The Choice to Have Preventative Surgery is Never Easy

23 Sep 2014 by Krystal Barter

Katrina, a Pink Hope Outreach Ambassador from Victoria has written a blog post after seeing and reading the positive and negative coverage in the media since Angelina Jolie shared her BRCA1 gene fault and decision to have preventative surgery. She urges us to be respectful and to remember that the women who have chosen preventative surgery have done so after much research, thought and professional advice.

Kat Wilkins

So I have spent this week listening to people discuss Angelina Jolie’s decision to have a preventative double mastectomy due to her carrying the BRCA1 gene mutation, which dramatically increases her risk of developing breast and ovarian cancer. Those nearest and dearest to me will already know how close to home this story is for me – I have also had a preventative double mastectomy.

The reason I have decided to write this post is because with so much discussion and debate raging over this issue right now, and probably into the future, I want it to be an informed and respectful discussion. It’s such an important but controversial issue – it’s confronting for people, I get it! It is however a very complex and personal issue. Often the people I hear talk about it don’t have any understanding of the complexity of the issue nor what women go through to make this kind of decision. I have read articles this week suggesting that women are scared into “having their boobs chopped off” being told it is their only choice. This kind of sensationalist crap does no-one anyone favours, because it’s just simply not true.

Women who make this decision have been identified as high risk of developing breast and sometimes ovarian cancer, high risk enough that a mastectomy is presented as an option by medical practitioners who specialize in familial cancer (I cannot stress this point enough). To suggest a woman makes a major decision such as this on a whim is beyond insulting. It took me 10 years, extensive research, meeting regularly with familial cancer specialists and lots of counseling to make my decision. And by the way no doctor in their right mind would perform such a surgery without first believing there are significant enough medical reasons for it.

My journey began a long time ago, when I was three actually, when my mum was diagnosed with breast cancer at age 35. A few years later her sister was diagnosed and died from breast cancer in her 40s. Unfortunately I don’t know if I have a genetic mutation because my mum also passed away from secondary’s and there’s no-one to test for a mutation, so my journey has been one of uncertainty. The fact I don’t know if I have a mutation has been controversial in itself – how could I possibly make such as a decision when I don’t even know if I have a mutation (I grant you – it is a dilemma)? Looking for a genetic mutation sounds simple, right? It’s not. According to the familial cancer specialists at the Peter Macallum Familial Cancer Centre it’s like looking for a spelling mistake in an encyclopedia, and it gets even harder if they can’t test the person who has had the cancer first to help identify what they are looking for. I could have the test (which by the way costs around $3000) but the chances of there being a conclusive result is extremely unlikely.

There is much talk about the BRCA1 and BRCA2 genes, these are the identified genes that if they are mutated cause a higher likelihood of breast and sometimes ovarian cancer. However these only account for approximately 20% of the gene mutations, the other 80% of genetic mutations for breast cancer there is very little known about them. So my decisions had to be based on the facts of what I knew about my family history and what that told the medical specialists about my risk.

In my late 20’s I was very fortunate to be referred to the Peter Macallum Familial Cancer Centre and they were brilliant. They looked into the medical records of my mum and my aunt and gave me so much information and support in making my decision and it was so reassuring to know I was in such capable hands. The advice they gave covered a range of options including the importance of healthy lifestyle and the option to continue to just be vigilant, which for me required 6 monthly check-ups at the Peter Mac and yearly MRIs. Making the decision whether or not to have surgery was, as it is for anyone, very difficult especially because I don’t know if I carry a mutation. But in the end, when I turned 35, the decision became very clear to me. I lived a life from three watching mum struggle with cancer, looking after her when she was sick and seeing her lose so much of her life. She never got to see me get married and never got to hold any of her grandchildren. I didn’t want that for myself and I certainly didn’t want it for my children.

My point is this – don’t judge until you know all the facts and have done your own research. Have your own opinion on the issue, that’s great, but make your opinion an informed one. Speak to women who have made this decision and learn about their story and why they made their decision and what they went through making it. Challenge your beliefs and you might just be surprised what you learn.

Most of all please be respectful when discussing this issue, I have seen women so upset this week by some of the very disrespectful ways people are discussing this issue and talking about the women who have made this decision.

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