Kimberley's story

Kimberley was diagnosed at just 13 months old with a rare type of bladder cancer -Rhabdomyosarcoma (also known as RMS).

At age 18, Kimberley noticed a lump on the back of her tongue. She was informed in the clinic it was a malignant cancer of the tongue. It was also confirmed it had spread to Kimberley’s neck as the consultant felt a ‘big lump’ on her neck which she hadn’t noticed. Kimberley was diagnosed with squamous cell carcinoma (SCC). Kimberley had the back third of her tongue removed and also had surgery on her neck – a neck dissection – to remove the lymph nodes.

Kimberley says, “This was my first experience of Macmillan. I was referred straight to the hospital by my GP because of the lump on the back of my tongue. I was told it was probably nothing but I went to the clinic and the consultant didn’t say too much, and the next thing I knew there were five other people in the room. One of those people at the time was my Macmillan nurse.

“The consultant felt my neck, and at this point I wasn’t actually aware of a lump on my neck. When he told me to feel it, I could feel a rock-solid lump like it was a stone I could rub my finger over. I was in shock and couldn’t believe it because I was just told there and then “You’ve got a malignant tumour on your tongue that’s spread to your neck.

“Then my nurse introduced herself, “I’m Lisa, part of the Head and Neck team for Macmillan – do you want to come have a chat with me?” I was crying obviously, and she asked me what I was thinking. In my mind, I was just thinking that I didn’t want it to come back. I knew it was a different cancer to before, but I just didn’t want this to come back. We went into a different room and had a chat, I was worrying about how to tell my friends, I was only 18 and had just started my second year of college which was some form of normality for me as I wasn’t in full-time school.

“Throughout that whole time of surgery, Lisa was in contact with me and told me to ask any questions. She came to my house for a post-surgery review which was so nice for me to be in my own environment and the fact she made the effort to come and see me. After that, it was general follow-ups in clinic.

Kimberley was then diagnosed with a third cancer in April 2020 (SCC again for the second time), at the peak of Covid. Kimberley’s tongue was becoming sore and was told a growth was happening. This wasn’t a relapse, but the same type of cancer. It was a primary lesion. This resulted in another surgery for Kimberley. 

“It was so many phone calls, questions, concerns. I’d had the experience and knew what to expect but, I also didn’t know what to expect. I repeated all my questions, and I think Lisa repeated all her answers! It was everything I knew but it was that reassurance I needed. I kid you not, I was on the phone to her for two hours once. Sometimes I was crying and upset and she didn’t need to say anything, she just listened – and that’s all that was needed.

“It was only the first stage, but because of my history I had surgery and another neck dissection on the right side. That came back clear but they found thyroid cells from that, which was a ‘semi-discovery’ of my fourth cancer.”
  
"Summer 2022, it was starting to show itself properly because Thyroid is really slow growing. You can go years and years and you wouldn’t know you’d got it. So, in a way, if it wasn't for my third cancer, they wouldn’t have picked up on the Thyroid. So it’s a massive mind blow really. So my fourth cancer wasn’t a shock. I had surgery in December 2022 for that. 

At the end of October 2024, I made a meal and noticed the tomato felt a bit acidic and was irritating my tongue and I thought, this reminds me of before. I saw lots of white dots on the back area of my tongue and instantly I thought oh no.”

She mentioned the new symptom at her review clinic a week later and the doctor suggested taking a biopsy.

“I sat down at my results appointment, there was me, my mum and my boyfriend, the consultant and my Macmillan nurse. He [the consultant] asked how I was, then told me it’s cancer and I was like oh my god, I couldn’t believe it. I wasn’t expecting that. I knew it was something, but didn’t think it had gone that far.”

Kimberley was diagnosed with tongue cancer for the third time in October 2024. She had surgery on the 7th January 2025 at Leeds General Infirmary to remove part of her tongue.

A large part of her tongue was already missing due to the previous surgeries. As a result of this most recent surgery, nearly the whole back third of the tongue has now been taken.

Kimberley had an artificial skin graft, which is a skin graft using bio-material which is typically used for skin cancers but hadn’t been used in the mouth before.
 
In addition to support from her Macmillan nurse Lisa - the same nurse who had supported Kimberley with her first two tongue cancer diagnoses - Kimberley was also supported by a Macmillan Speech and Language therapist.