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.

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 Laura as she prepares to trek the Sahara!

The wonderful Laura (@brca1_mum_)

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.

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.