Kathy’s Story
This article was originally published in Issue One of Discover: Cancer Research In Manchester. All articles are available to read on the MCRC website and a PDF version can be accessed through the links at the end of the page.
My Rare Cancer Diagnosis
Chances are you know something about breast and lung cancers, but an estimated 1 in 4 people in the UK (or 24% of people with cancer) are diagnosed with a cancer that most people have probably never heard of.
These are known as rare cancers, and include cancers of the penis, tongue, appendix, and vagina, among others.
Kathy was diagnosed with a rare cancer in 2020 after noticing she was dizzy when she sat down. Initial tests came back as normal; however, Kathy later discovered a lump in her vagina that turned out to be a rare vaginal cancer.
I share my story to help others and remove the stigma around rare cancers
Kathy Morse
Just 252 people are diagnosed with vaginal cancer each year in the UK.
“Having a rare cancer makes you feel extra isolated, and it needs more explanation to others… not one person I’ve spoken to in four years knows about my type of cancer.” Kathy says.
Kathy was referred to The Christie for treatment where tests showed that her cancer was stage 3, meaning that it had also spread to nearby lymph nodes. In early 2021, Kathy’s 2.5 cm tumour was removed, and her vagina was reconstructed during a long 7-hour surgery. She then started a gruelling 5-week course of chemotherapy and radiotherapy.
Vaginal cancer is extremely rare in younger women – most cases are in women over the age of 75. Kathy was only 53 years old when she was diagnosed, meaning she was not at high risk of getting vaginal cancer.
She is now determined to raise awareness of rare and gynaecological cancers, “I’m hopeful to raise the profile and understanding of rare cancers and maybe even advocate for a rare cancer specialist nurse” Kathy explains.
To anyone with a recent diagnosis of a rare cancer, Kathy says “my advice is to take one day at a time and don’t feel stigmatised, get as much information as you can!”
Rare cancers receive less funding, meaning there are often fewer new treatments than there are for more common cancers. This is why it is so important we hear from people like Kathy. If you would like more information on vaginal cancer, or Kathy’s story, you can visit: CRUK and the eve appeal.
