My name is Judy, I am a breast cancer survivor and carry the BRCA1 gene mutation. This is my story.
The 17th October 2006 started out as a normal morning for me. I got up and went off to have my shower in preparation for work. Getting out of the shower I realised that I had forgotten to bring a bra, so I went back to my bedroom. Walking past my mirror, something caught my attention. I stood in front of the mirror but couldn’t notice anything different. I reached my right arm up to scratch my head when I noticed dimpling at about 10 o’clock on my breast. Not thinking too much about it, I proceeded to get ready for work. At work I kept thinking about it, so I rang our local Doctors office and made an appointment for the next day. I didn’t say anything to my husband Garry, or two children, Brooke 17 and Matt 14.
I went to my appointment the next day, not thinking that my life was about to change forever. My Doctor was amazing. He told me straight away that it was cancer. While I was processing this, he arranged for one of his nurses to go and get Garry from work. (We live in a small country town where everyone knows each other). After Garry arrived, we went through the process of what to do next. An appointment was made for a mammogram and biopsy to be performed the next day in Swan Hill.
Heading up the next day for my first ever mammogram (I was only 43), I still kept thinking that why me? Six months earlier we had buried Garry’s father due to cancer and 18 months earlier, his mother also due to cancer. How could I tell my kids. In less than two years my kids had lost their beloved grandparents and now their mum had cancer as well. I made a decision then that I was going to fight this insipid disease. My kids were not going to lose their mother.
An appointment was made to see a specialist later that afternoon. Garry and I walked in to see him and he confirmed that it was breast cancer. He asked us where we wanted to go and Garry said Peter Mac in Melbourne. An appointment was made the next week on Tuesday to see Professor Michael Henderson.
The Professor was amazing. He allayed many of our fears and surgery was booked for Thursday 9th November. We drove the four hours home ready to let our family and friends know. Brooke was about to start her exams for year 12 and we debated whether to let her know but in the end we told her as we didn’t want her to hear it from anyone else. The support we received from our families and the community was amazing.
Surgery went well and I was home two days later. They performed a sentinel node biopsy and lumpectomy. My tumour was 24mm Gd2, ErPos, Her2. 3 sentinel LN’s negative Negative on Cis1 1. Unfortunately I got an infection in my wound and was hospitalised five days later for five days.
Chemotherapy and radiotherapy were advised for me. I had my first chemo on the 30th November. Four days later, Brooke had her Valedictory Dinner. I can remember going to the hairdressers for a blow wave and joking with the hairdresser that if my hair starts falling out, stop. I was so proud of Brooke that night. Two days later I was in the shower, washing my hair when clumps of hair came away in my hands. It was then that I shed my first lot of tears. A couple of days later I asked my girlfriend to shave off the rest of my hair. I needed to have some control over my looks.
After two more rounds of chemo, 21 day cycle, I went back to see the Professor. More surgery was needed. There were still cells in the surrounding tissues. Surgery was booked for Feb 20th. This time no infection. Yay.
My radiotherapy was booked for 30 sessions starting April 17th. I made the decision to have it in Melbourne. The apartment I had was fantastic. I can still see the hot air balloons floating past. I had never experienced an ANZAC Day march in Melbourne before so was there for that. A very moving experience. Over the six weeks I was able to take many walks, before the fatigue took over. Melbourne has some amazing buildings and parks.
The burns I received from the radiotherapy were quite painful and gave me many problems when I went home. Our local District Nurses came daily for weeks to do my dressings. I wouldn’t wish them on my worst enemies.
Fast forward 18 months when I was offered reconstruction. I pondered this for a while but then decided why not. I had my surgery in August 2008 but unfortunately due once again through infection and just my body, it failed. The following May, I went in for another surgery to reconstruct. Guess what……. Infection again and it didn’t work. I made the decision then to just stay with half a boob.
In December 2012, my younger sister Tracey was diagnosed with breast cancer. This rocked my world. She wasn’t supposed to get this. I didn’t want anyone else to go through what I had, and what I had been through. Tracey’s tumour was the complete opposite of mine. She had her breast completely removed. Her chemo was a longer cycle, and fortunately she didn’t need radiotherapy. Fortunately Tracey recovered and we had many jokes about ‘George’. Her name for her prosthetic.
More bad news was to come for our family. In January 2014, my niece (another sister’s daughter) was diagnosed with breast cancer. She was only 31. Yvette’s tumour was exactly the same as mine. Yvette underwent a mastectomy, had chemo and radiotherapy.
It was during this time, that Angelina Joile went public with her BRCA1 diagnosis. Alarm bells were going off in my head. I wondered if I had this defective gene. When I was diagnosed, I thought that I would be the only one in my family to get breast cancer. Now my sister and niece were diagnosed, maybe there was a connection. I made an appointment with my Doctor, who actually said to me “why would you want to know”. Ok I thought, maybe he was right. I just need to get on with my life.
A few days later it was still bothering me so I rang Peter Mac to ask about it. They put me in touch with the Familial Cancer Clinic and an appointment was made to speak to someone by phone in Bendigo. I needed to get my family history organised to see if there was any history of breast/ovarian cancers in my family. The upshot of it was not pretty. On both my mothers and fathers side women had a lot of ‘women’s business’ problems. My mum’s sister died of ovarian cancer as did one of my dad’s sisters. Two of my dad’s sisters also died of breast cancer. Things were not looking good for me.
I met with Morgan Murphy in Bendigo who with my notes did a comprehensive family history. He said that with my family history, chances were I did have a gene mutation. I was sent for a blood test. These results would take about three months to get. As Garry and I were going on a cruise in early August, I didn’t want to know the results until after the cruise.
I went back to Bendigo on the 27th August 2014 and met Alexandra Lewis, an Associate Genetic Counsellor, who informed me that yes I do have the BRCA1 gene mutation. Her boss (who I have forgotten her name) was also there. She wanted to meet me as my family genetics were amazingly strong (unfortunately). They both went through my options with Garry and myself. The upshot was I needed to have both an oophorectomy and bilateral mastectomy. We also needed to get Brooke and Matthew tested as well as my brother and sisters.
I made an appointment with Professor Grant, who would do my oophorectomy and on Wednesday 29th October I had my operation at the Mercy Hospital in Melbourne. I ended up having a few complications during the surgery and was in for longer than expected. After being released, my body once again decided that I needed an infection in my wound. I was readmitted to our local hospital for another week on antibiotics. Six weeks scheduled off work became 10 weeks. Very frustrating.
On the 22nd April 2015, I met with Professor Henderson regarding my bilateral mastectomy. I was put on the waiting list. I had done a lot of soul searching as whether to have reconstruction or not. I decided against it. My body kept giving me infections, and both of my reconstructions after my lumpectomies failed, so why put myself through it for it to maybe fail again. To ensure that my decision was one made of sound mind, I had to speak to Katya, a counsellor. I saw her on the 12th May and she agreed that my decision was the correct one for me. I enjoyed going home to Garry and letting him know that I wasn’t crazy……. He stills doubts it though.
On Monday the 15th of June, I received the phone call that surgery was going to be on Thursday 18th June. I had 64 hours notice. My amazing daughter Brooke organised a ‘Boobs Off’ party for the Tuesday night. What a great night of laughter and all things ‘Boobs’
Waking up from surgery was a frightening experience. Once again my body played up on me. I was in intensive care. I spent three days in there, receiving the most amazing care. I was allowed home the following Monday and determined to do everything right. I slept in the chair only getting out of it to go to the toilet. Guess what…… Once again infection. Once again five days in our local hospital. During this whole time I still had one drainage tube in and our local district nurses were coming daily to empty it. I had the tube removed a week later. What a relief!
This was to be short lived as fluid was still pooling in my chest wall. I was having that aspirated every three or four days. Over the next six weeks, the fluid was still being drained so on the 15th September, a tube was reinserted into my left chest wall at Peter Mac. They removed this tube on the 6th October. Oh my god, this was to be the most painful experience of my life. The tube had adhered to my chest wall. I don’t think that I will ever forget that pain. Even now, I feel physically sick thinking about it. That four hour drive home from Melbourne was the worst ever…… Even after taking two OxyContin tablets.
This still wasn’t the end of it all.
A week later they had a stoma bag connected to me and I was getting it drained daily, as more fluid still kept building up. The fluid was starting to look cloudy so I was readmitted into our local hospital again. Another six days in hospital. I can tell you, I was so frustrated and I wanted my life back. It had been 19 weeks since the mastectomy. My local Doctor was feeling as frustrated as me. All of the time he was treating me he was in contact with Peter Mac who were advising him on how to treat me. He discharged me on the Monday afternoon and rang them again. I was to go down on Wednesday with a view to be admitted there. On Wednesday, Garry and I went back to Melbourne. Professor Henderson said that he would operate the next day to see what was going on. I had a large seroma, which he removed and he took extra tissue from around it up almost to my right shoulder. No wonder I wasn’t healing!!! I spent seven days in Peter Mac. This time my body decided to cooperate. My drainage tube was removed a week later.
Over the last 12 months, I had to take 32 weeks off work to heal from all of my operations, infections etc. It has been an extremely challenging time for myself and my amazing family.
My husband Garry has been my rock. Brooke, her husband Simon, my son Matt and his partner Aimee have been there for me every step of my journey.
Brooke’s genetic test came back positive. So she too has this defective gene. On the 8th of January, she presented us with another granddaughter Cassie, to join her older sister Aleeyah and brother Blake. We don’t know what the future holds for them but I know the will approach it and tackle it head first and courageously. Of course without stating the obvious they know that they have my unconditional love and support.