Sarcoma Awareness Month: Meet Joanne

 

Mother of three and remedial massage therapist Joanne was massaging her own abdomen when she came across an abnormal mass four years ago. Further investigations revealed she had a rare form of sarcoma called leiyomyosarcoma- a cancer affecting fewer than 1% of Australians. Joanne has shared her story to mark Sarcoma Awareness  Month.

"I was diagnosed four years ago when I was 51. I actually found the cancer myself, because I am a remedial massage therapist, and I was massaging my abdomen. When I pressed in deep,I felt a bit of a lump and it all started from there.

Initially it was wrongly diagnosed as a fibroid, and I was sent off to a gynaecologist for a hysterectomy. An ultrasound subsequently revealed it was not a fibroid and they investigated further with an MRI scan.

When they told me I had Stage 3 leiyomyosarcoma, I was in shock. This cancer is so rare that I never heard of it before. I was fit and healthy, I was not a drinker, or a smoker and I watched what I ate. I could not believe this happened to me. My doctor said I was unique, but I did not want to be. I started off with radiation and then surgery, but the cancer had spread to my leg and I even had to learn to walk again. I then had chemotherapy, followed by surgery to my leg. Everything was stable, then two tumours decided to grow - one was on my lung and also on my liver. I had both removed in surgery followed by more chemotherapy.

For six months now I have been on a new therapy that is only available under an access program.

Unfortunately it's not on the PBS, so it's been an expensive out of pocket venture.

It's a lot of money, but it means everything to me to have this drug available.

So far, this new therapy is keeping everything stable.

It is tough having a rare cancer. I would like to see more funding for drugs and research go to rare cancers."

July 2021