“Getting the diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results is difficult. Going through the process is hard. But it’s the psychological effects that can really take hold of you. Mental and emotional recovery takes longer to recover from, and not many people understand this unless you’ve lived it,” Karen said.
Karen was diagnosed with Liposarcoma four years ago, when she was 48 years old. What felt like menopause symptoms – including fatiguea state of extreme tiredness or exhaustion, can be physical or mental and hot flushes – and what appeared to be weight gain was actually the slow growing cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs in her body.
“Liposarcoma is cancer within the body’s fat cellsthe basic structural and functional unit of all living things. It is rare – with approximately five cases diagnosed each year in Australia – and it is not easy to identify, especially because the symptoms are easily masked and mistaken for other common complaints,” Karen explained.
“When I was eventually diagnosed, they ended up finding a 7.5 kilogram tumoura tissue mass that forms from groups of unhealthy cells in my abdomenstomach, stomach area, belly that had been growing for an estimated five to ten years. It was difficult to catch because instead of it being a solid tumour, it was actually a jelly-like massa growth of cells that come together to make a lump, may or may not be cancer that had wound its way around my organs, filling up the cavities in my abdominal cavity.
“The news came as a complete shock to me and my family. At the time, I felt a double sense of grief as it was just six months before this that my mum had passed from breast and endometrial cancer after she lost her battle, as we cared for her in our family’s home.”
Liposarcoma does not respond to chemotherapya cancer treatment that uses drugs to kill or slow the growth of cancer cells, while minimising damage to healthy cells. Karen started off her cancer journeywhat a person experiences/lives from the time they think they have cancer with 12 weeks of radiation to stop the tumour from progressing. She then underwent a 12-hour surgerytreatment involving removal of cancerous tissue and/or tumours and a margin of healthy tissue around it to reduce recurrence, where she was exposed from her sternum to pubic bone in order to remove all the tumour.
“In the end, they were successful in getting the Liposarcoma out in one piece. They also had to remove one of my kidneys and part of my bowelportion of the digestive system that digests food (small bowel) and absorbs salts and water (large bowel); also called intestines which was really upsetting for me. What followed was six months of recovery to get my strength back, including one year of psychological therapy so that I could come to terms with the fear of my cancer returning,” Karen shared.
“No one really talks about what happens after treatment from a psychological perspective. Much of the recovery focuses on your physical wellbeing.
“They don’t tell you about managing the mind games. When you’re healing, you are sitting around a lot, not doing much to contribute to your family, all you have is time to ponder the what if’s. People keep saying ‘well it’s gone now, you can move on.’ It’s not that easy because you have experienced a traumatic shock. The follow-up testing for at least five years also produces a “Scanxiety” each time.
“For me, this meant dealing with a lot of guilt and loss of self-esteem. You think that after surgery you should be happy because your tumour is out. But it’s difficult to come to terms with. I don’t think you ever trust your body again, you don’t have any control over it, which means you’re constantly worried about what this means for your future, for your family.”
Seeing a psychologist really helped Karen during her recovery. She also credits her mental wellbeing to finding support groups and getting involved in volunteering.
“Participating in support groups, including Rare Cancers Australia’s Sarcomacancer arising from bones and/or soft tissue Support Group, has been great. It was through one online session that I met a person with the same diagnosis as me, an amazing feeling when you have such a rare condition. Support groups are a fantastic way to connect with people. I’ve found it valuable to listen to other people’s experiences, the difference in care that they receive, and it’s always interesting to hear the carer’s point of view,” Karen said.
“I’ve also really enjoyed giving back to the community through volunteering. It’s one of the most proactive things you can do, when you’re ready. There are all sorts of positive ways to do this and you can find a way that works for you.
“I started volunteering for the Australia and New Zealand Sarcoma Association (ANZSA) as a Consumer Representative a year ago. It’s been a learning curve as I don’t have a medical or scientific background, but I’m really enjoying being able to make a difference by being the consumer voice when projects come up. There is so much opportunity to connect and work with other patients and organisations, it’s really exciting. My surgeon is on the ANZSA Board as well so it’s funny working with him again from this different angle.”
As an ANZSA Consumer Representative, Karen helps assess the relevance of new clinical trial concepts and protocols, reviews Patient Information Sheets and Consent Forms, advises on patient recruitment strategies, and more.
Karen is sharing her story as part of Sarcoma Awareness Month this July 2021.
“My message to all rare cancer patients is to keep persisting with medical appointments if you don’t feel like the tests are showing anything up.”
“Most tests are not looking for Sarcoma specifically, it sounds cliché, but you know yourself best and you need to trust yourself. If there is pain and in my case, severe hot flushes, fatigue and weight gain then there has to be a reason why and it can take some time to get to the exact diagnosis,” Karen shared.
“From a diagnosis perspective, it can be hard to know when to do this, especially when you have sarcoma as the symptoms are very generic and it can look like anything. But you know when something is not right so keep persisting on getting those tests and keep pushing for answers.
“You also need to continue to believe in yourself post-treatment. Listen to how you’re feeling mentally as well as physically and ask for what you need and get help because it is out there.”