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Tuesday, February 22, 2011

Meet My Friend: Angela - Her Brave Decision

I am in awe of my friend, Angela. Awe. 

I have no idea, if I were in her shoes, how I would cope with making the decision that she has had to make recently. How I would cope knowing what she now knows. But as you will find…Angela (rightly) believes knowledge is power, and having a supportive husband, family, friends and a will to see your own children grow old, made Angela's decision a whole lot easier.  

Here’s Angela’s story…

Last November I was diagnosed as having the BRCA 1 gene. This gene gives me a higher chance of developing breast and ovarian cancer (around 80 – 90% for breast cancer and 40 – 60% for ovarian). It wasn’t a huge shock to me to find out I was positive, and I am so glad I know.
I have a history of breast cancer on my mother’s side of the family. My grandmother had breast cancer at the age of 40. My aunty had it twice: once at 48 and then again at 52. My cousin Sally first battled breast cancer at the age of 37 and then again three years later. She has just undergone her last round of chemotherapy and, fortunately, her latest scan is clear. It was during her first round of breast cancer that Sally had the gene test done – it came back positive. Sally was the first person in our family to be tested. At the time, her Breast Surgeon discussed the possibility of her having a double mastectomy but she refused, a decision she now regrets, as the cancer came back last year.
My mother decided to have the gene test last September. Her test result also came back positive. As soon as I knew her result, I made an appointment with the Sydney Genetic Clinic. There was no way I was going to sit around wondering if I had it too.
It’s not a simple test to have done. I had an hour long, quite intense meeting with a Genetic Counsellor where we discussed the outcomes of the test and what my reactions to either result might be. The test itself is a simple blood test, but two tests have to be done twenty minutes apart to make sure the results are completely conclusive. Another appointment was made at the time of the test to meet with the Genetic Counsellor and an Oncology Professor for four weeks’ time to discuss the results. 
I knew even before I went to that appointment that my test would be positive. I just had a feeling.
I went to the appointment having psyched myself into knowing the result would be positive. I did feel nervous: I was about to hear something that was going to have a big impact on my life. My husband John knew I felt terrible, and when we got to the hospital he turned to me and said, “No matter what the test result is, it’s all good news. If it’s negative - then that’s a great thing, and if it’s positive - then that’s a good thing too, because we can take measures to prevent it.” 
I remember sitting down with the Professor and the Genetic Counsellor. The Professor didn’t beat around the bush, “I’m sorry, unfortunately you have tested positive.”
Wow – it was as though I had been slapped in the face. I felt tears well up in my eyes and sat there completely shocked. I really thought I had been prepared for this result, but when reality hit it was obvious I wasn’t. In that second I felt as though my life had completely changed. I sat there in a daze whilst the Professor whirled off statistics and gave me referrals to a Breast Surgeon and Gynaecologist/Oncologist. Luckily John was with me, because I didn’t hear a word! I went home and called Mum - she was devastated for me and in her silly way blamed herself for passing the gene on to me and maybe to my twin daughters. I remember crying and then getting angry with myself – I shouldn’t be crying. There were women out there who really did have breast cancer. I was lucky. I had received information that could save my life in the future. Get over yourself, Angela!
John was right. Although the test result was positive, I now had the opportunity to do something about it and beat the odds – in that way, I’m blessed. I can be in control.
It’s been three months since my test result. In this time I have met with my Breast Surgeon and Gynaecologist/Oncologist. The Breast Surgeon was wonderful. She gave me two options: the first is to have a preventative double mastectomy and reconstruction (this involves the removal of all breast tissue including the nipples, then a plastic surgeon will reconstruct them). The second option was to be vigilant. I can have ultrasounds and mammograms done every six months. However, the Doctor warned me that if I took this approach I could experience quite a roller coaster of emotions – feeling anxious as the tests approach, anxiety during the test period as any lump found is biopsied, and more anxiety as you wait for the results. I have had lumps tested in the past and knew exactly what she meant by feeling anxious – it’s not a fun couple of weeks! I knew that if I took this approach, I would become obsessed and be constantly feeling my breasts for lumps, and if I felt something I just know I would make myself sick with worry!
I don’t just have my breasts to worry about though. I also have an increased chance of ovarian cancer. Ovarian cancer is harder to detect and when it is detected it is often at an advanced stage. The Gynaecologist has told me that after the age of 40 (I am now 38) I can have my ovaries removed to lower the risk. This will mean I will enter early menopause and will have to go on Hormone Replacement Therapy – lucky me!
At the moment though I am focusing on my breasts. I have decided to take the radical option and get my breasts removed. They’re coming off in June this year! To me, I have no choice. I have two beautiful girls and a wonderful husband. I want to be around for them. I am so privileged to be able to have this information that enables me to do something about it. I can’t sit back and do nothing. I don’t want to get breast cancer in five years’ time and think,‘I had the opportunity to do something – why didn’t I do it...?’
People have asked me if it has been a hard decision to make. It wasn’t. At the moment my breasts feel like two ticking time bombs just waiting to explode! They have served me well in the past, but it’s now time to say goodbye. I will have them reconstructed though as I do still want to look and feel like ‘normal’. During my operation the Breast Surgeon will take them off (including the nipples) and then my Plastic Surgeon will come in and reconstruct them. Easy!!
My Mother, who is 69, is having her double mastectomy and reconstruction next month. She is a very fit and healthy woman and I cannot ever recall her having ever been sick. However she has met with a lot of opposition towards her decision. People see her as being too old to have such a big operation and have been quite forward (and rude) in telling her so. This, in turn, has quite upset her - but fortunately she has stayed strong and is sticking to her decision. My family want her to be around for many years to come!
I have only told close friends, and they have all been extremely supportive - something that has made this decision so much easier for me. I was also fortunate that a close friend from school had a friend who had the operation done last year. I have met with her and she told me it was the best thing she has ever done. She also let me look at and touch her new breasts – quite eye opening!
Talking to my cousin, Sally, has also reinforced to me that I have made the right decision. Sally has three young children and said that the last four years of her life have been “absolutely horrific” and she wishes nobody to go through what she has. She said she just wishes she had taken the “damn things off” when her Surgeon suggested it, but vanity got in the way. Sally has basically ordered me to have a preventative mastectomy!
For me this has been a relatively easy decision to make. I refuse to let this cancer gene control my life, and will do what I deem as necessary to change its course. There could be a chance that I will never get breast cancer, but the chance of getting it is much bigger – and I don’t want to take that risk to find out...

Thank you Angela. You’re amazing. A-MAZ-ING. An inspiration to many. x

I'll keep you posted on Angela's progress after she undergoes surgery later this year. 

If you have any concerns about your risk of breast cancer, please see your GP. They can point you in the right direction.

Images: We Heart It

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