14th October 2021 by Erin Moriarty Wade News
Thank you to Erin & the MyTomorrow's team for taking the time to talk to Claire about our work with secondary breast cancer patients.
Find out more about the work of MyTomorrows here
October 13 marks Metastatic Breast Cancer Awareness Day, and October is Breast Cancer Awareness Month. In recognition of this, we are highlighting an organization called Make 2nds Count. Make 2nds Count is dedicated to helping people living with secondary breast cancer, which is also known as metastatic breast cancer, advanced breast cancer or stage IV breast cancer. We sat down with Claire O’Donnell, the Support & Research Project Coordinator at Make 2nds Count, to learn more about metastatic breast cancer and how Make 2nds Count is working to increase awareness, raise money for research, and support patients and their families.
Make 2nds Count is a secondary breast cancer charity founded in 2018 by Lisa Fleming. She got the idea from the hospital as she was about to begin chemo. She knew there wasn’t a lot going on for secondary breast cancer patients and she wanted to raise awareness and raise funds to support research for secondary breast cancer. Secondary breast cancer, also known as metastatic, advanced or stage IV breast cancer, is a cancer that has spread beyond the breast to other parts of the body.
Since the inception, we have become a UK-wide charity dedicated to giving hope to women and men who are living with secondary breast cancer. Our community programs support patients and families who are affected by secondary breast cancer. We commit to 70 percent of the funds raised going to our causes of funding research projects into secondary breast cancer and into the support programs that we have for patients and families.
We have grown massively over the past couple of years. We were very focused primarily on research and education — and we are still doing a lot of that — but during COVID, we realized that there were a lot of patients who were feeling very isolated. We created an online forum called “Tea & a Chat” via our Facebook group where patients connect and talk about their day or what is going on with their treatment. It has helped patients to build friendships with each other, which is incredibly important. The online community really grew organically, and it has created so many more opportunities for us as a charity.
In addition to being a support service for anyone who needs it, we also have some special offerings. We have chemotherapy and radiotherapy boxes, which are for anyone who's going through treatment or chemotherapy or radiotherapy. Littlelifts supplies the boxes. Patients can apply through our website to get one of these boxes, which offer lots of little treats and things that bring some joy because we all know how harsh treatment can be. We also have the “The Little C Club” for families with young children. These are flash cards that explain cancer in basic terms and help include children in important conversations.
We also recently took 40 secondary breast cancer patients on a retreat, which was a new thing for us. We took them away for four days of rest and relaxation and some fun outings. Most importantly, they had a chance to interact with other patients in the same situation, and they made lasting friendships, which was incredibly rewarding.
That's one of those subjects that, even as a patient myself, I think about it a lot. Secondary breast cancer just isn't as glamorous as primary breast cancer. The media tends to want to focus on stories of survival or remission or winning the fight — and that’s terminology that secondary breast cancer patients just can’t use. There are lots of women living with secondary breast cancer who have wonderful, inspiring stories to share that will leave you in awe of their resilience and determination. So for us, it's about changing the narrative and allowing secondary breast cancer stories to be told alongside a primary story because the public really needs to see all of the cancer stories.
I think the general public doesn't understand the difference between primary breast cancer and secondary breast cancer. Primary breast cancer can be cured, but secondary breast cancer can't be cured. Secondary breast cancer is treated as an incurable illness, so you will be on treatment for life. At the end of the day, if you want to be quite harsh about it, you will die from secondary breast cancer, but you won't die from primary breast cancer. Secondary breast cancer is the one that will kill you, so that is the massive difference.
It’s also important for patients to be aware that the signs and symptoms of secondary breast cancer are different. Symptoms of secondary breast cancer tend to be things like a persistent headache, problems with breathing, stomach and appetite issues, excessive tiredness, or pain in your bones that doesn't go away with medication. This is very important because sometimes even doctors and nurses don’t always connect the dots when someone who had a primary diagnosis comes back with one of these complaints.
I think clinical trials are massively important to secondary breast cancer patients. We need to increase research and develop more effective drugs because this is what the secondary breast cancer community relies on. We need many more options of drugs because drugs are what could help keep us alive longer to spend time with our loved ones.
Secondary breast cancer patients have a limited number of options open to them. You have your first-line treatments, and then when those fail, you move on to the next ones, but eventually those lines of treatment are going to run out. So, it's vitally important for patients to look into clinical trials because it could open doors to new treatment options.
I think sometimes patients have a misconception that it’s too early to consider trials, so they don’t look into trials and then they wait until the point where it's too late and unfortunately they're too unwell to access a trial or maybe not well enough to travel for a clinical trial.
So, I think it's really important for people to access that information, know what's available to you, and have that in your back pocket. At least give yourself the options, because I've seen firsthand what getting on a trial can do for someone with secondary breast cancer in terms of how many more years it may be able give them and how much better quality of life it may be able give them. Patients may need to be proactive about clinical trials and tell their oncologists if they want to know about clinical trials.
Clinical trials are very complex and there's a lot of information to digest. One of the things that we developed recently is a Patient Trials Advocate Service. Vivienne is a senior research nurse with experience in secondary breast cancer and clinical trials who can help patients search for clinical trials and support them during the process of accessing a trial. One of the services that she looks to for help is actually myTomorrows. The program is initially being piloted in Southeast Scotland, but we hope to expand it in the near future.
My colleague, Lesley Stephen, who is our Patient Trial Advocate Coordinator and also a clinical trial participant herself, told me about it. I looked into myTomorrows when I was curating our 2nds Support Hub, which is part of our website that directs patients to resources and services that are available to help them. I added a link to myTomorrows on our website for patients who are interested in learning about clinical trials. I think it’s an invaluable service for patients to help them find and access a clinical trial, and it’s a free service, so that is hugely important because it means anyone can access it.
Take your time and let everything sink and don't make too many rash decisions. It's an incredibly scary time at the beginning, and there's lots of information to process. I also think you have to almost grieve for the life that you had before you move forward with a new one. I was incredibly scared in the beginning, being diagnosed at thirty-eight years old and knowing that my whole life going forward was going to be so different. It’s very tough in the beginning, but things do get easier once you’ve got your treatment plan, you find your tribe, and you reach out to those people and organizations that are going to support you and help you.
Also, I always tell people try not to Google too much. It gives you a lot of scary statistics, and at the end of the day, a lot of those statistics are very outdated. Each patient’s story is unique, and you can't compare your situation to someone else's. I’ve been living with secondary breast cancer for six years, and I'm incredibly lucky that I'm still on first-line treatment and my treatment works really well. I’m managing it and I’m living with it. So, it's important to share more of those stories and try to be positive without creating a toxic positivity.
Don't get me wrong, there are still 1,000 people dying of secondary breast cancer each month in the UK, which absolutely has to change. There is still a lot that needs to be done, and we are working very passionately every day to change this by raising awareness, funding research and supporting patients and their families.