My SBC Journey - Kate

7th March 2021 SBC & Me

When were you diagnosed with SBC?

Ten years ago now, de novo secondary diagnosis. I was 35 years old. 

How were you diagnosed with SBC?

In May 2010 I had minor surgery to remove a blocked milk duct in my left breast, all was well and I was discharged. I started getting backache a couple of months later, being a physiotherapist by profession this was not really a huge worry….but it got worse, until one day as I was getting ready for work, in the shower I had a massive electric shock type pain in my back, I passed out and came around with no feeling in my legs. 2 weeks later after extensive spinal fixation following pathological spinal fractures I was told I had breast cancer in my bones, liver and pleural lining. Cancer had developed in the scar tissue of that original surgery, it was aggressive and spread fast. I would never have known, no lump, in fact, no signs at all. 

What has been your treatment journey?

After recovering from the spinal surgery I started on Herceptin, docetaxel and carboplatin. Unfortunately, my feet started going numb and I lost control of my bladder and bowel function. An MRI confirmed I also had a diffuse brain and spinal cord Mets (leptomeningeal). I was quickly changed onto some ‘new’ drugs: capecitabine, lapatinib and denosumab. I also had spinal radiation. The outlook at this point was bleak, I basically spent the next two years waiting to do as every statistic, every oncologist and every BCN told me would happen…..waited to die…..only I didn’t, I was back at work, feeling well and my brain mets had reduced, massively, only two remained and none in the spinal cord. By 2015 we decided to gamma knife those last two stubborn brain mets. I was recently discharged from neuro-oncology because I have been disease-free in the brain for 5 years now.

In 2017 I found a lump in my left breast and had the real ‘primary’ breast cancer experience – 6 years after my initial breast cancer diagnosis I finally had my mastectomy and then a bit more lymph node removal in 2018. 

All that time I have remained on Cap&Lap, I am one of the last remaining NHS patients on lapatinib as it was removed from funding due to being ineffective (hmmm). Genetic testing has revealed me to be HER3 which is thought to be why I have tolerated lapatinib so well.  I represent breast cancer on the patient participant panel for Genomics England.

Ten years of chemotherapy has not left me unscathed…how could it? One of my kidneys has failed and I am now in chronic renal failure, neuropathy is an ongoing issue as is fatigue. I am looking to reduce treatment to a minimum and preserve my renal function for as long as we can – my oncology team play the long game, no knee jerk reactions and they believe I could have another ten years on this drug if we can keep the rest of me stable.

What would have helped make your journey so far easier?

When I was diagnosed back in 2011 there was absolutely no support for the younger person with breast cancer. I went to the very first event held by BCC in 2012 – the online support that has emerged since has been invaluable. Secondary breast cancer nurses were also non-existent back then so actually having that support now has been a revelation. 

What advice would you give someone who has just received their diagnosis?

Do not google – no good ever comes of that! Every person’s disease is unique to them, you are not a statistic and NO ONE knows what the outcome is going to be. Read up on your treatments, know the side effects and how to manage them and self-advocate LOUDLY. It’s your body, your cancer so ask and ask again if you aren’t clear with what you are being told and don’t be afraid to get a second or even third opinion.

What is your favourite holiday destination?

Italy – I loves me a bit of pasta and pizza.

Do you have any great TV/film recommendations?

During shielding, I have really enjoyed the Discovery of Witches series and I can’t wait for the new series of The Line of Duty 

Favourite books?

Tough one as I love reading – The Mary Russell series by Laurie King, anything by Val Mcdermott, Deb Harkness or Ben Aaronovitch is up there too.