Some women have no interest in knowing their prognosis once their treatment is finished but I wanted to know as much as possible about the likelihood of my breast cancer coming back or spreading.
So what are my chances? Well it doesn’t take a genius to work out that I’m at high risk of recurrence. There are several critical factors. I was still early stage (Stage 3a) and so was treated with what’s known as “curative intent”, but the tumour was big at the time of diagnosis, the cancer was fast growing, and, as they say in the business, there was axillary lymph node “involvement”, ie cancer cells had spread from the original tumour to the lymph nodes in my armpit. When that happens, there’s a higher chance that cancer cells that can’t be detected have spread elsewhere. The chemo I had before surgery did a great job in both the breast and the lymph nodes. Nonetheless, seven of the ten nodes that were removed during surgery were found to have some active – ie chemo-resistant – cancer cells. The concern is that any undetected cancer cells that may be elsewhere also survived chemo and that they’ll cause havoc in years to come. Letrozole, the hormone therapy I’m taking on a daily basis, is designed to make those cells slow or stop growing and/or spreading to other parts of the body. Zoledronic acid, the bone hardening drug I’m taking – every six months now – should also help.
There are various online tools where you or your doctor can pump in your data – such as NHS Predict, the Nottingham Prognostic Index and Adjuvant! Online (although this last one is offline at the moment) – and get information regarding, for example, your likely five- or ten-year survival rates with and without treatment. The information is often used to help patients who are at borderline risk to choose chemotherapy or not with their doctors. None of these tools deals specifically with women who had their chemo upfront as I did. Still, you get a pretty good idea.
The consultant oncologist has given me a percentage range for my future cancer risk, taking into account all the treatments I’ve had or am continuing to have. The range is so broad that if you focus on the figure at the higher end you freak out while at the lower end you think, ok, I can cope with that. On the positive side, the consultant says my “robust” response to chemotherapy makes her “hopeful” that my real risk of recurrence is lower than my predicted risk. I’m hopeful she’s right.
I’m not repeating here the figures from the consultant as that’s all they are, figures. There’s no way of knowing what will happen in your own, or indeed in any, particular case. You can have a poor prognosis and do well or have a good prognosis and do badly. Recurrence can happen in breast cancers that are caught far earlier than mine was. Early detection of primary breast cancer may result in you having less aggressive treatment and a subsequent low risk of recurrence, but it’s a common misconception that if you catch it early you’re guaranteed a lifelong “cure”. As we know (Recurrence 1: So you think you know about breast cancer), breast cancer can essentially come back any time and while secondary breast cancer is treatable, it cannot be cured… and survival rates are poor.
Many people still think that with breast cancer the risk of recurrence goes away – ie that you’re cured – if you’ve been “cancer free” for five years. It’s not true. The highest risk of recurrence with breast cancer is during the first two years following treatment but, with my breast cancer “subtype” – in common with about 70% of breast cancers, mine was oestrogen-receptor positive (ER+), ie it depended on oestrogen to grow – around half the cases of recurrence occur five years or more after diagnosis of the primary tumour. It can come back in five, ten, 15 or even 20 years. I recently came across a statistic that says that one third of breast cancer patients treated with anti-oestrogen hormone therapy currently relapse within 15 years.
So of course you worry about recurrence. Would anyone in my position – not long out of treatment and at high risk – really not? There are some great strategies and techniques for keeping the fear manageable. You have to work at it but they do work. I’m already so much more in charge of my thoughts – remember, folks, you control your thoughts, not the other way round – than I was even just a month ago. It’s funny but it comes as a real relief when you catch yourself worrying about something other than recurrence… such as whether we’d been driving around without car insurance for six months (we hadn’t, we’d just lost the documents)… or whether we’ve properly fixed that leak in the upstairs bathroom (I think we have)… or whether the boys will do ok in the exams they’re smack bang in the middle of (we’ll find out when they get the results in August). On that last point, incidentally, I’m worrying much more than the boys are. I think that’s good.
On the fear of recurrence front, ultimately I’m aiming to emulate the character played by Mark Rylance in the film Bridge of Spies. Tom Hanks asks Rylance repeatedly in the film: “Aren’t you worried?”. Rylance’s reply is always the same: “Would it help?”.
I’m aware I’m at risk of sounding rather flippant there. I don’t mean to. Getting used to the fact that I’m at some level of risk of recurrence indefinitely is not going to be easy. But that’s a damn good attitude to have. Worrying will not change the outcome.