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As a young woman diagnosed with ovarian cancer, Tiffany Stout greatly understands the need for a clinical bridge between a patient’s oncology care and their overall wellness.

“I need bone density scans and calcium; I have to watch my diet and I’m dealing with menopausal issues in my 30s. The Survivorship Clinic at VCU Massey Cancer Center really helps treat my symptoms of cancer that aren’t cancer,” Stout said. 

Using a multidisciplinary approach that combines clinical care, patient education and research activities, Massey’s Survivorship Program offers a wide variety of services and is centered on helping people with cancer thrive throughout and beyond cancer treatment.

“I thought that was awesome. I haven’t seen that in other places, so I’m curious to see if that starts popping up in other cancer centers,” Stout said.

Following her initial cancer diagnosis and treatment while living in Philadelphia, Stout now receives her follow-up appointments, tests and survivorship care at Massey. She was definitely nervous about having to change her oncologist and care team, but felt much more relieved after she met her providers at Massey, which include Stephanie Sullivan, M.D., Sarah Baffuto, AGPCNP, and Jodi Cunningham, FNP.

“I feel like I’m heard. Dr. Sullivan and the Massey team are great,” Stout said. “I have a special place in my heart for nurses, and the nurse practitioners are awesome. They’re probably one of the reasons why I feel so comfortable at Massey.”

In 2013, Stout was living in Philadelphia and took herself to the emergency room when she thought her appendix had ruptured following a sharp pain in her side. Doctors discovered she had a cyst and removed it through surgery. 

About a year following her surgery, Stout began experiencing similar symptoms, including bloating and feeling the need to use the bathroom frequently. While working a shift at a restaurant, somebody lightly tapped her stomach with their arm in passing, and she doubled over in nauseating pain.

“I was just turning 30, and cysts are super common, so I gave it six-to-eight weeks to clear up,” Stout said. “It didn’t clear up at all.”

Her OB-GYN performed a CT scan and found that she had tumors on both ovaries. At this time, she was told she would need a non-invasive robotic surgery.

Her surgery was scheduled in January 2015 after a trip with her wife to the United Kingdom, but her oncologist ordered an MRI before she left. It was around Christmas time that she received some concerning test results.

“I didn’t understand a lot of it, but I saw the word malignant, and I knew it was not good,” Stout said.

When she returned home in early January, she was told she would need a laparotomy, in which a surgical incision is cut into the abdomen in an attempt to remove as much of the tumors as possible and determine the stage of disease to inform any additional therapies.

Having just started her new job in December, she originally told her boss that she would need about a week to recover from surgery, but the laparotomy would now require six-to-eight weeks of recovery.

She knew going into the procedure that her ovaries would be removed, but it remained to be determined if they would remove her uterus as well based on the size of the tumors when they opened her abdomen. Being 30 at the time, Stout had to have a difficult conversation with her wife about whether or not they wanted to have kids.

“We both kind of came to the conclusion where I’d rather be around to have kids in maybe a different way, rather than to have kids but maybe not be there for them,” Stout said.

Stout’s dad accompanied her to the surgery. During the procedure, the doctors removed a sample of her tumor, froze it and sent it for immediate testing while Stout was still unconscious on the operating table. Based on her doctors’ recommendations, she had told her father that if anything showed up out of the ordinary while she was under to have the doctors remove all of it. When the results indicated the tumor was borderline, her father went ahead and asked them to perform a full hysterectomy per Stout’s wishes.

While Stout was recovering from her surgery, tests indicated that the tumors removed from her body were stage 3c ovarian cancer — a type of disease known as low-grade serous carcinoma — which is characterized by a slower replication and growth of cancer cells.

Because the cancer was low-grade, Stout was given the option to monitor the tumor without treatment or to undergo chemotherapy. She chose to receive chemotherapy to meet the prerequisites of future clinical trials if she had a cancer recurrence.

After regaining weight lost while recovering from her surgery, Stout began a 16-week regimen of chemotherapy infusions at the Abramson Cancer Center. At first, she was able to manage treatment fairly well, with minor flu symptoms two-to-three days after each infusion, and she had work flexibility that allowed her to sleep late in the morning. As time progressed, the sicker she began to feel after each treatment, and her hair started falling out in clumps. She decided to shave it all off with an electric razor.

“It’s very difficult for women to lose their hair, and people often treat you differently or try to touch your head without asking,” Stout said. “It’s physically and emotionally painful.”

After finishing her chemotherapy, she got involved with the National Ovarian Cancer Coalition (NOCC). The organization hosts an annual 5k, and because Stout was always an active runner, she signed up to give her an event to look forward to. However, her muscles had weakened following the surgery and getting up and moving proved to be slow and frustrating. She found that biking and yoga were pivotal to regaining her strength, and eventually she was able to complete the 5k.

As a younger cancer patient often isolated from other people who are older with a similar disease, Stout has found that access to similarly-aged women through support groups like NOCC has allowed her to feel like a part of something beyond herself and know that she is not alone on her journey. 

“Women who have gone through this at a young age, we have fertility issues, intimacy issues, relationship issues — stuff that you don’t necessarily get when you’re 65,” Stout said. “It’s really hard to go through it and to think you’re alone in it is awful. Finding that support community has really helped me.”

She added that the supplemental care offered through the Cancer Survivorship Program at Massey has provided important clinical support for cancer-related effects to her health that aren’t treated by her oncologist, including menopause, low bone density and changes in her mental wellbeing. 

Following chemotherapy, Stout has been on a daily oral hormone maintenance therapy called letrozole and receives a CA-125 blood test every six months, which detects the amount of a protein found in ovarian cancer and can signal if the disease has returned.

The CA-125 blood test is useful for women who have previously had ovarian cancer and can help guide future treatments, but is not effective as an overall screening test for ovarian cancer, according to the American Cancer Society. There are currently no reliable screening tests for ovarian cancer.

“When I had my tumor, my CA-125 levels were super high. After they took the tumor out, my levels dropped,” Stout said. “For me, that’s a good marker, but that’s not the case for everybody.”

Stout has had no evidence of tumors since her surgery, but doesn’t like to call herself cancer-free or a cancer survivor because she sees it more as continuing to live with cancer as opposed to it being behind her.

”It’s such an ongoing process. Even if you’ve only had cancer one time and they removed it, you’re still getting checked; you still have that little voice in the back of your head,” Stout said of the persistent fear of the disease returning. “For me, it’s like a before and after moment where my life before this happened, and my life after happened.”

Stout moved to Richmond in 2018 after her wife accepted a new job. Stout continues to work remotely as the finance director of Medical Students for Choice, a nonprofit organization based in Philadelphia.

For other women who may be going through a similar experience or diagnosis, Stout encourages them to learn to listen to your body, speak up when something is wrong, ask questions and try not to put yourself last.

“As women, a lot of times we put ourselves aside to make sure everybody else is okay,” Stout said. “And that’s the problem with cancer is the longer you wait, the less chance you have of taking care of it.”

Written by: Blake Belden