Alt text: an image created with watercolours of white circles painted onto a reddish-pink background. The circles are in 4 different sizes & form a random pattern. They represent my thought-processes as I was struggling to decide what to do for the best – literally, I was ‘going round in circles.’
Trigger warning: contains details about the side effects of cancer treatments & my emotions about the difficult decisions that I was faced with.
Before surgery, I’d agreed to a plan of a lumpectomy & partial (targeted) radiotherapy with the cancer team at Charing Cross, but of course, the plan can change once the surgeon can see exactly what’s going on during the operation.
My operation was delayed from March to July because of COVID-19 but I started tamoxifen (tablets) to halt the spread of cancer. During surgery, the original lump that was found in my routine mammogram had shrunk, but a new little one had grown beside it. Cancer was also found in one of my lymph nodes which made me feel sick with worry. Finding this shouldn’t have had quite such an impact on me because its presence was suspected during the biopsy, but because I’m pretty certain that my mum died of secondary breast cancer because it spread via her lymph nodes, my heart was filled with terror. (30+ years ago, no one knew that removing nodes as part of breast cancer surgery may prevent the cancer spreading).
Cancer in the lymph node triggered a CT scan & a bone scan; both my scans, thankfully, were clear, meaning the cancer hadn’t spread.
Due to the new growth in my breast, the cancer team wanted to try & confirm what was happening as well as finding the appropriate treatment for me – in short, whether I would benefit from having chemotherapy.
In order to determine the best plan of action, the cancer team sent my lymph node to the US for testing (because the system that they needed isn’t available yet in the UK). Yep, my little lymph node was flown halfway across the world to Salt Lake City for testing on the ‘Myriad’ system at the University of Utah (it’s an ‘EndoPredict’ system)! I was amazed that they even considered doing this for me when they were dealing with a backlog of cancer surgery caused by the pandemic. My breast cancer nurse even apologised that the result would take 2 weeks to come back!
My ‘EndoPredict’ score came back as 3.7. Because a score of 3.3+ would usually advise that a patient has chemotherapy, that 0.4 ‘tip over’ meant that my oncologist had to discuss both the benefits as well as the side effects of treatment with me. It became clear very early into the conversation that I already had many of the side effects that chemotherapy causes due to my impairment. As she went down the list of side effects, I simply replied “yep, I have that already.” I watched as her eyebrows raised further & further until she finally said, “you know, I think I’m going to talk all of this over with other colleagues & we’ll talk again in a couple of days.”
The team & I were left to mull over my quality of life versus preventing the cancer from returning. The ‘EndoPredict’ also showed that I had 11% chance of “distant” cancer recurrence over 10 years (the term used for incurable cancer). If I had chemotherapy, then this percentage reduces to 5%. If you flip the figures around then without chemo, I already have an 89% of it not returning which are pretty good odds.
I’m fully aware that I could decide whether to have this life-saving treatment & so I hope my blog doesn’t come across as insensitive. I know many people, including my mum & my sister, that had no choice at all – they had to have chemo. What I’m trying to achieve with this blog is conveying some sort of sense of how difficult it was to make up my mind about it, & also the feeling that if I didn’t make the “right” decision, then if the cancer returned, it would all be my fault. The side effects of the treatment & the number of needles that I would need to have (I have a needle phobia) truly terrified me, but then I got this bizarre notion into my head that I was being pathetic; that I was basing my judgements just on my phobia & fear of pain; that somehow people would think less of me because I’d’ wimped out’ & taken an easier option (I know, weird, right? But my cancer diagnosis has warped my brain).
Believe me, it’s a hell of a lot to carry.
I had a video call with my sister. She looked at me in all seriousness & said, “All I’m saying is, I wasn’t disabled until I had chemo. You’re already disabled, think what impact it’s going to have on you, & if you don’t have to have it, don’t.”
A 6% benefit, that was all.
In the end, I did what I always do when faced with a dilemma, & I wrote out a list of ‘Pros & Cons.’ I was struggling to find ‘Pros’ when my oncologist rang back with a decision. First, she asked me if I’d made a decision. I said that I just couldn’t decide & I asked her what she thought. She said that the team had come to the conclusion that just for a 6% benefit, it wasn’t worth risking my quality of life. She said it with some nervousness as she knew how hellbent I was on getting all the life-saving treatment I could. I cried with relief & then admitted that I was hoping that it would be that very decision.
Here’s the list of Pros and Cons – written in July 2020:
- Once I’ve had it, there is only 5% chance of the cancer returning.
- On paper, when you read about all my medical issues and impairments, I appear very incapable and disabled, but I’m actually more resilient in real life. I came through surgery ok without a ventilator; blood gases normal and only one-night stay in hospital which wasn’t predicted.
- I’ve never had a career-break, and this could well give me ‘head-space’ that I really need.
- I’m well-supported at home and I’ve got some savings to tide me over (I haven’t got them now because like everyone else, I’ve been ordering random crap off the internet!)
- I know I’d be well-supported and well-regarded by the team at Charing Cross.
- I’d have peace of mind that every treatment was explored to prevent recurrence.
- I’m struggling to find any more PROS.
- All of the side effects – including bone-thinning, compromised lungs, numbness in my left foot but sometimes in my hands in the cold, chronic joint & neuropathic pain – I already have, and how much more will I be compromised?
- It’s still a pandemic with no end / vaccine in sight and I’m high risk-COVID. To lower my immune system, which is already compromised, is a gamble. If I caught COVID-19, I probably wouldn’t survive (in hindsight, I had COVID-19 twice & wasn’t hospitalised or needed any treatment other than paracetamol. Vaccines were approved in the latter part of 2020).
- 6 months treatment is a long time to be isolating at home. I’d miss a lot of my friends’ 50th birthday celebrations as well as my own (in the end, this didn’t matter because a new #Lockdown started in November 2020, so everyone largely missed out – thank god for ‘Zoom!’)
- I’m never comfortable in hospital because I find them to be inaccessible and the nurses are too busy to assist me (not their fault!)
- I’d want to negotiate PA (Personal Assistant) support to be accompanied whilst in hospital, but because of COVID-19, this might be tricky.
- I’d be so, so tired. I’m already wiped out by tamoxifen.
- Being away from both my jobs and physically changing (loss of hair, etc.), I’m afraid of losing my identity and status.
- I’m scared of making some of my impairments worse that it could ruin my quality of life, and I might not be able to work, go out, etc.
- The margin is so small – 3.3 is low risk. I’m only 3.7.
- 89% chance of the cancer not returning is quite high.
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What a journey, stay strong and kick on