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.