When Claire Myerson talks about how breast cancer affects her, two things stand out: her zest for life and her candor about the physical and emotional challenges of living with the disease. Myerson, 53, lives just outside Oxford in the UK. She was diagnosed with cancer 10 years ago. The illness upended her life. She received treatment for several years, but after learning that the cancer had spread to her bones, she made the difficult decision to leave her job as Chief Information Officer at a UK healthcare company. Since then, she has devoted her energy to living life as well as possible and doing what she can to advocate for women confronting the same fearsome illness. Myerson’s experience as an IT expert in the pharmaceutical industry means she brings unique perspectives to different types of advocacy. She advises patient organizations in the UK, helping to demystify and destigmatize cancer. She raises funds for cancer research. She contributes to the design of clinical trials to test experimental new treatments in patients. And she shares her story of living with cancer with other patients, with the doctors and nurses who treat them, and with the research scientists trying to develop new treatments. Her story is also featured in the Wonders of Medicine exhibition at the Novartis Pavillon. On a recent visit to the Pavillon, Myerson shared her perspectives on cancer, advocacy and life in general. Here is an edited excerpt of discussions with her, held as part of a panel discussion together with industry experts. How has cancer affected your life? The answer to that question is quite an involved one. I was diagnosed with what’s called HER2 positive breast cancer in 2013. Then, in 2016, unfortunately I discovered that the cancer had spread to my bones. So, I have it in my pelvis, my ribs and my spine. Since that diagnosis, I have had the full range of available treatments, including chemotherapy, radiotherapy, a mastectomy and reconstructive surgery. And for the past seven years now, I’ve had intravenous drug treatments. Every three weeks I go to the hospital in Oxford and I have what’s called a targeted chemotherapy drug. And I will continue to take it for as long as it works. At the moment, it’s working and it’s stopping the cancer from progressing. The cumulative effect of that treatment is mentally and physically exhausting. I really struggle to sleep. I often have pain. Sometimes I have menopausal symptoms, which have been brought on by the treatment. Sometimes I can’t sleep because of the anxiety and the fear of what’s happening to me. The drug upsets my stomach and makes me very nauseous. It causes horrible nail and skin problems. And it makes my eyes and my nose stream and gives me strange neuropathic pain in my feet and my hands, which is like being stung by a thousand bees. But all of that being said, I am still here. The side effects from the drug are tolerable. And crucially, it’s keeping me alive. And my best hope has always been to stay alive long enough for science to come up with something else that can keep me going for longer. That’s one reason I want to do what I can as a patient advocate. Talking about my experience hopefully continues to inspire scientists and supports the kind of research and development work that allows me to still be here. It’s given me really precious time to live and continues to give me hope for the future.

Claire’s father and her son James talk about how Claire’s disease affects them both.

You also use your experience as a cancer patient to contribute to the research process. What motivates you? I wanted to get involved because I think it’s really important to use plain language so that patients can fully understand the treatment and the likely impact on them. So, they can give their consent (when offered a chance to join a clinical trial) – to say yes or no, “I agree to taking this treatment, having understood what’s going to happen to me.” If that’s the outcome that we’re trying to achieve, then the starting point is right at the very beginning, when the drug is just an idea. And I believe it’s really important to have the patient voice at every stage of the drug development cycle, with researchers adapting what they are doing throughout the process. Because the ultimate outcome, in terms of the impact on the cancer and on patients, will be so much greater and more effective. I can give you a couple of examples from my own personal experience about side effects and consent. If you have such severe diarrhea, for example, that you literally cannot go outside or do anything in your life because you need to be close to the toilet the entire time. That, I would argue, is not an acceptable quality of life. If you need to take other drugs to counter the diarrhea and become so constipated that you feel sick every day, and you have to go through that every three weeks for months or years, you might legitimately say, “Actually, no. That’s not for me.” Another example is weight gain. I was involved recently with a clinical trial panel looking at this side effect of an experimental drug. Believe me, when you’re going through cancer treatment and you’re losing your hair and your weak immune system makes you susceptible to every illness going, then your body image is quite important. A drug that is going to be effective against your cancer but is going to cause enormous weight gain is definitely going to give patients pause for thought. Are there examples where patient input has had a significant impact on the course of research? There’s a drug, for breast cancer again, that was going through clinical trials. It was administered via an enormous needle. And also it had to be delivered cold. It came straight out of the fridge. A cold drug through an enormous needle is seriously painful. On top of that, the expectation was that patients would deliver that injection to themselves. We ended up concluding that patients in fact could not deliver that to themselves. It would require a specialist nurse to do it, costing the healthcare system a fortune. So, despite the fact that the drug was very effective, the delivery mechanism was a real failure. That feedback on the clinical trial led the researchers to go back to the drawing board. They ended up with a combination of a pill and a skin patch that was extremely cost-effective, very easy for patients to administer and really works. So, it is not just the drug and the side effects that you’re testing. It’s also the practicality of delivering the drug. Take an issue like whether something has to be stored in the fridge. I have friends who have young children or grandchildren and storing drugs in the fridge at home is a real no-no. They don’t have access to a separate fridge. So how do you actually go about that, and what’s the cost? There is an awful lot to think about. That’s where patient involvement and experience in real-life situations are particularly useful.

Do patients who want to advise researchers on their clinical trials need a good understanding of drug development and how clinical trials are run? Or can they go in with no sort of knowledge base? I think going in with no knowledge at all is quite difficult. But it is manageable if you have somebody from the research team with patient engagement experience supporting you, who is able to help you channel the feedback that you are giving. From my own experience, my background working in pharma has been very useful. Pharmaceutical companies are businesses, so you do need to have a certain ability to manage yourself within a corporate environment. And to understand the compliance issues and the regulatory issues. Some people are just better suited to that than others. When you get that good match, however, it works really well and can make a huge difference. What life lessons have you drawn from your experience living with cancer? I think it’s important to say that it’s really not all doom and gloom as far as cancer is concerned. I’ve always found that I get a huge amount of comfort and support from family and from my children in particular. Having a mother with a cancer diagnosis has meant that they’ve had to grow up and mature emotionally much faster than their peers. We’ve all had to find ways to cope. Talking and sharing our feelings as a family has been absolutely key. As a result, we’re much closer than we were before my cancer. And that’s a very good thing. Breast cancer has also brought me freedom and the opportunity to be brave, to take risks, to lose my inhibitions, and to prepare for the future. The constant adjustment of expectations has been the thing that has probably been the greatest challenge with all of this. But I’ve learned to spend my energy only on things that inspire me. I make sure that I spend lots of time with the people I love. And I’ve learned to live as much as I can in the present and to make sure that every day is a special day. I try to have that mentality as much as I can. I always wear my best underwear. I never leave it in the drawer. If you are not wearing your best underwear, get it out and put it on tomorrow. Life is literally too short. And if I’m having a glass of wine, I always make sure it’s a good one. I know that I’m going to die one day. But until then I am determined to live and to live well. So my advice is to go forth, live your life to the full. Get your best underwear out. Drink your best wine. And just go for it!