Now there has been a lot in the press about the BRCA gene after Angelina Jolie announced her latest decision to have a hysterectomy and ovarectomy. The fact that Angelina has the bravery to stand up and share her decision is admirable and inspirational and, as I read her story, I felt the need to share the story of a ‘normal’ woman’s journey so far through the BRCA gene maze.
3 years ago my lovely, bubbly, caring, beautiful, and slightly wacky friend Jan lost her mother to ovarian cancer. Eleven months later she received a letter in the post telling her that her mother had been tested for the BRCA2 gene and had tested positive.
There are two genes that, if mutated, greatly increase an individual’s chance of developing breast and ovarian cancer. These are known as BRCA1 (Breast Cancer 1) and BRCA2 (Breast Cancer 2) genes. These two genes account for approximately a fifth (20%) of familial breast cancers. If an individual has a mutation in a BRCA1/2 gene they have a greatly increased risk of developing breast and ovarian cancer.*
When she received the letter Jan had already had to make a medical decision to have a hysterectomy but now she was faced with the knowledge that her body might be acting as a ticking time bomb for her. She knew she should be tested and yet was this really something that she had the strength to face? And yet she knew that she needed to know if she was carrying the gene, not just for herself but also to make sure her children could be informed and make the right decisions for them. So she decided to go ahead and be tested but she had another very difficult decision to make.
Knowing she was already putting her body through surgery with the scheduled hysterectomy should she have the ovarectomy at the same time?
After much talking, many tears and hours struggling to find information that would help her make the decision Jan had to decide. She knew her body would go into an immediate menopause. She had already been struggling with the physical and emotional consequences of unbalanced hormones and knew how difficult that was. And yet if the results came back positive she knew that, for her, these side effects would be more bearable than living with the knowledge that her risk of ovarian cancer was so high. So she advised the surgeon that the ovarectomy should go ahead.
Two days before the operation she got the results of the genetics test – she had tested positive for BRCA2. Jan has never been a happy surgery patient. She suffers with acute anxiety when facing anaesthesia so I was happy to accompany her on the day and help her with this through relaxation and hypnotherapy techniques and also the best anecdote to nerves – friendly chat, hand holding, hugs and laughter. But even these powerful medicines were put to the test when the surgeon came into the room to discuss the surgery. He told Jan in a very straightforward manner what would happen that day and then he noticed a letter in her file. “Ah yes he said, you are the BRCA2 lady, by the way your results are positive” Just like that! How thankful was I that I had been with Jan when she had received the letter a few days ago and that she already knew?! And yet I sat aghast as the next thing he said was “what are you going to do about your breasts?” Now this was where the friendship and laughter came into force. “Well I thought I’d get one end done first” said Jan and as the consultant left the room we looked at each other and just burst out laughing. I train medical professionals in communication and how to deliver information and engage with patients so we could not miss the irony!
So, after getting that ‘one end’ done and after recovering from the hysterectomy and ovarectomy, Jan now had her next decision to make, how should she deal with the significantly increased risk of breast cancer that the BRCA2 gene gave her? What was surprising to me was the reaction of other people! Not only did Jan have to face her own voice arguing with her in her head over what was the right decision for her. Not only did she have to face her own reflection in the mirror and come to terms with how that would change. Not only did Jan have to sit in waiting rooms with women who were suffering from breast cancer and cope with her own feelings of awkwardness when they talked to her and realised that she was considering a double mastectomy voluntarily but she also had to deal with perhaps well-meaning comments from others such as:
“But your breasts are the best thing about you”
“Well at least it’s easier for you because you haven’t got cancer”
“You can’t have that done it’s the best thing about you”
“Aren’t you being a bit over dramatic?”
But Jan being the brave and amazing woman that she is (although she hates me saying that!) has dealt with all of that and now she has the next challenge – having to live her life in limbo for up to 18 months because that might be how long she has to wait to have the operation. Obviously, and rightly so, cancer patients must get priority for the operation. The difficulty for the BRCA patient is that this means that they can be given no indication of when their operation might take place. Now that’s a tough one!
4 weeks ago I accompanied Jan to her second BRA (Breast Reconstruction Association) meeting where she had the chance to talk to women who had gone through voluntary double mastectomies. Going for the second time meant that Jan had the chance to fill in more gaps as the first time was only able to take bite sized chunks of information. I couldn’t help giggle as Jan explained that one of the things she remembered about the first time she saw the breast nurse was holding the breast prosthetic and being told that this was only a third of the weight of her boobs to which Jan replied “oh my god you can’t lop mine off then cos I’ll fall over backwards”! I have to say that this was one of the most amazing and inspirational evenings I have ever experienced. A group of 8 women shared their stories with us. They told us how they felt before the surgery and Jan was able to see that she was not alone. They all agreed that the 18 month waiting in limbo was one of the most difficult things to deal with once the decision had been made. They told us about the amazing breast tissue and plastics teams who looked after them before and after surgery and how well they explained everything and cared for them. They told us how they were so thankful that they had made the decision to have the operation. They showed us their bodies and the amazing work done by the surgery team to reconstruct their breasts. They explained what to expect from the stay in hospital and how strict I needed to be with Jan to ensure she got the rest she needed to recover. They showed us their smiles when they told us how having the operation was a hard decision but the right decision for them. So now Jan waits. And during that wait she continues to deal with her own thoughts and people’s opinions.
This has most definitely not been an easy decision for her and the surgery will not be a simple one. She will be in surgery for over 8 hours and she will need to allow her body time to recover. But the decision is the right one for Jan, for the woman she is and the woman she will always be. Many women face this decision every day and I feel honoured to be supporting one of them.
Jan supports this blog as she feels it is important that people understand that this issue is a difficult one for many women.
If you need any support in these issues, you can find more information here. *The Royal Marsden NHS Trust A Beginners Guide to BRCA1 and BRCA2