Expert and patient perspectives on the communication that occurs leading up to and following a diagnosis of renal cell carcinoma.
Hans Hammers, MD, PhD: Kaitlin, how was that from your perspective, being admitted and then the work-up and the initial few days in the hospital?
Kaitlin Blalock, NP: We didn’t get a lot of sleep. There were people constantly in and out, blood draws, testing, imaging, and several different series of physicians coming in and out. It was such a shock to us. Our whole world got flipped upside down because she was literally sitting at her desk at work one day, and then the next day she’s in the hospital bed, and she can’t even remember what’s going on, or who she is. She couldn’t take care of herself. She couldn’t walk to the bathroom by herself anymore. She needed assistance with everything. It was a complete change in such a short amount of time. It was very overwhelming emotionally for both of us. Everyone was great at the hospital, and they answered all of our questions. I’m not the easiest person to be a caregiver because I ask so many questions. I am like, “Hey, we’ve got to get this going.” I know it takes time with other patients, they may come into your clinic, and you have time to wait. But because of her innumerable lung nodules, I was worried because she needed oxygen. She couldn’t get up without becoming short of breath. Everything happened so rapidly. They also said she had a lot of fluid on her lungs, and they were giving her a diuretic to help pull some of that fluid off as well.
Hans Hammers, MD, PhD: There's no doubt about it, your presentation was an extreme one. I only see kidney cancer, but I see presentations like that maybe once or twice a year. It’s very unusual. This is not the most common way. When we see patients for the very first time, we as clinicians try to put you into a little box. A fairly common presentation of patients with recurrent kidney cancer, or kidney cancer that has spread, that I would see is often patients who had the original kidney tumor removed. That was the only evidence of disease at the time, and then they recur often years later. Those are patients who often have symptoms. We find them on scans, these recurrences, little lung nodules, for example, where patients don’t feel anything. These are good-risk patients. They have a very different biology. The most common group of patients is also one where most of the time, we remove the tumor, recurrence is within a year, there is need for treatment within a year, maybe some laboratory abnormalities. We call them intermediate risk, and that’s 75% of patients.
Then there’s a small sliver of patients like you, who presented with overt metastatic disease the first time they were diagnosed, with a need for therapy right now. There’s a group of risk factors that we look at, such as low red blood cell count, that’s something you had, along with an elevated white blood cell count, which is something you had. In terms of platelet count, yours was normal initially. We look at other markers such as calcium and performance status, meaning how fit are you. You were in dire straits. You were bound to the bed, had to stay on oxygen, and had the need for immediate therapy, or therapy within 1 year. You had several of these factors, and that made you essentially what we call poor risk. In times prior to these, where we now have some very effective initial treatment options, the prognosis was measured in months for those patients. You have clearly jumped out of that box very nicely. You’re doing well, but it’s very clear that we were all worried. Kaitlin, with good clinical acumen as a health care professional, was rightly so worried. She did absolutely the right thing as an advocate for you by pushing the system, making sure things are being done, and starting you on therapy. Do you remember the very first conversation? How was that for you guys?
Kaitlin Blalock, NP: I was there. You had told me you happened to be the person who was on call, picking up the hospital patients. You came in and told us that [her disease was considered] poor risk, and why it was poor risk. Then you discussed the different treatment options for patients who have kidney cancer. You stated that because she was in such dire need of treatment quickly, you suggested that she did both the oral chemotherapy and the immunotherapy.
Hans Hammers, MD, PhD: Do you remember any of the discussion on the adverse effects, or anything like that?
Kaitlin Blalock, NP: Yes. You went over the adverse effects, which were scary. I wrote down a list and took notes because you said, if this happens, you need to call us. If you have a really bad headache and it feels abnormal, please make sure you call us. If you’re having a lot of diarrhea, can’t eat, are vomiting, or all of those things, you said to make sure you reach out to the staff, and let them know you’re having these complications and adverse effects.
Hans Hammers, MD, PhD: Very good. Laura can sing a song of that too, and she will mention some more of the adverse effects and management. I am so grateful when for the very first discussion, the support system is present, because it is a lot of information up front. In your particular case, Ms. Blalock, you weren’t feeling well. You wouldn’t have remembered even 2 sentences of what I probably said about these adverse effects. You were in dire straits, you were seriously ill. So, it was helpful to have family there. In fact, in this case, it was super helpful that you had a medically educated support system. It was the best case scenario, if you will, to engage with anything challenging like this.
Transcript edited for clarity.