Zita Lim, PA-C, is a board-certified physician assistant at the M.D. Anderson Cancer Center in Houston, TX, specializing in treating metastatic kidney cancer and a member of the KCA’s Clinical Advisory Board. KCA Ambassador Annamarya Scaccia, who was diagnosed with chromophobe renal cell carcinoma in 2020, spoke with Lim about navigating survivorship—from what being a survivor means to taking care of all aspects of your health.
Annamarya Scaccia: Let’s talk terminology. Medically, when is someone considered a survivor?
Zita Lim: I personally like to use the term survivor the same way that the American Cancer Society uses it—namely to describe someone during any point of their cancer journey.
AS: I know for myself, and other people affected by kidney cancer, calling ourselves “survivors” can feel disingenuous because we did not undergo chemotherapy for treatment. How can we process these feelings to better understand our own survivorship journeys?
ZL: I don’t think that it is disingenuous because what everyone here shares is that moment of being initially delivered the dreaded news that they were diagnosed with cancer and having to now grapple with the sense of the unknown of the “what’s next,” which for many people is often the scariest part of the journey. I often see patients feeling more relieved, even after they are diagnosed with stage 4 kidney cancer. Once they have a game plan and establish a routine, they do better than in the initial weeks of the diagnosis, when every step of the journey is new and intimidating.
AS: How does care change once treatment is over and someone is considered in remission?
ZL: There can be different definitions of remission. Some define remission when there is no evidence of cancer, and someone has completed therapy, while others call remission a time when one still has cancer but it is inactive. Some patients may still be taking treatments to keep their cancers in remission.
AS: To that end, what can survivors do to manage their anxiety over surveillance scans? Over their cancer returning?
ZL: First of all, know that “scanxiety” is real and you are not alone. Many patients tell me that they develop all sorts of ghost pains and discomforts several weeks before their scans. The mind is very powerful, and one can often start to notice aches and pains that normally you would shrug off. Having said that, please do let your providers know if you develop a pain that is indeed more persistent, more intense, or sharper than usual. Generally, the further you get away from the diagnosis, the less likely it is that the cancer is to recur. We have algorithms in place to determine the frequency of recommended scans. However, your scan schedules are not written in stone and can be moved up if necessary.
AS: What can loved ones to do support survivors in recovery and throughout their post-treatment journey?
ZL: This is probably a very individualized answer. Some survivors feel the need to talk about their experience while others do not want to be reminded of it. I think this is where we have to be good dance partners and follow their lead. It is not unusual that your loved one may act very different with you than with others. I have often heard caregivers complain to me that their survivor is always too nice and outgoing to others, but at home, they can be angry even mean to their caregiver. It is not excusable, but I think that it comes from a place where they know that they may have pent-up anger at the cancer and the situation it brings, and they may take it out at the one person that they actually feel safest around. In that case, they may need to be referred to a counselor.
AS: What are some ways survivors can manage and improve their health following treatment?
ZL: It helps to focus on our physical and emotional well-being. Eating healthy, meet with a nutritionist for advice on how to maintain long-term healthy eating habits, maintain a healthy weight. Exercise regularly to include 150 minutes per week of moderate intensity aerobic or 75 minutes per week of vigorous aerobic activity. Add moderate muscle strengthening activity twice a week. Try to avoid stressful situations, incorporate mindfulness or reflection into one’s daily routine, or try yoga/Tai Chi. Find time to spend with family and friends who bring you positivity and joy. Find hobbies that relax us. Volunteer for organizations that you find to be meaningful.
AS: One concern I hear frequently from survivors is what to do about nutrition. What are some general rules for kidney cancer survivors to keep in mind about their daily diet?
ZL: Our nutritionists generally counsel our survivors to have a plate that looks like a “rainbow”. By that, they mean that they are getting most of their vitamins and minerals from their diet, and it is reflected by the differently colored foods. We also want to make sure that they are getting enough protein in their diet. Another common question is about sugar. Of course, we don’t want anyone doing the donut diet, but on the flip side, I have had some loved ones deny their cancer survivors cake on their birthdays for fear that it would cause their cancer to grow. Our approach is one of balance and moderation with an emphasis on fresh, non-processed foods.
AS: Same with fitness. How may working out change for kidney cancer survivors who’ve had a partial or radical nephrectomy?
ZL: The most important piece of advice for this group of patients is HYDRATION, HYDRATION, HYDRATION!
AS: Fertility is another subject that is often talked in survivorship. For kidney cancer survivors, how is fertility impacted?
ZL: Fertility may be impacted by the need for prior treatment that could result a woman going into early menopause.
AS: What are some rules or risks to keep in mind if they are considering pregnancy? Do these differ if someone has had a partial nephrectomy versus having the whole affected kidney removed?
ZL: Ideally, I would recommend discussing the pregnancy with one’s OB/Gyn before becoming pregnant so that they can make sure that all your lab values are optimized before the pregnancy ensues. Once the pregnancy takes place, the patient may also need be under the care of a maternal-fetal specialist, a perinatologist who has undergone specialized training to manage high risk pregnancies. Potentially, these expectant mothers may have reduced kidney function, proteinuria and hypertension at the onset of their pregnancies that would need to be very carefully monitored.
AS: What is one piece of parting advice you would give kidney cancer survivors?
ZL: Having been diagnosed with cancer has already taught you to live each day to its fullest, to appreciate all your friends and family, to know that you are stronger than you ever realized. So just keep doing all those things that got you to where you are today and share that life wisdom with those who are new to this cancer journey.
This interview was edited for clarity and length. Annamarya Scaccia is a writer, fitness expert, and kidney cancer survivor. Follow her on Instagram @stillwellfitness.