Hi TUL24
Jaybro reporting as requested 🙂 When you read blogs like Liz O’Riordan’s (breast cancer surgeon with breast cancer) it’s a real eye opener. Not just the way she had to learn to be a bc patient but how it changed her outlook completely: she’d felt real compassion for her patients but it was only her own experience going through the cancer factory (my word) that she realised just how delicate a touch it requires and how short of the mark specialists can fall.
I’m guessing Evie mentioned me because I can outdo you in the ‘lymph node stakes’ at 19/21 infected. No one made much of this once they’d been removed. Maybe because I was a bit of a zombie during that time of chemo? I marvel that you ‘walked’ through it all - I had to be dragged. My CT scan showed no signs of spread though there were enlarged nodes in my central chest (never mentioned again - my adjuvant oncology nurse said to forget about them so I did) and my MRI was clear. All good news. Thank god for lymph nodes doing their job.
Then I made a huge mistake and broke the cardinal rule of DO NOT GOOGLE. Having completed my treatments, I felt ready to ask the questions I couldn’t ask before. I asked my bc nurse about my diagnosis and she brought it up on the screen and went through what it all meant. That night, lying in my usual anastrozole-induced state of alertness at 2am, I thought about one thing I’d seen that Belinda hadn't explained - my NPI score - so I googled it and ended in a bad state. Prognosis ‘poor’. Not really what one wants to know, having gone through a hellish time with chemo (radiotherapy was a doddle). I contacted Belinda and she replied with an amazing email that really put things into context. Statistics and percentages are nonsense to everyone except the specialists, who have to use them to calculate the best treatments and outcomes for each of us. My NPI score was the surgeon’s guide to the oncologists about what was required next. Each treatment, radiotherapy particularly, improves on that score so it becomes irrelevant (the reason she hadn’t mentioned it).
So I’m guessing your oncologist is stuck with the statistics. And she’s right. You are ‘high risk’. However, a little empathy would probably make her reframe what she is saying. Let’s say you have a 75% chance of survival in the first 5 years, like me. That sounds terrifying - we want out 100% back. We focus on the negative - it’s going to come back. But in fact, statistically, for every 4 women like us, ONE will get a recurrence. That means THREE of us will not. Belinda’s theory was that we can spend all our time worrying that we may be that one person and live in a fearful world - and then live as long as we would without cancer. So why waste time worrying over something we can’t control? We could reframe our thinking to ‘it may come back but the odds are good in our favour’. Not as high as we’d like but it’s not something we can change. Be one of the three. She suggested focusing on the ‘it won’t recur’ or ‘it might recur’ rather than ‘OMG it’s going to recur’. She said I might jump about a bit from one camp to another but, she ended, “just enjoy camping.” So that’s where I am, camping. I don't think about recurrence, though I do get occasional surges of adrenaline when I read a post from someone it’s happening to. I don’t ignore them. I recognise that’s my fear and I let it go. Belinda has convinced me that, if it happens, it happens, but the greater chance is that it won’t.
I hope I’ve explained it well enough. It’s the basis of my own blog. You may be someone who needs answers to all her questions. If that’s the case, it may help you keep a clear perspective. ‘High risk’ isn’t a guarantee that the cancer will return; it’s just more likely than for someone who perhaps had a lumpectomy and then hormone therapy, like my mum. (And she had a second, unrelated bc 20 years later! And she lived to 89).
If you want to read my blog, just PM me and I’ll give you the link. Liz O’R’s can be found via Google. Meantime, maybe think of your oncologist as a scientist who hasn’t quite grasped patient-skills as well as she ought. And talk to your bc nurse too. Good luck with the radiotherapy. I had the neck nodes zapped too - the worst I got was a dry throat. All the best,
Jan x
