Breast Cancer Awareness Month and the BRCA gene: My story

As part of Breast Cancer Awareness Month, I wanted to share my own experience of the benefits of communication between patients. 

A few months ago, I attended an event organised by an amazing charity, Future Dreams. It provides practical, emotional and psychological support to those diagnosed with breast cancer. In a beautiful pink house in King’s Cross, London, the charity runs classes, events and workshops, enabling people to meet each other and share their experiences. It also offers therapies to address the side effects of a breast cancer diagnosis, and even has a bra fitting lounge where women can obtain advice on their choice of bras and prosthesis post breast cancer treatment.  

The event I attended was a “BRCA specific - Mastectomy Show and Tell”. By way of background, I was invited to this particular event because I'm a carrier of the BRCA2 gene. This means I have a 60-80% risk of developing breast cancer in my lifetime, a 30% risk of developing ovarian cancer and an increased risk of developing several other cancers. As such, and under the NHS, I am offered annual breast MRIs from the age of 30 onwards as well as risk reducing surgery i.e. mastectomy and reconstruction. As you may imagine, when you don't actually have cancer (but are told you are probably going to get it), the decision of whether or not to undergo major elective surgery is an extremely difficult one.

For this reason, an event which enables patient to patient communication is incredibly helpful – and this is exactly what this event involved. After taking time to chat over drinks and snacks, we heard from two doctors - an oncological surgeon and a plastic and reconstructive surgeon - who went through the reconstructive options post mastectomy. Essentially, these are:

1. Implants

2. DIEP flap surgery (where tissue and fat is taken from another part of the body to reconstruct breasts)

There is also the option of no reconstruction at all – “going flat”. 

Within each option is a range of other options. There are several shapes of implants – round to teardrop to ones that expand whilst inside your body. The DIEP flap surgery is generally carried out at the abdomen, but can also be from the thighs and buttocks. There may be a choice as to whether the nipples are removed and if so, this poses the question of whether they are replaced with nipple tattoos, prosthetics or nothing at all.  Some of these decisions are clinical and will be determined by medical opinion, but others are truly personal. 

While it's excellent that there are so many options and that these decisions can be highly personalised, the choice is also overwhelming. This is especially true when you're making a decision based on abstract information, without really understanding the day-to-day effects it may have on you individually. It's a permanent, or at least long-term, decision, so is incredibly significant (of course, revisions can be done, but given the difficulties of this, you would ideally want to be happy with your first choice). 

This is where sharing experiences between patients becomes so important, and why an event like this which enabled these discussions was so helpful. After hearing about the reconstructive options, everyone was taken for a mastectomy "show and tell". Women who had the various surgeries under different circumstances - some as part of cancer treatment, some prophylactic – shared with other women their experiences and post surgical results.  

I must say that I thought it was incredibly brave and selfless of these women, and I have huge respect for them for sharing something so intimate with a room full of strangers. However, this enabled discussion and questions between everyone. How was the recovery? Can you sleep on your front? How has it affected your ability to exercise? How did you manage looking after young children? The conversations were on difficult topics, but they were positive ones. 

Talking to other patients gives a real feel of what it's actually like to go through and recover from surgery. A doctor cannot do this; they can explain risks and complications, but they cannot replicate the patient experience. For someone like me, who is presently only considering surgery as a future, but very real, possibility, it gave me an opportunity to ask questions and now time to consider the answers, understand the options and work out what's right for me. If and when I do have this conversation with my treating doctors, I am better informed in the questions I will ask and the choices I will make. 

I appreciate not everyone is in the same position as I am to take time to think through options. But with NHS waiting lists being long as they are, it would be immensely beneficial to patients if there were more events arranged like this one, so people could really understand how they might feel as a consequence of their surgical choices. Patients can learn a lot from each other, and this is not something to be underplayed.

Find out more about Irwin Mitchell's expertise in handling breast cancer misdiagnosis cases and the support available at the dedicated section on our website.