Claire takes on The MoonWalk, whilst living with incurable secondary breast cancer

“There isn’t as much understanding as there should be about secondary breast cancer and we need to raise more awareness”

“I’ve been living with incurable Stage 4 secondary breast cancer for almost five years.

Early in December 2016, I found what I thought was a single lump in my right breast. I made a doctor’s appointment and was referred to the hospital within two weeks. They gave me a mammogram and biopsy and I went back to the hospital for my results on the day before my 41st birthday. 

The mammogram revealed that I actually had three separate tumours within an area of my breast which measured 14cm by 7cm. I think I already knew before I was given my results, that I had breast cancer – so when I was officially told, I wasn’t shocked at all. My immediate thought was “right – what are we going to do about it?”

My husband Graham was more upset about my initial diagnosis than I was. I think it always seems to be more difficult for families to take on the news, than the person themselves. The family can feel a little helpless – they don’t know what to say, what to do, or how to react. 

The initial plan was that I would have chemotherapy to shrink the tumour, followed by a mastectomy, then I’d have radiotherapy as a back-up. At this stage, I expected – and hoped – that in a year’s time my treatment would be over. 

However, the doctors wanted to check that I didn’t have cancer anywhere else and sent me for a bone scan and CT scan. I also had day surgery to remove some lymph nodes. When I returned to the hospital for the results from these further tests, they suggested that I bring someone with me. The scans had shown several tumours in my liver and there was also cancer in some of the lymph nodes. Just weeks after being given my initial breast cancer diagnosis, I was told that my cancer had spread and was incurable. 

I didn’t ask for a prognosis – I didn’t want to be thinking about how long I have left and in effect living by the clock. Giving an accurate prognosis is so difficult anyway. Having been diagnosed with secondary breast cancer, my treatment plan immediately changed. I was told there was no point having a mastectomy and that the doctors would be able to keep me well for a while but that I would be on medication for life.  

My secondary breast cancer diagnosis was a much bigger shock than when I was initially diagnosed, but in my mind, all I wanted to think about was what we were going to do next! Plan B was six sessions of strong chemotherapy, followed by radiotherapy. Since those treatments finished, I’ve been given two different drugs intravenously every three weeks, plus a monthly injection.

I was told initially that I would probably be on this regime for 18 months, before having to change to something else. I’m still on the same plan now after almost five years and it’s working very well for me! I’m lucky that I have very few side effects, apart from frequent nose bleeds. I feel that I get off quite lightly compared to a lot of people and I’m lucky that my treatment hasn’t been affected at all by Covid.

I’ve kept working all the way through my treatment - except for during the first lockdown – and I’ve tried to keep my life as normal as possible in many other ways too. Someone asked me recently how my treatment was going. I replied that it was like going to Tesco’s – I just turn up every three weeks and get the same medication, come out and return again in another three weeks!

On top of my drugs and injections, since my diagnosis I’ve also done quite a bit of my own research, to find out what I can do in terms of my lifestyle, to potentially give myself a better outcome. For instance, at the beginning I changed to a vegan diet and cut sugar out of my diet totally for 18 months. I’ve had a personal trainer for the last 8 years, since before cancer – mentally, exercise has been really good for me too. 

I also chat regularly to other patients both in the UK and the United States who are on the same medication – we compare notes on how things are going, as well as what each of us is doing holistically to keep as healthy as possible. It’s good to feel connected to other people who are going through the same experience.

I manage to lead a relatively normal life and if people meet me, they wouldn’t know that I have incurable cancer. I did start to have panic attacks after we came out of the last lockdown, but I then had some counselling, which was really helpful.

I have scans every six months – they were happening every three months, but I asked my medical team about making them less frequent, as I was getting too much “scanxiety”. Obviously, if I do develop any new symptoms, I’ll have scans more regularly again. At the moment, none of my tumours show up on the scans and I’ve been like that for the last two and a half years.

There are so many treatments available now - other secondary breast cancer patients who I’ve met are now 5 or 6 different treatments down the line and living a good life, although often with side effects.  We’re all incredibly grateful that scientists are constantly developing new ways of treating people like us.

   

I discovered Walk the Walk during my chemotherapy, when I was offered the use of a “Scalp Cooler”, a wonderful machine which helps patients avoid losing their hair. The machine I used had been funded by Walk the Walk and worked very well for me - my thick, curly hair only thinned a little during chemo. I think I would have felt a lot more like a cancer patient if I had lost my hair.  Keeping most of mine was one less thing to have to worry about during the treatment process.

I’d not heard about Walk the Walk before using the Scalp Cooler, but found more details online and signed up for the charity’s MoonWalk London with my husband in 2019. Through the Scalp Cooler, Walk the Walk had provided something which really made a difference to me during my cancer treatment. I wanted to put something back in the pot, so to speak, so that the machines and other resources could be provided for other people and help them on their cancer journey too. 

My husband and I loved taking part in The MoonWalk, wearing our decorated bras! It was such a brilliant atmosphere and the support from our fellow walkers was incredible, especially towards the end when everyone was getting tired. In 2022, I’m really excited to be taking on the half marathon challenge again at The MoonWalk London, this time with my two younger sisters, with whom I’m very close. Our grandmother was also diagnosed with breast cancer many years ago, but came through treatment and lived to a ripe old age.

There isn’t as much understanding as there should be about secondary breast cancer and we need to raise more awareness – it’s wonderful that I’m able to do that. I know people who’ve been to A and E departments and when they talk about their cancer, even some doctors there just don’t understand what the “secondary” bit is about! We need to talk more about secondary breast cancer, help everyone understand what it means and encourage people of all ages to get any unusual body changes or symptoms checked out”.

Thank you for sharing your story Claire and we look forward to seeing you and your sisters at The MoonWalk London 2022!

If you feel motivated to unite with us against breast cancer... check out our challenges here and if you would like to share your story with us, please email us and we will be in touch.

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