Gloria’s story: Living with the uncertainty of rare cancer

15 Feb 2024

“No one could tell me a thing about my rare cancer. I had no idea what it was, who else had it, or what the best treatment options were.”  

Ten years ago, Gloria was enjoying a cruise with friends when she developed a cough she couldn’t shake, along with the inability to feel warm. After initial testing indicated lung cancer, further investigation revealed the then 66-year-old had thymoma – a type of cancer that affects the thymus, an organ located in between the lungs that is part of the lymphatic and immune systems. 

“At the time, I was only able to get basic information about my cancer from America and England. Not much was known about it in Australia, and there was no support group for rare cancers. Cancer organisations and charities knew nothing of my cancer and would fail to get back to me about what support they could offer,” Gloria remembers.  

“The doctors didn’t know what treatment to start me on or what prognosis to give me. They would say, “I see you have a rare cancer; how did you get this? What does this result mean?” I thought, hang on, I am here for you to help me! I was just left in limbo.”   

Told surgery was not an option at the time, Gloria started on 22 rounds of radiation over six weeks, an experience she describes as ‘terrifying’. 

“No one could tell me a thing about my rare cancer. I had no idea what it was, who else had it, or what the best treatment options were. I remember saying to my GP at the time that there was so much information and help for people with more common cancers, but no one knew anything about what I had. It’s the not knowing that is the hardest part.” 

“It wasn’t until my GP discovered a thymoma support group in England that I found a link to Rare Cancers Australia. It was then that things started, in the way of having someone to talk to. That was about three years ago.”  

Gloria became a member of the online Rare Cancers Australia Thymoma Support Group.  

“People still don’t know a lot about thymomas. But talking to the group, it sounds like more doctors are getting breathing issues checked for thymomas. It seems like there is more knowledge out there now than there was, and doctors are explaining more to people. But I still think we have a long way to go. No matter what cancer you have, no matter where you live – everyone should have access to tailored information. People with lesser-known cancers need more support.”  

Gloria has undergone chemotherapy on and off for ten years to keep the cancer at bay. She credits her stubborn nature and will to live with getting her through the last decade of uncertainty.  

“You go through hell and quite often you think, this is it, it’s just way too much. But I am very stubborn; I just want to be here and keep going. I’m so lucky in that I’ve been able to maintain a pretty normal life – I could still go to dances, cook, eat what I like. I’m only starting to get pain in my bones now from being on treatment for so long. My body’s starting to let me know about it. I don’t know what’s to come, but it’s just something you have to live with.”  

Gloria encourages others to ask a lot of questions, and to be honest with their doctors about how they’re doing.   

“I always think the doctors are in a hurry, so I don’t want to bother them. I tell them I’m fine. But I know if I don’t tell them about my pain, they can’t improve my quality of life. Older people like me need to stop holding things in, we need to learn to talk to our doctors!”   

She also warns others to be wary of scary prognoses.  

“We need to trust our doctors more, they’re here to help us. But I do think hope is important. I’ve seen people who were told they have five months to live when they began treatment – they’re still going years and years later. Timelines put pressure on people, and more treatments are coming through all the time. I know they will find a cure for it eventually.”