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CA(SA) PROFILE: REFLECTIONS ON A YEAR WITH BREAST CANCER

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A year ago Kim Carter-Brown became a statistic when she was diagnosed with breast cancer. She tells us about her subsequent battle …

I don’t want to say that being diagnosed with breast cancer changed my life completely, but it was the start of a ten-month process that took over my life and opened my eyes to the impact that cancer has on our society.

When I found the first lump, I didn’t suspect cancer. We had no family history of the disease and I was a low-risk candidate. I didn’t fall in a high-risk population group; I’ve never smoked; I had a pretty healthy lifestyle; I was just a little above my ideal weight and– by cancer standards –  was still young.

From this point my life became that of the doctors. There were scans, blood tests, pre-surgery appointments, oncologist appointments, feedback from the tests and then surgery, followed by checkups and then chemotherapy. In some ways I was extremely naive in entering this process and I had no idea how difficult it would be. My GP told me to make sure that I had good income protection as I’d need it (I found out later that his wife had been diagnosed with cancer about a month prior to me), but only later did I realise the full impact of his words.

I was a little concerned about work, but the timing couldn’t have been better as my students wrote their final exam the week before surgery, so all I needed to do was mark their scripts (in and between doctors’ appointments and tests). On being told, my manager responded: ‘Don’t worry about it. My wife has been through it twice before. We’ll do whatever is necessary to help you.’  This, more than anything else, took a huge weight off my shoulders.

What struck me throughout this process is the high incidence of breast cancer. It is estimated that 1 in 31 women will get breast cancer during their lifetime, although it occurs most frequently in older women. The good news is that it has a high – more than 70% –  five-year survival rate, even for older women. I was amazed at the ladies in the chemotherapy room. Here they were in their seventies and eighties going through a tough treatment and looking forward to a good quality of life thereafter. It’s all about attitude!

In South Africa there are two population groups that have a higher incidence, due to an inherited predisposition to breast cancer. These are women with Eastern European (Ashkenazi) Jewish heritage and Afrikaans heritage. Fortunately the test for these genes is quick and relatively cheap, so if you are concerned speak to your GP to arrange an appointment with a genetic counsellor and a test. Men also get breast cancer, but it is 100 times rarer than female breast cancer.

It is not just that the treatment is hard, but it comes with a loss of control over your time as your treatments happen on a schedule and you’re at the mercy of the doctors availability for appointments; and there are psychological effects such as facing your mortality (and making sure all that documentation is organised and in place), losing your hair and/or breast(s), becoming reliant on others, in addition to feeling just awful.

I was really fortunate in that I was able to be home for a long time and didn’t have to worry about going back to work and was able to focus on me, but not everyone is that lucky. They still have families to care for and need to work in order to keep earning.

I was pleasantly surprised when I discovered that my hospital plan covered my cancer treatment under the government’s prescribed minimum benefits (PMBs), but in speaking to other patients I found that medical schemes are interpreting the PMB requirement differently. Some medical aids have a financial limit.

Others work according to the South African Oncology Consortium (SAOC) treatment protocols where you may be limited to a Tier 1 treatment by plan rules. Not all cancer treatments are included in the PMB definition and biological drugs are treated differently. These are expensive – mine is R20 000 a dose, which I take every three weeks for a year! You can get gap cover to cover these, but once again the benefit has a ceiling.

The big news in cancer treatment these days is immunotherapy, a customised (and therefore expensive) treatment. I was thankful that it was ‘so hard’ to deal with my medical aid (which sounded much like all the others) as it gave me a ‘job’ while I was undergoing treatment, but to get the bill paid took much of my accountant training to explain to the medical aid why there was a problem and what had been done wrong with their systems. As a result, they have covered 100% of my costs (excluding biologicals), but without my training (and persistence) I suspect that it would be closer to 80%. It made me feel sorry for those people who don’t have the training and background in finance that I do and for whom that 20% makes a difference.

My takeaway from the past ten months is how randomly cancer can strike. We are all at risk, as are those around us. It is a weird disease in that there really aren’t any side effects at first and the only known cure (alternative therapies may reduce the symptoms of cancer, but the cure rate is no higher than chance) is what makes you feel bad and is physically and emotionally draining.

Depression is a frequent side effect of the diagnosis and treatment. Income and medical insurance IS important! And the best way to help a cancer patient is to be actively supportive. Little things like bringing them a cooked meal that they can eat when they feel like eating and visiting for a short while or taking them out somewhere. Active support at work is more than just saying you’ll help them but actually taking tasks away so the person doesn’t feel like they’re not finishing their work and can spend time resting, not worrying.

I have been fortunate in that my initial scans did not show any spread of the cancer so I have been enjoying the ‘Benjamin Button Effect’ in feeling younger every day post treatment! From getting my energy and strength back to being able to cut away the grey hair (the first growth after chemotherapy is a soft downy grey) and forgetting quite how bad I felt during treatment. It is really great to be on the other side of it.

Author l Kim Carter-Brown (CA)SA