PUBLISHED ON: 30 July 2018

Lin lives with the memory of what breast cancer did to her mother and great aunt. After being diagnosed twice herself, most recently with triple negative breast cancer, she's found a way to get informed and to use that knowledge and her experience to help others.

I didn't have a clue how I would cope, but I had to manage

Although it shouldn’t have been a surprise, being diagnosed with breast cancer at the age of 50 came as a tremendous shock. My mother had been diagnosed with it at the same age and my great aunt had died from it – like many, she’d been too embarrassed to go to the doctor when she noticed something wasn’t right.

As a very busy mother of two teenagers and working full time as a teacher, I just didn't have a clue how I would cope with taking time out for both an operation and treatment. However, I had to manage. 

After one lumpectomy, radiotherapy and tamoxifen for five years, I gradually started to believe that, like my mother, I would live.

The doctor told me I had triple negative breast cancer

However, 13 years later I sat there as the doctor told me I had triple negative breast cancer. It was bad news. Despite trying to remain optimistic, Dr Google informed me that it’s ‘one of the most aggressive forms of breast cancer’.

I was told I’d have to undergo a mastectomy and chemotherapy. The doctor asked, ‘Are you okay with that?’ 

No, of course I wasn't. At the time, still ignorant of what triple negative breast cancer meant, all I could think about was my mother tossing her hot, uncomfortable prosthesis across the room in frustration. I’d always wondered how she could bear to feel so lopsided.

It's wonderful how times have changed

I confessed my distaste about mastectomy to the doctor and she told me I had other options. I discovered that I could have an immediate reduction and reconstruction. Wow, I thought, it’s wonderful how times have changed. Chemo was still going to be brutal, but it was a lifesaver. 

It became clear to me that I needed to learn more about this new breast cancer landscape and my questions were coming thick and fast. I wanted an expert with me to guide me in my choices. The doctor made it clear – it was my body, my life, my choices. This wasn't like choosing a cream cake, I was making potentially life-and-death decisions.

Post-treatment, when I could function again, I was relieved to discover that the lump was another primary. I wanted to find out all I could about what that meant, which led me to the Breast Cancer Now website.

I went from being ill-informed to very knowledgeable

Not only did I learn a great deal more about breast cancer, I also found there were ways I could help other breast cancer sufferers. 

I volunteered to become a Breast Cancer Now patient advocate, which led to also becoming a patient expert for NICE and a patient representative at two breast cancer conferences, one in Manchester and one in London. I went from being ill-informed to very knowledgeable in a short space of time. Talk about a steep learning curve!

Now I understood that triple negative breast cancer wasn't one disease but comprised of at least four sub-types - all probably needing genomic profiling and customised treatment.

I learned that breast cancer treatment varied considerably across the country and, having joined national and international forums, that being one's own well-informed advocate was incredibly important.

I want to use my experience to help others

Becoming a member of Breast Cancer Voices was a hugely significant step in this process for me. It enabled me to become much better at making decisions about my own condition and helping others to navigate the very complex path of being a breast cancer survivor. 

There are so many women who don’t have the time, energy or inclination to become their own best advocate. They need help. 

Breast Cancer Now is working very hard to ensure this happens and I’m more than delighted to help in any way I can. I feel so lucky to have had their support and encouragement to do this.

I have read about women who decide to refuse chemo because they don't want to lose their hair. Others decide they don't need radiotherapy because the cancer has been “cut out". Some who want repeated scans to check for secondary cancer, ignorant of why this is neither possible nor desirable. Some women choose to go the alternative route, instead of trusting the real experts. And there are still women who put the letter inviting them for a mammogram in a drawer, letting the day and appointment time pass, too scared to face the possibility of a diagnosis of breast cancer.

I want to use my experience to try to help more women overcome their fears.

Like many others, I'm dealing with long-term side effects

It’s unacceptable that there are women who submit to substandard treatment because they're unaware of their options. 

A woman with a severe post-op reaction ringing an emergency contact number should not have to sit in despair as she listens to it ring out. 

Young women with babies and small children faced with a triple negative diagnosis and a potential death sentence should demand, and get, better care. 

They deserve speedy, automatic genetic/genomic profiling and appropriate treatment followed by improved monitoring and aftercare.

Meanwhile, like many others I am dealing with some long-term side effects such as bone pain and fatigue. 

However, probably the worst effect is ongoing anxiety about the possibility of metastasis. This is a particular curse for those of us with triple negative breast cancer because there are so few reliable treatment options, but I am hoping that current research may change that.

Use your experiences to create change

Does Lin’s story resonate with you? Would you like to use your experiences and views as someone who has been affected by breast cancer to help shape and improve work in the field of breast cancer? You can find out about opportunities to get involved, as welll as research studies you may be able to take part in, by joining our Breast Cancer Voices community.