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

During a recent Around the Practice^® program, Hans Hammers, MD, PhD, discussed renal cell carcinoma (RCC) with Terri Blalock, a patient who has the disease, and her caregiver and granddaughter, Kaitlin Blalock, NP. They spoke about what led to the diagnosis, how they have managed toxicities, and their positive outlook.

Hammers, a professor of internal medicine and the Eugene P. Frenkel, MD, Scholar in Clinical Medicine at the Harold C. Simmons Comprehensive Cancer Center at UT Southwestern, was joined by Linie Chi, NP, and Laura Sanza, PhD, MPAS, PA-C, a physician assistant at the Simmons Comprehensive Cancer Center.

Diagnosis

HAMMERS: What symptoms led to your diagnosis?

TERRI: In my mind, I thought it was just my age. I was fatigued and I had a little cough; I was just tired. I would sit at my desk at work and almost fall asleep sometimes. I had to get up and walk around [to stay awake]. I didn’t realize it was a lack of oxygen. I [also] had flank pain and a rough spot in my hair. I had 2 or 3 of those, but I was chalking it all up to my age.

This 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.

HAMMERS: Did you lose weight?

TERRI: I did not lose weight. I was over 200 lb when I went into the hospital. I didn’t lose weight because I was overloaded with fluid. Not realizing I had so much [fluid buildup], I just thought I [had obesity].

HAMMERS: How were you diagnosed?

TERRI: Kaitlin came into town one day to have lunch and spend the night. She noticed that I was struggling and having a hard time breathing. We did a [pulse oximeter], and [the level] was down in the 80s. She insisted I go to the [emergency department; ED] to have it checked out. [I took a] COVID test and it was negative. She insisted that they do a chest x-ray. From there they did a CT, and that’s when [the cancer] was found.

HAMMERS: The diagnosis must have been a shock.

KAITLIN: For sure. I took her [to the hospital] expecting a diagnosis of pneumonia or something like that. I never in my wildest dreams imagined it would be stage IV cancer.

I didn’t know much about RCC or kidney cancer at the time. They didn’t say RCC; they just said, "We think that the primary source is kidney cancer." That’s when I started researching to make sure we could get her in somewhere, get her the best treatment possible, [and] get a plan of care going immediately.

HAMMERS: You live in a small town; what made you decide to move to a large academic center?

KAITLIN: Immediately after she got the diagnosis, I stayed up the entire night researching different places for her to go. I came across UT Southwestern and [your practice]. I saw [that] you had publications on [RCC]. I wanted to go somewhere that was doing clinical research on kidney cancer, that was up-to-date. Unfortunately, sometimes in small towns, everything is not up-to-date. They’re not doing clinical trials. They’re not doing research. They’re not trying the latest thing. Online [I found] that the UT Southwestern clinical research team had over double the national benchmark survival rate, past 5 years. I was trying to make sure we got her somewhere that [would give] her the optimal treatment she could get.

HAMMERS: [To give a] little background, [Terri] presented with very advanced kidney cancer. Unfortunately, [she] had a large mass where the cancer came from, [it] had spread to the abdomen, and there were implants across the abdominal lining. [She] had innumerable lung nodules, so many that we couldn’t count them, which probably also contributed to [her] need for oxygen. This was a very challenging situation. [Additionally], a biopsy was performed to confirm the diagnosis.

Disease Presentation and Toxicity Management

HAMMERS: What are some typical symptoms of the disease that you observe?

SANZA: Patients can present in all sorts of ways. Most of the time, the presentation can represent the organ systems involved; [for example, a patient could have] shortness of breath, a cough, and [a] new oxygen requirement because of disease in the lung. Patients can present with pain when they have metastatic disease to the bone. They can present with confusion, altered mental status, and even seizures if there is disease in the brain. They can present with neurological deficits if the spinal cord is involved. They can present with physiological changes, weight loss, decreased appetite, and fatigue.

Sometimes patients can present without any symptoms, and a renal mass or metastatic disease is found incidentally because of imaging or work-up for something unrelated. A wide variety of symptoms [can occur], and often they could be symptoms that don’t make someone think of cancer.

HAMMERS: When we first met, I discussed the dire need for treatment based on Terri’s condition.

KAITLIN: You discussed the different treatment options for patients who have kidney cancer. [Because] she was in such dire need of quick treatment, you suggested she receive both oral chemotherapy and immunotherapy.

You went over the adverse effects [AEs], 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 bad headache and it feels abnormal, please make sure that you call us. If you’re having a lot of diarrhea, can’t eat, vomiting, all those things, make sure that you reach out to the staff and let them know that you’re having these complications and these AEs."

HAMMERS: There are 2 major approa-ches when we treat kidney cancer. One approach is the most mature one, it’s the oldest one, [the one for which] we have the most follow-up. It’s the combination of 2 immunotherapy drugs. There is no pill involved. We hope it finds the cancer and goes after the cancer. It can eliminate cancer cells, and it works in roughly 40% of patients with regard to significant shrinkage of the tumors. The advantage is, you don’t have the AEs [you’d get] from pills. It’s just immunotherapy, but the drawback is that the chance of autoimmune AEs, [in which] your own immune system attacks you, is increased vs other regimens. [There is also an] initial chance [of no] response because you just focus on immunotherapy and not the other treatment approaches for kidney cancer. There is a roughly 20% chance that the cancer just progresses right through it. How should we approach patient education?

SANZA: First, I reassure them that this is not the only time we’ll go through all this. I reassure them that, on every visit we need to revisit how often they’ll get treated, how often they’ll get scanned, and what AEs to look out for. Then I go into some detail, whether it’s talking about immune therapy or about targeting therapy. If they are going to receive immune therapy, I spend a good deal of time explaining that. Because we are turning on the immune system to fight the cancer, there is the potential that the immune system can also fight other organs in the body, which we don’t want. We don’t know to whom this will happen. It doesn’t have to happen [for the treatment] to be effective, so I don’t want them to hope it happens, [thinking] that [treatment] would then be more effective. I list every possible organ that can become inflamed, and what that might look like.

No matter how little, no matter how big, they should feel comfortable reporting [their AEs]. I reassure them that no amount of reporting would be considered excessive. We don’t keep count of how many MyChart [messages are sent]. We’ll judge if it’s worrisome, hold the course [of treatment], or if it’s concerning, [we’ll ask them to] come in. I review with them the different ways of communicating, and the utmost importance of communicating. They can call directly and speak to a triage nurse. They can request to be seen in our acute care clinic, where we treat new onset symptoms of anyone undergoing treatment with the hope of avoiding them having to go to the [ED]. Most of the time, we can address the symptoms and stabilize them so that they never have to go to the [ED].

HAMMERS: What concerns did you have when you heard the list of potential AEs?

KAITLIN: When she was diagnosed, I thought, "We need to hurry up and get her treatment quickly." Hearing about the AEs, and the possible complications, does make you pull back a little bit and feel overwhelmed. It was important I knew, as a caregiver, and [because she was] slightly confused, that I needed to make sure [we reported] any AEs in a timely manner. I knew she was not able to [do so] at that point. I also knew [that] if we did nothing, she would be dead. At that point, I was trying to hurry up and get the immunotherapy going so that we stood a chance of helping her improve. I never imagined she would be where she is today. [She’s] living by herself and can care for herself. She can bathe herself, get her own food again, and she’s no longer oxygen dependent. The medication helped tremendously.

HAMMERS: Some caregivers prefer to make the patient comfortable rather than begin intense treatment. Did you ever feel that way?

KAITLIN: It did cross my mind, but my grandmother raised me, and I was not ready to let her go. I think, for selfish reasons, I was pushing her to seek treatment, and I did sit down and have a conversation with her. We discussed [it]: Do you want treatment, or do you want me to call hospice and we go home and keep you comfortable? She said "No, I still want to live. I still want to try this. I want to fight this." When she told me that, I was like, "We’re doing this." Half the battle is mentality.

HAMMERS: Can you discuss some of the AEs you’ve experienced?

TERRI: I do have some AEs, but they’re nothing major. It’s mostly joint pain, but I don’t have diarrhea or constipation; I’m very fortunate. We deal with it, and I come off the chemotherapy probably every 3 to 4 months; I’ll take a week off because I feel overloaded. That helps quite a bit.

I do my lenvatinib [Lenvima] 5 days on and 2 days off because doing the 7 days was just too much. We did consult with [Dr Hammers] on it; we didn’t just jump in there on our own, and [Kaitlin] can usually tell when I’m getting overloaded and need a real break.

KAITLIN: She’s [also] had diarrhea every now and then. It doesn’t last for more than a couple of episodes, even though she doesn’t talk about it. The other thing that she’s had [is] uncontrolled high blood pressure, so we see a cardiologist. They tweak her medication; she’ll be good for a month or so, and then it shoots back up again. She also had to start levothyroxine because she developed hyperthyroidism as an AE, but when she needs to take breaks, it’s mainly [owing to] the fact that [her joints] hurt.

Closing Remarks

HAMMERS: What other supportive measures are used for patients during treatment?

SANZA: Cancer care has become multidisciplinary. It takes a village, and we work on building a rather large village. The cancer treatment itself might not just [involve] oncologists, such as our team giving drugs, but could [also involve] radiation oncologists and surgeons. Then, [additional] support [comes from] the doctors that help with symptoms. [For example, a patient might] see a rheumatologist if they develop autoimmune AEs, a cardiologist for blood pressure and cardiac issues that result directly from our treatment, or a dermatologist if they have rashes that can’t be controlled.

We [also] have oncology social workers associated with the cancer clinic, and they’re experts in talking with the patient and their families and learning what equipment they might need to facilitate getting around the house [and] living independently. [They help them with] how to get back and forth to appointments, who to speak to if there are financial [concerns], and who to speak to if there are psychosocial issues. We also have a very important team in the cancer clinic called the palliative care team, a group of doctors trained in overall symptom management. They do a great job of managing not just pain but also nausea, vomiting, appetite [loss], breathing, diarrhea, [and] constipation, and not only do they address individual symptoms, they look at the patient as a whole and prescribe medications that don’t interact [with the treatment itself].

We have physical therapists, occupational therapists, home health [care aides], and recently we started [making] referrals to music therapy. We’re growing the support systems available, and I hope that we continue to do that.

HAMMERS: What message might we have for others undergoing treatment or for their caregivers?

CHI: [For caregivers], I would say it’s teamwork. When [a patient] comes in, it’s [critical to] build that relationship. It’s a definitive thing; no one wants to be in the cancer center, but I find it’s easier long term when you get to know them, [and not] just on the cancer level. You may get to know [their] grandkids, and then the small things you ask [may have them] cracking a smile once in a while, and it ends up being worth it in the end.

I would tell the patients that no question is stupid; as I’ve heard it all before, [and] there’s an answer for all classes of questions. There are always answers if you ask, and we’re always here to help.