Pushing for the Diagnosis You Need
- Kelly Pendry, 42, started having symptoms of uterine cancer in 2016, such as heavy periods and intense pain. But doctors were quick to dismiss her concerns, and she didn’t get her stage four diagnosis until 2021.
- Uterine cancer includes two types of cancer: endometrial cancer (more common) and uterine sarcoma. Signs of uterine cancer include irregular bleeding as well as lower abdominal pain or cramping in your pelvis, just below your belly, or thin white or clear vaginal discharge if you’re postmenopausal.
- One of our experts says premenopausal or postmenopausal patients “with bleeding or abnormal bleeding should present to their [gynecologist] or at least their primary care so they can undergo further evaluation.”
- Kelly Pendry’s type of uterine sarcoma is called uterine leiomyosarcoma. This type of uterine cancer is an aggressive tumor that is challenging to treat because of its resistance to standard therapy, according to a case study published in 2022. But experts say progress is being made in therapy for previously difficult, drug-resistant uterine leiomyosarcoma in the form of novel chemotherapies, targeted therapies and new immunotherapies.
Pendry first started experiencing signs of her disease in 2016 when she struggled with “heavy, prolonged periods” and “a lot of pain.” According to the Cleveland Clinic, symptoms of uterine cancer can resemble those other other conditions and can include: vaginal bleeding between periods, bleeding postmenopause, lower abdominal pain, thin white or clear discharge in postmenopause, and prolonged or heavy bleeding if you’re over 40.Read More
But her concerns were valid and her debilitating pain was very real.
“I was some days doubled over in pain,” she explained. “The days I wasn’t bleeding were less than those I was. I was gaining weight without explanation. I had this really, really swollen tummy.”
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Then, in April 2020, Pendry’s “hero” came along and validated her concerns after feeling lumps in her abdomen.
“[The general practicioner] said, ‘How are you even coping?’ I said, ‘I’m not,'” she remembered.
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Pendry received a benign fibroids diagnosis in November 2020. Uterine fibroids, according to the Mayo Clinic, are noncancerous growths of the uterus that often appear during childbearing years. Also called leiomyomas or myomas, uterine fibroids aren’t associated with an increased risk of uterine cancer and almost never develop into cancer.
She was supposed to have a hysterectomy to treat the fibroids, but the COVID-19 pandemic kept pushing her appointments further away until the surgery never happened. But her condition only worsened by June 2021 when Pendry said she bled daily and “looked nine months pregnant.” At this point, doctors mentioned the possibility of a sarcoma, which is a type of cancer that can begin in the bones and soft tissues. But she didn’t officially receive her diagnosis until a lung biopsy in November 2021.
She’s now living with a type of uterine cancer called stage 4 uterine leiomyosarcoma. And she hopes her story “reaches someone in the early stages and makes them say, ‘I want further tests, or I’d like to be referred.'”
“We are coming around to talking about women’s health, menopause, periods,” she said. “My hope is it will improve.”
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Despite her poor prognosis, Pendry is determined to fight for more time. For treatment, she’s had six “grueling” rounds of chemotherapy. She’s now almost a year since finishing the treatment, but she still has side effects like tiredness, hot flushes, aches and pains from her hormone inhibitors.
“We have had stability for a year,” she said. “But we know this thing can just turn, and it can turn very quickly.”
Pendry says she’s been told surgery is no longer an option for her in the United Kingdom, but her husband is currently raising money to pay for her to have surgery in the United States. He plans to run 180 miles and 29,800 feet of elevation over the course of four days to hopefully raise the necessary funds.
“Kelly is my one and she always has been, and there is nothing I wouldn’t do for her,” the GoFundMe page reads. “We have 2 amazing children Sammy 10 and Isla 8 and they need their mum to continue creating amazing memories and giving them the life Kelly so desperately wants them to have, and if I’m being honest for me too, I need her.”
Understanding Uterine Cancer
Uterine cancer can be two different types of cancer: endometrial cancer and uterine sarcoma. More than 90% of uterine cancers are considered endometrial cancers, meaning they occur in the endometrium (the layer of tissue that lines the uterus). On the contrary, uterine sarcoma is very rare and develops in the myometrium, the muscle wall of your uterus.
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Unlike cervical cancer, uterine cancer is not caused by human papillomavirus (HPV). But there are also several conditions that may predispose someone to getting uterine cancer including:
- Polycystic ovary syndrome (which is marked by the absence of regular periods)
- Hyperandrogenism (elevated male sex hormones)
- Lynch syndrome
Understanding the Risks and Symptoms of Uterine Cancer
“These patients might not be thinking about this, their primary care providers may not be speaking to them about this,” Dr. Diana English, a gynecologic oncologist with USF Health, previously told SurvivorNet.
Part of being proactive about your uterine cancer risk means watching out for several signs that can lead to a diagnosis. Irregular bleeding – bleeding in between periods for pre-menopausal women and unexpected bleeding for post-menopausal women – is a very common symptom. Other signs may include lower abdominal pain or cramping in your pelvis, just below your belly, or thin white or clear vaginal discharge if you’re postmenopausal.
“The one good thing about uterine cancer, if there can be a good thing about any cancer, is that there’s usually an early warning system, which is abnormal bleeding,” Dr. English said. “So, patients with a premenopausal or postmenopausal with bleeding or abnormal bleeding should present to their [gynecologist] or at least their primary care so they can undergo further evaluation.”
Learning about Kelly Pendry’s Type of Uterine Cancer
Kelly Pendry’s type of uterine sarcoma is called uterine leiomyosarcoma. This type of uterine cancer is an aggressive tumor that is challenging to treat because of its resistance to standard therapy, according to a case study published by the Journal of the Advanced Practitioner in Oncology in 2022. It is also associated with a high risk of recurrence regardless of what stage it is diagnosed at.
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Uterine leiomyosarcoma most commonly metastasizes, or spreads, to the lungs, liver, abdomen, pelvis and pelvic or para-aortic lymph nodes. The above case study says women with this type of uterine cancer should undergo surgery and management with a gynecologic oncologist whenever possible.
Surgery is the cornerstone of treatment for patients with localized leiomyosarcoma regardless of the where it developed – in the uterus or otherwise. Furthermore, adjuvant chemotherapy – or chemotherapy given after the primary treatment to lower the risk that the cancer will come back – for early-stage disease is still considered controversial since multiple clinical trials have failed to demonstrate its benefit on overall survival.
Still, experts say progress is being made in therapy for previously difficult, drug-resistant uterine leiomyosarcoma in the form of novel chemotherapies, targeted therapies and new immunotherapies. If you or a loved one have been diagnosed with uterine leiomyosarcoma, or any type of uterine cancer, make sure you discuss all your treatment options with your care team.
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