Name: Leila Asoko
Diagnosis: Oct 2006, primary dx. ER+
Oct 2016, secondary dx, metastases to bones. Assumed to still be ER+, HER2-
Spread to Liver metastases summer 2019.
Age at Diagnosis: 26 (primary) and 36 (secondary)
Oct 2006, still in my 20s. I found a lump in my left breast one day. The size of a peanut, but flat, abut 2.4cm across and disc-shaped. There was disbelief that I’d managed to find it.
I had a mastectomy just before Xmas day 2006, then months of chemotherapy and radiotherapy followed finally by hormone therapy for 5 years, from 2007 to 2012.
I remember leaving regular treatment and being so relieved, but also terrified. No more medially induced menopause from the hormone therapy but what if that had been helping keep me cancer-free?
My friends and I took a trip to Bruges to celebrate: I was ok, I was 5 years post dx.
I never did fully relax though. I always thought the odds were on ‘her’ side. I was too young, I’d say – there’s too many years ahead where she’s probably going to come back and try to eat me alive.’
Perhaps this is why I enjoyed my 30s so much. I lived in the moment, I had gratitude and I tried to be kind to myself and others. It worked – for a decade. So in 2016 when riding my bike to work, I got back pain, I was immediately quite suspicious. I’ve had an outstanding GP and he and I went through the possible causes. Overzeallous gym work? No. Playing crazy with my young nephews? No. Something gung-ho at work -I had a v physically-demanding job- No.
He looked at me and I knew what was coming. ‘Let’s send you off for a CT scan and see.’He rang me a few days later with the results – none metastases.It’s never great when your GP rings you out of the blue like that.
I didn’t see him again for months after that phone call, I practically lived in hospital I had so many appointments.
I started treatment almost immediately, my first line. (See below for treatment lines.) Currently I take daily meds for pain management (bone pain) and nausea, and I have 4-weekly treatments in hospital.
I have been lucky to have a great team over the past few years – a great oncologist at the 2nd time of asking (the first was not a good fit and didn’t appreciate any questions from his patients) an amazing secondary breast care nurse initially (sadly she left after 2 years and my trust has disbanded the role, preferring to concentrate on a primary breast care nurse only) a great support group of about 9 of us founded by afore-mentioned secondary breast care nurse, a v experienced consultant at Marie Curie to whom I go frequently for a second opinion, and a v dear friend who works in oncology research and advertising in New York who is always on hand to link me up to expert colleagues over there and for late night chats when I can’t sleep – the time difference is definitely our friend.
I enjoy reading anyway but I like to read up on this subject matter. I think information gives you options. I am assertive during appointments and I consider the patient to be at the centre of it all. Hence I think all decisions taken should be somewhat collaborative in our field, in secondary oncology. They are the experts but we have to live through the decisions , the treatment, the medication, the side effects, the surgeries, the debilitating outcomes.
Since my secondary dx I have been astounded at the postcode lottery that is treatment expectation/experience/outcome in the UK for us. This simply isn’t good enough. So as long as we patients keep linking up, keep communicating and sharing our experiences, then we can hope to achieve parity of experience nation-wide.
Until then, we have work to do.
Treatment: 3rd line. Palbociclib (37months) Capecitabine (9months) and now Evorilimus & Exemestane (since May 2021)
Why you wanted to be involved with the MetUpUK campaign:
To help gain awareness of not only the big picture – i.e. the struggle for more funding, for better research, access to treatment, etc but also the small picture, which is how we live our day to day lives with an incurable condition.
Public Facebook: Leila Asoko