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.