Sharing candid insights from their own experiences with breast cancer and their work on the Roche Global Breast Cancer Council*, Randi and Dana paint a vivid picture of life as long-term breast cancer survivors, people’s complex needs once treatment is completed and their hope to evolve the narrative around breast cancer to capture the survivorship story.
An interview with Dana Donofree, founder of an inclusive lingerie company for people with breast cancer, and Randi Krogsgaard, psychologist and communications consultant. Both Dana and Randi are patient representatives on the Roche Global Breast Cancer Council
Randi: I am one of the lucky ones and yet I do almost feel like time is my enemy - as each day goes by, the possibility of the cancer returning feels closer. One of the toughest things for me is knowing that my family is living with the impact of breast cancer too. My sons were just nine and 14 at the time of my diagnosis and they were so frightened they would lose me. One of my sons, who is now 33, admitted to me recently that he still dreams that I may die, which shows the lasting trauma on the family and the sense of uncertainty that we live with.
Dana: You’re so right. It’s now 12 years on since my diagnosis and reaching 40 was a huge win. My thoughts on getting to 50 years old? I'll feel like a unicorn, because sadly I've not yet met anyone else who has been diagnosed at such a young age who can say that. I was diagnosed with breast cancer a day before my 28th birthday. I was engaged to be married, and we had to postpone the wedding and instead have discussions about fertility and in vitro fertilisation. I went on to have treatment for eight and a half years. I am fortunate to currently show no evidence of disease, but you never stop feeling like a breast cancer patient.
Dana: Having experienced two different forms of menopause, had a bilateral mastectomy and felt first-hand the mental and physical impact of breast cancer, I believe there needs to be more psychological support for people with breast cancer both in the short and long term. A psychologist should be provided alongside an oncologist when you’re diagnosed. You cannot prepare yourself for losing a body part, especially your breasts. When you look back at yourself in the mirror and your nipples are gone, your breasts are gone, your hair is gone, eyebrows, eyelashes, everything that you've been associated with as a human has gone – that emotional turmoil is so underrated.
Randi: And, as we’ve touched upon, the long-term impact, the lingering uncertainty and wider effect on families runs deep too. As a patient and a psychologist, I have had a fairly unique experience in terms of the mental health burden of breast cancer. My training and ability to focus on the subject matter through my work with the Danish Breast Cancer Organisation has really helped me process my emotions and experiences. I started writing a handbook on breast cancer because I felt the information available was so bad. It was tough for me to write but has ultimately helped me a lot and allowed me to keep talking about it. I think it is so important for others to have forums in which to do the same – forums in which to learn, feel listened to and be included.
Dana: Right, you wrote a book to help, and I created a lingerie company for people with breast cancer, which is what we call ‘boob inclusive’ lingerie for two boobs, one boob, no boobs or new boobs. We have people with breast cancer supported because there are many chest outcomes based upon how you decide to go forth with your treatment. And we want everybody to feel beautiful, empowered and like themselves as much as they can. The more we can bring the burdens of living with breast cancer into discussion, the more we can find ways to deal with them together as a wider society and within the breast cancer community itself.
Randi: Precisely, and that is where our advocacy work really aims to help. It’s incredibly important for both of us to communicate that there is a lot of work still to do and that is why being a part of the Roche Global Breast Cancer Council, as one element of what I do, has been so important to me. It’s the opportunity to see that people from all over the world are having the same kinds of thoughts, emotions and problems, and that we can tackle the next part of the breast cancer pathway together. If we all connect, learn from one another and take action, we really can build a movement for positive change, which is where the Roche Global Breast Cancer Council can play a part.
Dana: Sure, and one of the important areas to focus on to make positive change is around the
Randi: This is so true. Also, I remember the first time we held a seminar on long-term side effects at the Danish Breast Cancer Organisation. We had to repeat it because there were so many people who wanted to join and attend because nobody had talked about the topic before!
Dana: What I value about our work on the Council is that we are putting the spotlight on this part of the breast cancer pathway so medical professionals can understand the long-term impact of their decisions on the person and take them more seriously. If we can shift the conversation so that long-term side effects are recognised, this will lead to better treatments and tools to support people with breast cancer and ultimately better survivorship.Overall wellbeing needs to be considered as part of the treatment process and this includes providing support and consideration around not only the immediate side effects of treatment, but also the long-term management of side effects like sexual dysfunction, fatigue, pain, memory loss, heart conditions and bone loss. When you stack all those things up against one human being, that's a massive burden.
Randi: As someone said to me the other day, “I have breast cancer all year round not ‘just’ for BCAM”. For me, this means that we must advocate for people living with this disease continuously.
Dana: I totally agree with this. BCAM is every day of my life so it’s good to have the conversation, but we need to evolve the conversation to ensure it means something more than just ‘awareness’. As a society, we have almost too successfully marketed breast cancer as a survivor driven story because it's pink ribbons, smiling women and the ‘pretty cancer’. It's difficult to have those real and often very hard conversations, for example about those facing metastatic disease. Of course, women with breast cancer are living longer and treatments are progressing, which is absolutely to be celebrated, but too many are still dying and feeling alone with the burden. Let’s change the whole experience and find ways to support people with breast cancer throughout their lives.
*The Roche Global Breast Cancer Council (GBCC) is a group of patient group leaders, patients, nurses, and doctors who represent diverse organisations around the world and have a broad range of knowledge and expertise relating to breast cancer. The GBCC was set up as a forum to share this knowledge, provide expert advice, find ways to meet people’s needs, and listen to the breast cancer community worldwide. Supported by and together with Roche, we aim to transform healthcare in the interest of people with breast cancer.