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When Sue was initially diagnosed with secondary (metastatic) breast cancer, she was told she may only have a year to live. Five years on, she is still able to enjoy an active lifestyle.
It all began when I found a pea-sized hard lump in my breast. I delayed seeking a GP appointment for about six weeks, but when I did go my GP immediately referred me to the breast clinic. Samples were taken and a week later, in June 2014, I was diagnosed with invasive ductal carcinoma. It was hormone negative and HER2 positive.
The diagnosis did not come as a surprise because of the way things were handled at the breast clinic the previous week. I was quite matter-of-fact about it because it was clarification of what was going on. I wanted to know what the next steps and options were with regards to treatment.
Unfortunately, in December 2015 , the cancer was found to have metastasized in my brain. I had a craniotomy a month later, but the cancer came back in the same place, so I had gamma knife surgery in May 2016.
Since February 2016, I have had Kadcyla every three weeks and have remained stable.
With primary treatment, numerous medical appointments dominated my life and I had chemo fatigue. I was on sick leave for nine months. When I received my secondary diagnosis, my day-to-day life changed immensely.
I medically retired from work as I was told my prognosis would be a year, maybe two. I had to rehabilitate from open brain surgery. I became dependent on help, which I didn’t like. I had to re-build my confidence as my cognition and physical ability were poor, and I was unable to drive for two years which had a great impact on my life.
During this time, all my family were very helpful. I also attended Breast Cancer Now support sessions.
I was introduced to Breast Cancer Now by one of my support friends from my primary group. She came to see me early on in my secondary diagnosis and said I may find Breast Cancer Now’s support useful, as a secondary diagnosis is a different way of living. I did not understand what she meant at the time.
The face-to-face sessions were very helpful because it allowed everyone to speak truthfully and honestly. We shared and compared information and tips which we otherwise would not have known about. There was humour as well as sadness.
The speaker sessions were also invaluable as the information and tips given were all relevant to our conditions. I’m looking forward to attending the face-to-face sessions when they recommence.
I wouldn’t describe myself as an anxious person and my ‘Special K’ (Kadcyla) has helped my condition to remain stable. For these reasons I’ve only participated in a few online chats and speaker sessions during the pandemic, but it is reassuring to know the service was there if needed.
The last speaker session I participated in was for lymphoedema. It was helpful because the advice I was given a few years ago has since changed and it highlighted to me that medical science and research is always changing and progressing.
In addition to this, my local hospice has provided a lot of help, as have retreats at the Penny Brohn Centre and the Global World Centre Oxford. To help myself, I practise meditation and visualisation, and listen to a motivational speaker.
For the most part, I have been able to live a normal life.
Before the pandemic, I was dancing, swimming, playing table tennis, walking, cycling and enjoying all sorts of activities. I still have issues with balance, stamina and cognition, but people who do not know my medical background are in disbelief when I tell them and that I’m on forever chemo.
To anyone else with a secondary cancer diagnosis, I would say keep an open mind and be with people who uplift you. Don’t get fixated on your mortality, and instead strive to be the best you can. Concentrate on what you can do and not what you could do. Embrace life by making changes to make things possible for you. Change can bring new experiences which you may never had previously considered.
If you are living with a secondary breast cancer diagnosis and would like to attend one of our support programmes, we'd love for you to join us.