An Adelaide woman has been diagnosed with a rare form of cancer that has been reported in less than 30 other cases worldwide.
Mother of two, Lara Hall, 38, was diagnosed with broad ligament leiomyosarcoma this year when doctors removed a 16cm tumour that was blocking her kidney.
Leiomyosarcoma is a rare form of cancer that can grow in any smooth muscle tissue, and for Hall it was found in her broad ligament connective tissue around her reproductive organs.
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Hall said a month earlier she had experienced sharp abdominal pain for about two days, then went to the emergency department.
“It felt like stomach pain or back pain,” she said.
When surgeons removed the tumour in March, they had to remove her uterus, but believed she was cancer-free post-operation.
Although she thought she was in remission, Hall said having a hysterectomy was devastating news because she and her husband had been trying for a third child for about one year.
“The biggest feeling was grief that I had a hysterectomy and wouldn’t have another baby, not thinking that the cancer would be coming back,” Hall said.
In June, she began feeling nauseous and experiencing abdominal pain again.
“I presented to emergency and emergency told me they thought the pain was due to anxiety and sent me home, “she said.
“Then I went for a scan a few days later and found, in fact, the cancer was still there and spread to my abdomen and pelvis.”
Hall’s unique cancer means there’s little literature and medical experience on the most effective treatments.
She is currently doing combined chemotherapy, involving two different types of chemotherapy drugs, which has so far been shrinking the growths.
Her medical teams have advised her the treatment is to prolong her life, but they cannot guarantee that she will be cancer free.
WEHI (formerly known as the Walter and Eliza Hall Institute of Medical Research) senior postdoctoral fellow Dr Holly Barker has been involved in the centre’s Stafford Fox Rare Cancer program to find treatments for rare cancers through genomic sequencing.
The team have found some cases of uterine leiomyosarcoma respond to PARP inhibitors, which are a protein that helps damaged cells repair themselves.
Barker said that although Hall’s cancer is different to uterine leiomyosarcoma, there could be a chance, her tumours will respond to similar treatments.
“They (broad ligament and uterine leiomyosarcoma) do have similar mutations …. patients with broad ligament leiomyosarcoma have the same treatment as uterine leiomyosarcoma, and I’m assuming they would have the same genetic changes,” she said.
Hall is preparing to seek treatment overseas, in the US or United Kingdom, with hopes of completely curing her cancer, so she can continue to be present for her two young children, who are aged four and six-years-old.
She described the thought of her children being without their mother as “inconceivable”.
“I’m so grateful for the care I’ve had so far. I just have to be getting the treatment that will help cure me of cancer,” she said.
“All I have is this hope that I will find the right treatment to get better,” she said.
Barker said while most approved treatments for leiomyosarcoma world-wide were also offered in Australia, there could also be clinical trials in other countries that aren’t being offered here.
Before being diagnosed, Hall was an English teacher supporting refugee students at a public school in Adelaide.
She described herself as someone who extremely positive, family orientated and “felt life was going really well” for her.
“The diagnosis has been the most horrific series of events that I could imagine. I feel like it’s not even reality. It’s so heavy and dark,” she said.
“I’m still absolutely shocked and bewildered that this is the reality that I’m waking up to every day.”
A GoFundMe has been set up to help the family financially and support Hall pay for any costs of travelling overseas for treatment.
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