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Joy Knott has been living with secondary breast cancer since 2011. She tells us about the difficulties she faced getting diagnosed and the importance of being aware of the symptoms of secondary breast cancer.
I was initially diagnosed with primary breast cancer, aged 38, at the end of 1998. I had a mastectomy and chemotherapy as part of a drug trial. I was monitored for 10 years and discharged in 2009.
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.
In total, I have been living with secondary (metastatic) breast cancer for nine years. My original prognosis was one to three years maximum, so I have outlived that by a long way!
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.
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 a 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.
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.
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.
The 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 developing secondary breast cancer, I have devoted a lot of effort to raising awareness of what it is 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.
We are sharing the voices of women with secondary breast cancer as part of our Unsurvivors campaign, which highlights that 11,500 people still die from breast cancer every year in the UK. We’re demanding urgent change so that everyone with secondary breast cancer can live well for as long as possible. Until we're seen. Until we're heard.
If you have any questions or concerns about secondary breast cancer, you can call the Helpline on 0808 800 6000.
To find out more about the signs and symptoms of secondary breast cancer, visit our information pages.
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After completing treatment for primary breast cancer, Debi was told very little about the risk of developing secondaries. Then, when she did try to seek help for her symptoms, she was turned away.