That is the question.
In this country, following treatment for breast cancer, the protocol is that you have no monitoring or follow-up scans unless you are displaying symptoms of secondaries. Signs that your cancer has spread to other parts of your body.
This was not what I was expecting. I was expecting that I would be having regular scans to ensure that my treatment had worked and to check for signs of recurrence – especially given the aggressive, fast-moving nature of my cancer, and the strong likelihood of it returning.
Uncomfortable with this prospect and curious about the rationale, I repeatedly quizzed my oncologist.
She explained that there is no evidence to show that discovering secondaries early helps people to live longer. If I develop metastatic cancer (cancer that has spread beyond its original site), whether I receive treatment for it three months after it develops, or six, will not change my final outcome.
I really struggled to get my head around this. It made little logical sense to me. After all, don’t we have it drilled in to us that the earlier we discover cancer the better in terms of efficacy of treatment? And if that is the case then why wait until any secondaries are symptomatic, by which time they could presumably be far more widespread and difficult to treat? Surely better to find them early on, when they are small and few in number, and presumably more easy to treat? Did it mean that treatment was ineffective? It simply did not stack up for me, however many times I asked my oncologist to explain, explain and explain again.
My underlying suspicion was that it was about saving costs for the NHS. My oncologist assured me this was not the case. She explained that, as with everything cancer related, it is about balancing risk. Repeated scanning is not good for us. The risks of developing a fatal cancer from a CT scan are about one in 2000. My doctor explained that the NICE guidelines are there in part to prevent the NHS causing cancer through repeated and unnecessary scanning. I understand that, and if I was someone whose cancer may come back in 20 years, I can see that having six monthly scans could itself carry a real risk to my health. But I have been told that if my cancer comes back it will be quickly – in months or a few years. We would therefore be looking at maybe six or eight scans for me, not 40. That feels very different in terms of risk. I struggle to see why all breast cancers are treated the same, when quite clearly, they are not all the same.
And so I spoke to another oncologist, from a different country, keen to know if this was a common understanding, or one limited to the NHS. And I learnt that while there may indeed be some benefits of discovering secondaries earlier (fewer, smaller tumours might make you eligible for inclusion on trials for new treatments), the understanding that early detection of secondaries makes little difference to a patient's final outcomes is shared across borders.
And yet still it did not sit comfortably with me. After months of raising it, I finally persuaded my oncologist to agree to scanning me at the end of my treatment. A 'base-line' scan. I argued that I wanted to know what was going on in my body. My thinking being that this would serve to reassure me that treatment had worked and allow me some peace of mind to enter more assuredly back into the slip stream of life. And if not, well, then I’d rather know so I could adjust my life and that of my family accordingly.
And so, last week I had a brain and body scan.
And tomorrow, I get the results.
And today, as I contemplate the potential outcomes tomorrow may bring, the penny is finally dropping as to why the guidelines are as they are, and why my oncologist was reluctant to scan me.
It is not what she has said to me that suddenly makes sense. Rather it is a realisation that it is what she hasn’t said to me that is the key...
Having a diagnosis of primary breast cancer and having a diagnosis of secondary breast cancer are not the same thing.
With primary cancer, there is the hope that mainstream treatments will cure you of cancer, especially if discovered early.
With secondary cancer, there is not.
Instead, conventional treatment for secondary breast cancer is seen as ‘palliative’. It is aimed at reducing symptoms and improving quality of life, not at getting rid of the cancer. Because of its complexity and the difficulties of treatment, secondary cancer is deemed ‘incurable’.
The chances are good that my scans will come back clear tomorrow - I would be unlucky if my cancer has been spreading during active treatment. An outcome of N.E.D (No Evidence of Disease) will give me reassurance that, for now, there are no detectable tumours. It will not mean that there are categorically no tumours – tumours under a certain size are impossible to detect. It will not mean that tumours might not grow in the coming months. But it will mean that, right now, I have no significant disease. This is the best reassurance that I could have at this stage of my journey and would allow me, for now least, to breathe a little easier.
But as I learnt 14 long months ago, my hope may well be misplaced. It is possible that my scans will not be alright. And then what?
Then I would know that I had already stepped over a threshold into a different realm. The equation would have shifted dramatically. Seismically. Stage 4 cancer.
As my oncologist said to me during our last discussion 'But what do we do if we do a scan and find a 2mm metastases in your brain?'. Treatment for secondary cancer is aimed at alleviating symptoms. So what is the protocol if you have no sympromts as yet? Presumably that would mean no treatment, for now at least? But, rather than living in happy ignorance of the lurking time bomb within me and moving on with my life regardless, I would instead be living with the knowledge that all is not infact alright and that I am entering a new and frankly far more grave place than I have been in so far.
What do I do with that knowledge?
It reminds me of the dilemmas of early pregnancy. With my first two children we had no prenatal screening tests. This was partly circumstantial (we were relocating from London to Lyon at the key moment) and partly loose choice and blind faith - a belief that we would somehow cope with whatever was coming our way. But when it came to our third pregnancy, the context felt different, we felt less robust. We had two other children to consider, we were tired, spread thinly, less resilient. We agreed to prenatal testing. But we did not really consider what we would do if the results were challenging. And so when the tests showed that my baby was high risk for downs syndrome (not surprisingly as I was almost 40), we were suddenly thrown into a world of uncertainity and confusion, with tough decisions to make. We belatedly questioned whether we should have had the tests at all – but we could not put the information we had been given back in the bottle.
And so today, after having fought for it so hard and with such certainty, I sit here slightly less sure, wondering if having the scans was indeed the best thing to do. I guess I have a dose of what is commonly referred to as 'scanxiety'.
I do. Want. To know.
And yet. I don’t. Want. To know.
But it is done now, and when I meet my oncologist tomorrow she will have my scan results on her screen. I cannot imagine a situation where I ask her not to tell me. And so I will hear them. And whatever I learn tomorrow, I will not be able to unlearn.
I know that my original reasons for wanting the scans still stands. I do want to know what is happening in my body. I do want to have my eyes wide open on this journey. I do want to be able to shape our lives in preparation for what lies ahead if it is not good news. And I do want to enjoy the relief of this moment if it is good news. But I am nonetheless nervous.
One thing I am sure of - whatever lies ahead, we will surely rise to meet it.
Comentarios