In the second half of 2009 I grew a bit pudgy, but I didn’t think it was strange. I just put it down to the arrival of broadband to our town, since fast internet compelled me to spend more time sitting down. It seemed many friends my age were similarly spreading in the middle. In December I was very fit and dancing every day, preparing to teach “aerobic folkdance” at the Woodford Folk Festival. Then at yoga, touching my toes, I was surprised to see one ankle was swollen. A few days’ later it hadn’t gone down and my belly seemed bigger than ever, so I went to the doctor although I didn’t feel the slightest unwell. Here is a picture of me at yoga that same day. Note the tummy!
I am describing my symptoms in detail, hoping readers will be warned. I had advanced ovarian cancer and my experience is typical – I was fit and healthy and unsuspecting. Currently there is no screening test for this disease, and the symptoms, if any, are unremarkable. I gather most women at some time get a feeling of being bloated, and many of us put on weight around the middle after age 50.
More information about OVCA warning signs
My doctor sent me for a blood test and ultrasound scan, then on 18th December I was diagnosed with ovarian cancer. I was rushed to the Mater hospital in Brisbane (about 2000 km away from our home in Yungaburra, Far North Queensland). Between Christmas and New Year, instead of going to Woodford, I had surgery. They told me it was 3 or 4 operations rolled into 1, and it took about 5 hours. I had a hysterectomy and I also lost a piece of diaphragm and a bit of bowel. The tumour growing from my ovary was 16cm across. My Mum would brandish a rockmelon and point out that’s about the size! To allow the bowel wound to heal, I had a temporary ileostomy for the next 6 months. Significantly, the surgeons were satisfied they had removed 100% of the tumour. However, my blood and lymph systems were awash with microscopic cancer cells. Chemotherapy was our strategy to kill these cells with toxic chemicals.
After the shock of being gutted, I actually recovered quite steadily and not even chemo set me back. I left hospital in mid January 2010, had a brief rest with John and the kids staying in Sydney with my Mum, then started chemo in February. This entailed flying to Brisbane every 10 days or so because it was not merely intravenous but also intraperitoneal chemo, pumped into my torso via a port in my ribs. This new and improved treatment was not yet available north of Brisbane. I was fortunate in that I didn’t feel too ill on the chemo. I was given very effective medicine to help counteract the side effects, including steroids or something that got me hyped up the first night each cycle. I’d struggle to sleep, then sit up writing something creative (and silly) on my blog.
The worst part for me was coping with the ileostomy and complications. Each time I had a tight bellyful of chemo fluid, my stoma would prolapse causing leakage and burnt skin. When this settled down, the stoma retracted leading to more leakage and burnt skin. I was soooo happy when my plumbing was reconnected on 2nd July, 2010! I have promised myself to never ever take for granted the miracle of nature that is intestines functioning in the old-fashioned way! I am the one you hear singing in the toilet.
This whole adventure was tough on my loved ones who were brilliant the way they looked after me and worked around my crazy schedule of travel and treatment. My family and friends were such great support and good fun that I have happy memories that counterbalanced the difficulties. I know this sounds unbelievable, but it is true that I really enjoyed myself during the chemo time, and I am very very grateful!
When the treatment was over I enjoyed about 12 months of feeling healthy, regaining fitness and (almost) forgetting about cancer, except for 3-monthly check-ups. John and I had planned a holiday driving south to visit people and especially spend time with Evan and Helen. We were in fact in the Victorian snowfields skiing – feeling fantastic – when I happened to notice I had swollen glands in the groin, a lump each side about the size of a macadamia nut. (Yes it is embarrassing for any woman after hysterectomy to have to admit to nuts growing in her groin!) After an ultra sound scan and biopsy, I learned this was a recurrence of cancer. I had 4 small tumours, including 3 inoperable ones deep in my abdomen, so I needed more treatment.
I had chemotherapy again, combined with an experimental drug, farletuzumab. It’s a monoclonal antibody designed to assist my own white blood cells to destroy cancer. It was a research trial, so no guarantees that I was actually taking the active drug, as one third of participants were given a placebo (only saline in the drip). Previous studies had established this treatment was safe, with minimal side effects, so the worst I might experience would be no benefit from the treatment, but there was a chance – a hope – it might be helpful in stopping the cancer from growing again.
The chemo finished in February 2012 – that was 6 rounds of toxic platinum compounds, the best known treatment for ovarian cancer to date. At this point one of the little tumours had vanished and the others shrunk to half the size. Then I continued taking farletuzumab on its own for almost another year, and was very glad that one tumour shrank further and another stayed the same size. One tumour grew slowly, but it was the smallest of the three. My good response to the trial drug seemed to fit with taking the active formula (not placebo), and indeed this was confirmed later.
The trial ended abruptly in January 2013 due to a decision by the research leaders. In a preliminary analysis they calculated that on average there was no significant benefit to us patients, although a subset of women were helped by the new drug. My doctors considered I was in this subset, so I was very disappointed that the trial closed and farletuzumab was no longer available to me!
I must mention that it was an intravenous drug administered weekly at the Mater, so it meant John and I stayed living in Brisbane all this time. When the trial ended, we were free to go home to Far North Queensland and even plan a trip overseas. Helen was on an exchange program studying in the UK, so we went to visit her, which was a really lovely opportunity!
I have had 2 surgical procedures, 3 lines of chemotherapy, 2 clinical trials of targeted therapy, 2 treatments with hormone blockers and a treatment with targeted radiation. Fortunately, I have had a great response to all except the hormone blockers.
My associated ailments and treatments have included an ileostomy and reversal, bowel blockage due to adhesions, nutropenia, asthma resulting from flu after chemo, lymphoedema, blood transfusion for drug-induced anaemia, ureteric stent installed due to kidney blockage. Ooh, it all sounds like lots of drama, but spread over 7 years it’s hasn’t been so bad. There have been plenty of periods in between when I have felt very fit and well.
I know one woman with a better medical history than mine (NO recurrence!) but otherwise I’m in the very lucky group for whom ovarian cancer has been like a chronic illness to manage.
In October 2013 I could feel a little lump in my groin once more, and scans showed it was cancer in the lymphs growing again, although quite slowly. The next option offered to me was the oestrogen-blocker Tamoxifen, in tablets to take daily. After a long perspiring summer of hot flushes and concern that my disease may be not hormone-responsive, my fears were confirmed as scans showed the tumours had indeed grown again. My third chemotherapy was with the platinum toxin paired with a different drug (Gemcitabine) and the cancer responded really well as before. However, while the tumours shrank, my body struggled with the harsh regime. Bone marrow suppression lead to slow recovery of my blood count so my chemo cycles were delayed and the dose had to be reduced. Eventually I developed some hypersensitivity to Carboplatin so I had to substitute Cisplatin for my last dose. What a relief when that was all finished in August 2014!
This disease is relentless, however, and about 6 months later I could feel a similar little lump in my right groin. Over the years I had reported twice to the specialists with this symptom and learned from a scan the horrible news that the little groin tumour was the smallest of the problems. This time was different, oh joy! The remaining little tumours deep in my abdominal lymphs had not grown at all, and the team advised surgery was possible, always endeavouring to postpone further chemo.
In April 2015 I returned to the Mater under the same surgeon as before, rekindling many strong memories. The removal of that cancerous lump from my groin was quick and successful, hardly interrupting my busy schedule, slotted between 2 enjoyable visits to the Tablelands.
You can imagine my disappointment about a month after surgery when I felt a lump in my abdomen. Yes, the suite of small tumours had begun to slowly grow again. It was time to revisit the list of options and try another longshot, an alternative hormone blocker, Letrozole. Even though Tamoxifen had not worked for me, I hoped the Letrozole pills would slow the cancer growth and stave off my need for chemo a little longer! This time it was Winter, so I was less uncomfortable with the frequent hot flushes.
The next few months were unpleasant as the tumours enlarged and worried me. I wore only the baggiest of soft clothing by day and sometimes suffered at night with pain. After about 6 weeks on the drug it was evident that Letrozole was not helping. My medical team looked into the current clinical trials and applied for me to join. I was sad to be told I was disqualified from some trials on account of too many previous treatments with chemotherapy. Just as this depressing fact was sinking in, another opportunity arose. My specialist heard from her colleague at the RBWH of a change in protocol that expanded the intake for a Rucaparib trial to include veterans like me. I felt incredibly fortunate to be able to switch hospitals, sign up for this trial and take some more experimental pills.
Rucaparib is a targeted therapy, attacking only the cancer by working with my body to assist my tumour suppression system. On this trial there was no placebo! This meant a guarantee that my pills contained the active drug, and immediately I began to feel the benefit as the tumours began to shrink and the pains vanished.
The research aim was to compare patients with varying genetics to determine who is best suited to take the drug. Therefore, for the first time I was offered genetic analysis, and it threw up a surprise result – BRCA1 positive. Think of Angelina Jolie, although in her case a terrible family history of gynaecological cancers indicated she was at a huge risk of both ovarian cancer and breast cancer. I have none of this kind of family history, and sure enough, further tests revealed that my illness was not caused by an inherited mutation. Mutations happen all the time for a variety of reasons (and for no reason). I am in the happy position of knowing my children can’t inherit the problem from me, while I benefit from the advanced research into BRCA-related cancer.
After 16 months on the trial, one of those little rogue tumours in my abdominal lymph system was slowly growing again. With enormous disappointment I had to stop taking Rucaparib in January, 2017. Time to return to the Mater where my next (and latest) treatment was a short course of targeted radiation therapy to shrink the two most troublesome tumours which fortunately were accessible for zapping with the proton beam.