Chemo has been cancelled. WTAF?!

In the weirdest turn of events since events got weird, three days before having my PICC line put in and four days before starting chemo, having gone through the long arc of disbelief, rage and acceptance on having chemo INCLUDING CUTTING MY HAIR (yes, we can laugh, Honestly. This IS the cancer comedy after all) I’ve just been told I’m not having chemo (laughs maniacally).

“What the actual fuck?!” you metaphorically scream with your metaphorical head in your metaphorical, or perhaps even actual, hands ( I know you’re doing it , because that’s what I did). The short answer is it’s to do with the Clinical Trial I hadn’t bothered to mention, stuff I’d spared you all because… well, it’s detail you didn’t need to know, and we, including my cancer team, thought it all pointed in one big chemical direction. So here’s the long-ish answer

Cancer Maths.

Cancer treatment involves quite a bit of cancer maths. With primary breast cancer, treatment involves dealing with what’s IN YOU at that given moment, and then you’re looking at reducing the risk of of localised recurrence or metastases (secondaries). The data looks at 10-15 year return rates. Cancer maths at the medical end of the spectrum focuses on probability garnered from clinical trials and studies. It’s all data driven.

Cancer Blind Spots

I’ve mentioned that there are different grades of breast cancer but also cancers with different receptors which can determine treatment. For example, for a hormone receptive cancer, a cancer that grows with hormones, the treatment is hormone therapy. For high grade, fast growing tumours, chemo is really effective because it’s brilliant at hitting cells that sub-divide quickly. My particular type of Breast Cancer (low grade, hormone positive, HER2 negative) tends to get treated with hormone therapy AS WELL as  chemo, just for a belts and braces approach and in the absence of more more information about the genetic make up of the cancer and what it might do. Blind spots. That means, lots of women go through chemo even though it might not have a direct impact on reducing long term recurrence. Yah. Painful. Traumatic. Also, expensive.

The Future.

A t the cutting edge of diagnostics however, is personalised diagnostics and treatment based on the genetic make up of the particular tumour. Many diagnostic tools are already in place and the one that currently isn’t widely available on the NHS is Prosigna . This tool provides highly accurate and personalised predictions based on the genetic make up of the tumour.

A few weeks ago, I consented to have my data used in the Optima Trial which is gathering data to predict who might benefit from chemo. It was a randomised, double blind trial with 77% of people going straight to chemo and the rest being tested with Prosigna . The Prosigna tool tests the tumours, categorizes them further based on the gene assay. The tool helps determine who would most benefit from Chemo, based on robust data. Some of those tested would be referred for chemotherapy. Those who they predict wouldn’t benefit based on the analysis, would go to straight to hormone therapy.

Back to me..

It turns out I was randomised into the Prosigna arm of the trial and, upon further testing, it was decided that my best treatment plan involved going straight to hormone therapy. Meaning, chemotherapy was highly unlikely to have any benefit on the long term prevention of recurrance.

For me, having chemo is like using a blind bazooka to kill a really mean fuckin’ ant. And missing because the ant is under a rock somewhere over there, meanwhile obliterating everything in its wake, all the while hoping some shrapnel might hit said ant. In my case, long term hormone therapy, along with a good blast of targeted radiotherapy, is much more likely to prevent a recurrence.

Now, way back when, this exact outcome was determined to be extremely unlikely. Vanishingly remote. Even if I was randomised into Optima, there were characteristics of my cancer (chunky tumour, node positive, extra-capsular) that led the team to believe that I’d go straight to chemotherapy and that this was the best thing to do for me regardless. To de-risk the situation as much as possible. And so the course was set for chemo. Letters were received, a chemo schedule put in place. Holidays were cancelled. Hair was cut. I published several blogs to help me come to grips with it all. We cried, we processed, we dealt, we accepted. We braced ourselves. 

And so, here we are…

Needless to say, we are overjoyed but what I will also say is that we are kind of emotionally fried. I am writing this on the day we had the meeting with Oncy so the feelings are fresh and vibrating. We’ve been through the whole, “is it an admin error?”. Tom says it feels like we’ve just had a stay of execution.

Suddenly, our daughters don’t need to experience their mother going through chemo. I don’t have to watch my daughters and my husband watch me going through chemo. In one fell swoop, it’s all different.

I for one feel an overwhelming desire to stare at a blank wall until it sinks in. 

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8 thoughts on “Chemo has been cancelled. WTAF?!

  1. What a huge relief but what a roller coaster of information to have to come to grips with. This is wonderful news. It’s like watching the tsunami rushing towards you and then suddenly the waves calm down – almost unbelievable. Much love Priscilla

  2. That is fabulous news Siobhann, but how totally emotionally frazzling! As for THE HAIR – love that episode of Fleabag – you a) look wonderful b) now know what it’s like to sport a totally different look and c) needn’t fear nits, quite as much. All the more inspiring that you have donated your tresses and raised lots of funds without needing to… Big hug, Laetitia x

    P.S. love your blog & the way it’s written 🙂

    1. Thanks for your gorgeous words cuz. I had another great reason re hair the other day – you can eat ice-cream in the wind.

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