’s story!
“I was 17 when my mum was first diagnosed with breast cancer. I was 28 when she was diagnosed with ovarian cancer. It was then that the doctors suggested gene testing.
I was aware of what this meant, my family had been through it on my dad’s side of the family where the BRCA2 gene mutation runs.
My mum, we found out, was a carrier of the BRCA1 gene mutation. I have had several family members suffer from cancer, and had seen up close the impact it had on my mum. It was a no brainer for me to undergo the gene testing when it was offered to me, even though I was 5 months pregnant with my first son at the time. I don’t know why but I had no doubt in my mind I was a carrier. I therefore wasn’t fearful of the result, but instead looked forward to it being confirmed so I could start the early monitoring and testing offered by our wonderful NHS so I could take control before cancer got a chance to take hold of me. Needless to say I tested positive, the only one to do so out of myself and my three siblings.
And so began my journey as a BRCA1 ‘previvor’. I’d never even heard that term before I started following BRCA carriers on Instagram. There’s a wonderful community of support on those little squares. They’ve been a lifeline to me on my down days.
I had my first MRI in Spring 2015, a few months after my son was born. The breast tissue in women under 40 is too dense to pick up changes through mammograms so MRIs are offered instead. Lying face down in the MRI machine that first time was daunting. Actually, if I’m honest, it still is daunting!
It was much noisier than expected and lying there I began to panic that I would react to the dye when it was injected. Health anxiety is a recurring theme in my life and something I have worked hard to overcome. I mostly have a grip on it now, but every so often it rears its head. Lying in the MRI machine I took deep breaths to calm myself. Turns out those deep breaths made my body move too much so I had to start the scanning process all over again.
In the 4 years that followed my diagnosis I gave birth to my son, had my annual MRI, moved house, had my annual MRI, suffered a missed miscarriage, discovered I had a benign tumour on my kidney (angiomyolipoma), had my annual MRI, gave birth to my second son, was diagnosed with PTSD, started a new job, in fact, a new career.
Then in the spring of 2019 I went for my annual breast MRI. Only this time I was invited back, urgently. They had found a lump. It was buried deep in my breast tissue so I would never have found it myself.
The doctor explained it may very well be nothing to worry about, but they needed to be sure. I immediately had a mammogram, an ultrasound and a core needle biopsy. This involved using a needle to take a sample of the lump for testing – a process which was uncomfortable and painful, made all the more difficult because it was buried so deep. They also placed a clip on the lump so that in future scans they could track the growth and movement of the lump.
Then followed the two week wait for the results. The longest two weeks of my life! I was convinced I had cancer. I had the gene. There was an 85% chance I would develop breast cancer in my life. This lump was anything but innocent.
As luck, or maybe fate would have it, it was a harmless lump. A fibroidanoma. But that was it, there was no way I was putting myself and my husband through that stress again. So I decided now was the time to move forward with my preventative surgeries.
In July 2019 I had both of my ovaries and fallopian tubes removed. There remains a risk that cancer can develop in the peritoneum, but this is small.
At 34 I was in menopause. In Autumn and Winter 2019/20 I began the preparations for a double mastectomy and reconstruction. I met the plastic surgeon, had my photo shoot (as glamorous as you would imagine!) and met with the psychiatrist.
I was set to have my surgery in Spring 2020. And then coronavirus landed. Nothing like a global pandemic to throw a spanner in the works! And so my non-urgent surgery was put on the backburner whilst the NHS focussed on managing a pandemic. Fair enough!
Within days of realising my surgery was off I discovered I’d been accepted to embark on a CoppaFeel charity trek – 100km across the Sahara! I’d applied on a whim after a glass (or 2!) of wine. I can’t even really remember what I put in my application! So, it might not be the challenge I was expecting in 2020, but there is no doubt this trek will challenge me. Anyone who knows me knows I hate the heat and suffer from anxiety. Can I really manage 5 days trekking through the desert, in blistering heat, with no communication with my husband and sons? I’ll have to! I’ve paid my deposit, and, more importantly, family, friends and kind strangers have sponsored me to do so. I won’t let them, or myself, down.”
Thank you so much for sharing your story, Laura. We can’t wait to follow your journey as you prepare for your trek. Please do head over to Laura’s Instagram to learn more about this challenge and how you can support her.