Jane's story

We're sharing stories from some of our wonderful members of the secondary breast cancer community. Jane shares her story with us.

Hi, I’m Jane from Cheshire. I’m so happy to be able to share part of my journey with you, for two main reasons; the first being that we all feel the need to be heard, but more than that I want to encourage you to be brave, fill yourselves with love, laughter and hope, embrace this new version of you and go and grab life. It can still be amazing! We all know that there is a huge amount more to our stories than meets the eye, so this is mine in pretty much the smallest nutshell I could find!

My first primary breast cancer diagnosis was in 2009. I was just 43; otherwise fit, healthy,
with no family history of it, and so it came as a complete shock. Since then, and to this day three more diagnoses later, I have danced with cancer, be it gently and softly in ballet shoes, yet at other times in loud, clicky metal heels; a fierce and dramatic paso doble! As so many of us with secondary breast cancer can attest, our dance with this cruel and debilitating disease never ends. Even those in remission after a primary diagnosis with all the accompanying treatment, no matter how many years ago it may be, still feel that we live in the shadow of this spectre.

My first diagnosis was on the left, ductal, HER2+; no lump, just a thickening of the tissue (so easy to miss.) It was treated with a wide local excision plus two lots of further surgery, full node clearance (it was found in 12 of 28 nodes), then chemotherapy, FEC and Docetaxol. I lost my hair for the first time. I then my first course of radiotherapy, followed by 12 months of Herceptin.

Following this I had almost six years cancer-free before it came back in 2015, again on the left (inflammatory). This time it was also ER+ as well as HER2+ and so was treated as another primary. At this point I had a full mastectomy and LD flap reconstruction, more chemo (x6 cycles of Docetaxol), commencement on Tamoxifen plus IV Herceptin and Pertuzumab. I lost my hair for a second time. The following year in 2016 it decided to reappear in my right breast in the form of a 5cm tumour, ductal again, HER2+ and very mildly ER+. Again, it was treated as yet another primary and I had a second mastectomy, six nodes removed (1 positive), chemotherapy (x12 weekly cycles of Paclitaxol), continuation of Herceptin and Pertuzumab, followed by radiotherapy and a plan to have reconstruction on the right as soon as things had settled down. This time I used the cool cap as I couldn’t bear to lose my hair again. I was delighted when it 100% worked!

In 2017 I was dismayed to find that the cancer had now spread to the skin on both
mastectomy sites. At this point it became Stage 4 as it was now considered inoperable. I
started on Kadcyla, and am blessed to still be thriving on this amazing treatment. 

I am now sixteen years into my journey with breast cancer and every day have SO much to be thankful for. On first diagnosis we very quickly learned that our default reaction was one of positivity. Myself and Kieran, my husband of 31 years, knew that it was our responsibility to help our children Kate and Tom, who were only 12 and 13 at the time, to continue to flourish, and so we did our best to maintain a happy, honest and optimistic outlook, which ultimately felt very natural. Of course there have been many ups and downs, and I’ve needed lots of help and understanding at times. Since I made the difficult decision to medically retire as a Teaching Assistant in 2018, I decided to engage my artistic and creative streak to help me, and some amazing things have since happened!

Social media has been a wonderful way to connect with others in the breast cancer community. Living within this community, particularly with secondary breast cancer, is somewhere none of us who are in it want to be. We all try our hardest to make the best of it though, and many of us forge wonderful friendships created from the one thing that connects us all. For that reason, it’s a community filled with love, strength, inspiration, positivity, understanding, warmth and unending support. There are constant knocks from which we pick ourselves up time and again, and we carry on, mostly with smiles on our faces, renewed hope, and a love of life. When one goes down, we all feel it.

Having tentatively ‘put myself out there’, in April 2022 I was lucky enough to be selected as
a model in ‘The Show’ for Breast Cancer Now - the largest and arguably the most well-
known breast cancer charity. It was an amazing experience and lifted me completely out of
my comfort zone!

In order to make sense of what I was going through I was also writing a lot of poetry, and
am the proud (and unlikely) author of the Milestone Poem, an alternative poem that was
adopted by the fabulous End of Treatment Bell charity, and can now be found in numerous
hospital units up and down the country as well as abroad! The End of Treatment Bell has
become so important to so many people in a relatively short space of time, but I know in
recent years it has become slightly contentious, as some patients feel upset by the seeming exclusivity of the bell’s poem. With this in mind, back in 2018, the CanTreat nurses at Halton (where I have my chemo) were looking for an ‘alternative‘ poem that would encompass people on permanent treatment like myself, who will never actually reach the end of any cancer treatment and therefore felt excluded from ‘ringing the bell’. The best we can celebrate are milestones; stable scans, good weeks, birthdays - anything that feels like a little win, and so my poem reflects that.

I’m also in the middle of writing a book about my BC journey, to include some of my poetry, and I enjoy a weekly art class which is pure therapy. Life is so rich and full amidst the fatigue and moments of sadness. But that’s just what they are: moments. Never forget that tomorrow will most likely be brighter. Build yourself a solid support network; wrap yourself in its strength and love and allow it to become your safety net.

If and whenever you can, look for the ‘glimmers’, stay in love with life, people and fun!
Sending love and light to you all.

Jane