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Kylie’s Story

12 Jan 2016 by Krystal Barter
Kylie’s Story

My name is Kylie and this is my Pink Hope story.

I am 41 years old, a Pink Hope Outreach Ambassador, a Maternal & Child Health Nurse, the eldest of four girls, a wife to my husband Lachlan and a mother to three beautiful daughters, April 7, Ruby 5 and Marli 2.5 years old.

At the age of 40 I was informed that I was high risk of breast cancer through a possible genetic mutation created by my parents. We had no known family history of breast cancer until I had two sisters diagnosed with an oestrogen based breast cancer within 7 months of each other at the age of 35 and 38 in 2014. Both requiring chemotherapy and bilateral mastectomy along with a family who were in complete shock, as we were suddenly caring and supporting my sisters with little knowledge of how with previous generations being cancer free.

At the end of treatment my youngest sister, who was first diagnosed, was advised to have genetic testing for breast cancer.

After a number of months my sister received the results “inconclusive result for breast cancer gene mutation”, which simply meant they could not find the ‘common’ breast cancer gene mutations but in time they may find ‘our’ gene mutation.

It was recommended my other sister, not yet affected by breast cancer and myself attend the Austin Genetic Clinic for more answers on what the genetic results meant for our future. We both attended with our husbands to be informed that both of us were at high risk with between 50-100% of developing breast cancer. We were informed of our options of screening every 12 months, commencing the medication Tamoxifen that was ‘highly’ recommended by the oncologist who was invited into our consult at the time, or we could consider a risk reducing bilateral mastectomy. As we left the clinic speechless, left only holding a flyer on Tamoxifen clearly detailing the side effects of the drug, but with no information pack on all the information that was discussed or what to do with our future, no contacts for support or referrals to specialists who could further assist us. We both felt helpless and emotional.

Within minutes of returning home that day, I will never forget my sister calling me to tell me she had found a support group for us, Pink Hope. What was a day of feeling hopeless and empty became a day where I didn’t feel alone and frightened of my future. This was the door I had been searching for that was for me, after a world that had been consumed of breast cancer in the last 18 months. We were both welcomed with such open arms, booked into their annual Pink Hope conference and talking to other women “like us” for support.

Over the next few weeks I had to carefully consider my options with a lot of emotion involved having recently supported my sisters through their breast cancer journey. I did question was it the right time to consider myself when my two sisters were still recovering from their treatments. But at 41 years old I didn’t have time on my side. My husband Lachlan and I had to not only think about my health, but we had to think of my future as a mother to our daughters.

After being reviewed by the now “family breast surgeon” and a plastic surgeon in February 2015, it was decided that I would have a risk reducing bilateral mastectomy with a DIEP Flap (Deep Inferior Epigastric Perforators) meaning they will use my tummy tissue to recreate healthy breasts free of cancer.

In May last year my sister and I nervously attended our first Pink Hope Conference and it was amazing, overwhelming, educational yet empowering. We met many woman who had either had risk reducing surgery or considering it for the future. I knew that I was in the right place and was ready to book my surgery. I now identify myself as a “Pink lady” thankfully to my sisters and Pink Hope. “Pink lady” is a name that I have given myself and to the friends I have meet through Pink Hope, who have welcomed me, empowered me and supported me on this journey. Pink represents the breast cancer, but as I am not a breast cancer survivor, I have added the title lady to give it a meaning of being a strong independent woman who is taking control of my future and embracing my femininity through this process.

Although my surgery was booked for November 2015 I needed time to prepare myself physically, emotionally, mentally and spiritually, but I also had to prepare my family and friends for the decision I had made, which for some it was incredibly radical but for many it was brave.

I did everything to prepare myself for my surgery, apart from a few visits with my surgeons I consulted with a naturopath for immunity building, psychologist to deal with the grief and loss of losing my breasts and the changes to my body, meditation to calm me and a kinesiologist to assist me spiritually. Not to mention numerous and very personal questions to my new found “Pink lady” friends and support group of Pink Hope.

As I prepared a ‘Bye to the Boobs” party to rally my sisterhood around me and give a final send off to the boobs that breastfed my three daughters, I decided to share the night with Pink Hope and raise awareness to my sisterhood of amazing woman who were supporting me through this journey. We raised over $700 that night and I felt empowered to become an Outreach Ambassador for Pink Hope. If this is what I could do in one night with 30 woman, what could I do for the future as an ambassador?

On the morning of my surgery, Saturday 7th November 2015, I was surprisingly very calm and ready to face the challenge ahead of sitting still for the next 6-12 weeks and allow everyone else to care for me. The surgery took 9.5 hours and it was a complete success, as my surgeon tells me, however there were a few hiccups along the way. I did require a number of blood transfusions post-surgery and I am forever grateful for those five people who donated their blood to assist me in my recovery. However I did have to return to hospital for another week for an infection in my abdomen wound which required further surgery to assist it to heal. I have had further wound issues but manageable at home. I am now 9 weeks post-surgery and not able to drive at this point and only manage light duties, but I expect in the next few weeks I will have returned back to normal activity and back to work. Although it has been challenging physically, mentally I feel fantastic, that instant relief I had when I woke up from surgery and then given the news two days later that all my tissue was clear of any malignancy was overwhelming. I did what I set out to do, I reduced my risk of breast cancer to less than 1% and was brave to accept the gift of choice I was given by my two amazing and brave sisters who I am proud to say are now breast cancer survivors.

My passion for becoming an Outreach Ambassador for Pink Hope is to give back to them for what they have given me, but most importantly I want to raise awareness and funds for Pink Hope, as one day my daughters will need them.

I want to make sure they are able to help my daughters make the decisions that are right for them.

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