An Edinburgh mum who was diagnosed with secondary breast cancer has been given six more years after taking part in a clinical trial. Mum-of-four Lesley Stephen, 56, from the West End, is now helping others to try and get the same treatment.
In 2014, she was given the agonising news that she has secondary breast cancer after she went for a checkup over a persistent cough. She was experiencing no pain, no lumps, nor feeling unwell but the cancer had spread into her lungs and brain.
Secondary breast cancer, also known as advanced breast cancer, is devastatingly incurable but there are treatments offered in the hope that people can prolong their life and relieve symptoms. But when that wasn’t working, Lesley was counting down her final days - until she was accepted on to a clinical trial.
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With the extra years she’s been given, Lesley has seen her children grow up and is now working with Edinburgh charity Make 2nds Count. Working alongside nurses, she is helping others learn about clinical trials through a Patient Trials Advocacy (PTA) service which is a “trial matching service” and the first of its kind in Scotland and in the UK.
The mum-of-four exclusively told Edinburgh Live how desperate she was to get extra time and was willing to try everything and travel as far as necessary if it meant she could have more time with her family. She found out about patient trials after her friend revealed she was on one and was travelling down from Scotland to London once a month, with travel expenses covered by the pharmaceutical company.
Lesley said: "I had this determination because I was convinced a trial would help me to live longer. I've got four children, I just wanted to be around. The normal kind of life expectancy for this disease is two to four years and I wanted to desperately live longer than that."
After she was rejected by a number of trials, it became apparent that her treatment lines through her doctor wasn't working.
"[The doctor] told me and my husband that I had to get my affairs in order because I failed in all my treatment lines. We went to New York for our last family holiday. I came back in October 2015 and the doctor offers more chemotherapy, which I wasn't keen on. And then he said, 'there's one place left and a very early stage, it's called a 'phase one trial' in Glasgow at the Beatson Centre. And I jumped at the chance, I thought, I've got really nothing to lose, and that trial, which I'm still on has been an absolute miracle for me, and I'm still here, and still on the same drugs six and a half years later."
She added: "When I was diagnosed, all those milestones that you take for granted, that you'll see your children grow up, leave school, maybe get married or whatever, I thought those are all gone. But because I've had an extra six and a half years, I've managed to see my boys leave school and go to uni, my daughter's in high school now and these are things that I honestly didn't think I would be around for."
Speaking about how she manages living with cancer, and ultimately not being able to plan too far ahead, as she pointed out many with secondary breast cancer can only plan three or four months ahead, she said: "I'm very fortunate that I don't have terrible side effects from this drug. I'm not in pain, I've still got a very full life, other patients are less fortunate, and they don't respond as well to the drug that they're on. I think it's just time that enables you to process and come to terms with the fact that you're living in small chunks of time between between scans, and that you'll never have that life before cancer.
"But I've got a very good life, I'm very fortunate that my life is so good at the moment. And I try and just make the most of that because when I have to come off this drug and go on to another one, I may have worse side effects and may be much harder to live with the next next treatment line."
Now Lesley wants to help other people, as she explained how difficult getting onto the trial and understanding how they work is. She spent hours looking on medical websites to try and find the correct patient trials and there is only a small window of opportunity to get onto a trial. While she did much of her own research, so others don't have to, she worked alongside PTA nurse Vivienne Wilson, a senior research nurse at Edinburgh’s Western General Hospital, and set up the trial scheme to help other women be an 'advocate for themselves'
She said: "I've been on a clinical trial for six and a half years now. And through that, I've done incredibly well. And it's enabled me to become a bit of a voice for other women with secondary breast cancer. Over those years, when I've met other women with secondary/advanced - whatever you want to call it - breast cancer, I've been a bit shocked at how few women are aware that a clinical trial might be an option for them. It might give them another treatment line, certainly would give them hope, which is what we all are looking for when we've got advanced cancer like this.
"And so when I started when I joined the charity, Make 2nds Count, that's one of the things that we helped to set up. It's a service for patients who are interested and want to research and know more about clinical trials could contact us. And we've now got three nurses."
Starting in Edinburgh a year ago, Patient Trials Advocacy has expanded to The Borders and Inverness, and they are hoping to stretch further out across the country to help as many people as possible. Patients have an initial one-to-one, hour-long phone consultation with one of the nurses who can advise about clinical trials and answer any queries, search for suitable trials and support patients in discussing them with their clinician.
Although, she added how difficult it is to actually get onto a trial as they are governed by outside of the charity, but Lesley stresses how useful it is to be armed with the knowledge and they can help them find the right information.
She admitted: "We don't think that many patients have actually managed to physically get onto a clinical trial. However, I think what has happened is that we've definitely given those patients more confidence and empowered them to talk to their clinician about a trial, because ultimately, it's their clinician, who will have to refer them on to a trial."
Lesley added: "Because I'm a patient as well, I know you have to become your own advocate. You have to take control of your life. The people I've got are fantastic. I've got amazing clinicians, oncologists who are really patient focused and very, very focused on research and treatments and how to support their patients, other clinicians maybe have less expertise in that area or less time. And I think it's great to give patients those unlimited tools to arm themselves, so that they can advocate for themselves basically to get the treatment that they need. But what frustrates me a bit is how hard it can be to get onto a clinical trial."
Since the service piloted last year more than 100 patients have been supported. Of those, 100 per cent backed the initiative and 95 per cent said they would talk to their clinician about the possibility of accessing clinical trials.
When asked about what she wants to say to others living with secondary breast cancer, Lesley said: "My advice to all all patients with advanced breast cancer is to contact the service, talk to your clinician about ask them about clinical trials and you'll be your own advocate. And if they're not very helpful, or supportive find, another clinician, a second opinion, which I know is not easy to do. It's quite scary dealing with these people. You're in the middle of dealing with all these awful emotions running through your head, but it will get better, it will get better. That's another thing, there's always, I think, there's always hope."
Symptoms of secondary breast cancer
Secondary breast cancer can be treated but it cannot be cured. Treatments aim to control and slow down the disease to enable patients to have the best possible quality of life for as long as possible.
Make 2nds Count highlights the common signs and symptoms.
- Pain in your bones that is not relieved by pain medication. Bone pain may worsen in the evening
- Breathlessness and or a persistent dry cough
- Nausea
- Feeling more tired than usual
- Ongoing headaches that are not relieved by pain medication
- Losing your appetite and/or losing weight
- Swelling and an uncomfortable feeling in your stomach area
- Blurred vision, loss of balance or any feeling of weakness and numbness in your arms and legs
- The discovery of lumps or swollen areas under your arm, in your breast and/or your collarbone areas
If you are experiencing any of the above symptoms that are not normal for you or do not go away, please ensure that you contact your doctor or local breast cancer unit to discuss further.
To support Make 2nds Count, you can visit their website here.
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