My name is Angela and this is my story.
My name is Angela and I was diagnosed with breast cancer at the age of 22 in 2008. 10 years on and I look back now and still have that moment of “what is breast cancer, how do I have it, I’m not old, isn’t it an old women’s disease”. Overall the hardest part was the lack of information available for younger women and feeling like I was alone.
My story begins in late February 2008 when I was in the middle of completing my last university subject to graduate by April. I had noticed a bruise on the side of my left breast in the mirror, which wasn’t painful or nor did it feel like anything unusual. I didn’t think too much of it. I had to see my GP that week and decided to ask what it may be. I thought I got the bruise from a bump in the breast over New Years’ time when I was out partying. My GP was not too concerned however she sent me to get an ultrasound. During this time I was stressing and studying like crazy from my intensive subject so I didn’t go and get the ultrasound done for a few months.
I graduated from university and totally forgot about my breast ultrasound. My GP called me to see if I had had the ultrasound and by late May I finally went to get it done. A week after the ultrasound check-up my GP said there was a lump in it and she wanted me to have a fine needle biopsy. This meant a needle in my breast to scrap the cell. What! I was not too concerned as I didn’t know what it all meant. Time went past again and I was enjoying life and travelling back and forth to see my then partner. I briefly discussed having the biopsy with him and not knowing what it meant if something was wrong. He said not to worry as it could be nothing but a few weeks later he had a think about things and said he didn’t want to be a part of it if there could be anything wrong with me. Shattered, I had been dumped. He must have known at the time, I look back now and think was I going to be a burden towards him? Over the years I’ve realised that this conversation started my fear of no one wanting to love me for what’s happened to me!
I couldn’t get a biopsy appointment until Thursday 10th July. When that needle went in I cried so much as it hurt, the nurse held my hand and told it me it would not be much longer as she could see I was starting to stress out. That afternoon my GP urgently called me and said she had the results, she wanted to see me first thing Friday morning at 8am, she asked me to bring a support person. I was confused why I had to bring someone; it still never occurred to me that it was bad, she told me not to panic and we would have a chat in the morning. At the time my Mum was living four hours away so she couldn’t come and hold my hand; my work colleague came with me that Friday morning.
My darkest day 11 July 2008 I got to the GP’s at 8am and she called me in straight away with my work colleague. The words of my GP, “you have cancerous cells in your biopsy and it’s breast cancer”. I heard various other things but it was a blur and I didn’t understand what was happening. Luckily my work colleague was with me she was asking questions and making notes. All I can remember is my whole world fell, was this for real was it possible to be so young and have breast cancer, how is this possible? I cried for days until my Mum came to stay with me. I still did not believe it was possible to have breast cancer at 22.
I can still hear my GP on the phone after that conversation. It was surgical clinic day at the hospital and she was trying to get me an appointment straight away with a breast surgeon specialist. I hid under my jumper and cried on my work colleague’s shoulder for ages, I was so confused and still not understanding what was about to happen. When my name got called the specialist sat down next to me and confirmed that I had cancerous cells and we needed to get them out. Within a week I was booked for a lumpectomy, had one lymph node removed which came back clear. My breast remained blue from the nuclear dye for months afterwards. I recovered for two weeks at home then I was told by my surgeon that I would need to have a mastectomy for a better chance of long term survival; they didn’t clear the margins when they took the lump out. I was diagnosed with Invasive Duct Carcinoma in-Situ (DCIS) Grade 2, PR+ ER- HER2-. When my world crashed. Why Why Why, I simply don’t understand, the questions started and I had lots of negative thoughts at this stage. My boob was already now deformed and I had scars, I started to feel like no one would ever want to love me again.
That day my specialist had asked me if I wanted children in the future. Of course I do, it was my dream to be a Mum one day. My oncologist and breast surgeon agreed that I would be fine to do IVF and collect some eggs; they will just need to monitor my hormone levels. Well wasn’t that fun experience! Over 30 needles in the space of two weeks just for the egg retrieval, however it was a success and I have my future sorted out now just in case.
A week later around September, I began six chemotherapy sessions every three weeks, and just before my 23rd birthday I was hairless, by December I had completed chemo. I found it hard to say goodbye to my long hair as it kept falling out and shaving it was so upsetting. During the treatments I did not get really sick. I got a fever a few days after and I always had insomnia the night of; I managed to then sleep a lot during the week and gained a fair bit of weight. During this time I started monthly injections of Zoladex, which made me premenopausal and I was always experiencing hot flushes. Living in North Queensland in the heat didn’t help.
During this time I felt it was so hard to get any information about young women and breast cancer nor talk to anyone whom understood. My breast care nurse was always around for me, attending my appointments and tying to give me information for all my questions, but as I was only in my 20s it was hard to give me the answers I was looking for. I was the 1 in 100,000 to be diagnosed in my early 20s, this was my statistics. Every treatment I did was based on statistics rates for my age. My breast care Nnurse kept trying to help find other younger women throughout Australia for me to chat with, it was very hard, and most of the women in North Queensland were in there late 30’s with children. I felt so alone being so young.
Just after my first chemo treatment and my friends organised a concert to help me out financially and cheer me up. We raised money and everything was pink. Band members from Shiftlock organised the concert with my best friend Kylie. They named the concert, “Pink Angel”. The bands “Shiftlock, Six Hole Theory and Approaching Aver” all played their music and a few business volunteered their staff for security and worked in the canteen to make the night an enjoyable one. Everyone wore pink and even my male friends dressed in a tutu and pink for me. I will never forget that night and the effort my friends put in to help me through this experience. Also during this time was the global financial crisis (I work in finance) and I was made redundant and someone rear ended my car. What else could happen! Why was all this bad luck happening? They say bad luck comes in 3’s, and sure did I get it.
By January 2009 my oncologist told me that I need to start taking Tamoxifen every day, a hormone replacement therapy drug, for at least five years to help reduce the risk of my cancer coming back. By end of March after my body started detoxing all the chemo toxins I was booked in to have my mastectomy and reconstruction. My best friend, Kylie had arranged me a Bye Bye Boobie dinner party the weekend before with my supportive friends as she was trying to ease my anxiety.
The night before my operation I saw on TV the A Current Affair report with Krystal and Stacey. I managed to have a quick online chat to Krystal after the show aired. This is when I joined Pink Hope and finally felt I was able to talk to other ladies my age about their experiences. The following day I had a Tram Flap mastectomy and left breast reconstruction. I spent a week in hospital my new left breast is my abdomen wall and it included a tummy tuck but left me with a huge scar. This operation was a long recovery. I had over three months off work, was hunched back for the first month with pain mainly in my tummy not breast. Over time it got better and the pain went away and I went from weekly hospital appointments to monthly, then half yearly and most likely yearly for the rest of my life.
Update 2014 I finally finished my long five years of Tamoxifen. All I ever wanted was to feel was normal again, but what is normal anymore? I was so happy no more hormone replacement therapy, I hated every day being on this drug. I had many ups and downs on it but the symptoms seemed to ease in my third to fifth years and time flew on it. Six months later I had my hormones tested once I started getting my periods back and my levels are back to normal and I’m fully functioning. At this time I finally started to accept that this happened to me and I’m ok about it however I still do feel like I lost my early 20’s and all the fun times I was meant to have. I started to focus on my career and my future and hopefully meeting a nice guy.
Genetic Testing Battle My surgeon wanted me to be tested after I got diagnosed. Self-funding it wasn’t an option at the time. It’s been a battle trying to be considered eligible for genetic testing through the QLD Health system. My surgeon and oncologist had many meetings and letters written to the Genetics Team to have me tested as my case is unusual considering my age and positive results could impact my future treatment plans. After a few meetings with the Genetic Counsellor over the years I was declined again and again due to the fact that I had no family history of cancer. Then in 2016 I was contacted to say that I would be able to have the TP53 Genetic Test to see if I had any inherited mutations. This came back negative. This opened up more unanswered question for me.
Then in February 2017 I saved enough money to pay for the test myself, it’s an expensive test which I done via Color. It took a few months and the results were no gene mutations detected. The results made me feel like I was just super unlucky. I spoke to my surgeon about my results at my review that year, he was happy that it came back negative; this meant that I would not have to consider having the other breast removed and I wasn’t at a high risk of it returning. I guess I should feel happier no more surgeries or treatment, just the yearly scans.
Happy 10 years 11 July 2018 I felt so nervous this year right up to the 11th of July. I don’t know why, I should be happy and maybe relieved? I asked a few other ladies what they did for their 10 years. I had lots of anxiety coming up to being cancer free for 10 years. I knew a few ladies that got diagnosed with secondaries at their 10 year mark. So I felt even more nervous and so scared. When I had my yearly scans at the hospital they came back clear, the relief set in.
I think about my journey and how most of it is a blur now. The earlier years were very hard to deal with especially struggling to find any information related to young women with breast cancer. I finally feel like I am now free. Back in 2017 I met an amazing guy named Josh whom has accepted me and my health journey. I was so afraid for such a long time that no one would love me nor accept what’s happened to me but Josh took that feeling away and made me feel so relieved. We celebrated my milestone with a day off work, nice dinner.
Going forward in 2019 I am in a happy place with my partner Josh and our future plans. I still have my yearly scans and reviews with the specialist and at this stage I will keep doing so. Family planning has been given the go ahead with added high care monitoring of my hormone levels when the time comes. This has given me some peace of mind. Then after the family planning the specialist and I will decide what my next steps are for staying cancer free.
Overall cancer does not discriminate in age and I am very fortunate of my journey. I am still young and my life as only begun. I’m older and wiser and happier and those years of being sick are no more.