Mary Huckle: my experience with secondary breast cancer
Mary Huckle is a health and fitness coach, a speaker, blogger, writer, a representative for MET UP UK, the only secondary breast cancer patient advocacy group in the UK, and a self-proclaimed Stage 4 Cancer thriver. In Breast Cancer Awareness Month she shares her experience, and talks about why we need to do more to raise awareness around the signs of secondary breast cancer and provide support for anyone diagnosed with it.
Do you know the signs and symptoms of breast cancer?
When were you first diagnosed with cancer and what were your symptoms?
In August 2007 - I found a pea-sized lump by my nipple in my right breast.
When were you diagnosed with secondary cancer and what were your symptoms? In July 2014 - I had no symptoms apart from some tiredness. It was in a routine appointment that my oncologist discovered a small lump behind my right collarbone. A PET scan then showed some affected lymph nodes in my chest wall and a lesion on one of my ribs.
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What treatment have you had?
I had a radical mastectomy with full axilla clearance before starting eight rounds of chemotherapy. Five years on Tamoxifen followed. Once I was diagnosed with incurable secondary breast cancer, I had my ovaries and fallopian tubes removed. I’ve continued to be on several treatments, including oral and IV chemotherapy. I’m presently on a clinical trial, which has been working for me for over a year now.
Have you felt that there have been barriers to treatment and if so, what? I believe that being a private patient has enabled me to really see the disparities between private and NHS drug access. Hence why I am so passionate about self-advocacy. In saying that, I’ve had to overcome some obstacles. Private treatment isn’t necessarily the best. I’ve had to question and challenge a few times in order to receive the right care.
Do you think secondary breast cancer is underrepresented/misunderstood and how?
Yes, absolutely. There are several reasons, but one of the main issues is that secondary breast cancer (SBC) seems to instill fear amongst the primary … armed with red flag advice. Furthermore, the doors should never be completely shut to a patient. We know that one in three women will go on to be diagnosed with SBC - so how can most oncologists be so dismissive?
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What would you like people to know about secondary breast cancer?
That our lives are hard, purely because the disease is so misunderstood. I’d like people to understand us better, that it’s a 24/7 mental and physical challenge. That we live life between trying to make the most of it, trying to paint a real picture, and then trying to convince the powers that be that with access to the right drugs, we can live longer, and are therefore worth saving.
What would you like to change around the treatment of secondary breast cancer?
There’s a lot of work to be done, but for starters, we need data. With information about SBC we can start chipping away at all the things that aren’t right. Maybe then we will be taken more seriously and we’ll get more research and more drugs.
Addressing the top three concerns people undergoing treatment for breast cancer
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What is your advice for someone who has just had a diagnosis of secondary breast cancer?
My advice would be to understand the diagnosis. As hard and fearful as it may be to do research, it’s only by facing the fear that we begin to understand and eliminate it. Stay curious and informed. Ask questions and challenge. Keep some control and be empowered. I would also say to look into clinical trials as early as possible.
What is your advice for someone who has previously had a primary diagnosis of breast cancer?
My advice would be to not allow yourself to be dismissed after your treatment is finished. Have you had a full body scan? Ask the oncologist to give you information about red flag symptoms of SBC. Make sure that you can go back if you need to. Remain body aware - be alert to anything that doesn’t feel right, and to get checked out immediately.
How do I get my doctor to listen to me?
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