I wish I’d known more

In November 2000 at the age of 35, I was diagnosed with early breast cancer. I went through six months of chemotherapy, had a lumpectomy, a full axillary clearance, and six weeks of radiation. After completing five years on Tamoxifen, I felt like I was in the clear.

While I know a lot of people with early breast cancer can find it confronting to know too much about metastatic breast cancer, I wish I’d known more about it and what signs to look for.

It was 2011 when I started to get chest pain. I thought it was muscular pain from the gym, so I went to the physio for six months and didn’t think much more about it. When the pain was persisting and became worse when I was stressed, someone finally insisted on having a better look at it. Sure enough, cancer had eaten the bone in my sternum, and I was then diagnosed with metastatic breast cancer in April 2012.

In 2020 I found a lump on my collarbone. At that stage I was having CT scans quite regularly, but I went for an out of cycle scan through a GP. The radiologist didn’t pick up anything in the scan so the GP told me it must be arthritis. I remember thinking, ‘it can't be nothing’, so I had it checked by my regular GP who confirmed my fears that the cancer had come back. I started chemo for the second time and began taking Herceptin which I’ll be on for the rest of my life.

Everyone deserves to have the best care no matter who they are and where they live so it’s important more people understand how they can individually access the best care for them and their breast cancer.

Even back when I was first diagnosed in 2000, when multidisciplinary teams didn’t officially exist yet, my surgeon would discuss my case with other health professionals every couple of months.

Just knowing there was more than one person looking at my treatment plan gave me a sense of confidence. I liked knowing that there were more heads at the table, making decisions and coming up with new ideas or different pathways for treatment. It’s especially important for people who are in multiple active treatments, to ensure that the combination is hitting the right mark.

While I've got supportive family and friends around me, having psychological support has been invaluable to get me through emotionally. I recommend to other people that they see a counsellor because it allows you to talk to someone that's not personally involved, and who can give you constructive methods to manage your fear or stress.

Another form of supportive care is joining a support group specific to your type of breast cancer. I'm on a research committee that looks at the benefits of support groups for metastatic breast cancer. Even looking at my own support group, the benefit they get from meeting with others was made even more evident when we couldn't meet during COVID. People find it empowering and helpful to be in a group with others who share similar experiences.

Over my 22 years, the lack of transparency about the cost of treatment has been shocking and I think there needs to be improvement to informed financial consent in Australia.

Informed financial consent means you should be aware of the total estimated costs for your care and treatment up front, however, there have been times my hospital has covered costs of appointments but afterwards I’ve been slapped with a hefty pathology bill.

Now when I'm ringing up to make an appointment, I always ask how much it will cost and if they know what the rebate will be. For people newly diagnosed with breast cancer, it’s important to have the confidence to ask these questions, but it’s also important for this kind of information to be readily available for everyone to make an informed financial decision about their treatment and care.

We’re very lucky that we have Breast Cancer Care WA here. They offer financial, emotional, and practical support to everyone diagnosed with breast cancer. They have nurses, counsellors, and support groups to make sure everyone receives holistic and thorough care specific to their breast cancer.

I’m passionate about making sure people have the support they need right from the start. I’ve been in waiting rooms for 22 years, seeing people come out sobbing and not knowing what to do.

That’s why optimal care pathways are so important. Understanding your care, including your options, will help you work together with your treating team to ensure you are accessing the best care available to you right now. Just knowing the kind of information that’s available out there, like BCNA, can make the experience so much easier.