When Michael Croteau, 21, noticed a mark on his right thigh, he assumed he just had an ingrown hair.
The student was also experiencing tightness in his right knee and thighs at the time, but he ignored his symptoms until his mum Susan Williams, a nurse, became concerned.
Susan spotted that when her son returned home over Christmas, the ‘ingrown hair’ had grown and looked infected.
Michael was referred to UT Southwestern Medical Center in Dallas, Texas, by his dermatologist, who suspected that the growth might not be just your usual blemish.
The student was diagnosed with pseudomyogenic hemangioendothelioma (PHE), an extremely rare cancer that affects just one in one million people, according to the EHE Foundation.
The rare type of cancer affects the skin, muscle, and bones. In Michael’s case it had developed into hundreds of tumours which had moved into the bone, muscle, and tissue of his right thigh.
Michael said: ‘I noticed a bump on the outside of my right thigh in September. I could feel it underneath the skin, it felt like there was pressure.
‘It began to change color and I started to think it was an ingrown hair.
‘I had never had one, but I didn’t really know what else it could be.
‘I did dig at it, but there didn’t seem to be a hair there.
‘It became raised and started to look infected. My mum suggested we go and get it looked at.
‘It was a real shock. Cancer had never affected me.
‘It was something I never thought would happen to me, especially at this age. It freaked me out.’
Amputation was brought up as an option, but this was ruled out by an orthopedic surgeon.
Doctors in Houston’s MD Anderson Cancer Center decided to instead treat Michael’s tumours with an experimental oral chemotherapy drug and radiation therapy on the thigh to manage the pain.
This treatment can’t cure Michael’s cancer, but the aim is to stop the growth of his tumours.
As his type of cancer is so rare, there’s a real lack of research into treatment options.
Michael has no clue of his prognosis – as his mum puts it, he could be around for ‘one month or six years’.
‘Sarcoma is generally slow growing and there was a small risk of it spreading like wildfire,’ explains Michael. ‘It’s not extremely aggressive.
‘It doesn’t usually respond so well to chemo or radiation.
‘But the options I was presented were amputation from the hip down, or to just monitor it and hope it didn’t grow or spread. There is no cure. We have chosen that option.’
Now a year on from his diagnosis, Michael’s family are focused on making the best of his remaining life. They’ve also started a GoFundMe page to raise money for his treatment.
Thankfully his tumours haven’t grown, but doctors have spotted two small spots on Michael’s lungs.
‘It’s absolutely devastating to hear there is no cure for your 20-year-old son who just finished high school,’ said Michael’s mum, Susan.
‘We don’t know how long he has. It could be one month or six years.
‘Currently they are monitoring the spots on his lungs. But he will always be living with cancer which is the toughest part for our family.
‘Because it’s so rare, there is not much research being done on it, so for us it’s a waiting game.
‘Right now the focus is to give Michael the best quality of life he can have.’
Despite his illness, Michael is still studying at Kilgore College, where he’s on track to begin a nursing program.
He’s sharing his story to encourage people to be proactive if they notice an unusual change in their bodies.
Michael said: ‘The goal is to live a normal life for as long as I can.
‘My tumours have remained the same. They haven’t gotten any smaller but they haven’t gotten any bigger either.
‘It’s so hard to tell what will happen because there is not much research into my type of cancer.
‘They aren’t sure how it will develop in the future.
‘It’s a scary thought because it’s impossible to plan for.
‘I try not to think about it and live each day as best I can. But there is always this big ‘what if’ over my head.
‘If you notice anything out of the ordinary with your body, get it checked.
‘Early diagnosis can be the key in the treatment of so many cancers so if you notice something wrong, go to your doctor.
‘It could be the thing that makes the difference and save your life.’
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