I have triple negative breast cancer.
Whenever I say triple negative in my head, I can’t help saying it in my best robot/Dalek voice: t-r-i-p-l-e n-e-g-a-t-i-v-e. Exterminate, exterminate.
What this means is that my cancer doesn’t have hormone receptors or Human Epidermal Growth Factor Receptor 2 (HER2), which means it can’t be treated like some other breast cancers. About 15 per cent of breast cancers are triple negative, so it’s not as common as hormonally-positive breast cancers. Hormonal and targeted therapies like Tamoxifen or Herceptin are not an option for me. These therapies can be quite successful, but not without some annoying side effects, in keeping breast cancer cells under control for long periods of time.
This means that the main course of treatment for triple negative breast cancer is chemotherapy and it can be really effective in this way, more effective than on hormone positive breast cancer sometimes. But when your triple negative cancer turns out to be quite resistant to chemotherapy, it does lead to your doctors making that ‘I’m sorry’ face at you as they tell you there has been more disease progression. It’s that sort of lopsided grimace, arched eyebrow look of ‘this isn’t good, but we’re not giving up’.
Remember that episode of Sex and the City when Carrie discovers that the girl who went out with Aidan after they broke up has been making a face when discussing Carrie? And she can’t bear to have that girl making that face about her all over town? That’s the facial expression I see on my doctors’ faces when they tell me it’s time to try a new chemo. Just because this one didn’t work, doesn’t mean we won’t find one that works.
Because of its aggressiveness, potential for poorer prognosis and other special properties, there is a lot of research being done about triple negative breast cancer and future treatment options. Immunotherapy is looking promising for some triple negative breast cancers (of course, even within triple negative breast cancer there are differences from person to person). Some of these may be available for me in the future. Or the ship may have sailed on some of them for me by the time they are ready to be tried. I was going to be part of a trial earlier this year using Keytruda, which has had some success with melanoma and lung cancers. But then we discovered the little tumour in my brain and that ruled me out of the trial.
Googling statistics about triple negative breast cancer is pretty depressing and not advisable. For one thing, most of the statistics are quite out of date and there have been advances in care in the past five years, which means we aren’t comparing apples with apples. There is data that shows that the median length of survival after a metastatic triple negative breast cancer diagnosis is 13 months. I’m just coming up on that in November and I intend smashing that stat out of the park.
I am not, however, foolish enough to be in complete denial that bad times aren’t around the corner. I’m being prepared. Not taking anything for granted.
I recently read The Bright Hour: A Memoir of Living and Dying by Nina Riggs. I know some people think it is weird or ghoulish to read about these things when you are going through them. That it must be too close to home. I don’t find it that way at all. I feel like I’ve always learnt a lot about the world, how to process and deal with things, through reading. Why would now be any different? I’ve always believed in the power of storytelling.
Anyway, Nina Riggs also had triple negative breast cancer, which metastasised before she had completed her treatment. She and a good friend were both diagnosed with triple negative breast cancer in early 2015. It then spread to other organs and they both died within three days of each other in January 2017.
That was their experience of it and that doesn’t necessarily mean that it will be mine. But life can be short. So eat dessert.