The Importance of Awareness and Self-Advocacy in Multiple Myeloma

Tamara Mobley was only 33 years old when a nagging back pain led to a multiple myeloma diagnosis. As a mother of two, she initially attributed the discomfort to lifting her young son, but as the pain persisted, her search for answers revealed the diagnosis. Now, more than 16 years later, she is sharing her story to raise awareness of the subtle and often overlooked signs of this rare blood cancer.

Mobley recently sat down with CURE to reflect on her journey, highlighting the frustrations of feeling dismissed at appointments, as well as the importance of self-advocacy in the exam room.

CURE: Can you share what led you to seek medical attention for your back pain, and how that ultimately led to your myeloma diagnosis?

Mobley: I decided that it was important for me to seek some sort of medical attention because I had been experiencing back pain for quite some time. Just for a little background, I am a mother; at the time, I was 33 years old, and my boys were three and seven. I had gone to pick up my youngest son to put him in the car, and I started experiencing back pain. I just kind of chalked it up to, “I lifted him, I pulled a muscle.” However, that back pain did not go away, and that pain persisted for probably about three or four weeks, and that's when I decided that I needed to go to a doctor and figure out what might be causing this back pain.

I had gone to a couple different doctors, and they had performed X-rays, but did not see anything, and suggested that I actually do some physical therapy; I did that, but nothing got better. I continued on with my everyday life because I work full-time, I'm a mom, and the doctors don't see anything, so therefore, I just assumed that there was nothing. But it was because I had this persistent back pain that I was like, “Something's got to be wrong,” right?

Although I had gone to a couple different doctors and even an emergency room at one point, I didn't get any real response that led to the diagnosis until it got so bad that I said, “You know what? Something's not right.” It was probably that fourth visit that finally led to a diagnosis. On that visit, I just went to a local clinic, and that particular doctor, after I explained what I had been experiencing and feeling for about five or six weeks at this point, actually suggested that I go to seek medical attention at the hospital, that I go to the emergency room, and not only the emergency room, but that I go via ambulance.

From that point on, everything just was fast and furious, but it did take a couple of tries of me experiencing this back pain. By the time I'd gone to that final doctor, it wasn't just the back pain; it was passing out, tiredness, and extreme fatigue. It was the culmination of all those things that made me say, “Something's wrong. We've got to figure it out.”

Do you have any advice for women on advocating for themselves during appointments, especially if they feel dismissed or turned away?

I will say that, when I look back on things, I'm like, “You know what, I was a young woman.” I was 33, and I did not necessarily feel as empowered. You have these doctors coming in with their white coats. They are the authority. They are the ones that have gone to school for a number of years, and you just tend to trust, as we should. We should be able to trust our medical authorities, or just those that are experts in their field.

Even when they said they didn't see anything, I still felt something. I wish that I had said something like, “You don't see anything, but does that mean that there's nothing there?” I can honestly say that I did feel a little intimidated at times, because the majority of these appointments that I went to, I went by myself. The majority of those particular appointments were with White male doctors, so I didn't necessarily always feel comfortable to maybe question the information that I was being given. In hindsight, I 100% would do things a little bit differently.

Even on those terms, it's funny that during this journey, when I look back again, there were some early signs that I just did not notice, or that were brought to my attention. I had a doctor tell me, “We do see something that looks a little weird, but because of your age, it's nothing.” I went with that. If the doctor tells me, it's nothing, then it must be nothing. However, a previous doctor had told me they saw something. I wasn't experiencing any sort of symptoms; it was just a routine gynecological visit that I had gone to where my female doctor said, “Something looks odd. Let me send you to a urologist.” I go to that urologist and that urologist says, “Could be something. Could be nothing. You're 33, it's nothing.”

How did your experiences shape what you would recommend to other patients?

There were several different doctors along the path of the diagnosis. The first woman saw something saw something, and she sent me onward, but everybody subsequently saw nothing. I am thankful for that first female doctor, that first gynecologist, who put something on the radar, but things fell off. I did have a rapport with her. I did not have a rapport with the other doctors. I do believe that when we have a rapport, when we feel empowered, then I think we feel more apt to ask more questions and to dig and probe a little bit deeper.

At that time, I did not do any of the above, except trust, right? But 100% I say that you can have, you can trust, but you can also have a healthy level of skepticism along the way. And that's something that I think I would encourage patients to do. When something doesn't feel right, and go seek attention, you can trust the doctors, but if inside, something still doesn't feel right, and you know your body better than anybody, then I recommend that you continue that conversation with that doctor, or perhaps another doctor.

How has your experience with myeloma shaped the way of your health and approach your daily life now?

I would say that nowadays, I'm a lot more aware of what's happening with my body. I've learned a lot along the way. Before this diagnosis, I had never heard of multiple myeloma. Nobody around me had ever heard of multiple myeloma, and that's why I think it's super important that we have organizations and initiatives to bring forth information about myeloma and to bring awareness to it. My having this diagnosis now causes me to want to be a part of those sorts of initiatives so that I can help people not only understand but be able to speak about what's going on with their bodies and with their health.

This is something that did not exist 16 years ago when I was 33 years old. I felt like I was alone. But now I feel like this diagnosis makes me want to be on the front page, at the front of the stage, with the loudest megaphone to make other people aware of this disease.

I've always been a glass-half-full girl, and I've always been very optimistic and positive, and I continue to be that way. At the same time, I also realize how precious and fragile life can be, and how things can change overnight. Therefore, I'm prioritizing my health a lot more than I did back then.

I'm not just talking about things that appear to be normal stress. I'm not going to just set it aside as normal stress or call it normal stress. I'm going to investigate it. I now take time, like I said, just for the things that really matter most to me, and that's my family, that's my friends, and really, it's educating those closest to me about this disease. Because, like I said, at 33, 16 years ago, I had never heard of it. My friends and family had never heard of it, but today, they are aware of it because I'm always talking about it.

You can go to the websites nowadays and you can look up information, and you can find things that are not necessarily always trusted sources of information. But you know, there are several now that are trustworthy that we can look toward for good information. And that's how I live my life nowadays. I'm always looking for good information. I'm always wanting to partner with organizations that also want to bring myeloma to the forefront.

I would say that those are just some of the ways that myeloma has changed my life, or how it impacts me today, is that I'm more conscious. I just want to bring awareness. I want to help other people live healthy and fulfilled lives, and lives where they can, despite a diagnosis, continue to live and continue to go after those things that they've always wanted to achieve in their lifetime.

Transcript has been edited for clarity and conciseness.

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