Understanding Kidney Cancer
- Katie Coleman was diagnosed with metastatic kidney cancer that spread to her liver at age 29. Now, 33, she’s inspiring others with her memoir “Too Young For Cancer” as she’s recounted not getting a diagnosis for months as doctors didn’t take her “seriously.” She currently has no sign of active cancer.
- Kidney cancer develops when cells in the kidneys, a pair of bean-shaped organs each about the size of a fist, begin to grow out of control.
- Renal cell carcinoma is the most common type of kidney cancer, and the type Katie Coleman was diagnosed with. About 9 out of 10 kidney cancers are RCCs.
- When it comes to your health, be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward. From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work.
The happily married cancer advocate, who often takes to social media to share updates on her cancer journey, published her memoir titled “Too Young for Cancer: One Woman’s Battle for a Diagnosis and a Fighting Chance” this week.
Read MoreView this post on Instagram
Once she received her diagnosis, Coleman admitted she was relieved to find a doctor who “believed her and seemed to genuinely care.”
She explained, “It felt like I finally had an answer to why I’d been feeling off, and it wasn’t all in my head. I wasn’t surprised to hear something was wrong because I had known something was wrong; I just hadn’t gotten anyone to take me seriously.
‘But now we had undeniable proof, and for the first time, I was sitting across from a doctor who believed me and seemed to care genuinely. I knew this wouldn’t be an easy road, but at least I no longer had to travel it alone.”
RELATED: Can You Survive a Stage 4 Cancer Diagnosis? An Experts Weighs In
Coleman excitedly shared a photo of herself holding her book this week to Instagram this week, writing, “Release day is officially here!!! I put my heart and soul into this book to share an honest and raw perspective of what it was like to battle an ultra rare stage IV kidney cancer at 29.
“I can’t believe release day has finally arrived and I feel so incredibly grateful to still be here to watch it come to life. I hope you enjoy the read!”
Coping With Cancer
- Mental Health and Cancer — The Fight, Flight or Freeze Response
- ‘Self Care Is A Way To Treat Yourself’: Dr. Marianna Strongin on the Importance of Self-Care
- What Do You Say To Someone Who Has Been Diagnosed With Cancer? Psychologist Marianna Strongin Offers Tips
- ‘How Much Will It Cost?’: A Guide to Coping With the Cost of Cancer Treatment
- Mental Health: Understanding the Three Wellsprings of Vitality
- How to Be Realistically Optimistic: Coping With Mental Health Long-Term
It took Coleman a total of 18 months to get an accurate diagnosis, as eight separate doctors dismissed that she could have kidney cancer due to her young age.
Then on New Year’s Eve in 2020, she received her diagnosis of metastatic renal oncocytoma, a rare form of kidney cancer, which had spread to her liver.
She had a 12-centimeter tumor removed from her right kidney and multiple tumors from her liver. She also needed to have some “tiny tumors” burned off because they were to small to see.
Her medical team have since been using the active surveillance method in managing her cancer. Coleman gets followup scans so doctors can keep their eye on some “suspicious spots.”
Coleman has been doing incredibly well since and took to Instagram this past June to announce she still has “no active cancer.”
Writing alongside photos of herself, she captioned the post, “Not sure which part of today was better—sharing and connecting with a community of patients and caregivers that mean the world to me or getting my scan results an hour later confirming I still have NO ACTIVE CANCER!
“It’s odd getting a couple of years into the clear. I notice others are far more confident that I’m going to get good news each scan than I am. The more I get back to life, the more I have to lose, and my biggest fear is getting attached to life and having it pulled back out from under me again. So for the past several years, I’ve lived scan to scan, never letting myself get too attached to anything outside those windows.”
She concluded, “But as we increased my scan interval again (9 months now) and began talking about the plan if I continue on this trajectory, I left my appointment realizing maybe it’s time to give myself permission to start picturing not just what the next several months or year looks like but allow myself to start entertaining more long term and what life could look like from here.”
View this post on Instagram
Learning About Kidney Cancer
Kidney cancer develops when cells in the kidneys, a pair of bean-shaped organs each about the size of a fist, begin to grow out of control. Renal cell carcinoma is the most common type of kidney cancer. In fact, about 9 out of 10 kidney cancers are RCCs.
According to the National Cancer Institute, 81,610 new cases of kidney cancer are expected across the U.S this year and it’s a disease which can develop in both adults and children.
“The main types of kidney cancer are renal cell cancer, transitional cell cancer, and Wilms tumor,” the institute explains, noting that some “inherited conditions” may increase a person’s risk of getting the disease.
Luckily, advancement in kidney cancer treatment has proven effective for people battling the disease.
Exceptional Responders: Why Do Some People Respond Better to Treatment?
The institute states, “NCI-funded researchers are working to advance our understanding of how to detect and treat kidney cancer. Much progress has been made over the last few decades, especially in identifying genes that can drive the development of kidney cancer.
“This knowledge has led to more effective treatments. Today, about 75% of people with kidney cancer will be alive 5 years after diagnosis.”
As for renal cell carcinoma (RCC), the disease Katie Coleman is battling, it “is the most common malignant tumor of the kidney and constitutes over 90 percent of all renal malignancies.”
Here are some signs of kidney cancer to look out for:
- Blood in the urine (hematuria)
- Low back pain on one side (not caused by injury)
- A mass (lump) on the side or lower back
- Fatigue (tiredness)
- Loss of appetite
- Weight loss not caused by dieting
- Fever that is not caused by an infection and doesn’t go away
- Anemia (low red blood cell counts)
According to the National Cancer Institute, the following types of treatment are used for someone battling renal cell carcinoma:
- Surgery
- Radiation therapy
- Chemotherapy
- Immunotherapy
- Targeted therapy
- New types of treatment are being tested in clinical trials
According to UCLA Health, kidney cancer can metastasize, or spread, to any part of the body through the blood or lymphatic system. When that happens, the first signs of cancer may not be specific to your kidneys.
Symptoms of metastatic kidney cancer (like what Katie Coleman is fighting) may cause symptoms in the newly affected areas of the body including:
- The lungs, causing cough and shortness of breath
- The bones, resulting in bone pain or fracture
- The brain, presenting as headaches, confusion or seizures
That being said, all of these signs don’t necessarily mean you have cancer. Still, you should always bring up any changes to your health with your doctors.
“Traditionally, kidney cancer was diagnosed in people coming in with blood in the urine, a mass (in the) belly that was big enough that you could feel, or pain on that side,” Dr. Geoffrey Sonn, a urologic oncologist with Stanford Hospital and Clinics, previously told SurvivorNet.
“More recently because of the great increase in the use of imaging with ultrasound, CAT scans, MRI most kidney cancers (are) diagnosed incidentally, meaning a scan is done for another reason,” he added.
Dr. Sonn said that doctors finding a mass seen on imaging done for another reason is “the most common presentation” of the disease. Some patients without symptoms might discover their cancer through scans done for unrelated reasons, and other might discover the cancer after a scan to investigate abdominal pain, like Coleman.
RELATED: Olivia Newton-John Says Her Stage 4 Breast Cancer Is a “Gift” & Explains Why
Either way, it’s important to stay up-to-date on check ups and speak with your doctors about any possible signs of something being wrong.
“For localized kidney cancer, for relatively small masses that have not metastasized, most often patients feel nothing, and this is found on a scan done for another reason,” he explained.
“For larger masses of the kidney they may have pain on that side, they may see blood in the urine or a routine urine test may show a microscopic amount of blood in the urine that’s not enough to be seen visually but still will prompt further testing with imaging that shows the kidney cancer.”
Provider Bias in Healthcare
It’s important to understand that while your doctor has undergone years of training and practice, she or he is ultimately still human and may come with their own set of biases that can impact how they treat patients.
For other young women, it’s not unusual to be ignored at the doctor. And the same goes for many groups of people, including Black people, older people, the LGBTIQA+ community, and anybody who is lacking on education and money.
To combat these biases, known as provider biases, and really get the most out of your interactions with your doctor, you should provide her or him with plenty of information about your life and ask plenty of questions when things aren’t clear.
To better understand how you should approach conversations with your doctor, SurvivorNet previously spoke to Dr. Dana Chase, gynecologic oncologist at Arizona Oncology.
According to Dr. Chase, physicians, like many of us, can be a bit biased when seeing patients. Dr. Chase makes clear that these biases are rarely sinister, but rather unconscious and more subtle.
Avoiding Provider Bias – Is Your Doctor Understanding You?
Dr. Chase says, “We have certain beliefs that we don’t know about. We might look, for example, at an older woman, and just by the way she looks we might make certain assumptions, and we might not even know that we’re making these assumptions.”
Sometimes, these assumptions can lead to differences in the care that doctors provide. That is the point at which you, the woman, should advocate for yourself and clear up any misconceptions the doctor may have, says Dr. Chase.
“Say things to your doctor like, ‘I may not seem healthy because I’m 92, but I want you to know that I play tennis three times a day,’ ” she explains. This type of discourse can be really helpful when building a relationship with your physicians and even more important when it comes to creating a treatment plan.
To sum things up, Dr. Chase says, “In order to avoid situations where potentially the doctor is making assumptions about you that you don’t even really know about, reminding yourself to tell the doctor who you are, to explain your life situation, I think is really important.”
Provider Bias in Healthcare: How To Change The Dynamic
Clearing up misconceptions is important, but so is understanding what your doctor is telling you, says Dr. Chase. In order to do so, she advises women to speak up and ask questions when they don’t understand something.
“It’s never a bad thing to ask for something to be repeated, or to ask the doctors to explain it in different terms.” So next time you go to your physician, we think you should feel empowered to speak up, both so she or he understand you and you understand them.
Being Your Own Advocate
It’s important to practice, something many SurvivorNet experts often recommend, being your own biggest advocate.
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview.
“And I think that that’s totally fair. And me as a health professional that’s what I do for all of my patients.”
WATCH: Why advocating for your health is important.
Getting a second opinion is another way to advocate for your health.
Doctors do not always agree on whether your symptoms might warrant further testing. It’s during moments like these that having a second or third medical professional’s opinion might be able to catch something before it worsens.
Dr. Steven Rosenberg, chief of surgery at the National Cancer Institute supports patients getting multiple opinions.
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care, because finding a doctor who is up to the latest information is important,” Rosenberg previously told SurvivorNet. “And it’s always important to get other opinions so that you can make the best decisions for yourself in consultation with your care providers.”
WATCH: Cancer Research Legend Urges Patients to Get Multiple Opinions.
Contributing: SurvivorNet Staff
Learn more about SurvivorNet's rigorous medical review process.
