Silent symptoms: A NSM’s battle with ovarian cancer

NSM Susan McCall enjoyed an active family life in Willoughby, like any other mum- until the day ovarian cancer ‘snuck up’ on her and rocked her family to its foundations. The disease has the lowest survival rate of any women’s cancer; only 44% of women diagnosed will survive beyond five years. Ahead of World Ovarian Cancer Day on Tuesday 8 May Susan shares her story, in the hope she can save others who aren’t aware of the silent symptoms.

Like many of you, I raised my children in the Willoughby area; they both attended Northbridge Primary School and enjoyed a happy upbringing. We love the natural surrounds of Willoughby – bush walks in Flat Rock Gully with the kids are memories I will always cherish. In fact, we started one of the first bush regeneration groups in the area, and with the help of the Willoughby Council I was a WIRES and North Sydney Wildlife carer for many years, whilst I also worked part-time and cared for my own family.

These days, I struggle to walk to the other side of our home.

Sue with her daughter Tara

Diagnosis: “You have ovarian cancer”

Ovarian cancer snuck up on me. It was 2016, and with our two wonderful children through University and commencing their careers, my husband and I were looking forward to sharing more time together and eventually retiring. It was coming towards the end of the financial year, and as a bookkeeper it was a very busy time for me, but I was starting to feel generally unwell. I had a constant temperature, and a bloating feeling in my abdomen. I battled on with work for the next two weeks, but eventually made an appointment with my GP in Castlecrag. The following 24 hours were a whirlwind of tests, fear, hope, and finally a diagnosis: “You have ovarian cancer.” In those four words, our whole world fell apart. I had become one of the 1600 women diagnosed each year in Australia with this cruel disease.

Ovarian Cancer: The Silent Killer

Shortly after my diagnosis, I joined a support group. During my time with those wonderful women, I have come to realise that ovarian cancer can hit you at any age. In fact, I recently heard of a 16 year old girl who was diagnosed. Ovarian cancer can be hard to detect, and is often detected when it is too late.

The symptoms include:

  • Fatigue
  • Nausea
  • Bloating
  • Pelvic and back pain
  • Changes in urination and bowel habits
  • Pain or bleeding with sex

The general nature of the warning signs goes some way to explaining why it has the lowest survival rate of all women’s cancers. Plus, there is no early detection test. Your smear test does not pick up this disease!

Australian figures estimate  over 1600 women will be diagnosed with ovarian cancer in 2018.

In that same period, more than 1000 Australian women will die from ovarian cancer.

My message to all women is that if you are worried, or notice any warning signs, visit your GP. Fight the urge to just solider on, and please encourage your mothers, sisters and friends to do the same – this awful disease is not a club I want any of you to join.

Treatment: “Treating cancer of any kind is hell”

Treating cancer of any kind is hell, and my treatment so far has been no exception. In July 2016, I commenced 9 weeks of chemotherapy, followed by major abdominal surgery, two weeks of recovery, and another 9 weeks of chemo. This brought me a brief period in remission that was full of joy, as I watched my son and daughter marry the loves of their life. I also managed a short holiday to Ireland with my husband. Those were memories I’ll cherish forever. It became apparent late in 2017 that my cancer had returned, which was confirmed by more tests. The last decent meal I ate before I seriously started to decline was Christmas day, which we hosted.

Avastin: “I hoped for a miracle”

At the beginning of 2018, with my symptoms gradually getting worse, my oncologist booked me in for another grueling round of chemotherapy. I hoped for a miracle; I hoped it would lead to another period of remission, and perhaps even cure me of this dreadful disease. I want to live long enough to see my grandchildren. I want to become a grey nomad in the motorhome my husband bought because he wanted to bring things forward. It turns out, a drug called Avastin might just be the miracle that I had hoped for.

I first heard of Avastin via my oncologist, who suggested it was a possible treatment option that could make a real difference to my quality of life, by keeping me off chemotherapy. I found out via my own research that Avastin is one of the only major breakthroughs in ovarian cancer treatment in the past 30 years. The way it works is it targets tumours and slows down their growth, increasing the time between treatment. The problem is, that whilst a narrow group of patients can access it on the PBS, I pay for it privately at a cost of $2,500 per tri-weekly dose (this cost varies depending on a patient’s body weight). For my husband and I, this means drawing on our modest superannuation and life savings. For many other women, Avastin remains firmly out of reach. That’s why I started a petition to Greg Hunt, the Federal Minister for Health to broaden the funding of Avastin on the PBS, so many more women with ovarian cancer can access this life-changing treatment.

Hope: “Look out for each other, and look out for yourself ”

I’d like to finish my story on a positive note, one of hope. I am fortunate that I have a wonderful network of friends who have helped me and loved me during this journey. When I reflect on the period of time when I was first diagnosed, I would describe feelings of sadness but I also had this beautiful feeling that I was being wrapped in cotton wool, which I’ve never felt before. It gave me hope. I felt so loved and cared for by my wonderful, generous husband and my loving and supportive children and their wonderful spouses. I’m blessed by the incredible, strong women I have in my life that I really do cherish, many of whom are from our wonderful community. I want all women who suffer from ovarian cancer to feel the same hope that I do. So, keep up with your friends, look out for each other, and look out for yourself – as women we are fantastic at caring for others, so much so that we are quick to lose sight of our own health. Remember, if you are concerned at all, please visit your GP. And finally, please take the time to sign my petition below.

Help Susan McCall and the hundreds of other Australian women who are diagnosed with Ovarian Cancer every year, by signing her petition to review the criteria for use of Avastin in Ovarian Cancer on the PBS.

To donate or to find out more, go to the Ovarian Cancer Australia website. 


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