Australian breast cancer survival rates at an all-time high. That’s cause for celebration. But follow-up care is crucial to ensure the 15,000 women diagnosed this year continue to live long, productive and healthy lives after treatment. At Cancer Australia’s recent Pink Ribbon Breakfast, Cancer Australia CEO, Professor Helen Zorbas said that women diagnosed with breast cancer in Australia experience among the best survival rates in the world. “However, many of these women will face significant health and wellbeing challenges beyond treatment.”
This means that despite improved prognosis, all women diagnosed with the disease face the possibility that their cancer may return. And long term follow-up is crucial after treatment to detect any cancer recurrence or a new cancer, and to help address physical and psychological issues. “With up to a third of all cancer survivors experiencing anxiety or depression, and up to 70% reporting clinical levels of fear of their cancer returning, follow up care is not just about the cancer, it’s about treating the whole person,” explains Professor Zorbas.
Megan was asked to share her personal journey at Cancer Australia’s Pink Ribbon Breakfast, which was raw, honest and heartfelt. But most importantly, it addressed the need for follow up care. In this special extract, Megan shares her experience, as well as the fear and anxiety she felt and the effects on her family….
“I was diagnosed as a young woman, initially in 1996. It was no different to any other person’s diagnosis – shock, uncertainty, a surreal bubble, and the first time I had felt major anxiety with a continuous wait for results.
I was a bit of an anomaly in ’96. Not many younger women had been diagnosed. I had just married, bought a house, and got a breast cancer diagnosis. My three big things for that year.
As a newly married woman, my dreams for family and potentially happy ever after were put on hold.
I did the time. Surgery, radiotherapy, chemo and some ongoing hormonal treatment that put me into menopause. I ticked all appropriate boxes, and was then into recovery mode. I kept working during my treatments, not because I was wonder woman, just because I didn’t know anything different. I had cancer, what the heck do you do with that? I didn’t tell my work colleagues until I was three chemo’s in. It was after a fainting spell that word leaked out.
I know now, this wasn’t the best thing to do, but it was how I did it. I wasn’t exactly experienced in this area. I got through everything and embraced the recovery process. How good was it to feel good again?
I remember it took about 12 months before I felt I was getting back to my normal energetic self.
Lots of people talk about good coming out of a diagnosis, and I used to say that I would never wish it on anyone, but it did give me a different perspective and maybe that is something to value. I certainly didn’t climb a mountain and scream from the top that I was pleased this had happened to me.
Of course the question of children weighed heavily on my mind as I started to recover. David and I spoke to our Oncologist, GP and even spoke to a genetic counsellor to try and work out whether we should risk trying to start a family, and if we had children what the risk would be to them. We ended up waiting for the five year mark, just to be sure, and of course the question of fertility was a large one.
I gave birth to my first miracle baby, Griffin in 2003. I held that baby extra tightly. I then had our second son, Dylan in 2006, and held him equally tightly. How lucky were we…? I was hard on myself with my babies, wanting to feed them like any other Mum, and I did, but from one breast, that continually got mastitis. My GP made me see sense and help it to all be ok.
I continued to have my yearly tests, and as frightening as they were in the early days, my calming mantra was at least if they find something it will be early and treatable. I also, of course, had a crack team in place if need be!
My GP, was always very understanding if I popped in with a worry of any kind. She became a great support to both David and I.
So, I thought I had done everything right – active, healthy, young, great diet, non-smoker, mild drinker, and after 16 years really didn’t worry too much about my yearly tests, but I still had them.
You can imagine my surprise when in my 16th year I saw that worrying look again in the radiographer’s eyes.
My second diagnosis was picked up in a yearly mammogram – there was no lump to see or feel. Thank goodness for follow-up care – it’s not worth thinking about what could have happened if I wasn’t that diligent (mind you, I do think about it).
So the same pretty much happened. I had a biopsy, and I knew it was bad. Now being a medical professional in this area, I decided to open the report and I couldn’t get out of my car… It didn’t look good to my eyes, so best I wait for the real professional. I already had an appointment set up with my oncologist so I didn’t need to do all that extra draining running around for referrals and appointments. At least I was in the system, and I had Fran.
I walked back in to the very familiar Oncologists rooms, only this time I knew it would not be for the standard yearly, ‘how’s the family? How’s work? Films are good… on your way’ chat. I remember clearly saying to Fran, I don’t care what I have to do – I’ll do it all, you just need to get me through this for David and the kids.
I didn’t care about the hair, or the breasts. As far as I was concerned, I was done with them. I only cared about living.
So back to it. The chemo, a double mastectomy and reconstructive surgery, all at the same time. The Goddess operation no less. I won’t go into detail, but an amazing surgery that leaves you with a tummy tuck and two pert breasts made of your own tissue…?
It was hard for me to decide if I should do the surgery, and if so what I should do? I rallied the support of my GP in this instance to really just be a sounding board. Was I going to put myself through this just in the name of vanity? Was I risking my life again to have a 12 hour operation when I had two small kids and a husband I loved. There were lots of questions and at this stage I had chemo brain, was exhausted and in no mood to have this drag on with complications.
I did the surgery and have no regrets. In fact, I’m very happy with the result. In clothes ‘my girls’ look great. Out of clothes, not nearly so glamorous. They have taken a beating over the years.
Although I was ‘in the system’ already for my second diagnosis, and the fact that I knew what to expect did make things a little easier. Having children complicate the equation, was not easy.
We were honest with the kids, told them only what they needed to know and they coped brilliantly. The worry about the kids is too enormous to articulate. However, some of my most memorable moments of course are because I have them.
I couldn’t lift anything for four months due to the surgery. I remember Dylan falling over and I leant down and picked him up at about the four month mark. His face lit up and he said, ‘Mumma’s back! Mumma is strong again’. Of course then Eminem became part of our lives… Guess who’s back? Mumma’s back.
The kids did well, and my wonderful husband David has never faltered. However I noticed a year after the diagnosis that our eldest was becoming increasingly more anxious. It was back off to the GP who helped us with some strategies – separation anxiety has become very big for him. Our GP has been a marvellous part of our support crew, as she knows the family intimately.
The work that everyone is doing is making such a difference. My two separate diagnosis’ were handled very differently – communication is better, treatment is more refined, doctors are talking to each other and the patients, and in most cases GPs are playing a bigger support roll. I can see first-hand how far we have come.
I’m now two years on from the second diagnosis, and frankly there is nothing good about getting this disease a second time. I got my mini-wake up the first time perhaps, but not the second time.
I am continuing to live life to the fullest, squeeze every last minute out of the day, but I did that after the first as well.
Two years is good, but it’s all still so fresh, some moments surreal even. It will take a few more years for me to be at peace with it, if ever.
I’m a strong woman. I’m not fragile – I haven’t fallen off my perch emotionally, but my life is different again now. It’s the kids, looking at those boys of ours and just thinking. It’s also David – what he has put up with is more than any husband should have to.
As for the future, I’ve very optimistic, but cautiously so.”
About Cancer Australia
Cancer Australia is the Australian Government’s national agency providing leadership in cancer control to improve outcomes for those affected by cancer, their families and carers. Cancer Australia has developed a number of resources for health professionals, which are available here canceraustralia.gov.au/followupcare.
