Carly Stafford Dixon is a survivor of primary mediastinal b-cell lymphoma (a rare type of blood cancer).

Carly Stafford Dixon

Carly Stafford Dixon, discusses how she approached fertility preservation after her diagnosis of primary mediastinal b-cell lymphoma, a rare blood cancer.

Facing Cancer as an AYA and Navigating Fertility Preservation Choices

A cancer diagnosis in adolescents and young adults (AYA) presents many unique challenges that will follow them even after treatment, with fertility preservation presenting as a concern in treatment planning and long-term survivorship.

According to the American Cancer Society, for a woman (or individual with female reproductive organs), a cancer diagnosis and treatment can affect your ability to have a child, in turn, making it important to connect with your team to discuss which treatment plan is right for you based on individual fertility concerns.

In an interview with CURE, Carly Stafford Dixon, a survivor of primary mediastinal b-cell lymphoma (a rare type of blood cancer) and a patient advocate, discussed how she approached fertility preservation after her diagnosis of primary mediastinal b-cell lymphoma, a rare blood cancer. She also expanded on 

, the importance of a stable support system during treatment and how 

survivorship has shaped her outlook on life

I had my CT scan that showed a very large tumor in my chest, later described as the size of a giant yam, or a non-award-winning melon — you know, like it wouldn't win any county awards, but quite large and growing fast. My oncologist said, “If this thing is slow-growing, it's been there about five months. If it's fast-growing, it probably started growing a month ago,” which was a shock because this thing was huge.

I went into the hospital on a Friday night, and immediately we started all kinds of testing to see what was going on. Only maybe the second or third day, when there was a real chance that this was going to be cancer, I was so sure that I ordered myself a nice blanket. I was like, “I'm going to get ready for treatment.” I was talking to my older sister, a PA, who has been so helpful, and she said, “Make sure to talk to your doctor about fertility preservation.” At the time, I didn't have an oncologist yet because I wasn't diagnosed yet, so I just had an internist who was awesome, but that fertility preservation was never brought up to me. It was something that I had to ask about.

He talked to me about some options, and one of them that I heard about from this internist was there's a shot you can get. It essentially makes your eggs ready for retrieval in 30 to 36 hours. I was thinking, “Okay, that's a good option if I don't have time for the classic fertility treatment with the hormone shots and everything.” When I was diagnosed — so again, went in on a Friday, was diagnosed on a Monday — I asked the internist who came out to deliver the news, “Can I get that shot? Can we?” I figured time was of the essence. If this thing had only been growing for a month, if I waited to do the traditional egg retrieval process, the tumor would be giant, so I asked him, “Can we, can I get that shot so that hopefully we can get some eggs out?” And he said, “Unfortunately, with this type of cancer and with the rate your tumor is growing, if you don't start chemo tomorrow, you've got two weeks to live at most,” because this tumor was just shoving organs out of the way.

My heart was completely displaced; it was crushing a left lung. As that tumor gets bigger, a lot of patients with this type of cancer, it starts to push on their superior vena cava and their heart, which causes SVC syndrome. People run a risk of suffocating and having vital organs damaged. All this to say, he said, “You don't really have time for that, not even the 30-hour one.” So I said, “Okay, what are my options?” Having a family is important to me and to my husband, and he said, “Here's a shot that we can give you about once a month called Lupron.” Lupron put me into temporary early menopause. I would get the shot every so often, and it essentially shuts down your ovaries. That was my only option, and I took that option.

Transcript has been edited for clarity and conciseness.

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Carly Stafford Dixon, a rare cancer survivor, highlights the need for AYA cancer awareness to improve support, visibility and access to vital resources.

Raising Awareness for Adolescents and Young Adults with Cancer

Carly Stafford Dixon, a survivor of primary mediastinal b-cell lymphoma (a rare type of blood cancer) and a patient advocate, sat down for an interview with CURE to discuss the topic of adolescents and young adult (AYA) cancers.

In the interview, Stafford Dixon aided in raising awareness about AYA cancer. She shares that bringing awareness to this topic is essential because this age group is often overlooked in media portrayals and public understanding. She also went on to emphasize that greater awareness can help ensure individuals feel supported from diagnosis through survivorship. Increased recognition may also lead to improved access to resources.

Tune into more of our insights on the recent 

, CEO of Stupid Cancer — an organization which helps to empower those affected by AYA cancer — to discuss the topic.

I think it's important to raise awareness about AYA cancer because often, when cancer is portrayed in the media — whether it's movies, TV shows, or books — you often see it as a tragic young child getting it, or it's someone perhaps over the age of 50. I think this age group is really underrepresented in our understanding of whom cancer can affect, and that's everyone, no matter their age.

Just the raising awareness [part of things], I think it's important that everyone feels supported during their — I don't love to use the term "cancer journey" — but feels supported during the whole process, from diagnosis to treatment to hopefully survivorship. Ideally, if we can raise awareness about AYA cancer, then there could potentially be more resources available.

Although the Lymphoma Research Foundation [for example] has an abundance of excellent resources, with more awareness, folks could be directed to those great resources earlier and understand that they are not alone.

Carly Stafford Dixon

Facing Cancer as an AYA and Navigating Fertility Preservation Choices

Raising Awareness for Adolescents and Young Adults with Cancer

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