When Zoë Handscomb-Edwards went in to get a bump in her leg checked out for “peace of mind,” she was just 16 weeks pregnant when she got a diagnosis that would forever change her life.
While attending a yoga session with a buddy, the digital marketing manager, who is 44 years old and hails from Bournemouth, England, became aware of the lump for the first time. In an interview with the Daily Mail, she referred to it as “bigger than a golf ball” and told the publication that she believed it was caused by a torn muscle.
Following the examination of the lump by medical professionals, she was informed that it was in fact a tumor. She was subsequently diagnosed with perivascular epithelioid cell tumor, which is more frequently referred to as PE, or PEComa.
A cancer organization called Sarcoma UK describes PEComa as a “very rare type of soft tissue sarcoma that develops from the cells lining the blood vessels.” PEComa is associated with a high risk of death. According to the website, it is far more prevalent in females and most often manifests itself in the uterus, skin, liver, and intestines.
The malignancy is estimated to impact one in one million individuals on a yearly basis, as stated by a GoFundMe campaign that is managed by Rob Handscomb-Edwards, Zoë’s husband.
“The day when a doctor told me, ‘We suspect it’s a sarcoma,’ was the worst day of my life. Zoë sent a statement to the Daily Mail, stating that she “burst into tears” after leaving the workplace. She described the situation as “absolutely horrifying.”
She had surgery at The Royal Marsden in London to have the tumor removed while she was seven months pregnant. In July 2023, one month after giving birth to her daughter Penelope, a PET scan proved that the cancer had spread throughout her body. In addition, she had additional tumors developing in her leg, which was the location where the initial tumor had been removed.
“At the time, I had just given birth to my child, and they were telling me that I may not live for another six months. According to what she shared with the publication, “they told me that I had between six months and two years to live.” “I remember thinking I was going to die and I wasn’t going to see Penelope grow up.”
Rob noted on their GoFundMe page that his wife has undergone “four rounds of radiotherapy, a hip replacement surgery, and hormone treatment” after that, and that they are now considering alternative treatment options.
Based on the information provided on the page, Zoë’s cancer is deemed to be incurable and has advanced to the fourth stage. In spite of this, she and her husband are engaging in fund-raising activities in order to make an effort to treat the sickness using experimental medications. They have said that if they were to collect more than $46,000, it would assist them in paying for a year’s worth of therapy, the majority of which is not covered by the National Health Service (NHS).
At the time of publication, Zoë and Rob had successfully raised more than eleven thousand dollars.
Not only that, but the mother of one also disclosed on Instagram that they had been granted compassionate access to one of the experimental medications. This indicates that the manufacturer will contribute to the cost of the medication for as long as she is able to take it.
In a period of three months, she will be subjected to tests to see whether or not her body is reacting to the medication. In the event that this is not the case, or if she has any major adverse effects, she will be required to use a second alternative, which has not been authorized for compassionate access and will need her to pay for it out of her own expense.
In addition to that, Zoë said that she is also attempting cold plunging in order to assist her body while she is undergoing the therapy. “With such a rare cancer, we are venturing into the unknown, and our biggest hope is that the longer Zoë can stay alive, the more likely it will be that further innovative treatments and clinical trials could become available to her,” Rob said on the crowdfunding website GoFundMe.
In a subsequent post, he continued by writing, “Living with cancer is not linear, and there are many ups and downs.” There is a possibility that Zoë will be working at her job, tending to the garden, or playing with Penelope in one week. It is possible that the next week may be spent in bed, experiencing pain, recuperating from surgery, or coping with the adverse effects of therapy. These targeted treatments, in our opinion, provide Zoë with the greatest possible opportunity to survive for a longer period of time and to spend more of her precious time with Penelope and me.
Even though she will not be charged for the medicine that she is now taking, Zoë will utilize a portion of the money that have been gathered to pay for acupuncture and other treatment options that are aimed at alleviating the nerve pain that is becoming worse. Additionally, the money will make it possible for her to have access to extra testing, which will assist in the detection of more severe adverse effects that may be caused by the experimental medicine. “I’m not trying to chase down a cure, obviously if my cancer went away that would be incredible but every doctor I’ve spoken to has said it’s incurable,” Zoë told the Daily Mail. “In my mind I’ve thrown the prognosis out of the window and I’m just living, this August will be two years and I’m doing okay.”
The National Cancer Institute reports that PEComa tumors are mostly benign, but in very rare instances, they may develop into malignant entities.
It has been brought to the attention of Sarcoma UK that the condition is believed to be connected to the genes TSC1 and TSC2. Based on the information provided by the GoFundMe campaign, it has been determined that Zoë’s cancer is even more uncommon and challenging to cure due to a hereditary mutation in the gene TFE3.
