“Research is the backbone of the treatment, prevention and cure of cancer” – Saima’s experience

When Saima Javeed from Leeds received her master’s degree certificate in 2021, it marked not just an academic achievement, but a personal one.

Aged 36 at the time, the mother-of-four was halfway through studying a master’s degree in Social and Political Thought when she was told she had oral cancer. To focus on getting better, she had no choice but to put her studies on hold.

Now cancer-free and with a completed master's degree under her belt, Saima is getting involved in a different field of research that is personal to her – cancer research. Determined to make a difference to other people with cancer, she sits on the Research Advisory Panel at Yorkshire Cancer Research, using vital insights from her own experience to help shape the future of cancer research in Yorkshire.

It was in December 2016 when Saima first noticed an ulcer growing in her mouth. Noticing it had still not healed five months later, she went to the dentist and was referred to the dental hospital where she was prescribed treatment. Unfortunately, the treatment proved ineffective and her ulcer worsened, becoming so large and painful that she struggled to eat properly.

She said: “By May, I was experiencing intense pain, so I went back to the dentist and was immediately referred to the hospital again for a biopsy. A month later I received news I would never have expected.”

In June, Saima was told she had squamous cell carcinoma, a type of oral cancer. She underwent a five-hour operation to remove the cancerous ulcer and part of her tongue, as well as 50 lymph nodes to determine whether the cancer had spread.

She said: “I ended up on the Intensive Care Unit and it was a very tough six weeks of recovery. Thankfully my tongue didn’t need reconstructing, but my speech was very slurred due to part of my tongue being removed. I still slur a bit when I get tired now.”

While recovering from surgery, Saima was told that the cancer had unfortunately spread to her neck. She went on to have six weeks of radiotherapy that targeted her neck and lower jaw.

She said: “I really struggled with all the side effects such as painful burnt skin, sore mouth ulcers, and not being able to eat solid food. It was a really challenging time, balancing the debilitating treatment and taking care of my four children. My youngest son was only three and my eldest was 17.”

Reflecting on the difficulties of telling her children about her cancer diagnosis, she said: “My two eldest children were going through key developmental stages at school so I wanted to make sure my cancer diagnosis did not disrupt their lives. Now looking back, I wish I had struck up more conversations with them, as it’s clear now all they ever wanted was to be there for me.”

Determined to finish what she started, Saima went back to complete her master’s degree at the University of Leeds in 2021. She now hopes to return to university to do a PhD, exploring issues she is passionate about such as health inequalities and racial diversity.

In 2021, Saima started volunteering on the Research Advisory Panel at Yorkshire Cancer Research. Here, she works alongside cancer experts to assess funding applications for research programmes, helping to shape the research the charity funds so it has the biggest impact for people with cancer in Yorkshire.

“Given my academic background, I really enjoy reading research proposals and understanding the thought process behind so many talented researchers. The medical experts and healthcare professionals involved in these projects have such a drive and passion to make a meaningful difference to people with cancer.”

From her time on the panel, Saima has become particularly interested in cancer research projects that help address health inequalities and support inclusion.

“For example, I am pleased to see the charity fund the IMProVE clinical trial which will look at the perspectives of men most at risk of prostate cancer, including Black men, who have a significantly increased risk of developing the disease.”

IMProVE is a £4.5 million prostate cancer screening trial funded by Yorkshire Cancer Research that will give thousands of men in Yorkshire the opportunity to get screened for prostate cancer. As part of the trial, the research team will investigate the factors that might encourage or discourage men most at risk of prostate cancer from taking part in screening, including those from Black or economically disadvantaged backgrounds.

In addition to sitting on the Research Advisory Panel, Saima recently took part in a historical meeting to mark the charity’s 100th anniversary. She gathered with researchers, volunteers and supporters to commemorate the charity’s inaugural meeting at the Old Medical School in Leeds – where the charity was founded in 1925.

She said: “Yorkshire Cancer Research turning 100 is a huge milestone and I feel honoured to have been involved in this historical gathering.”