Aliya experienced a long delay when seeking help for her secondary (metastatic) breast cancer symptoms. By speaking about her experience, she hopes she can help both doctors and patients to recognise potential signs of secondary breast cancer.
I didn’t know much about secondary breast cancer
I was initially diagnosed with primary breast cancer in 2010, but had completed treatment by the time my secondary symptoms appeared. I went to the doctor because I’d been experiencing intense skull pain, fevers and weakness, but knew so little about secondary breast cancer that I never thought it could be that.
The pain started at the beginning of March 2018, but it took until 31 August of the same year to correctly diagnose me. By then, the cancer had spread to my bones. I was 56 years old.
I reported the GP surgery to the health ombudsman and they took up the case on the basis that the GP didn't take on board the pain I was in, nor did they give me the ALP (alkaline liver phosphatase) blood results on time. High ALP is an indication of bone cancer and mine was going up quickly. Had the doctor reacted correctly, I could have been referred to the oncologist much sooner.
I felt very upset at the news and, although the diagnosis came as a shock, it wasn’t really a surprise. I felt extremely faint and weak which, coupled with the unbearable pain in my skull, told me it had to be something serious.
I am still taking time to fully accept the consequences of living with secondary breast cancer.
I have a lot of support, but treatment is difficult
Currently, I’m on an intensive course of chemotherapy (Eribulin) with two weeks on and two weeks off. Initially, in September 2018, I was given Ribociclib and Zometa but in December 2020 the cancer spread to my liver, so I was put on to chemotherapy and the Ribociclib was stopped.
Secondary cancer has invaded every aspect of my life. Not only is the treatment totally immersive, but there's also no let up or end in sight. Although the cancer symptoms would be a lot worse without treatment, the side effects are unpleasant and inescapable.
However, the chemo day unit and oncologist are incredibly supportive and helpful. They are always available during difficult times, whether it’s physical or emotional support I need.
What has helped me most during difficult times is loving kindness from close family. Dear friends have been extremely kind and understanding, and I appreciate people a lot more since the diagnosis.
I am also part of a generous and supportive ‘Cancer Sisters’ group - and what a difference it makes knowing others in a similar situation.
It is imperative that we move fast to treat secondary breast cancer
To any doctors or medical professionals who care for people that may be at risk of secondary breast cancer, I want to say: wake up, don't waste time, act quickly, and don't dither. Where possible, we should be working to escalate scans, ultrasounds and blood tests to establish causes on time.
And to anyone reading this who may be at risk: if you have unusual symptoms, be confident about getting to the bottom of them quickly.
I really hope that we will have a relatively painless cure by 2050, and that’s why I am pleased to be a part of Breast Cancer Now’s work.
Most breast cancers don’t come back after treatment, but sometimes it can return, so it’s important to know what signs and symptoms to look out for.