Giving hope to those affected
by secondary breast cancer
Research. Support. Education.
Giving hope to those affected
by secondary breast cancer
I had never heard of secondary breast cancer, until I received a phone call telling me I had it, almost two years ago. It is difficult for me to understand how it is possible that I went through 16 months of treatment for what I now know was primary breast cancer, yet I never heard the word secondary at any point during my mastectomy surgery, 18 weeks of chemotherapy, three weeks of radio therapy, one year of targeted therapy or subsequent hormone therapy. I had no idea that cancer can metastasize and that it can return in different places to where it originated. I had no idea of the signs and symptoms to be aware of. I had no idea that even though I had been told I was cured and that I had got my life back, I could be diagnosed with incurable, stage 4 cancer.
So let me fill in the gaps and explain how I came to receive that devastating phone call.
If I rewind two years, I had just celebrated my 40th birthday, and was enjoying lots of lovely events with my family and friends. My husband, Tommy and I, were planning a long weekend away to Iceland, a country I had always wanted to visit, and were leaving our two children with my parents for the first time ever. I was feeling incredibly grateful to have reached my 40th birthday, and was genuinely just delighted to be here to see that next decade.
I chose not to have a party as I wanted to hold a fundraising event later in the year, to raise funds for one of the charities that had supported me during my 16 months of treatment for (what I now know was primary) breast cancer in 2020 and 2021. I was also celebrating the fact that I had been all clear of cancer for 18 months, and was genuinely just delighted that I had survived a breast cancer diagnosis at 37, but was well and back to my normal, hectic life juggling our family, home and my busy job too.
A couple of months earlier I had started to notice an unusual pins and needles feeling down my right arm. I had changed office at work and wondered if my posture was not correct at my new desk. I didn’t pay much attention to it, until it began to get worse and my arm would spasm from time to time. Eventually, one night I was lying awake as my arm was annoying me. Something in my brain clicked and it occurred to me that my cancer had been in my right breast and this pain was in my right arm. I was not overly worried about it but vowed I would book an appointment to get it checked out. The next morning I stood with my phone in my hand and made the decision not to bother the breast care nurses, as they are always so busy, but to see my GP instead. I waited three weeks for an appointment as I was sure it was not urgent. I went along to that appointment with no worries in my mind, and although I was assured that it was likely to be a trapped nerve and was given some medication, she asked if she would take advice from the breast care nurses. I wasn’t surprised to then get a phone call asking me to see an oncologist a few weeks later. He assured me it was unlikely to be anything to be concerned about, but he wanted to send me for a scan to be sure. As I had no idea that the cancer that had been in my breast and lymph nodes back in 2020 could have spread despite all the treatment I had, then I took his word and put the scan to the back of my mind.
My 40th birthday came and went and I enjoyed a lovely meal with all my family, our weekend away in stunning Reykjavik, Iceland, a day away with my aunties and cousins and was making plans for a fundraiser later in the year. I went for the CT scan in the midst of all of those lovely events and didn’t give it another thought. In early February, I was in my kitchen one evening, tidying up the kids toys, when I got a call from the hospital. It was late in the evening and I was surprised to see the hospital called ID at that time. The oncologist’s voice was so quiet and I could tell he was emotional, even though I had only met him once. He gently explained that my scan results had come back and had showed that I had incurable, stage 4 cancer. My mind could not process what he was saying, as I had never understood nor considered that this was a possibility. I felt unsteady on my feet, like the room was starting to spin. He gently explained that he would not usually give someone news like this over the phone, but there was not a clinic appointment for another 10 days and he wanted me to know as soon as possible so they could get my treatment regime started immediately. He listed the appointments that he had made for me the following day and ended the call with another apology.
I walked through to tell my husband, in tears, and was unable to explain what I had been told. I heard the word incurable, and thought that meant terminal. At that point, I didn’t know the important difference between those two terms. We both cried and worried, for our young children, rather than ourselves.
Over the next few weeks and months, my knowledge and understanding of secondary breast cancer grew. I tried to stay away from Dr Google, to fill in the gaps, and stuck to my trusted sources of advice. During my primary treatment these had been Macmillan and Breast Cancer Now. Only 12 days after that initial phone call, I was sitting up in Edinburgh waiting for my first radiotherapy session; the oncologist was true to his word about getting treatment started quickly. I picked up a leaflet for Make 2nds Count while I was up there, I remember noticing that it was the only time I had seen the word ‘secondary’ preceding ‘breast cancer’. I was utterly devastated to read that the average life expectancy following a secondary diagnosis was 1-3 years. My daughter was still in nursery and I was worried that I would not see her start primary one, let alone be there for her and my son as they both grew older.
As time went on, I was reassured to learn that my cancer had only spread to one location, in my spine. My oncologist was confident that there were treatment options available, and that they should be able to keep it stable to allow me to live a fairly normal life for a number of years. I didn’t ask what that number was likely to be. I prefer to try my best to live in the moment now, to be grateful for every day that I have, and to really enjoy and make the most of the time I have right now. We love to travel and have been on a few lovely holidays, as well as just making the most of the normal days too. When the future is no longer guaranteed, then it forces you to enjoy right now. The ethos of Make 2nds Count has been a big part of my journey, and I have found amazing support from the charity, through their online patient groups as well as being supported to host an in-person Tea and Chat group in Dumfries.
As I go past my second anniversary of that phone call, and reflect on how naïve and uninformed I was, I really feel that every patient who rings the bell to mark the end of their treatment for primary breast cancer should be given the Make 2nds Count leaflet showing the signs and symptoms of secondary breast cancer. As a teacher, I feel that everyone deserves to be educated on what to look out for, so that they can follow up if they notice any new symptoms.
My life has changed hugely in the past two years, however there are aspects that have actually been improved by my secondary breast cancer diagnosis. I am so much more aware of the importance of making the most of every day and really do my utmost to enjoy my life. Having a diagnosis of incurable cancer really does give a powerful sense of perspective, and allows me to focus on what is truly important. We have made lots of new precious family memories in that time, and really make the most of every day, not just the ‘big’ events. I am immensely grateful to my wonderful medical team who look after me so well and I am grateful that my treatment regime has kept me stable for almost two years. My scan frequency of 16 weeks means that I never get complacent and begin to take my life for granted. I write a blog now sharing the ups and downs of my day to day life, trying to show that it is possible to live well with stage 4 cancer, and trying to raise awareness of secondary breast cancer too. I get so many messages from followers asking about symptoms they have noticed, or people who have been recently diagnosed who have found hope and positivity in my blog. It is lovely to hear that others are enjoying following along on the journey and are learning more too.
Our Dumfries Tea and Chat group has been up and running for 8 months now, and while it is a small group, it is lovely to have the support of the other patients. Sharing our experiences and being able to talk to others in the same situation has really helped me to come to terms with my diagnosis. Seeing others who have been living with secondary breast cancer for much longer than me also fills me with hope. Make 2nds Count has been a huge part of my journey, including the online support groups, the Tea and Chat groups, the weekly yoga classes and the experience of being an ambassador. I am very grateful to them for the support they provide.
Donate