What Is a Kidney Cancer Care Plan?

If you’re on the other side of surgery (and maybe radiation and chemo, too), here's what can you expect from future medical monitoring, lifestyle changes, and more.

by Megan McMorris Health Writer

Your kidney cancer treatment is in the rearview mirror—and cheers to you for that! Now you’re ready to begin the next step: a kidney cancer care plan. What’s that, you ask? It’s a customized strategy (a.k.a., a survivorship plan) that is created with all of your particulars in mind.

The concept of creating care plans—for all types of cancer—first emerged in 2006, when the Institute of Medicine (IOM) published a report recommending that every cancer patient receive detailed guidance for staying as healthy as possible as they move into the post-treatment phase of life. Today, 60% of survivors treated at university-based cancer centers receive such a plan, according to a 2020 study published in Frontiers in Oncology, with 53% being given one after being treated at multiple locations.

Prior to this trend, cancer survivors did not receive much in the way of medical direction after surgery, radiation, or other treatments, with little support for any potential health issues, including psychological problems, which might arise down the road, says Rosalind Guest, A.R.N.P., of Baptist Health’s Miami Cancer Institute, where she specializes in creating care plans. “Patients would often feel quite lost after their cancer treatment ended, in terms of what kind of follow-up to expect, and who was going to coordinate their care,” she explains.

Today, hospitals and cancer centers across the country provide comprehensive strategies to monitor and maintain the physical and emotional health of an ever-growing number of cancer survivors (kidney as well as other kinds) as they move past ablation, chemo, immunotherapy, and adjuvant therapy (to name a few treatment categories). “The care plan is meant to be an all-encompassing document,” says Guest. “I think patients find it helpful and reassuring that all of their information is in one place. It also helps their care team to be better coordinated.”

If you’ve battled kidney cancer and are ready to take some positive next steps, here’s what to look for in your customized plan.

What to Expect From Your Care Plan

All kidney cancer plans are definitely not alike—they depend on your cancer diagnosis and staging, factors like your age and genetic makeup, and your individual circumstances and lifestyle considerations—but, in general, a KC plan includes the following components:

An Essential Overview

Did you have renal cell carcinoma, the most common type of kidney cancer, which develops in the proximal renal tubules that make up the kidney’s filtration system? Or did you fight a type affecting far fewer folks with this disease, maybe urothelial carcinoma (affecting just 5% to 10% of all people with kidney cancer), or even a sarcoma of the kidney, which develops in the soft tissue of the kidney, and is exceedingly rare?

Whichever type you’ve survived (and we’re so cheering you on), you were likely bombarded with info about your condition as you battled it. So much swirling minutia, in fact, it’s hard to keep track of it all—especially when you’re focused on the important issues right now, like how well you’re feeling today. So, getting a medical pro to do a big picture, overall assessment of your KC experience can be helpful—and you may use it like a medical crib sheet in the months and years ahead.

“You’d be surprised, sometimes patients come to us without a clear understanding of what stage their cancer is in," explains Guest. "We can help fill in any knowledge gaps early on so we have the most comprehensive report.”

Examples of this might be the dates of your initial diagnosis and first biopsy, the stage and histology of your kidney cancer; whether or not you had surgery, chemo, radiation, and/or immunotherapy (with accompanying schedules for these treatments); and whether you’ve undergone genetic testing or not.

Details, Details, Details

Now, onto the specifics. While you may consider yourself a mini-expert on kidney cancer by now, a lot can get lost in the shuffle. And that’s not surprising, given the road you’ve just traveled. Having a comprehensive list of the exact names of your medications and specific dates of your treatments and therapies in one centralized place can actually help your medical team understand (and even prepare you for) potential side effects down the line.

“Cancer treatment can be quite complex, and it’s very difficult for patients to always remember what treatments they’ve had done, or prescriptions they’ve been given,” says Alicia Huff Vinyard, D.O., associate professor of surgery at Augusta University Medical Center/Georgia Cancer Center. “Even though it’s not an official medical record, it’s a tangible copy of [a patient’s] treatment summary. So, no matter where you go, you’ll always have a document that you can physically hand to your new physician.”

For early-stage kidney cancer, “the treatment is typically surgery,” says Guest, meaning your list of medications, during treatment and going forward, may be minimal. However, “if it’s metastatic, then we’d include specifics on chemo [drugs] and radiation [therapies], how many cycles you received, dose reduction plans … every last detail,” she adds.

A Guide for Healthy Living

High blood pressure, smoking, and obesity put kidney cancer survivors at higher risk for recurrence, says Guest—and we know you don’t want that. That means how you live your life, including the daily choices you make, can have an outsized impact on your future health.

“This is particularly important going forward from a preventive standpoint, for those who have undergone partial or full removal of a kidney, to decrease risk of getting cancer on your remaining functioning kidney,” Guest says.

Your personalized plan will also include recommendations for lifestyle modifications, including diet and exercise. This could include reduced post-surgery activity to prevent a hernia, says Jorge Caso, M.D., oncologic urologist at the Baptist Health’s Miami Cancer Institute. “You shouldn’t lift anything greater than a gallon of milk in each hand for four to six weeks,” he says. Your doctor will also advise you to avoid aerobic exercise for the few several weeks due to risk of rupture and bleeding. “After that initial time period, however, any exercise is allowable, just start at 50 percent of your usual, and gradually increase it,” he advises.

As for specific dietary recommendations, it depends on whether your kidney function is affected, Dr. Caso says. “The question about which foods to avoid can be controversial. For patients who have recovered completely and have normal kidney function, I don’t generally recommend any restrictions in their post-surgical diet.” According to the American Cancer Society, kidney cancer patients should drink plenty of water and limit sodium and alcohol.

Active Surveillance

A vital part of your after-care is what Dr. Vinyard calls a “surveillance” plan. Translation: when to expect you’ll need to have follow-up doctor appointments, with various test done to monitor your progress.

“It’s where we outline how often [you] should be seeing a physician and scheduling other imaging tests,” explains Dr. Vinyard. “It helps patients have a clear understanding of what the next steps are, and what’s important as far as their ongoing treatment plan.” (It also helps to get follow-up appointments on the calendar, so you can plan the rest of your life accordingly.)

The most common follow-up tests are magnetic resonance imagining (MRI) and chest scans, adds Dr. Caso. “We’ll also monitor for worsening kidney function, evaluate incisions for healing and hernias, recommend lifestyle changes to decrease risks, and otherwise try to get a general picture of how [you] are doing and functioning,” he adds.

Preparing for Possible Side Effects

If you’ve had kidney cancer surgery, your survivorship plan may entail aspects about possible pain management as your body heals. There can also be unexpected—and sometimes long-term—physical and emotional side effects from surgical or other types of kidney cancer treatments.

“The [care] form has an educational component, too, because we want people to be aware of potential long-term issues that they may not even realize are associated with their cancer or treatment ,” explains Dr. Vinyard. “It’s a way to say, hey, here are things you should keep an eye out for, and if it starts affecting your daily life, we need to get you to the right specialist, and here’s who you can call.”

Connecting With the Kidney Cancer Community

You’ve been through a lot. And you might benefit from meeting like-minded kidney cancer survivors who can help you through the emotional aspects of this journey (including fear of recurrence, depression, and anxiety). Which is why your kidney cancer plan might include info on the American Cancer Society and the Kidney Cancer Association, for example, which both have online support groups.

And, you might be surprised to learn that there are loads of people out there with a shared experienced. That’s because the outlook is brighter than ever for beating kidney cancer (and many other types of cancer, too).

So talk to your doctor about developing your own unique strategy for moving forward. “A cancer survivorship plan is like an extra layer of support for patients as they navigate life after cancer diagnosis and treatment, helping them with next steps for living a long, healthy life after they are cancer-free,” says Guest.

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Megan McMorris