Nurse living with rare cancer says more needs to be done to increase awareness for her "one in a million" case
Sammy Rokoszynski was diagnosed in 2016
An Essex nurse, whose rare cancer took 18 months to diagnose, says more needs to be done to increase awareness for her "one in a million" cancer.
Today is Salivary Gland Cancer Day, and that is what Sammy Rokoszynski was diagnosed with in 2016.
Her rare cancer amounts to less than 1% of all head and neck cases.
Her surgery involved three failed attempts to rebuild her jaw, and she had to learn how to walk again.
We spoke with Sammy about her cancer diagnosis:
"At the age of 39 I was in the prime of my life. I was a full time working mum, to two young children.
"Life was busy, chaotic, and beautifully ordinary. But something wasn't right. For about 18 months I was chasing answers to symptoms that didn't seem to add up.
"I had a tingling feeling that radiated through my neck and went up alongside my face.
"Deep down I knew my body was trying to tell me something, and that moment came with diagnosis in 2016.
"I was diagnosed with salivary gland cancer.
"It is a very rare cancer. It accounts for less than 1% of all head and neck cancers, so one in a million.
"In that instance, I wasn't just a mum, a clinician, a colleague. I was now a patient, and the world as I knew it fell apart.
"Strangely, amid all that devastation, there was a sense of relief. After months of uncertainty I finally had a name for what I was facing."
She said her journey "consisted of multiple surgeries" and "endless hospital appointments."
"Given the complexities of the surgeries, I had to learn how to walk again, and the reconstruction had removed parts of my leg.
"I had to learn how to talk again, I had to learn how to eat again, drink again, and return back to work again.
"All while learning to live with this disease, and with the impact of the surgeries and treatment.
"I have also had to learn how to feel empowered, and take control of my care and treatment."
She said that there are "no stereotypical, lifestyle characteristics" that may put you at more risk of this cancer:
"When we think of head and neck cancer, perhaps we are prejudiced to think that people who smoke a lot, people who work with chemicals are more likely to get it.
"There is a challenge in recognising symptoms, when having something so rare.
"There is no obvious symptom, it is a challenge, that is why it took 18 months for me."
Today is the first national UK Salivary Gland Cancer Day, and Sammy said it "really highlights for me the power of unity."
"Clinicians, academics, researchers are raising the profile, and people talking about this rare disease can make something so rare part of normal conversation."