Karen was her household’s primary breadwinner when she was diagnosed with early breast cancer in 2006 and with metastatic breast cancer in 2007. Karen and her husband were in the process of owning their home and had two boys at high school. The family was on a tight budget: they had a mortgage to pay and the boys were active in sports, which took up a large proportion of the family budget. She and her husband, who also worked, had a plan for their financial future when she received her diagnosis:
We had our financial plan in place. We knew exactly what we were doing, when we were going to retire and what we were going to do going forward. When I was diagnosed with cancer we were just starting to get into the building stages again of investing our money and building wealth so that we had a reasonable retirement. That was taken away.
At first, Karen continued to work to support the family. This was made difficult due to the fatigue caused by her treatment:
I wanted to keep things as normal as possible for the family. I worked full-time with breast cancer for six years. Despite my health I just marched on. That was okay except the fatigue was extraordinary, and I wasn’t a very nice person to live with as I was so tired. I was so spent by the time I got home, I had no energy for my family. I was doing it because we really needed the money. I just had to keep going for as long as I could because I was the major breadwinner.
Karen’s employer supported her at first, but after a change in management and the discovery that the cancer wasn’t going away, she found that she was treated differently:
Through the early stages, work was fantastic. They were really, really good. But then they had a change of guard and old management was cleaned out except me. Nonetheless, I think my manager was trying to put so much on me that I would just fold and go away.
Eventually, Karen was dismissed by her employer:
As far as I was concerned I was on unpaid sick leave. They took me off the books, which was absolutely devastating. You’re going through enough personally as it is and then you get that.
Karen decided to start a legal case against her former employer, but during that time her cancer stopped responding to treatment. Her oncologist suggested a new drug, Kadcyla, might work for her. Kadcyla is a very expensive drug and was not on the PBS at that time, however Karen could obtain it for an upfront cost of $15,000 through the pharmaceutical company’s Patient Access Program. (These programs provide drugs at reduced prices prior to them being listed on the PBS.) Faced with a choice between paying legal fees and paying for a drug that could help extend her life, Karen chose Kadcyla:
I had to choose between Kadcyla or fighting a legal case with my employer. So I picked the drug.
Kadcyla is now available on the PBS, which is a relief to Karen because it means she can now buy it for the cost of a PBS script fee. She’s also pleased that other women in her situation can also afford to use Kadcyla. However, she still has significant costs associated with her cancer because of other medications and out-of-pocket expenses. This amounts to around $3,000 per year.
Karen’s long experience with managing her metastatic breast cancer has exposed her to many different doctors and hospitals. She has noticed that different hospitals and doctors charge different fees. Karen would like to see people given clearer information about the costs of their treatment and what their options are, so they have all the information they need before making their choices:
The hospitals need to be clear to people so they make the right choices, because private hospitals are different. Better information is needed right from the outset, just to say that, you know, private hospitals, they aren’t the same. They work on different business models.
Not being able to work has had a huge impact on the family budget, with her husband taking on extra work to afford the costs of day-to-day living. They have accepted they will have to retire later than they had planned.
While their goal of traveling is not possible anymore, Karen is grateful they were able to go on a ‘glorious’ Europe trip together a few years ago.
Karen was able to access her superannuation through the total and permanent disability provision, but the family still has some of their mortgage left to pay. Their budget is extremely tight:
We are struggling. I do our finances forensically now because we really have to watch every penny. I have had to draw funds from our mortgage a couple of times to live.
Their social life has suffered. Before cancer, they were a very social couple and were active in community groups. Now, Karen and her husband find that they have to say ‘no’ to social activities because of the cost or because her husband is too tired after working a six-day week:
Socially it has really affected us. Anyway we can’t afford to socialise. Even going out for dinner, we have to be careful how often we do that. We’ve had to pull back and almost become hermits because of our circumstances. That is not my temperament at all.
Cancer took away Karen’s goals and plans, and replaced them with a day-to–day existence. It also took away Karen’s independence and freedom, which were very important to her:
I’ve always been a very independent person and now I’m totally dependent on my hubby. It took my independence away. Freedom I suppose, my freedom.