My story is one of statistics and how sometimes it can be amazingly good to be that 1%.
In July 2012 I had been successfully ignoring heart palpitations that only happened in the first 5 minutes of exercising - for about 6 months. They were getting worse, so I found myself a new GP (I had meaning to find a new GP for a while after moving suburbs) and said “It’s probably nothing, but….”
My wonderful new GP took me seriously and sent me off for tests. They diagnosed a ‘significant left atrial mass’ in my heart that had a 75% chance of being benign. None of my doctors spent any time talking about what it might mean to be in the malignant 25%, although it did give me pause for thought from time to time as I prepared for open heart surgery to remove the tumour.
At 7:30 am the day before I was due to go home from hospital from my surgery, my surgeon dropped the bombshell on me that the tumour was malignant. I had cancer. In the heart. Sheesh.
I was in a daze as I recovered from the surgery and saw oncologists and specialists who told me I had undifferentiated cardiac sarcoma. My life expectancy was 9 months to 2 years at the outside. Dr Google told me the same thing - all the studies ended in deceased, deceased, deceased. One doctor at the Peter Mac Centre in Melbourne said that the heart is the site that has the highest possibility of metastases. He knew of only one person with cardiac sarcoma who made it to 6 years before he relapsed. Sheesh.
There were so many tears. There was so much support from family, friends and work. My head was a complete mess.
Statistics were not on my side because my cancer was so rare. Sarcoma is rare. Cardiac sarcoma is rarer. There is very little research into sarcoma, and even less into cardiac sarcoma. Radiation was considered to be a must do. My doctors said there was no science to support a decision about whether chemo was worth it or not, and there was maybe a 5-10% chance of it being beneficial. I decided that I was a boots and all kind of person - I didn’t want to get to the end of my 2 years and face death knowing that I didn’t try everything, so I did chemo.
I gradually came to realise that I might get lucky - I had caught my cancer so early that I might just be that 1%. I might last more than 2 years. Surgery and radiation might have done the trick. I felt fabulous and got on with life.
Unfortunately the cancer came back in my adrenal gland. A 15 cm diameter tumour was removed in 2014. It was fast-growing but had not invaded any other organs. Good and bad in one package. I was back on the 10 month to 2 years to live track. Radiation wasn’t recommended because the target areas were too big and the chance of damage to other organs was too high. The doctors didn’t recommend chemo because there was nothing left on the shelf at that time that they considered worthwhile. There is limited Medicare support for sarcoma treatments because of the low levels of research. It’s so hard to have a rare cancer. Sheesh.
I quit work because everyone said I’d be dead with 2 years, and I had better things to do than work for my last 2 years.
We thought the cancer had come back another 2 years later in 2016 when a scan noticed something not quite right in my heart. But during my second open heart surgery they discovered it was just scarring from the radiation. Phew.
Somewhere in the last 5 years I’ve learned that there’s a fine line between scans being a great diagnostic (and peace of mind) tool, and something that can make you spend all of your time focussing on your illness instead of living what life you have. I’ve also learned that even in the face of overwhelming evidence from your doctors, sometimes a team approach from your medical care team and lots and lots of discussions can open up a small amount of wiggle room that you might just have a chance of squeezing through.
I’m now more than 5 years from initial diagnosis, and 3.5 years cancer free and I feel fabulous. I have no idea how my story ends, but I’m thrilled to have been in the maybe 1% of people with cardiac sarcoma that make it to 5 years from diagnosis and beyond. I don’t want to say that I’m glad I got cancer because that would be nuts. But I’m happy to be where I am today - there’s so much I’d never have done or learned if I hadn’t gone down this path.