Tracy recently took part in the SWEET project, which hopes to build a new platform of resources for women undergoing long-term hormone therapy after breast cancer.
There can be lots of unpleasant side effects to hormone therapy
I was diagnosed with hormone receptor positive breast cancer on New Year's Eve 2018 (Happy New Year!) with treatments including surgery beginning early 2019. Given the type of cancer I had, as well as it spreading to a lymph node, I also began 10 years of hormone (endocrine) therapy.
At first, I was taking , but was transferred to after beginning menopause. The side effects can be extreme at times, and knowing I would be taking it for so long was daunting.
I was a couple of years into treatment when I heard about a research project called SWEET (Supporting Women with Adherence to Adjuvant Endocrine Therapy), which is setting out to design a website that offers support for people taking endocrine therapy once other cancer treatment had ended.
It felt like a little olive branch being extended to me, so I applied to be a participant in the study.
It excited me to be part of research that could help others
I filled out all the relevant forms and consent via email, and was contacted by Dr Joanna Slodkowska-Barabasz.
Dr Slodkowska-Barabasz called me for a chat to explain what the project was about and how my participation would help form the website. She also asked me for my opinions on what the site already had to offer, or where I thought it could be edited to give a clearer view from the perspective of someone going through therapy first-hand.
This excited me greatly, as I felt I had the ability to help women in the future who may also be daunted by the need for long-term hormone therapy.
Also, without prior research, I probably wouldn't be alive to tell the tale and help others in this way.
It felt good to know my experience was being put to good use
After the initial chat, I had an interview on Zoom. This initially filled me with fear due to me being a bit of a technophobe, but it couldn’t have been more straightforward! I even learned new skills in participating on the laptop as well.
The interview lasted around 30-45 minutes and the researchers took notes of everything I had to say concerning various pages the SWEET website had to offer. I felt as though I was really contributing in every way when I remarked on various elements, including how certain subjects were worded, or when visual components didn’t stand out enough.
It gave me a sense of achievement knowing my experiences concerning endocrine therapy were being put to good use, and all my points were made note of.
If you have relevant experience, you should consider taking part in research
At the end, I was asked if I would like future follow-ups on how the website would turn out and when it would become live for all to use as a support platform.
I really hope the SWEET website does go ahead because, from what I saw, it’ll be such a support for women just like me who may feel isolated and caught up in a cancer journey that never seems to end sometimes.
I want to send love and light to anyone that's going through cancer, but also fully urge anyone with relevant experience to participate in future research. You really will be part of the future of cancer support, and everyone needs that.
Plus, if I can master Zoom, anyone can - trust me on that one!
Share your experience
If you have experienced breast cancer treatment and would like to share your experience to help researchers with their work, there are a number of ways you can get involved.