Meet Julie-Anne who is on a journey towards becoming a previvor

The lovely Julie-Anne (@homewithmamajules)

Today we have another fabulous guest blog for you from the lovely Julie-Anne. Julie-Anne first got in touch with us several months ago as she is using social media to document her experiences as she navigates through the decisions she is making following her discovery that she has the BRCA1 gene mutation. As you know, here at Valiant we love having the opportunity to share your stories so we are thrilled that Julie-Anne has written something for you today! You can follow Julie-Anne on Instagram @homewithmamajules.

We’ll let Julie-Anne introduce herself:

“Hello lovelies! My name is Julie-Anne but a lot of people know me as Jules. I’m 43 years old and live in sunny Bournemouth with my fiancé Rod. I have four children: two sons who are 24 and 13 years old and two daughters aged 20 and 21 years. I also have two stepdaughters who are Rods children. We also have a very handsome cat called Harry!

I’m not from Bournemouth originally; I was born in Bradford, West Yorkshire, and moved here 9 years ago to be nearer to my mother’s family. 

I was first sent by my GP for a referral to the genetics team due to the history of cancer in my family. My mother lost both her parents to this disease and my father too. My father has four sisters; we have sadly lost two of them to cancer and the other two are currently in remission having had mastectomies. One of my aunties has written a book about their experiences called “A True Story of Love Loss and Survival: 4 Sisters Battle Cancer”. It’s a really good read!

After meeting with the genetics team, it was decided that I would get tested for various genetic mutations associated with cancer. So in October 2018 I was tested for BRCA1 and 2. During my wait for the results my sister Leanne who lives out in Australia was advised to get tested too. Fortunately she tested negative. So, as I am sure you can imagine, it was a massive shock when I got the call on 22nd December 2018 to inform me I had tested positive for the BRCA1 genetic mutation.

I cried a lot if I am honest! Then I just got on with life and in all fairness, I think I blocked it out from my mind. My job as a maternity care assistant kept me busy at the time.

After a while, I met again with the genetic counsellor and we talked more about the gene mutation. I was told that BRCA1 mutation gives me a heightened risk of developing cancer cells in my ovaries and breasts. Together we sat and drew out a family tree setting out what cancers there were in the family. We discussed my risks which was a shock for me; I was told I had a 25% chance of developing ovarian cancer and a 65% chance of developing breast cancer. We also discussed how the risks increase after the age of 40.

After that discussion, I was referred to a gynaecologist to look at having preventative surgery in relation to the risks of ovarian cancer. In all fairness there was no decision for me; I had already decided that a hysterectomy was the way forward. I had my four children and I was already sterilised so I just wanted the risk gone! The doctor was very forthcoming and supportive. He suggested a salpingo-oophorectomy rather than a hysterectomy. He explained that this is not only less evasive than a hysterectomy but quicker to recover from and would address my risks. This procedure involves removing your ovaries and fallopian tubes through keyhole surgery.

So in February 2020 I had a salpingo-oophorectomy at my local hospital. I went in as a day case and it took about a week to recover. The surgery was a success but unfortunately it has left me with the early menopause, which is quite frankly awful! I have night sweats, hot flushes and mood swings. After six weeks of this I started the HRT chosen for me by my gynaecologist with patches which I currently change twice a week.

I remember when I first met with the consultant gynaecologist, he spoke about the fact there is no known testing for ovarian cancer. That scared the crap out of me as it would any woman, so the decision to have my ovaries and fallopian tubes taken away was an easy one for me.

In contrast, it has taken me over two years to decide what to do regarding my breasts. I currently have screening via MRI and mammograms annually which is a program set up by the genetics team to keep an eye on my breast tissue. I will be honest, I do not like them! They are uncomfortable and with my claustrophobia my anxiety gets worse.

So, I have made the very hard decision to have a preventative double mastectomy. I have had meetings with my plastic surgeon and the Macmillan nurse to discuss the different types of surgery and I have decided I will have a mastectomy with DIEP flap reconstruction. This is where they take some of your tummy fat and use it to create breasts. It is a life changing surgery. I will lose my nipples and have a scar on each breast. I will also have a scar from hip to hip and they will also create me a new belly button.

How do I feel? I’m scared but I’m aware that the tests I can have don’t prevent me from developing cancer cells, they just tell me each year whether I have stayed cancer free.

I feel as a woman that I want my breasts to be as natural as humanly possible. In the beginning I felt I like was having my womanhood ripped away. This may sound daft but as a woman I’m sure many of you understand that you can feel that your body, especially your breasts and ovaries, are a significant part of what makes you a woman.

Now I’ve come to terms with the fact I have one of the BRCA gene mutations, I feel that I have an advantage over cancer because I can kick cancer’s backside before it kicks mine and I feel very lucky. Everything that I have gone through so far in my own personal journey has felt so difficult and I cannot begin to imagine if I had cancer how I would deal with it.

I use social media (Instagram and my Youtube channel) to document my BRCA Journey. I will keep documenting and updating on there right up to my preventive breast surgery recovery and beyond.”

Thank you, Julie-Anne, for sharing your story and for being so honest about your feelings. We know that you aren’t alone in feeling scared at times but we love that you’re sharing your journey to help other women out there who may be going through something similar.

Meet Vicki; a BRCA2 previvor who will be trekking the Sahara for CoppaFeel!

Every day we’re grateful that we have the chance to meet and get to know some of you; the wonderful ladies of Valiant! And we are proud to have the opportunity to share your stories.

Today’s guest blogger is the amazing Vicki (aka @route_to_previve). Vicki had a bilateral mastectomy with direct to implant reconstruction in February 2020. She says that, after years of uncertainty over the timing of her operation, she feels very fortunate that her surgery went ahead and wasn’t cancelled due to Covid 19. Vicki says that “2020 is going to go down in history but for me it will always be the year I swapped my nipples for scars and dramatically reduced my risk of breast cancer.” 

Here’s Vicki’s wonderful guest blog:

“I was 26 when I first found out there was a 50/50 chance I had inherited a BRCA2 gene mutation from my mum and shortly after I had my first appointment with the genetics team. During that appointment I was told that if I was to get tested straight away I wouldn’t be offered screening until turning 30 and that I should consider completing my family first (I already had my daughter).

If I had been told that now I would have gone home and done lots of research but maybe I wasn’t quite ready to accept the reality of a positive test result back then, so I did exactly as advised – I had another baby and waited until just before my 30th!  

Having a 50% chance of being at high risk of cancer is a big thing to have hanging over you for a few years. It triggered anxiety, a very unhealthy obsession with checking my boobs (at my worst points, a few times a day) and several visits to the GP and a visit to the breast clinic with various concerns about my boobs.  

When I received the phone call to tell me I had tested positive I already knew I wanted a preventive mastectomy and began the consultations straight away.

As my potential surgery date got closer I made the decision to postpone because my son was still little and I was really worried I wouldn’t be able to give my body the time it needed to recover properly.

Looking back I’m not sure it was the right decision and it had a terrible effect on my mental health but when it comes to BRCA there is no right or wrong choice. You have to follow your gut and in that moment it felt like the right thing to do.  

I visited my GP in January 2019 for a referral back to my surgeon however due to an admin error I didn’t get an appointment with him until the December.

Feeling 100% ready for surgery but being completely powerless to do anything about it was really hard especially knowing there would be another 8 or so months wait once I got put onto his surgery list.

At my appointment I burst into tears as soon as my surgeon walked in, uncontrollable barely able to talk tears, relief that things would start to move forward mixed with frustration that it had taken so long to get the appointment.

A couple of weeks later I got a call with a surgery date for 6 weeks’ time as I had been put on the urgent list. I was extremely grateful that I wouldn’t have another long wait but absolutely terrified it was happening so soon.  

The next 6 weeks was a complete emotional rollercoaster; from “bye bye boobs” bottomless brunch and a final photoshoot, to tears and therapy. However, the last few days before my surgery I felt surprising calm, after years of saying “one day I will have a double mastectomy”, it was finally happening!  

BRCA has taken my boobs and will soon claim my ovaries too but it has given me a love and confidence for my body that I’ve never had before, incredible new friends, a passion for fundraising and amazing opportunities. I am very lucky to be part of the team trekking 100km across the Sahara Desert for CoppaFeel! next March.

Instagram has been such a powerful tool in my journey. The support and understanding from the BRCA community is incredible. Christen (@brcachatter) sharing her post op photos gave me the first insight into what to expect from my own surgery and Kim (@nipplesoptional) who met me for coffee, answered all my pre op questions and has been at the end of the phone for support ever since.

My friends and family have all been really supportive and I’m truly thankful. But they can never understand in the same way as someone who is living with BRCA and that’s why I decided to share my own story on Instagram in the hope it may help someone else the same way others have really helped me.”

Thank you so much, Vicki, for sharing your story with us. We completely agree with you; the support and understanding from the community is amazing. And we hope that by continuing to share our stories we are helping someone out there to feel less alone.

Introducing Alison who is halfway to being a previvor

The lovely Alison! (@alisonwillie8)

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 (you can find her @forever_living_leeds_by_alison), 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!

Meet Casey who is on a mission to normalise flat closure

The lovely Casey (@theflattiecloset)

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.

Welcome to Valiant Lingerie

Here at Valiant Lingerie we are passionate about creating the lingerie you deserve.

My name is Eleanor and I’m the founder of Valiant Lingerie.

I’ve been aware that there is a lack of beautiful lingerie for women who have had surgery for breast cancer basically my whole life. My mum had breast cancer (twice!) when I was 3 and had a single mastectomy. I remember how much she hated her post-surgery bras.

When I was 19 I underwent genetic testing and found out that I have the BRCA1 gene mutation which means that I am at a much higher lifetime risk of developing breast cancer than the general population. (For most women, the average lifetime risk of breast cancer is about 12% whereas for women with a BRCA1 or BRCA2 mutation, the lifetime risk is between 69% and 72%.)

After a lot of research, and with the advice and guidance of some wonderful doctors, I decided to have a preventative double mastectomy with immediate reconstruction with implants when I was 24.

After my surgery, I was shocked by the lack of feminine lingerie available for women in my position. I had seen my mum struggle with this for years but I had thought that maybe this had improved over time. Unfortunately I found it hadn’t!

Before surgery, I used to wear pretty, feminine lingerie that made me feel confident. After surgery, I found the only bras available to me were plain and functional in style – they looked like something my grandma would wear!

I was desperate to find a bra that was stylish, feminine and designed sensitively so that it was comfortable to wear. I felt as though I was seen by the lingerie industry as a patient rather than a woman. And I couldn’t help but wonder how much worse it must feel for those amazingly strong women who were also going through chemotherapy and radiotherapy. I started to think about how unfair it was that women who had been through surgery and treatment for breast cancer were abandoned by the lingerie industry.

After years of searching for the perfect post-mastectomy lingerie collection and not finding anything suitable, I created Valiant Lingerie.

At Valiant Lingerie, my mission is to create a collection for all the women out there who have survived breast cancer or preventative surgery. They are amazing and courageous and they deserve to feel bold, confident and Valiant.

We’re so delighted to have you here at the beginning of our journey. We’ll be launching our first collection during the summer of 2020. If you would like to be the first to hear updates, and to receive plenty of notice of our launch date, please join our mailing list here.