Updated: 8th May 2024
This is the kind of post I never thought I'd have to write.
On the 18th December 2023 I was diagnosed with breast cancer. It is a journey I never wanted to embark on, but the only way forward is to focus positively on my recovery and take it one step at a time.
My primary focus for 2024 is healing, and as I look forward to my next chapters after this, I am even more excited about the amazing holidays I've yet to experience. Moments like this are the most powerful reminder that we have to make the most of all the time, and all the opportunities, that we have.
This post will be a summary of my recovery journey as I'll update it at key stages so that family and friends wanting more information can access it, and hoping that perhaps at some stage in the future, my journey may help someone else that finds themselves unexpectedly on a similar path.
My journey starts at the bottom of this post for those that want to scroll down, the latest updates will be at the top, and I am already looking forward to posting my last update when I'm celebrating success.
Surgery
After my early conversations with the surgeon in December, I thought I was clear on the surgery I was going to have post chemo. However, after looking at my April scans in detail, knowing that I wanted to remove any known areas of potential future concern, as well as the areas already impacted by cancer, the surgeon indicated I may need to consider a mastectomy on my right side.
This changed everything for me from a decision making perspective. If I needed to have a mastectomy I knew I wanted to have a reconstruction immediately if possible, and as we were also discussing removing at least an area of potential concern from my left side as well (it had tested as benign but kept flagging on my scans as abnormal), I eventually made the very difficult decision to do a bi-lateral mastectomy and DIEP/Flap reconstruction. Surgery will also include removing some of my lymph nodes, and I am booked in for surgery on Saturday 11th May.
Chemotherapy
My Dr's made the decision to do chemotherapy first with a goal of shrinking the tumours pre-surgery.
I was originally told I had to do 4 fortnightly cycles on one set of drugs and then it was expected I'd do another 4 cycles on a different set of drugs. However, I had an incredibly tough time with the chemo sessions, experiencing major complications linked to 50% of my treatments (including hospitals stays, a seizure, vomiting, and potential heart complications), and my Oncologist made the call to stop after 6 cycles. I knew chemo wouldn't be easy but it was a really difficult experience physically, mentally, and emotionally, and the relief I felt to know that it was over is impossible to put into words.
I tried the cold cap for 2 sessions but I didn't keep enough hair to make it worth continuing that. Within 2-3 weeks of starting chemo I had large bald patches on my head and over a week worked through the process of getting all my hair cut, then shaved off. Although I know it will grow back losing my hair has been a difficult part of the process.
I completed progress mammograms and ultrasounds after the first 4 cycles which showed the tumours were shrinking which was really positive news. Following my 6th cycle, after we confirmed chemotherapy would stop, I had another set of scans before seeing the surgeon to confirm plans for surgery.
It's Always a Good Time for Good Surprises
It can be really tough for friends and family to know the right things to say, and to know how best to provide support. Although there is no right way to help, I'm a firm believer in the concept that 'it's always a good time for good surprises' - particularly at a time like this when someone has experienced a lot of bad news.
I have been really moved by the loving support of my family, friends, and colleagues, at this difficult time, and I have deeply appreciated all the beautiful messages, flowers, and gifts I've received, as they have been a source of joy in the midst of my challenges.
Compounding Grief
Over 2 weeks in December my Stepfather Geoff died, I was diagnosed with breast cancer, and my younger brother Richard died on my birthday. Geoff and Richard had both been unwell for some time, but nothing could have prepared our family for losing them both over Christmas and New Year within 2 weeks of each other.
Richard was only 42 and he had suffered with a rare dehabilitating illness, called CIDP for several years and I started a small fundraiser for CIDP in his honour if anyone reading this would like to contribute.
I still don't think I've had time to process everything properly, but events like this help clarify who and what is important in life. Every day is a gift.
"Strength doesn't come from what you can do. It comes from overcoming the things you once thought you couldn't." Rikki Rogers
Cancer Diagnosis
I went to a new GP on the 18th December 2023 hoping to be told the biopses were all clear. Instead, I was told that the tests confirmed I had breast cancer in two locations.
Thankfully one of my closest friends is an Anaesthetist and I'd spoken to her about the tests. She was the first person I spoke to about my results and she was able to recommend a breast cancer surgeon that she's worked with for many years. Being able to be referred to someone so trusted made the next steps slightly less scary.
The next week (the week before Christmas) was a whirlwind of appointments, where I met with the surgical team and the oncology team. There was so much new information to take in which was daunting, and plans were put in place for me to start chemotherpy in January.
At this stage I found out that there are several different kinds of breast cancer, as well as different stages, and the medical team working with me were developing a unique treatment plan based on my individual circumstances and age.
In this week I also completed a range of additional tests to check my heart and blood pre chemotherapy, as well as a PET scan and CT scan to see if there was cancer anywhere else in my body. I was extremely relieved to get confirmation that my cancer was limited to the two locations already known.
The Statistics
I was shocked to find out that the risk of being diagnosed with breast cancer in Australia for women is 1 in 7, and the risk of cancer generally for Australians is 2 in 5!
Mammograms, Ultrasounds & Biopsies
During my first mammogram with BreastScreen they explained that it's common to be called back for more tests, particularly when you are new, as this can help create a baseline for monitoring against in future years.
Due to the above I wasn't surprised to get a call back for more tests, and I'd read that over 90% of those called back did not have cancer. A little worry crossed my mind but I went into the second testing day positive all was OK.
I was told the day was set up to do any extra testing needed so it would start with 3D mammograms (instead of the 2D versions done originally), then if needed move to ultrasounds, then if needed a biopsy.
The second day of testing started with them telling me they were concerned about one section of my right breast. The testing started with more mammograms, then ultrasounds, which were all relatively easy and I was fairly optimistic I'd be told I could go home soon. However, when I was asked to repeat those tests again, I started to get more nervous.
By the time I was sitting with the Dr, I was expecting they may want to do a biopsy but I was not in any way prepared for her to say they wanted to do 3. Two on my right side and one on my left.
I have been scared of needles for as long as I can recall. Hearing they wanted to do 3 biopses was frightening as the fear of having cancer was becoming very real, combined with my fear of the biopses about to happen.
I found backing up for the 3 biopses traumatic, I was upset and scared, and having to be awake to work through the process was distressing. I had 5 local anaesthetic needles to numb the areas, followed by them taking about 10 samples across the 3 sites, they also placed markers in each area. The taking of the last sample was the most painful as they unfortunately went beyond the area of the anaesthetic to take it.
As I was scared and upset at this stage I sobbed through the entire process. However, if I'd only needed one biopsy and if I been able to relax and stay calm, I think the discomfort would have been limited to that of the anaesthetic needle.
At this point I wanted to believe the worst was now behind me and I'd be told by the Dr that the biopsy results were all clear. I was booked in to see the Dr on the 4th working day after the procedures.
First Mammogram
After you turn 50 there are some medical test reminders that start coming in the mail.
My first was the Bowel Screen Test which I completed and sent back, and received the all clear in the mail which was great.
The second, was the BreastScreen flyer, encouraging me to have what would be my first mammogram, as they are recommended every second year from age 50.
Women are always encouraged to see their Dr to investigate any lumps they may find at any age. I didn't think I had any lumps of concern, but I've also been irregular in self checks.
The breastscreen flyer had been temporarily left on the fridge as I knew I needed to get the test done, I just hadn't rushed to make the appointment. I'd heard a few stories about how painful mammograms could be and was nervous about the appointment.
Eventually I made the appointment, and about a week before I wondered if I felt a ridge in my right breast. I didn't know if that was new or normal, so I was pleased that it would be checked.
It was easy to get the appointment done locally and I was fortunate to find that the mammogram was less painful than expected. There were a few seconds of uncomfortable pressure applied a number of times, but overall it was a real relief to get it done and put it all behind me for another 2 years - or so I'd thought at the time.