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 Susan; a proud breast cancer previvor

Wonderful Susan (@lookatsusie)

It’s a beautiful, sunny summer’s day here in Norfolk. You know what makes it even better? It’s time to introduce our next guest blog!

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… 

*deep breath*   

“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!

Introducing Christen of BRCAchatter

The fabulous Christen Williams (@BRCAchatter)

It’s our absolute pleasure to introduce the next in our series of guest blogs. Please meet the wonderful Christen Williams who you may also know as BRCAchatter. Christen speaks very passionately about her experience of discovering she has a BRCA2 gene mutation on both Instagram and Youtube. She has produced some really fabulous videos explaining what BRCA gene mutations are and documenting her experience of a risk reducing mastectomy (and beyond!).

If you don’t already follow her, what are you waiting for?!

Christen has written a wonderful blog for us today in which she speaks about body image and feeling beautiful after surgery. Take it away, Christen!

“What makes you feel beautiful and sexy? Is it the skin you’re in, or the clothes you’re in? Can your clothes help if you’re unhappy with your body? The answer is yes – clothes and lingerie have a unique power to empower us.

In 2018, my surgeon said to me, “I’d be happy if you chose a double mastectomy, or I would be happy if you chose regular screening to catch breast cancer early… it’s your choice either way.”

I sat there thinking, “I’d be happy if you made the decision, Doc, save me the anguish!” But he could not, and I had a lot of thinking to do.

In 2015, after my mother died of ovarian cancer, I discovered I carried a rare genetic mutation of my BRCA2 gene. This meant that I had an up to 85% lifetime chance of developing breast cancer. Over the next few years, I would slowly learn to detach from the beautiful ticking time bombs on my chest and view all boobs in a whole new light… leading me to sit in front of the Doc and ponder my life choices.

A lot of us hate our boobs – some studies say up to 85%. Too small, too big, too saggy, too booby. I fell between love and hate. I loved their size (28FF), big and bouncy. I hated them without a bra. Big and droopy. As soon as I was told I could lose them, the love hate relationship amplified. I loved them SO much, don’t cut them off, and I hated everything they stood for – they had failed me. To lop or not to lop?

This decision comes down to body image, and how we view our bodies. It is not helped by the view of society, which sexualises women’s boobs. Boobs are used to sell cars, KFC, and squash. Yet women are battling across the world to breastfeed in public without being shamed and judged. Losing my boobs meant I would never be able to breastfeed. Was I thinking about that? Hell no. I was more concerned about having a boob reduction and losing my cleavage. 

Many things swayed my decision to opt for the mastectomy. At one point, I casually said to my genetic counsellor, “Well, if my cancer is caught early, I can get rid of it.” And she just looked at me blankly and said, “Yeah, but you might die!” To the point. My second surgeon said, “You need to figure out whether your boobs are your biggest priority in life!” When you put it like that, it becomes boobs or death? It’s a no brainer, but that doesn’t mean it’s an easy decision. 

I spent a lot of time living life, touching my boobs, staring at other women’s boobs. To be honest, I probably looked like a bit of a boob perve. When I put on a bra, I would mourn for its future loss in the bin. I made a big deal of going to Bravissimo and buying “my final bra” and “my final bikini”. Every time I went to yoga I would be doing the cow, cat or dog and admiring my boobs in my final sports bra. The mastectomy loomed over me, like a giant big-boobed elephant in every room I entered.

As I started to learn about potential complications of a mastectomy, I significantly lowered my expectations. When you hear about infections, tissue death and implant removal, suddenly size doesn’t matter, and a painless, quick recovery does. I prepared for the worst, so I could be pleasantly surprised when the worst didn’t happen. The worst never came for me; I was lucky (Doc says I wasn’t lucky, just young and healthy).

I would love to go back in time. Into all those rooms with the big-boobed elephant, and say to it, “You will love your faux boobs. ” (Foobs.) I would love to tell myself that I am the same size. Those final bras and bikinis I bought? I can still wear them. All those dresses? I can still wear them, even braless. I want to drift back to the past and reassure myself, and all other women waiting for a mastectomy, that you find a way through and you learn to love yourself again.

One of the worst things? Our choices of lingerie are somewhat limited. We are supposed to avoid underwire bras. Valiant saves the day here – I am so proud to support this company, which gives hope to all the foobilicious figures out there. In my old bras, I look the same. In my old clothes I look the same. But, new foobs require new lingerie – they needed to be celebrated for all they stand for. Life savers.”

Thank you so much for sharing your story with us, Christen.

You can find Christen on Instagram (@BRCAchatter) and on Youtube (click here!).