Advice for Patients Newly Diagnosed With Multiple Myeloma

Oya Gilbert, a 55-year-old who was diagnosed with multiple myeloma in 2017, encourages newly diagnosed patients, especially those from underserved communities, to prioritize self-advocacy and emotional well-being.

Gilbert, a lifelong hip-hop fan, uses music alongside storytelling and advocacy to engage and educate underserved communities about blood cancer.

He advises bringing a trusted companion to medical visits or recording appointments to capture critical information. Gilbert stresses asking questions, seeking second opinions and taking time to process emotions, reminding patients that feeling overwhelmed or upset is normal. Drawing on his own experience surviving eight years post-diagnosis, he emphasizes patience, grace and the importance of informed decisions in navigating blood cancer care.

Transcript

For someone who is newly diagnosed, especially from an underserved community, what early steps do you encourage them to take to advocate for themselves?

One is to bring another set of ears and eyes with you along the journey, if you have the ability, so you can hear what’s being said. You’re not going to hear all the information. It’s a plethora of stuff that’s overwhelming, and you miss it. So I would say, get someone to come to the visits with you. If you can’t, you can ask permission to record the visit. You know, technology — record the visit so you can listen back later in your own comfortable space, your own trusted space, when you have time.

I would also say, make sure you ask plenty of questions. There’s no stupid question when you get cancer. There’s no dumb question. Ask plenty of questions, and don’t be afraid to challenge what the doctor said.

Go get a second opinion. That’s another huge thing. You’re not discrediting the first doctor, but have a second opinion, because in this cancer space, there are only sound decisions. There is no one correct decision. In order to make sound decisions, you need as much information as possible.

For a newly diagnosed patient, I would tell them to bring someone with you to your visits so you can take in the information. Give yourself some grace, because it’s a lot, and it’s OK. It’s OK to have bad moments, to be upset, to be hurt or even to be in a state of depression. The key is not to stay there. That’s what I always tell people. These emotions in this space are real, especially when it comes to mental health. When you’re diagnosed, your whole world changes.

It’s OK to take time to decompress, understand and process those emotions. Have patience with yourself and give yourself grace. You may have never even heard of the disease, and then you’re told it’s incurable. That can take you for a loop. But I’m a living testament. I survived two years with no treatment, and now, after Christmas and a couple more weeks, I’ll be in my eighth year since diagnosis. To me, that’s proof positive.

Transcript has been edited for clarity and conciseness.

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