When Joy initially started experiencing symptoms of secondary breast cancer, her doctors thought it was asthma-related. A decade later, she tells us how important it is to recognise the signs of metastatic cancer.
I’ve been living with secondary breast cancer for 10 years
Two years later, I was diagnosed with secondaries in my left lung. My cancer was identified as ER+ and HER2+ so I received trastuzumab (Herceptin) and hormone therapies, plus radiotherapy on my lung followed by surgery.
I was also diagnosed with a paralysed left vocal cord because of damage caused to my vocal nerve by my lung tumour, which caused problems with my voice. I’ve had three surgeries to correct it, which has helped me speak more audibly.
Unfortunately, abemaciclib stopped working recently after two years, and doctors have found evidence of cancer in the lymph nodes above my stomach. As a result, I have had 12 weekly sessions of paclitaxel chemo, lost my hair and feel generally crap!
In total, I have been living with secondary (metastatic) breast cancer for 10 years. My original prognosis was one to three years maximum, so I have outlived that by a long way!
My symptoms appeared long before my diagnosis
I used to teach young children, and had persistent problems with coughing, wheezing, breathlessness and difficulty maintaining my voice at work. This started well over a year before my secondary diagnosis.
I visited the doctor a number of times and was treated for chest infections and worsening asthma. Eventually, I was referred to the respiratory department at the hospital.
The consultant there thought I was maybe suffering with a reflux cough, but decided to send me for breathing tests as a precaution. These tests showed that I was ill with a suspected chest infection, so my consultant asked me to go for a chest x-ray that day. My x-ray showed a partially collapsed lung on the left side with fluid filling the cavity.
I asked if it was possible that something like a tumour could be causing the problem, and was told it might. That was the first time that the thought of a recurrence of my breast cancer crossed my mind.
The delay in diagnosis had a profound impact on me
I subsequently spent nearly two weeks in hospital having scans, blood tests, antibiotics, nebulisers and chest drains. I was told that the problem was a tumour in my lung, but that they were unsure whether it was related to my previous breast cancer or if it was lung cancer.
The only way they could identify what sort of cancer I had was through an EBUS bronchoscopy, used to take a biopsy of the tumour. Several stressful weeks followed waiting for an appointment at a different hospital which had the equipment needed. The biopsy revealed that the tumour was secondary breast cancer – I received this result over two-and-a-half months after my hospital admission.
This delay in diagnosis had a profound impact on me. It was a very anxious time involving a lot of tests and waiting for results. I spent a lot of that time researching secondary breast cancer online. I was very upset to read that it was incurable, something I was totally unaware of. I was also very poorly, too ill to go back to work before the summer break.
I felt very vulnerable and isolated. I just wanted to know what my diagnosis was and to start treatment.
I was never warned about secondary breast cancer
The GP I had initially seen was new to the practice. She never mentioned anything about my previous breast cancer. It had been 12 years, but looking back now, I feel that was no excuse.
I didn’t realise there could be a connection between my symptoms and breast cancer, and I don’t think my GP was aware of the signs and symptoms of secondary breast cancer either.
I also wasn’t told about secondary breast cancer at the point of my discharge from oncology after my primary diagnosis. I had a vague awareness that it could come back in my bones, as I had been sent for a scan when I developed neck and shoulder pain to check for secondaries.
At no point was I made aware of the signs and symptoms of secondary breast cancer.
I was used to having chest infections, as I had a history of bronchitis and pneumonia since I was a young child. But I had no idea that a persistent cough, wheeze and chest pain could be linked to breast cancer.
If I had known this, I would have asked the right questions and requested a referral. I should have been made aware of them much earlier.
It's vitally important people are aware of secondary breast cancer symptoms
I think things have improved in that area in the years since my secondary diagnosis, but I also think there is still a reluctance to scare women who have finished their breast cancer treatment. Charities have definitely played their part in raising awareness of secondary breast cancer in recent years, but it has been a long time coming.
Since my diagnosis, I have devoted a lot of effort to raising awareness of metastatic breast cancer and how it can be identified. I’ve found that the general public have no idea what the term means or that it is in fact incurable. Sadly, I haven't seen much evidence of greater awareness of symptoms in recent months, but I have heard a couple more stories of GPs failing to diagnose.
With regards to my own treatment, my oncologist stopped my chemotherapy a few weeks ago as my scan showed no significant changes. As a result, I am now on my last hormone therapy: anastrazole. There will be other chemo to follow, as that's all I have left treatment-wise.
On the upside, I have reached the milestone of 10 years since diagnosis. This has meant that I was able to celebrate our ruby wedding anniversary, which I had not expected to see.
Most breast cancers don’t come back after treatment, but it's important to know the signs and symptoms in case they do. Make sure to familiarise yourself with secondary breast cancer and help us spread awareness to others who may be affected.