My name is Stacey, I’m 31 years old and a mother of five from the Gold Coast in Australia. I can literally say my baby and obstetrician saved my life!

Stacey shares her story with Pseudomyxoma Survivor

Stacey and her miracle bub

I had caesarean section on July 12th. This took 35 min and I was delivered of a beautiful, healthy, big baby boy, weighing in at 3820 grams/8.6 pounds. During my normal c-section, I had a further operation, an ’emergency appendectomy’. I had two masses removed and further testing showed they were both cancerous tumours and I was diagnosed with pseudomyxoma peritonei (PMP). I was told I would have to have further treatment in the future. The tumours showed two different types of cancer, carcinoid & appendiceal mucinous tumours.

My bub wasn’t planned but he sure is our miracle bub. Dr Dunn, my obstetrician, said I was very lucky to have a c-section as it probably saved my life. It is most likely that the tumours had been there for years. Dr Dunn went far beyond his duties, I’m forever grateful for what he did as it is a rare cancer which goes unnoticed and was only discovered by accident. Honestly, he was baffled as there were no symptoms whatsoever.

I saw the specialist Dr Markey, whom I saw on July 18th, referred me to another specialist in Brisbane. In his letter, he requested that I had a partial bowel removal and internal chemotherapy to stop further spread of the disease. I then saw Dr Barbour who then referred me to Dr Lutton, at the Public Hospital. The assistant at his office called me to make the appointment and I told her I couldn’t afford private care or appointment. She wanted me to make a private appointment which I could have in two days but made it clear to me that public would be a longer wait. I didn’t get my appointment with him until five weeks later.

On September 16th, I had my first appointment at the Princess Alexandra Hospital. I was the last person seen that day, I had my baby with me and waited all afternoon. Then I had to see a registrar doctor as Dr Lutton had left before it was my turn. The registrar doctor organized a few tests; one lot was bloods and another was 24 hour urine. These were done on the 18th and 20th of September but I was given no follow-up appointment to discuss these tests. The care I received on that day was absolutely dreadful and I was informed on this day that given that I had two rare tumours, I would need two specialists, both Dr Lutton and Dr Meade – one of whom had gone home and didn’t even see me! I would also need further tests and treatment and surgery as more than likely I would have seeding (spreading of the cancer).

I was basically sent off with few tests to be done and I was told I would need both a gastroscopy and a colonoscopy. These were scheduled for the 5th November, eight weeks later, even though I had been told I was classed as an emergency patient. I was also told I would need a CT scan. I see, this is my life and all I seem to be doing is waiting and waiting some more… It would be four months since my first surgery until any real tests were done. I was told I am a very rare case and a serious case that requires two specialists as they have never seen this in any patient before. I was so scared and they told me that surgery would need to be done as they believe it would have seeded and spread.

I received a letter on 17th September regarding my surgery I was told I needed. The letter told me that my name had been placed on the ‘elective surgery waiting list’ with Dr Lutton and I would be advised of my operation date when it’s scheduled. I hadn’t realised until that point that having cancer treatment would count as elective surgery. More waiting

Now it would be eight weeks from my last appointment until my scheduled tests and more to come. I don’t understand why I couldn’t have these tests in the time I’ve been waiting. The waiting is so stressful. I couldn’t understand why I was classed as an ’emergency’ but I had to wait weeks/months for all these to be completed. I didn’t know how long I would have to wait until we would know what my future might be or if I would ever have an operation at all. It was like a death sentence hanging over me.

I contacted Professor Morris in Sydney. It felt like he was the only person who helped me during this whole time to understand what was going on. He emailed me on the 30th September. He told me that he believed that, based on my pathology report, my assessment and treatment should be relatively urgent. He agreed to discuss my case in a meeting at his hospital to see if he could accept my case. I just felt I was running out of time and he was the only person seeing my case as urgent.

I was scheduled for a laparoscopy on the 11th of October after having had pre-admission for five hours the previous day. When I arrived for the laparoscopy on the 11th it was cancelled as I was scheduled to go to theatre!

I was told by a doctor who introduced himself as Dr Lutton, that they would like to do everything all at once – the laparoscopy, the gastroscopy and the right bowel removal – and if they were to find ‘anything’ they would carry out a peritonectomy. The doctor also mentioned he had spoken with Professor Morris.
So I was given a cancellation letter and told I would have an appointment within two weeks.

I rang the hospital on the 17th to find out what was going on, I was told that the gastroscopy was scheduled for the 5th of November and no further procedures were booked. I was very confused. I rang Sandy, the head of the cancer department. She organized the laparoscopy and emailed Prof Morris. She told me that the gastroscopy was scheduled for the 5th and then I have to come at clinic around the 11th Nov and have a CT scan.

This is all a huge muck around! I was confused, I was scared, no certain dates or anything for surgery. This is ridiculous problem, I felt I had to wait ridiculous times to see the progression of my cancer!

It was February 22nd 2014 when I finally had my operation. It was 10 hours long and very successful and I am now in recovery.

 

Stacey

Stacey is a mum of five from the Gold Coast in Australia. She had her surgery at the Princess Alexandra Hospital in Brisbane. She is a patient advocate striving for fair access to peritonectomies and HIPEC for patients.

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