Receiving a Diagnosis of RCC: Patient and Caregiver Perspectives

EP: 1.An Expert Overview of Renal Cell Carcinoma

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EP: 2.Receiving a Diagnosis of RCC: Patient and Caregiver Perspectives

EP: 3.Healthcare Professional Perspectives on Diagnosing RCC

EP: 4.Communicating a Diagnosis of RCC to Patients

EP: 5.Renal Cell Carcinoma: Expert Perspectives on Treatment Selection

EP: 6.Treatment for RCC: Educating Patients on Followup and Adverse Events

EP: 7.Treatment Decision Making in RCC: Patient and Caregiver Perspectives

EP: 8.Managing Adverse Events While on Treatment for Renal Cell Carcinoma

EP: 9.Support Networks for Patients With Renal Cell Carcinoma

EP: 10.The Evolving Landscape of Renal Cell Carcinoma Management

EP: 11.Renal Cell Carcinoma: Practical Advice for Patients, Caregivers, and Physicians

EP: 12.Recap: From RCC Diagnosis to Treatment, Toxicity Management, and Beyond

Transcript:

Hans Hammers, MD, PhD: Terri, I thought I would start with you. Why don’t you tell us about the time when you were diagnosed with kidney cancer. What kind of symptoms did you experience? What was going on with you?

Terri Blalock: I thought in my mind that it was just my age because I was fatigued. I had a little cough, and I was just tired. I would sit at my desk at work, and I would almost fall sleep sometimes. I would have to get up and walk around. I didn’t realize that was lack of oxygen. I had flank pain. Oddly enough, I had sores on my head. They weren’t actually sores, but there were 2 or 3 raw spots in my hair. But I was chalking it all up to my age. I did COVID-19 tests and they were negative.

Hans Hammers, MD, PhD: How long was it going on before it became more?

Terri Blalock: I’m going to say it went on for about 8 or 9 months. When I would come home from work, I would do nothing but sit in a recliner and doze off. I was so tired. Like I said, I attributed it to age because I’m not a young person.

Hans Hammers, MD, PhD: Did you lose weight?

Terri Blalock: I did not lose weight. I was over 200 lb when I went into the hospital. I did lose weight [then] because I was overloaded with fluid, not realizing I had so much blood. I just thought that I was obese.

Hans Hammers, MD, PhD: Did you have swollen legs with that fluid?

Terri Blalock: I can’t say because I didn’t pay any attention to it.

Hans Hammers, MD, PhD: How did the doctors find kidney cancer? You said you went to the hospital. What happened?

Terri Blalock: Kaitlin had come into town that day to have lunch and spend the night. She noticed that I was struggling, having a hard time breathing. She insisted that I go to the ED [emergency department] to have it checked out. They did a flu test and a COVID-19 test, which were both negative. She insisted that they do a chest x-ray. Then from there they did a CT, and that’s when it was found.

Hans Hammers, MD, PhD: Kaitlin, you are not only her caregiver, but you’re also a medical-educated professional. You’re a nurse practitioner, right?

Kaitlin Blalock, NP: Yes, I’m a nurse practitioner.

Hans Hammers, MD, PhD: How was that from your perspective? You must have seen some of these things coming. How was it when you saw her that night?

Kaitlin Blalock, NP: She had been complaining of having the back pain for a little while, but she kept calling it her sciatic nerve. I was like, we need to tell your primary [care physician] so that we can set you up with someone if you need to have an MRI, or imaging. But unfortunately, she didn’t do that. I went and visited her at her place of work. When I walked in, I noticed she was very pale and gray looking. She was breathing very fast and kept coughing. I knew something was wrong, and this was when COVID-19 was rampant. It was everywhere again, at this time. I was like, let’s check your vital signs and see how you are because you don’t look good. That’s when we noticed that her [blood oxygen level] was 86%. I was like, I think something’s going on with you.

We took her to the ED, and they did a COVID-19 test and a flu test. They said she probably just had some type of upper respiratory infection. I pretty much begged the physician there, I was like, “Can we please do a chest x-ray, just to make sure that’s what’s going on?” I had a very strange feeling. They did the chest x-ray, and then the technician came back in and he drew her blood, and then they took her for a CT scan. They told me they were doing a CT scan of her chest with angiography. I thought maybe they think she has a blood clot. They took her to do that. Then once they came in, they told us that it looked like she had metastatic cancer and that it was in both lungs. They thought the primary source was in the kidney.

Hans Hammers, MD, PhD:That must have been such a shock to hear.

Kaitlin Blalock, NP: For sure. I took her in expecting a diagnosis of pneumonia or something like that. Never in my wildest dreams would I have imagined that it would be stage IV cancer. I didn’t know much about renal cell carcinoma, or kidney cancer, at the time. They didn’t say renal cell, they just said we think the primary source is kidney cancer. That’s when I went and started researching to make sure we could get her in somewhere and get her the best treatment possible so that we could get a plan of care going immediately.

Hans Hammers, MD, PhD: You said you were in a small [town], you get this horrific news. How did you decide to go to a larger academic center? How did that happen? How did you pull that off?

Kaitlin Blalock, NP: Immediately after she got diagnosed, I stayed up the entire night researching different places for her to go. I came across UT [University of Texas] Southwestern [Medical Center] and I came across your name, Dr Hammers. I saw you had publications on it. I wanted her to go somewhere that was doing clinical research on kidney cancer and somewhere that was up to date. Unfortunately, sometimes in small towns everything is not up to date. They’re not doing clinical trials, or research. They’re not trying the new and latest thing. Online it had stated that the UT Southwestern clinical research team had over double the national benchmark of survival rate, past 5 years. I was trying to make sure we got her somewhere that was giving her the most optimal treatment she could possibly get.

Hans Hammers, MD, PhD:Terri, how was that for you? This must have been such a shock. What happened?

Terri Blalock: It was a very big shock. I do have family members who have had cancer, but it was breast, pancreatic, and colon. I never dreamed that it would be kidney and lung cancer. I always figured I would have breast cancer because my grandmother had breast cancer, but I do stay up to date on my mammograms. One of their first questions to me was, “Do you smoke?” I have never smoked. I was shocked, but I told Kaitlin that night, I said I will beat this. I’m going to beat it. It’s been a year now.

Hans Hammers, MD, PhD: How did you then get to UT Southwestern?

Kaitlin Blalock, NP: I live in Dallas. I took her to my house that weekend, and thankfully I did because at the previous ED, they told us that her hemoglobin was low and she needed a blood transfusion. That next day, we got her a blood transfusion. Later that night, she started having bad shortness of breath. She was having to sit up, she couldn’t lie down, she was breathing much faster than she was before. I feel like the blood almost overloaded her with the fluid because they gave her a bit of fluid as well. She started having a lot of shortness of breath. In order for her to get to UT Southwestern, I put her in my car, and I took her immediately to the ED. They ended up admitting her because she was critical at that time.

Hans Hammers, MD, PhD: Then you had all kinds of studies done. Again, you were imaged, back and forth. You also had some mental status changes. Do you remember anything of that? Maybe more confusion or anything?

Terri Blalock: I do not remember it. There’s a lot of the hospital stay that I do not remember. Kaitlin knows more than I do because she was with me almost 24/7. I turned everything over to her. I’d say I really don’t remember it.

Transcript edited for clarity.