When Marisa Strupp, 29, found a small bump on her inner labia in March 2018, she assumed it was just an ingrown hair.
Due to the sensitive location of the bump, Marisa, from Milwaukee, Wisconsin, wanted to get it removed. She went to her doctor and dermatologist, who suggested there was nothing to worry about because the skin around the bump was healthy, but recommended going to a gynaecologist.
In August 2018, the project manager had the bump removed by her gynaecologist and sent for testing.
One month later, Marisa was told she actually had a rare type of cancer; stage two vulvar melanoma.
Marisa had to undergo three hours of surgery to remove both the tumour and four central nodes. The cancer had spread, which pushed her to a stage three diagnosis.
Following surgery Marisa was referred for immunotherapy treatment, Opdivo, which was 12 treatments over the space of a year.
Immunotherapy was a gruelling experience. Marisa experienced awful side effects, including extreme fatigue, migraines, hot flashes, and rashes.
Now, after completing this treatment, Marisa has to wait for her scan results. If everything comes back clear, she will still need to go for a checkup every four to six months.
‘I thought it was just a little ingrown hair and since they didn’t give me anything to worry about, I took my time to get it removed,’ Marisa said.
‘I wasn’t worried at the time and was very busy with work, it took me time to see my gynaecologist to take care of it.
‘When I received the diagnosis I was horrified, scared and paralysed with fear. Never in my life did I hear about vulvar melanoma.’
According to Cancer Research UK, 1,300 people are diagnosed with vulvar cancer in the UK each year, but typically these are women over the age of 75.
Having vulvar cancer in your twenties is rare, and as a result Marisa struggled to find support. She began sharing her journey on Instagram to connect with other people going through the same thing.
‘I was looking for women my age that have my specific cancer,’ she explained.
‘That became a very lonesome and impossible task, especially as I first came home from surgery. I was stuck in a chair and searching for anyone to connect with.
‘I figured if others, like me were looking for people like me, they’d take to IG. And I’ve talked to and spoken to people all around the world (Germany, Argentina, England) and in the US.
‘Not everyone has my specific melanoma, some have melanoma (skin) or some are starting their immunotherapy and want to know what it’s like.
‘Or maybe they just want someone to connect with so they know when they explain their side effects, you can understand.’
Marisa wants to share her story to help others through the struggle of diagnosis and treatment.
She says: ‘I’ve always been a fun, happy and cheery person, ever since I was little. It’s just who I am and not being that way takes away the core of who I am.
‘Cancer took so much away from me and I won’t let it take me down and change me.
‘I’m not a cancer victim, I’m defeating it. I will say that doesn’t mean I didn’t have days I’d just sit and cry. I still have those days.
‘I hate what it’s taken from me, I hate how it’s made me feel and just feels horrible. But I remember I am stronger than it.
‘You are not alone. Lean on your family, friends and loved ones. You will have stormy days, but the sun will shine the next day.
‘It’s okay to be scared and cry. Just know there are others out there like you that are there to support, love and help you.’
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