Megan’s story: Never give up

July 4, 2022

“You have a mass the size of a mango near your appendix.” This is news Megan, 38 at the time, was delivered by her GP in early 2019. 
 

The mother of three underwent emergency surgery to remove the mass, along with a large section of her colon, which she says left the surgeon ‘flabbergasted’. 

“The tumour was a mix of cells, including ovarian stroma, and certainly found nowhere near my ovaries. It took two weeks for pathology to report back with even a description of what they saw under the microscope; they had no name for it.

“I was told I had a rare malignancy, with only two or three documented cases in the world. The other case reports were done on autopsies, so my prognosis was not good. It seemed my fate was already decided,” she said.

Megan says treatment was ‘a stab in the dark’. She completed chemotherapy for six months, but the cancer continued to grow at a rate of 8cm every three months. It grew back but this time in her liver, so she had a second surgery to remove half of her liver, plus her gallbladder and affected lymph nodes.

“My body felt so broken, but I would not let it affect my spirit. While each breath was painful, I focused on the fact that I had breath and the will to fight for more and more,” Megan remembers. 

Unfortunately, the cancer grew back again at an aggressive rate, and within weeks of her surgery a PET scan confirmed her liver was riddled with cancer, along with growth in her lung and rib.

“The oncologist said there was nothing else to be done. We knew I wouldn’t see the end of the year. I wasn’t afraid of dying, but I was afraid of what that would do to my children and my husband. I was even more determined to turn over every stone for a chance to survive.”

During their journey, Megan’s husband, a professor in microbiology, insisted she have gene profiling done on her tumour.

“He spent day and night researching journal articles and clinical trials. When all hope was lost, the results from my profiling finally returned and we found a trial that matched some of my mutations. I was fortunate to get in before covid lockdown, as they shut down acceptance the following week.” 

The trial was rough on Megan, and she had numerous hospitalizations before a manageable dosage was set.

“When I got the results of my first scan, it already showed my tumours were shrinking and appeared to be liquifying. After six months, no tumours could be seen on my scans.”

Megan continued for another year and a half until the trial company granted her permission to come off with the ability to resume if the cancer reappeared.

“I’ve been off treatment now for three months and I finally feel like I’m getting a semblance of my life back. My three beautiful children have their energetic mum again, and my husband – who I know saved me – can see a future with his wife. We never know what each scan holds so we cherish the moments we have been gifted.

“Cancer is an awful disease, and the journey is an emotional rollercoaster. But it also gave me the gift to find gratitude in all things and cherish each breath. The sun has never shined brighter, and I appreciate each raindrop on my face.

“I refuse to allow it to be purposeless, which is why my husband and I share our story to inspire and empower others. We advocate for gene profiling and molecular screening, which saves lives.”

“We’ve met with many people who have heard of our journey and are desperate for the same hope. There might be options out there that you never expected to find, and people who can help you look for them. Never give up.”
 

For more information on genetic testing, contact a Specialist Cancer Navigator on 1800 257 600 or email [email protected] 

 

Keep up with Rare Cancers Australia

Inside Rare is a monthly newsletter that shares the latest news, events and stories connecting the rare community.