My name is Niki and this is my story. I am 27 years old, and when I was 25, I was diagnosed with Breast Cancer.
November 30th 2016 I was in the shower getting ready for work. My mum always encouraged me to feel my breasts as I was growing up, so I was doing a routine self-examination in the shower. I noticed a small lump, the size of a 10c coin. I told my partner about it, but wasn’t overly concerned and thought I’ll make an appointment down the track to get it checked out.
When I arrived at work, I told my supervisor about the lump and that I’m getting more and more concerned about it, so he advised I leave and go to the doctors, as I would be distracted by it all day. As I was on my way to the GP, I called BreastScreen Australia asking if I could book myself in for an appointment. As soon as they asked for my age and I told them 25, they said they can’t do it and hung up.
I saw my GP and she referred me to an Ultrasound. Once the result came back, she had a feel and told me that it was just a cyst and I had nothing to worry about. I asked what should I do if it grows or if it hurts and she told me to take Panadol and that it shouldn’t grow.
2 weeks later, I had emergency surgery (laparoscopy number 5. I also have Endometriosis), for a ruptured cyst in my right Ovary and removal of my appendix. I was back at work 1 week later.
December 29th 2016, I had a dinner booked for my partner’s birthday! I noticed on our “fancy night out” that I spent most of it scratching my right breast. It was really really itchy and red but I thought all the scratching and bacteria under my skin was causing the redness.
The next day it was my partner’s birthday so we went out during the day for a bit and noticed a bit of growth in my right boob. I stopped past my mum and dads house on the way back home and mum recommended I go to the hospital.
NYE, Dec 31st 2016. I woke up that morning and noticed that overnight, my breast had grown significantly and it looked very angry. I turned to my partner and I told him that it was time he take me to the hospital.
He took me to the Royal Women’s Hospital in Melbourne and I was admitted at midday. As it was during the holiday period, there were no specialists available at the time. They asked if I had ever had a mammogram done and I replied with no. I had 2 ultrasounds that afternoon and they told me that they “think” it’s mastitis.
I spent NYE watching the fireworks in Ward 5A aka the Complex Ward. With women whom I have never met, my partner and nurses, I was a bit anxious and scared about what was going to happen over the few days. It was really frustrating and no one knew what was wrong with me. Blood tests were coming back all clear and nothing was being picked up in the ultrasound.
Finally on 1st Jan 2017, a woman by the name of Beatrice came into my room and introduced herself as the Breast Fellow who is working Prof Bruce Mann to get to the bottom of my problem. I was booked for a Mammogram that morning.
After my mammogram, I was sitting in the waiting room and after a couple of minutes, 6 people walked out of a room and the woman who did my mammogram, started walking towards me. At that point, I knew something was wrong and that they had found something. She advised that she needs to get another scan and that an MRI has been booked for straight after that.
After both scans, they took me back to my room where my parents, my partner and I would be waiting for the results. A couple of hours later, the Breast Fellow, Ward Nurse, Breast Care Nurse, Counsellor and Social Worker came in. The Breast Fellow sat next to my bed, held my hand and said “I don’t know how you went through that scan, but we’re sorry to tell you it’s breast cancer”. My initial reaction was shock, but then I broke down and started to hyperventilate. My mother started to raise her voice at the breast fellow asking how she could diagnose me with breast cancer before doing any biopsies. I was wheelchaired out of the hospital to get some air and to process this heart breaking news.
They wheeled me back into a different room as I couldn’t go back in that one and the breast fellow walked in and I looked at her and asked how long I have left to live. She advised that they don’t have any answers for me until I have further scans which is what the rest of the week in hospital consisted of.
The week after I would be meeting my Breast Medical Oncology Surgeon at the Royal Melbourne Hospital to get all my results. She told me great news, it’s “only” micro-invasive DCIS. Although to me, it was still breast cancer regardless of what stage it’s at.
Before my week full of appointments at Peter Mac, I made a time to meet with my gynaecologist as I had questions such as “will my endometriosis get worse?” “what can I do to protect myself and my eggs from chemotherapy?”. I wanted to see what my options were. It was decided that once I had my mastectomy in my right breast to remove the tumour, I would do IVF/Egg Collection and then Zolodex.
I met with my Plastic Surgeon and Breast Surgeon once before my mastectomy was booked in. I woke up in excruciating pain in which the pain management team was only able to settle with Ketamine. My body is quite immune to pain medication and once the drainage tube was taken out, I started the process of IVF.
The day I had my eggs extracted, I started the Zolodex injections (which went for 6 months), I had the weekend to recover and started Chemotherapy and Hercepten (as I was tested to be HER2+) on the Monday. I was also given the option of scalp cooling throughout Chemotherapy. I had the Paclitaxol, once a week for 3 months and every 3rd week I would also be doing Herceptin/Trastuzumab which went for 12 months. I had my last Herceptin on March 8th this year.
Needless to say that I kept my hair, but the scalp cooling was really really painful and at some times quite unbearable. I had a 5 week break before I started intensive radiotherapy to my chest wall. That was every day for 5 weeks. I had 25 rounds of Radiotherapy in total. At the end of it, I was cracked, peeling, bleeding, pretty much a 3rd degree burn which hurt…it was all as suspected but nonetheless, it wasn’t easier.
In October 2017, I had my routine echocardiogram booked, I had a high temperature from the night before but took Panadol and went to bed. I was a little worse for wear when I walked into the hospital that morning and after my scan, I requested to see a nurse. They admitted me that same day and I was in the for a whole week. I had a Bacterial Skin Infection thanks to the lovely Radiotherapy wounds.
From the day of my diagnosis on Jan 13th 2017 for 11 months, I tried to convince my breast surgeon that I wanted to have a prophylactic mastectomy on my left breast. I was denied almost every time. I would be told that I needed a psych evaluation, I had to get a second opinion from a different breast surgeon and would be asked questions like “What if you want to breast feed one day?”. Eventually I had enough and thought well if my breast surgeon didn’t want to do it, I’ll find someone else who will.
Eventually she agreed to do it but I found it to be ridiculous that I had to do the convincing for something I was so head strong about.
I am currently sitting at home, recovering from my prophylactic mastectomy. There are many young women out there who aren’t given options about certain things. IVF wasn’t mentioned once with my treating team until I brought it up. I guess suffering from Endometriosis has a plus side…to be more resilient in what I want, especially when it comes to my future.
I am also Hard of Hearing and was born that way. I worked closely with BCNA on their Breast Cancer with a Disability Project and participated in a video for them. I am also quite active on Instagram surrounding my journey through all of this.
I understand that not all journey’s are the same and it’s important that people are aware of that.