Lymphoma Survivor Knows that Patients Can Be Their Own Best Advocates

Paula Ngon is speaking from experience when she tells patients with cancer that they can be their own best advocates.

“Nobody's going to fight for your life the way that you're going to fight for your life,” she told CURE®, “and it's important to speak up when you're feeling like something is wrong.”

Ngon, now 28, is a Hodgkin’s lymphoma survivor. She was diagnosed in March 2021 after noticing that her lymph nodes had swollen. From the beginning of her cancer journey, Ngon found herself working against disbelief and indifference.

“I went to the emergency room, (and) they didn't really address my concerns,” she said. “They told me that there was nothing wrong with me, and I really shouldn't come to the emergency room unless I'm bleeding out on the floor. So that was very discouraging to feel.”

Not having a primary care provider at the time, Ngon connected with a doctor via online service ZocDoc who she now describes as her “lifesaver.”

“(She) immediately was there to listen and figure out what was going on,” Ngon said. “She was a woman of color as well, (and) she said, ‘We're gonna figure this out today.’”

An X-ray and ultrasound followed, showing a shadow in Ngon’s chest. She connected with an oncologist, was diagnosed with lymphoma and decided to have her eggs frozen before starting chemotherapy.

After the egg retrieval, Ngon was left unable to walk on her own or breathe easily.

“My doctor just kept saying, 'It's probably swollen follicles pushing up against your lungs, it'll go down as you recover.' So I trusted and waited for that to happen,” she said. “And eventually I went to the ER. And this was like my last free weekend before I was going to start chemo, so it was an unfortunate place to end up.”

Blood had filled her lung cavity, preventing her lungs from fully expanding, a scan revealed.

“It went from 'You're fine, (you're) being overdramatic' to 'This is an emergency situation,'” she said. “They had to drain my lung cavity, and then my lung was able to expand.”

Following Ngon’s chemotherapy port insertion — something which Ngon said her doctor made her feel like was “the only option” for treatment — her right arm went numb and turned blue. She eventually purchased a sling to support it.

“That was for three weeks of telling my oncologist 'There's something wrong with my arm. It feels like there's vines wrapped around my arm,'” she said.

Ngon and a close friend, both public relations professionals, crafted an email to express her concerns, and her oncologist sent her to see her radiologist. The radiologist, in turn, immediately sent her to the emergency room, where blood clots were found throughout her arm. Ngon was in the intensive care unit for a week or so and said she didn’t hear from her oncologist once.

“It was really frustrating, because there were just numerous situations where I was trusting my gut and kind of being gaslit into believing that it wasn't that bad or nothing was wrong,” she said. “And when it ended up being worse than even what I imagined, I never got any kind of validation or an apology. And I just really didn't feel safe. I felt like (I was) a number to him.”

Ngon switched doctors, and a professional connection led her to Dr. John Leonard of New York-Presbyterian/Weill Cornell Medical Center, also a member of the scientific advisory board for the Lymphoma Research Foundation. By December of 2021, she was in remission.

‘These issues are happening.’

Now working with the Lymphoma Research Foundation, Ngon is using her experiences to urge fellow women of color and members of other minority groups to advocate for themselves.

“I think a lot of African American culture teaches you to deal with health issues internally and not talk about it and keep it like tight to the chest and pray to God and all these things,” she said. “But then, when you seek support and seek help, you don't see anyone who looks like you.”

During her cancer journey, Ngon faced issues due to lack of support — "All these support groups were full of White women. The ignorance that I had about cancer, I was like, 'Is my hair gonna fall out? Because it's a little bit different,'” she said — and she learned that self-advocacy extends beyond the doctor’s office into every aspect life, such as navigating the frustrating landscape of billing and insurance.

“It almost just feels impossible to conquer this while also trying to rest and like maintain energy and maintain positivity,” she said. “And it's so crazy, (there are) so many things that I just want to speak about because I don't necessarily have the solution to everything, but just (for people) to be made aware that these are issues that are happening.”

‘It’s important to be honest.’

Patients should also know that help is out there for them, as Ngon explained.

“When you're in the hospital system … ask for a social worker, and then ask what programs are available, both with LRF and other organizations like (the Leukemia and Lymphoma Society) that do give money to patients for transportation, for your bills,” she said. “The bills were just piling up, and I had no idea.

“And there are resources outside of just (a) social worker (or) therapy. And I think that if you're able to get matched with someone, wherever you're getting your care, definitely ask for that and they can point you in the direction of organizations that can help. I think that it's kind of overwhelming at the time, where you're trying to stay positive and recovered, to also source all of that information.”

When it comes to advocating for oneself, Ngon stressed the importance of honesty.

“I was honest throughout my first experience with my oncologist about the fact that I didn't feel that he was listening or I was disappointed that I hadn't heard from him during my entire time in the (intensive care unit), not knowing what was next or whether I was getting the surgery or not getting the surgery,” she said, “and his dismissiveness of my honesty confirmed that maybe he wasn't the right person for me.”

Ngon urged patients to find a leveled way to communicate their concerns, and note how their provider responds.

“I just don't think that having to go through all of that convincing and advocating helps when you're also trying to just fight cancer,” she said. “You just want it to be a peaceful experience where you can exchange information about how you're feeling and what they think the best options for you are. And if you don't feel like it's a two-way street, I think that being honest allows them the opportunity to show who they really are, and then allows you the opportunity to then move on to someone who will care.”

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