A cancer diagnosis is a pivotal moment in a person’s lifetime.
From that point forward, it’s a part of who you are. It shapes how you think about the world—through the lens of your diagnosis and what’s important to you.
In fact, sometimes it’s important to talk to others who have experienced (or are experiencing) something similar. A shared "thing" that can help you frame your own perspective.
It’s so important that we’ve not only created patient resources around it (like the LLS Community), but internal resources as well such as our Employee Resource Groups (ERG) and the Working With Cancer Pledge.
Our team at The Leukemia & Lymphoma Society (LLS) is made up of a diverse spectrum of backgrounds and experiences for us to better understand, advocate on behalf of, guide, and support our blood cancer community—including many blood cancer survivors.
Their experiences and perspectives add depth and an overall sensitivity to our organization, as well as a personal urgency for change... why our work is important.
We asked a few of them—specifically members of our Cancer Network ERG—if they would share some of their experiences as survivors: things they wished they had known, lessons learned, or their thoughts on what might be helpful for someone newly diagnosed.
Maybe some of these things can help you, too.
Meet our incredible contributors:
Joan (top left), Director, Advancement Operations, diffuse large B-cell lymphoma survivor, aggressive non-Hodgkin lymphoma
Stephanie (top right), Manager, Business Analysis, primary mediastinal large B-cell lymphoma and smoldering myeloma survivor
Stacey (bottom left), Manager, Analytics and Reporting, acute lymphocytic leukemia survivor
Katie (bottom right), Manager, Campaign Development, primary mediastinal B-cell lymphoma survivor
Thing #1 – Hindsight is Insight
While no two experiences are the same, everyone can use some insight about coping with blood cancer at different stages—especially from other survivors. Here’s what our LLS-employed survivors wished they had known.
Joan: Honestly, I wish I had known about LLS’s Information Specialists. I spent a lot of time reviewing educational materials like the Survivorship Workbook, podcasts, webinars, blood cancer conferences, books, and support groups—but I didn’t know, until I started with LLS, about the wealth of free information, resources, and support LLS Information Specialists personally offer patients, families, and caregivers.
Stacey: I wish I had known at the age of 12 that I could trust my doctors when they told me that I was going to be okay. My prognosis was good from the start, but it was a grueling two and a half years. I saw others being treated alongside me whose treatment wasn’t successful. I wish I had known that, despite it all, I would have the opportunity to have a (new) normal life again, including having a family and a career in helping others facing the same difficulties.
Katie: I wish I knew at the time that cancer is never really “over.” There is a new normal that I have had to adjust to. My experience with cancer has changed me as a person, and I didn’t really understand how life-altering this experience would be. I’m about seven years out from my treatment, but I still deal with the aftermath on a regular basis.
Thing #2 – Insight is Foresight
After you’ve been diagnosed with blood cancer, there’s a lot to learn. It can feel overwhelming and isolating in many ways. Here’s a little of what our group learned and can offer you in preparation for your experience.
Joan: While I was getting treatment, I became a member of LLS’s online patient community—that was such a great support. I was one of only two patients at my cancer center with a double-implanted port, but online at LLS, I found other people going through the same chemo as I was at about the same time. It was great to connect with them to feel less alone and, in turn, let me bring hope and encouragement to others newly diagnosed.
Stephanie: Having someone take notes during discussions with my treatment team was really valuable. I could not comprehend the treatment that was to come when I was first diagnosed, as it transpired so quickly. My notes ensured that I was fully aware and informed because they allowed me to research and compile additional questions at home. That gave me greater comfort throughout my treatment.
Stacey: My family had a mantra while I was going through treatment: “one day at a time.” From the day I was diagnosed, I was so young and it was just all very overwhelming. So, we had a rule that we would just get through that day.
Katie: In my experience, there was not a lot of focus on my mental health while I was going through treatment. So, after treatment, I felt like I was kind of left to pick up the pieces on my own. I’ve learned to check in on my mental health, lean on my support system, and know that I can do hard things.
Thing #3 – Foresight Brings Hope
One of the reasons our LLS survivors were eager to relay their experiences is that they relate to where you are. They know the anxiety, exhaustion, and pain and, despite it all, they’re here! And here is what they want to tell you:
Joan: I don’t recommend searching the web for information. But I did and saw that the survival prospects for my cancer were termed “poor” in some articles and that the median survival was 22 months in others. My care team mentioned right away that advances in blood cancer treatment were happening rapidly, so things I saw might be out of date. That was definitely true of “double hit” lymphoma. I really want people newly diagnosed to know that they are not alone, and there is hope!
Stephanie: Please advocate for yourself during treatment. If something feels off, speak up. If you do not feel comfortable with your team or proposed treatment, get a second opinion. There are some amazing facilities out there that are working miracles!
Stacey: To anyone just starting—there’s so much information, so many choices, medications to take, procedures to get through. Just take it one day at a time, or even one hour, or minute if you have to.
Katie: I was understandably very scared when I was first diagnosed. If I could go back and tell something to my just diagnosed self, I would say “take care of yourself—be kind to your mind and your body.”
We can’t end without sharing our thanks to Joan, Stephanie, Stacey, and Katie who openly shared their personal experiences and thoughts with us. Their perspectives as survivors help each of us at LLS do our life-changing work—and they hope, by telling a little of their stories, to help even more people like you along the way.