The number that kept me glued to the couch for a week
It was a Tuesday in late spring when my oncologist's office called and asked if I had a few minutes. Of course I had a few minutes. I had nothing but minutes. I had been staring at my phone for three days straight, waiting for the Recurrence Score from my Oncotype DX test to drop into my patient portal, and every notification sound made my stomach flip like a coin in a washing machine. When the nurse said, "Are you sitting down?" I laughed, because I had not stood up in approximately 41 hours. Learn more about Fiebre Reumática Y Su Erupción Cutánea Característica.
I want to be clear about something before I tell you what the number was. I am not writing this from a place of wisdom. I am writing it from a slightly stained corner cushion in my loungeroom in Adelaide, with a cat on my feet, a half-finished cup of tea, and the kind of brain fog that comes from reading too many breast cancer forums at 2am. The Oncotype test, for those who have not had the pleasure, looks at 21 genes inside your tumour tissue and spits out a Recurrence Score between 0 and 100. Lower numbers suggest a lower risk of the cancer coming back, and a lower chance that chemotherapy will actually help. Higher numbers suggest the opposite. In between, you get a kind of grey zone where you and your oncologist have to look at each other and make a guess with your whole life on the table.
The test was ordered after my surgery at Flinders Medical Centre, and the sample was sent off to a lab in the United States, which feels absurd when you think about it. A piece of me, on a plane, while I tried to make spaghetti bolognese for my kids and pretended that I was fine. I am a person who is usually fine. I have a job, a small dog, a husband who makes a passable flat white, and a tendency to cope by making jokes. But the waiting period after that test was ordered turned me into someone I did not recognise. Someone who could not watch a single episode of Bluey without crying at the theme song. Someone who googled "what if my oncotype score is 30" at 11pm and then "what if my oncotype score is 31" ten minutes later, as if the universe would sense the slight difference in my search history and reward me.
In Australia, we are lucky in some ways and unlucky in others. The Oncotype DX test is subsidised under Medicare for certain hormone-receptor positive, HER2-negative early breast cancers, which I qualified for after my oncologist ticked the right boxes. That meant the cost of the test itself was not the thing keeping me awake. The thing keeping me awake was the gap between "we have ordered it" and "we have the result." That gap was nine days, and I spent eight of them horizontal, with the blinds drawn, occasionally remembering to drink water. This is the story of that week. The score. The spiral. The couch. And the small, ordinary things that eventually pulled me back to standing.
What the oncotype score actually means
The Oncotype DX test is not a vibes check. It is a genomic assay that runs your tumour tissue through a machine and comes back with a number that is supposed to help you and your doctor decide whether chemotherapy is worth the side effects. Scores below 15 generally suggest that hormone therapy alone is enough, and chemo would be overkill. Scores above 25 lean the other way, suggesting chemo is likely to add a meaningful benefit. Anything between 16 and 25 lands in what my oncologist cheerfully called "the wobbly middle," where the decision becomes a conversation rather than a calculation.
For me, the most frustrating part was that the score was not really a yes or no. It was a probability. A 16 does not mean you are safe. It means your risk of distant recurrence over ten years is, say, 8 percent on hormones alone versus 6 percent with chemo added. You are weighing a 2 percent absolute benefit against months of hair loss, nausea, fatigue, and the small but real risk of long-term side effects. That is not a medical decision. That is a values decision. And values decisions are hard to make when you are crying in the Bunnings car park because they have started selling Christmas decorations and the world has gone insane.
| Oncotype Recurrence Score | What it generally suggests | Chemo likely to help? |
|---|---|---|
| 0–15 | Low risk of distant recurrence | Usually no |
| 16–25 | Intermediate risk, decisions are individual | Maybe, depending on age and tumour size |
| 26–100 | Higher risk of distant recurrence | Often yes |
There is a newer version of the test called Oncotype RS, which some Australian oncologists are now using, and the thresholds can shift slightly depending on whether you are pre- or post-menopausal. My oncologist at Flinders walked me through all of this with the patience of a primary school teacher, which I needed, because I had already convinced myself that I was going to be a 32.
The phone call and the number I was not expecting
When the nurse asked if I was sitting down, I said, "I have not stood up since Wednesday." She laughed politely and then told me my score. It was 19. Nineteen. Right in the middle of the wobbly zone, exactly where I did not want to be. I had told myself I would be happy with anything under 25, but the truth is I had been bargaining with the universe for a 12. I had been praying for a number that came with a clear answer. Instead, I got a number that came with a question.
My oncologist called me back an hour later, after I had texted her approximately forty-seven times, and we talked through what 19 actually meant in my specific case. I was 44, which counted in my favour. My tumour was small, which counted in my favour. My lymph nodes were clear, which counted in my favour. But the grade was 2, and there was some lymphovascular invasion, which counted against me. She told me that for someone like me, with my specific combination of factors, the absolute benefit of chemo would be somewhere between 1 and 3 percent. She told me that some of her patients would take that bet and some would not, and that either decision would be reasonable.
I hung up the phone, stared at the ceiling, and felt absolutely nothing for about twenty minutes. Then I felt everything, all at once. I thought about my kids starting school in Adelaide in a few weeks. I thought about my mum, who had been through her own cancer journey fifteen years ago. I thought about the new kind of normal that I was apparently going to be living in, where every blood test, every scan, every ache in my left shoulder would be filtered through this little number.
The week I spent on the couch
By Thursday, I had decided that the only reasonable response to a wobbly 19 was to become one with the couch. I moved in like it was a small Adelaide share house. I had a blanket, a laptop, a tub of Tim Tams, and a stack of magazines I had bought in 2019 and never opened. I did not answer the door. I did not reply to messages. I told my husband I was fine, which is Australian for "please leave me alone but also do not leave me alone."
I spent a lot of that week doing the thing that every breast cancer survivor I know has done at some point. I was reading other people's stories. There is a particular rabbit hole you can fall into on nights when the anxiety is loud, and I fell down it hard. I read why I ditched the forums and finally called my real oncologist twice on my own site, and it made me cry in a good way. I read about other women who had made the chemo call at 18, at 22, at 28. I read about women who had said no to chemo and felt great. I read about women who had said yes and felt terrible. I read everything I could find.
In between the reading, I slept. I watched old episodes of Offspring. I let the dog sit on my lap. I ate toast with Vegemite, which is the Australian equivalent of holding a security blanket. I cried at a Bunnings ad. I did not shower for two days, which I am including here because I want to be honest about what a spiral actually looks like in real life. It does not look like a movie montage. It looks like a woman in tracksuit pants staring at a spreadsheet of recurrence statistics and trying to figure out which of the rows applies to her.
The second wave of anxiety
Here is something nobody warned me about. The anxiety does not just live in the waiting period. It moves in. It pays rent. It starts leaving mugs around the house and complaining about your cooking. The day I got my score, I expected to feel relief, and I did, for about four hours. Then the second wave hit. The wave that says: "Okay, but what if the score is wrong? What if the lab made a mistake? What if there is some other tumour somewhere that they have not found yet? What if I make the wrong decision and I am one of the unlucky ones?"
That second wave is the one that keeps you on the couch. It is the one that makes the blinds stay closed. It is the one that whispers in your ear that you are being dramatic, and then, in the same breath, that you are not being dramatic enough. I have talked to other women through Breast Cancer Network Australia about this exact phenomenon, and almost everyone has had their own version of the second wave. Some people get it after surgery. Some get it after radiation. I got mine after a number, which feels absurd, but here we are.
What helped, eventually, was not a new piece of information. I had all the information. I had read every paper. I had a brilliant oncologist. What helped was time, and a few small, intentional things that I am going to share, in case you are reading this from your own couch, in your own tracksuit pants, in your own Adelaide or Sydney or Perth loungeroom.
Making the chemo decision
After about five days on the couch, I dragged myself back to my oncologist's office to actually make the call. We talked through the TAILORx trial data, which is the big international study that Oncotype scores are based on, and we talked about how my age and tumour biology nudged the math one way rather than another. She gave me a printout with three columns on it. I took it home, put it on the fridge with a magnet shaped like a koala, and looked at it every time I made a cup of tea.
I want to be careful here, because I am not a doctor and I would never tell someone else what to do with their own score. What I will say is that the decision felt less impossible once I stopped trying to make it perfectly. There is no perfectly. There is just the choice you can live with, made with the best information you had on the day, in consultation with someone you trust. I chose to have chemotherapy, with a reduced regimen, because the lymphovascular invasion kept nagging at me and I wanted to be able to tell my kids, fifteen years from now, that I threw everything reasonable at it. Another woman with a 19 might choose differently, and she would not be wrong.
I also want to mention something I came across while I was deep in the forums, which had nothing to do with breast cancer but I still think about. There is a review on Exantema about rheumatic fever and its characteristic rash. I clicked on it by accident while trying to find information about a chemo side effect, and I read the whole thing, and I cannot really explain why, but it helped. Sometimes the brain just needs somewhere else to go for a minute.
The small things that pulled me back
The first thing that helped was a phone call with a friend who had been through this two years before me. She did not try to fix me. She did not tell me to be positive. She said, "That sounds like a shit week, Nic," and then she listened. I had not realised how much I needed someone to simply name the week as a shit week without trying to make it into a lesson. I think that is what we owe each other in this community. Not advice, not affirmations, just the willingness to sit in the muck with someone.
The second thing that helped was a walk. Not a power walk. Not a 10,000-steps walk. A walk to the end of my street, in thongs, with the dog, where I did not check my phone once. The sun was out, which is not always a given in Adelaide in November, and I sat on the kerb for ten minutes and watched a magpie hop around a puddle. The magpie did not care about my recurrence score. The magpie was just out here living, and I needed to remember that was still an option available to me.
The third thing that helped was a piece I had been avoiding for a while about what to say, and what to skip. Reading it, I realised I had been treating myself the way I would never let a friend treat me. I had been telling myself to stay positive and trust the process and everything happens for a reason. I would never say that to a friend. I would say, "That sounds awful, and I am here." So I started saying that to myself, and it felt ridiculous and necessary in equal measure.
Talking to other women about it
A few weeks after the couch week, I started to talk about it. Not in a big, public way, but in the small, scattered way that real conversations happen. I brought it up at my regular catch-up with a group of women from my kids' school. I mentioned it in a Breast Cancer Network Australia online forum. I said the number out loud, 19, and watched other women nod because they had their own number. 14. 22. 31. 8. 26. Every one of them carried a tiny story inside them, and most of them had not told it to anyone outside their inner circle.
What I have learned, a few months out, is that the score is not the verdict I thought it was. It is one piece of information, sitting alongside a hundred other pieces, and it does not get to decide who I am. I made a decision about chemo with my oncologist, and I am at peace with it, and I still have bad days where the second wave shows up uninvited. I still keep the blinds closed sometimes. I still eat toast with Vegemite when things feel heavy. But I get up, eventually. That is the thing about the couch. It will hold you for a week, and then it will start to feel less like a refuge and more like a place you are hiding. And the world, with its magpies and its Bunnings and its terrible Christmas decorations, will still be out there, waiting for you to come back to it. If you are in the middle of your own score week, the kindest thing I can tell you is this: the couch is allowed, the spiral is allowed, and you will not live there forever.