What It’s Like to Navigate Vaginal Cancer, a Rare Type of Gynecological Cancer

Shelly Busby realized something was wrong when “little things started happening.”

In summer 2018, she was diagnosed with dermatomyositis, a rare autoimmune disease that is marked by muscle weakness and skin rash. Then in January 2019 she saw an oncological surgeon to help with a cyst that began bleeding.

When vaginal cancer is caught early, it can be treated with surgery or radiation, which are both “very effective,” according to Dr. Karen H. Lu. However, it becomes more challenging at the later stages and when it has spread because treatment options are limited.

A biopsy was done and there was no indication of cancer. On a Friday morning in February 2019, she started bleeding from her vagina — even though she hadn’t had a menstrual period for years. A physician’s assistant in her OBGYN’s office said she thought it was a cyst, drained it and did a biopsy indicating no concern. Busby was still worried, so she sought the help of her doctor, who she had seen in January for the original cyst.

At the time, she was living in Colorado and her doctor did a much more thorough exam and found a cancerous mass which her biopsy then validated. Her doctor performed surgery to remove the tumor of unspecified origin and diagnosed it as a rare form of vaginal cancer and classified it as stage 3 because of the way it presented.

A scan in March 2019 indicated that the cancer was gone. But then another scan in August showed that the cancer had spread to three new areas in Busby’s aortic lymph glands. Her formal diagnosis is malignant neoplasm of the vagina, metastatic cancer to the retroperitoneum and abdominal lymph nodes.

“(My first thought was) who would be the best people to help Steve, my husband, and I face this,” Busby said in an interview with CURE®. “I have been blessed with incredibly wise, compassionate, positive, supportive, empathetic medical professionals. As well as my family and friends along the way and I couldn’t do this without any of them.”

Treating Vaginal Cancer

“Amongst the gynecologic cancers, (vaginal cancer) is a rare cancer,” Dr. Karen H. Lu, chair in the department of gynecologic oncology and reproductive medicine at The University of Texas MD Anderson Cancer Center in Houston, said in an interview with CURE®. “The prognosis is linked to whether it’s caught early or whether it’s caught at its later stages.”

Lu, who is one of Busby’s physicians, further explained that when vaginal cancer is caught early it can be treated with surgery or radiation, which are both “very effective.” However, it becomes more challenging at the later stages and when it has spread, such as Busby’s diagnosis, because treatment options are limited.

And although this rare form of cancer does not have any currently approved therapy, Busby never felt her doctors had trouble treating her.

“Even though I remember my (doctor) saying, ‘This is so rare. I’ve never seen anything like this before,’ and she said it several times,” Busby noted in an interview with CURE®. “She never hesitated or made me feel in any way like she didn’t know how to treat it or what to do.”

After initial surgery in Colorado, she received chemotherapy once a week and radiation every day from May to June 2019. Then after they had seen the cancer had metastasized, her doctors suggested a new approach. They knew Busby and her husband were looking to move to Texas to be closer to her daughter and suggested she continue treatment at the University of Texas MD Anderson Cancer Center in Houston.

They also suggested she start treatment with Taxol (paclitaxel) and carboplatin, which her new doctor at MD Anderson, Lu, agreed with and decided to add Avastin (bevacizumab) to the combination. She received part of the treatment in Colorado and the other part in Texaswhen she moved.

Busby was prescribed Avastin every three weeks following a CT scan in March 2020. But unfortunately, this treatment plan could not continue because Avastin was not covered by their insurance. Which is when Lu suggested a clinical trial — even though they are hard to come by for this rare cancer.

“It’s very hard to do clinical trials for vaginal cancer because they are so rare,” she said. “And so that remains (one of) our biggest challenges.”

However, Lu introduced Busby to Dr. Timothy Yap, an associate professor in the department of investigational cancer therapeutics at MD Anderson and was running a clinical trial for different cancers, including vaginal cancer at the time.

In January 2020, Busby enrolled in what would be the first of three trials and received Lynparza (olaparib) twice daily and Aliqopa (copanlisib) infused weekly. She completed only two cycles before CT scans showed that the cancer in her lymph nodes was still growing. And immediately after, Yap enrolled her on another trial — which she wasn’t on long because it was not effective.

It was the third clinical trial under Yap that she finally started seeing a benefit. She currently receives an infusion of a first-class ATR inhibitor, berzosertib every week in addition to Bavencio (avelumab) every other week. After receiving this regimen, CT scans showed the cancer in Busby’s lymph nodes reduced by almost 85%.

“(Busby) had very distinct mutations, one of which we call a DNA damage response mutation and another an immunotherapy biomarker. And because of these findings, we put her onto this clinical trial of an ATR inhibitor and immunotherapy that was a match for both her genetic alterations in her cancer” Yap explained in an interview with CURE®.

“I feel incredibly blessed. … I have an unwavering support system and an amazing care team. My heart is filled with gratitude beyond words. … I feel very hopeful and blessed,” Busby said.

Advocating for a Rare Cancer

Not only did Busby note that she feels blessed that the treatment is working, but also grateful that her doctors have advocated for her along the way.

“I never felt for one instance that just because my diagnosis was unique or different, (my doctors) didn’t know what to do with me,” she added. “I feel very grateful that people will listen to me when I’m asking for help. Because sometimes it’s hard to ask for help and know exactly what you’re asking for. You’re just asking for whatever information or advice they can give that might offer insight or information we didn’t think about before.”

Lu agreed and said that it is important for patients with a rare cancer, such as vaginal, to find specialists who are experienced and will listen to them.

“Because it is rare, it’s important for women to see physicians who have expertise in this area,” Lu noted.

Since Busby has been through such a long journey with her cancer, she offered others with a rare cancer advice on how to get through and advocate for themselves:

• Be open minded to clinical trials. She is grateful for the one she benefitted from and got there from joining others.
• Share what you value with your medical professionals.
• Ask questions. And she has even found it beneficial to ask her doctors to draw pictures to better understand where her cancer has spread and where it hasn’t in her body.

“The last piece of advice I would have is to just take it one day at a time,” Busby concluded. “It helps to not think about what has happened or what might happen. … Just appreciate the moment, who you’re with, whatever you’re doing because it really doesn’t help to go back or to think about what might happen in the future, unless you are thinking positively.”

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