Rosaleen Kirby’s Story: Malignant Mixed Mesodermal Tumour (MMMT)

In September of 2019, when I was 64, I noticed something unusual, and at first assumed it was a touch of urinary incontinence. Before long, I realised that it was, in fact, a vaginal discharge, more than 10 years after menopause. I was away for the whole month of October in the Middle East and during this time, the discharge became heavier and constant and, though I was not in pain, I was aware of a slight dull ache. During the second half of the month, not only was there blood in the discharge, it also had a strong and very unpleasant odour. I knew I was in trouble.

On 4 November, at the first opportunity back in Australia, I visited my GP, who could clearly see a very large growth in my vagina. She had no idea what it was but hoped it would prove to be something like a prolapsed fibroid. She ordered scans and blood tests and referred me to a gynaecological oncologist for urgent investigation..

On 11 November, a hysteroscopy was performed, and the tumour sent to pathology. A few days later, I was given a diagnosis of endo-cervical malignant mixed mesodermal tumour (MMMT). These cancers, also known as carcinosarcomas, are rare and highly aggressive.

After considerable discussion at the MDT (Multi-Disciplinary Team) meeting, it was decided to treat my condition with a radical hysterectomy with removal of lymph nodes, followed by radiation therapy. I had the operation on December 7th, 2019 and the pathology report revealed that the cancer had spread to my tubes and ovaries, lymph nodes, and peritoneum.

During February 2020, I had 25 sessions of radiation therapy (5 days a week for 5 weeks). Although not painful, the radiotherapy built up a lot of gas in my abdomen and I have had significant challenges with my bladder and bowel ever since.

In June 2020, a PET scan showed no evidence of disease, so the hospital considered me in remission. However, in October, I had severe lower back pain, and another PET scan revealed fractures to the 5th lumbar and some sacral vertebrae. It was assumed these were the result of the radiation therapy, but the scan also showed inoperable tumours had recurred throughout the peritoneum.

At this point, I was referred for palliative chemotherapy with Carboplatin and Paclitaxel. My medical oncologist indicated that the longest I could expect to live was “a small number of years or less”. I am delighted to say that I have surprised them.

Over the next three years, I endured 17 cycles of chemotherapy given every 3 weeks, which caused me considerable mental and physical distress. During that time, I also had infusions of Avastin (Bevacizumab) every 3 weeks. This is used as a maintenance drug and continues during the breaks from chemo. For the last 6 chemo cycles, the Paclitaxel was stopped, and I found the infusions of carboplatin alone to be much more tolerable, though constipation and diarrhoea became my almost constant companions.

Over this period, I had regular PET scans The initial scans showed I had a “complete metabolic response” to treatment, but recurrence was eventually detected, and another cycle of chemotherapy would begin. In January of 2023, I hit something of a wall and my GP recommended antidepressants. I have been on a mild dose of them for a year now, and while they don’t radically alter my mood, they have helped me to stay on an even keel emotionally.

The most recent scan revealed a small site of recurrence in the pelvis which had grown during the last round of chemotherapy. I was referred to the Palliative Care team, and back to the Radiation Oncologist. It was felt that more radiotherapy was not a viable option, as the pelvic area had been heavily radiated four years earlier. Surgery was also not considered to be an option and my tumours are no longer responding to chemotherapy.

I am still receiving the three weekly Avastin (Bevacizumab) infusions and my job now is to continue to eat well, exercise as much as possible to maintain strength, and, most importantly, to maintain a positive outlook. My blood count is low, and this contributes to my biggest current problem which is fatigue.

The Palliative Care Team, along with my GP, will manage pain control as necessary, When the time comes, I intend to avail myself of the recently passed Voluntary Assisted Dying law. Hopefully this will be some months away at least.

I am fortunate to have a very supportive family and group of friends, and to live in a comfortable home with an all-important bathroom next to my bedroom. I do less than I used to do socially, as fatigue is now such a challenge. Fortunately, I have not lost my appetite, so we eat well, and I still enjoy a glass of wine or two with my dinner. Things could be a lot worse.