In September 2008, I received the call no one wants to receive: my annual mammogram had disclosed a mass that was likely a tumour, and a subsequent biopsy revealed that it was an invasive ductal tumour.
I was operating my own consulting firm when the mammogram revealed the cancer, and I was also caring for my elderly mom. I had almost considered putting off my mammogram for another year, but something in the back of my mind kept telling me to get it done.
Everything happened quickly from the time of my diagnosis to receiving a treatment plan. I had always been a huge advocate for public healthcare, but despite having worked previously as a VP in healthcare human resources and understanding its organizational structure, I felt like I was navigating a maze. My husband was my main support – he was there for me twenty-four seven no matter what. My 22-year-old daughter was also a huge support during treatment.
I had three surgeries in a year. The first was a lumpectomy that disclosed the invasive ductal carcinoma had lobular features, which meant that there were significant bits of cancer throughout my breast. My second surgery, which took place a month after the first, was a total mastectomy. A year later, I had breast reduction surgery on the remaining breast as the imbalance was giving me back problems. But each time I awoke post-surgery, my husband and daughter would be by my side. Still, I was afraid of what might happen if my daughter had to grow up without a Mom.
It was only after my surgical recovery that I discovered significant costs that were not covered by Alberta Health. Because of previous surgery for a benign pancreatic tumour which required the removal of my spleen, I had to have an injection of Neulasta after each chemotherapy treatment at a cost of $2,500 per injection. The Neulasta was administered through a predetermined series of shots, and the treatment required full commitment up front. Partial treatment was not an option.
I was distressed by the price and appalled to learn that Neulasta would not be covered by provincial healthcare. My consultation occurred on a Thursday and the chemotherapy was scheduled to start the following Tuesday. Where would I, as a retiree, find $10,000 for four treatments? Fortunately, my husband’s retiree benefit plan through Blue Cross covered a percentage of the cost. However, it came with the warning that it was an once-in-a-lifetime benefit. If I ever needed it again, I would have to pay for it myself. The Trillium fund was the real life saver, since it covered the portion Blue Cross didn’t pay for the Neulasta.
Still, in total, my husband and I incurred around $10,000 in expenses for travel, accommodation, medications and medical care products, so I often wonder what will happen if I have a recurrence and need treatment again. I don’t think that any cancer patient should have to worry that the cost of medications will stop them from receiving the best treatment, care or support that they need to fight and endure this terrible disease.
The Neulasta injections caused extreme joint pain. I also had second degree burns from radiation that required six weeks of treatment. I lost all of my hair and my face became bloated. Shortly after my last chemo treatment, I was hospitalized with pneumonia.
I believe that everyone needs to find an advocate who knows the system and all of its ins and outs. It’s like reading a map. And if your expenses aren’t covered, save all your receipts for tax time.
It’s also important to find and appreciate the humour in things. I’ve had lots of laughs with my husband and caregivers, and this helped me overcome feelings of helplessness. You have to be grateful for the good times and the great moments.
Resident of Alberta