There are lies, damn lies, and statistics

The joy at the recent headline-grabbing news about Angelina Jolie's elective preventative mastectomy is understandable if you believe that her risk went from 85% to 5%. In truth that was her RELATIVE risk. Her ABSOLUTE risk of dying of breast cancer due to the BRCA1 gene was an increase of 1.7%. 

Despite passing my statistics 'O' level, I was never very good at maths. Sitting in the oncologists office, how I wished I'd paid more attention. None of the figures thrown at me made any sense. Of 100 women in my age bracket (40 - 50 years old) with the same sized tumour (2 - 5cms) and the same amount of positive lymph nodes (1 - 10) only 65% would survive 5 years without any allopathic treatment. What did that mean? I had no idea. The second opinion doctor was straighter with me. When I asked him did I have a 65 percent chance of surviving until I was 45, his answer was no. I had a 50 % chance. I would live, or I would die. 

My Dad tried to explain relative risk vs absolute risk. I was none the wiser, but I was told that my chance of surviving 5 years decreased from between 90% - 80% to 75% - 65% if I chose to reject chemotherapy, radiotherapy and tamoxifen. (The figures changed depending on which consultant I saw, and how optimistic they were with my 'data') In total, the 3 biggest guns that the NHS had to offer gave me (at best) an increased survival rate of 15 percent. Chemotherapy alone offered me just 5 percent. FIVE PERCENT? And that was without taking into consideration the potential carcinogenic side-effects.

I asked my oncologist, who are these women who have chosen to do 'nothing'? What is 'nothing'? Are they smokers? Overweight? He didn't have answers. And later I learned that statistics are actually stacked drug against drug, not necessarily against a 'clean' control group. I have certainly never been asked to be a part of any survey, and even if I were, I would argue vehemently that I have done 'nothing' to prevent a recurrence. 

Regardless of any numbers, none of the allopathic options offered to me resonated.

In my opinion, it's vital to understand that we're not a collection of body parts. We cannot chop bits off hoping to evade a systemic disease borne not of inheritance, but of toxicity and deficiency. Epigenetics tells us that it is the environment within the body which switches genes on or off. How empowering to know that we have some control, that by creating an alkaline, oxygen-rich environment, disease is far less likely to happen. Japanese women who carry the BRCA1 gene have a 65% less chance of a cancer diagnosis than their American sisters with the same inherited faulty gene, unless they move to America, then the rates level out very quickly. What does this tell us? That cancer is a disease of malnutrition and lifestyle.

Scars

Before I had my right breast removed, I couldn't imagine my body without it. The days leading up to the operation were difficult. I tried hard to prepare for it's absence, but it was impossible, inconceivable.

I never wanted a reconstruction, hating the idea of unnecessary further surgery. Besides, anaesthetic suppresses the immune system (as do the inevitable subsequent anti-biotics and pain-killers), and I was trying to boost my immune system to deal with any residual cancer. I was working hard to detoxify, so the idea of loading my liver with toxins was counter-intuitive. I disliked the idea of silicon in my body, a foreign object that would permanently remind me of what I had lost. I didn't even consider the more complicated surgeries which would involve taking fat and skin from my belly and back. I imagined a body-map of scars and a possible franken-boob. My final, absolute no-no was allowing a surgeon to 'match' my remaining, (and let's face it, after 28 months of breast-feeding, well worn) breast, to it's new perky, plastic counterpart. Cutting into my healthy breast, and leaving it potentially lacking sensitivity seemed a little crazy.

The worst part of the operation was the tubes which were sewn into the surgery site to drain off lymph fluid, and their removal a few days later. I can't honestly say that I remember pain, more bruising and tightness, which continued for some months.

Mastectomy and Lymphadenectomy scars

Naturally, it took time to get used to my new body. It was uncomfortable, and I got a shock every time I saw myself in the mirror. I guarded my surgery site with my arm, scared that my children would hurt me as they came in to land for cuddles. Looking back, I resembled a bird with a broken wing. It took a while to get full mobility back in my arm, and the area under my armpit is still a little numb. That first summer I hated my prosthesis; a hot, sweaty burden, heavy and unnatural. But I'm a sucker for symmetrical, so I persevered.

Now I wear my scars with pride, they're thin and the wounds are well healed. And what are scars if not a visual reminder of survival?

My husband, amazingly supportive throughout, has no issues with his one-breasted wife, and I still walk around naked in front of my children. They're all totally un-phased by my missing body part, if a little unimpressed by my immodesty!!!

These are intensely personal decisions, and I make no judgement of what others choose. I understand the weight of attachment to a breast and the potential loss of identity post-mastectomy. For me, I simply accept my new body, and that makes me happy.