A stark reminder that you can never relax

The results from the PET-CT scan I had at the beginning of this month could have been a lot worse but they did not bring the across-the-board good news we were hoping for.

Everything had been pointing to a positive overall response to the treatment I started in May for secondary breast cancer. However, the scan results showed that there has been some growth in the cancer that’s in my spine.

The level of growth is not enough to necessitate an immediate change in core treatment but I’m aware this could now happen sooner rather than later.

The results from the MRI scan I had yesterday will provide additional information that will help inform near-future treatment decisions. We’ll also be looking very closely at next month’s blood test results and I’m to have a repeat PET-CT scan in two months’ time.

I wasn’t surprised by the results; nothing surprises me with this, good or bad. I’m not freaking out but I am hugely disappointed.

We had hoped that the drugs were keeping everything under control. Rather, it turns out I’m having a varied response to treatment. Some aspects of the cancer are responding differently from others. While this is not usual, it’s also not hugely unusual.

I’d been having blood tests every month since starting treatment for the breast cancer that had spread or metastasised to my bones (the main focus is certain vertebrae in my spine) and bone marrow. We knew from the results that the drugs were working really well on the bone marrow front. We’d even postponed the PET-CT scan – my first since I was diagnosed – by a couple of months because things were looking so good. There had been some twitches here and there in my back in recent weeks but nothing approaching what I’d describe as pain.

The good news is that there’s no sign the cancer has spread anywhere else and my bone marrow function continues to improve. And so I continue on my current treatment.

Of potential significance is the fact that the latest blood test results showed that a tumour marker specific to secondary breast cancer is very slightly up. It’s fallen every month since I started treatment. While the rise is within acceptable limits, if it contines to rise – and depending on scan results – we’ll potentially be looking at calling it a day on the drugs I’m on and moving to the next line of treatment.

More positively, other tumour markers are continuing to fall.

There has been one change to treatment. “Bone mets” weakens your bones and puts you at risk of “skeletal related events” such as fracture, radiotherapy or surgery, or spinal cord compression. 

I was on a bone strengthening drug called zoledronic acid or Zometa that was aimed at preventing these SREs.  I’ve come off Zometa and have moved to a different drug – denosumab (Xgeva) – that is designed to do the same thing but in a different way. The two core drugs – fulvestrant (Faslodex) and abemaciclib (Verzenios) – haven’t changed. Treatment is on a monthly cycle; I went ahead with round #7 last week.

In other news, I’m still running, edging closer by the week to my 100th Parkrun, the free, volunteer-led 5k running event that takes place in parks up and down the country every Saturday morning. Just last weekend, visiting my family in Glasgow, I ticked off number 94. I ran with two of my brothers and a niece and nephew.

It’s taking some time to get my head round this latest development. Things had been going so well that I’d allowed myself to start looking further ahead than just one or two months. After this turn of events, it’s very much back to one month at a time.

So, a stark reminder that no matter how well you think things are going, with this disease you cannot take anything for granted. As I’ve said before, we can but take things as they come.

In the meantime, on we go. For now,  that involves a ten-day holiday in Israel and Jordan for my other half and me. It was have to been 14 days but we changed our outward flight to accommodate the MRI appointment and are leaving a few days later than planned. We fly out later today. An adventure awaits.

Lucky or unlucky? It depends how you look at it

Understandably, a lot of people get upset when you tell them you’ve been diagnosed with secondary breast cancer. My boss was one of the first people I told, back in April or May. We chatted and she said, sympathetically, that I’d been so unlucky.

She and I both know how serious any type of secondary cancer is. If you’ve been diagnosed early enough, it will be treatable and can be controlled – in some cases for many years – but ultimately it’s incurable. What treatment does is buy you time. 

Instinctively I agreed with my boss. To find out at the age of 55 that your likely prognosis is in years not decades felt pretty unlucky to me.

Almost immediately, though, it occurred to me that that wasn’t actually the case. In fact, I said to her while trying to hold back tears, I’ve been incredibly lucky.

What do I mean by that?

Well, there have been some very sad and difficult times but, broadly speaking, I have not had a hard life.

I have an amazing partner I’ve essentially been with since I was 21. We’ve had and are continuing to have lots of good times together.

I have two lovely, healthy and seemingly happy young-adult children. 

Mum, my brothers and me

I had a happy childhood with loving parents and five great brothers. My dad died just a few years ago but my mum is alive and kicking and clearly loves me to bits. My brothers and I are all still very close. The photo here is from when I was up in Glasgow this summer.

I have two aunts – my dad’s two sisters – out in the US, one of whom is also my godmother. I’m very close to both despite the distance between us. I went out to visit them this past summer, thus the photo below. One of my brothers was there too, from Scotland, and while I know the term “joy-filled” sounds schmaltzy and cliched, I can’t think of a better way to describe the few days we were all together.

My husband’s parents, my in-laws, thought the world of me. We were lucky to have them in our lives for as long as we did.

Outside of the family, I have a godson and goddaughter I’m incredibly fond of. I got to see both of them this summer.

My lovely aunts and me

I have numerous wonderful friends and lots of different friendship and acquaintanceship groups.

We’re financially secure and I have great colleagues and a job I love.

I’ve been able to travel extensively, both on a personal and professional level.

I’ve been responding well to treatment; there was no guarantee I would. 

Physically, most of the time, I really don’t feel like there’s anything wrong with me over and above the standard things any 56-year-old female might expect to have. I’m cycling, running and playing tennis.

Other treatment options will be available once the specific treatment that I’m on stops working. I hope it’ll be a long time before that happens but I’m aware it could happen sooner rather than later.

So have I been lucky or unlucky? Maybe it’s not a question of one or the other. We’ve had our share of troubles and no-one would ever choose to have what I have. Regardless of how well I feel physically at the moment, living with an incurable disease is really tough emotionally. Among other things it’s hard not to feel guilty for bringing this upset into everyone’s lives. 

Healthwise, I can but hope for the best and take the coming months and hopefully years as they come. In the meantime, I’ll try to stay calm and be easy on myself, and keep appreciating and making the most of this life – lucky or unlucky – that I have.