Advocating for Your Health
- David Brownlees, 44, was finally diagnosed with kidney cancer after months of belly pain and a misdiagnosis. Now, he’s doing well after surgery and immunotherapy and showing no signs of the disease.
- According to one of our experts, kidney cancer is most often found when doctors are performing scans for a reason other than suspected kidney cancer.
- Being your own advocate can be key to coming to a correct cancer diagnosis and obtaining the best treatment possible while dealing with a diagnosis.
When Brownlees, 44, was feeling tired and regularly having stomach pain, he didn’t think much of it. As a nightshift manager, the UK-based father chalked his discomfort up to the demands of his job. But Brownlees knew he had to go to a doctor when the pain in his abdomen became unbearable.
Read More“I was so shocked and terrified. I didn't really know what was going to happen next,” Brownlees said. “So many things were running through my mind, and I didn't know how I felt I just tried to cling on to the small hope I had that it might not be cancer.”
It turned out to be stage 4 kidney cancer that had spread to his adrenal gland a small, triangular-shaped gland located on top of both kidneys and his lungs.
Thankfully, surgery to remove his kidney and adrenal gland and immunotherapy has left him with no evidence of the disease. He’s also feeling grateful for the information and support he found from a UK-based charity created specifically for people with kidney cancer.
“I can honestly say that I wouldn't have been able to cope throughout this journey without the help of Kidney Cancer UK,” he said. “The helpline helped me understand what my grading meant and answered so many questions for me.”
Understanding 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 (RCC) is the most common type of kidney cancer with about 9 out of 10 kidney cancers being RCCs.
It is estimated that about 79,000 new cases of kidney cancer (50,290 in men and 28,710 in women) will be diagnosed in the United States for 2022, so here are some signs of the disease 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)
That being said, these signs do not necessarily mean you have cancer. But 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.”
Dr. Sonn says 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. 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 said. “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.”
Advocating for Your Health
As we've seen in the case of Brownlees, it's always important to pay attention to the changes happening to your body and ask professionals why. You have every right to insist your doctors investigate any possible signs of cancer, other avenues for treatment or the potential of a different diagnosis. And even if you simply don't know what's causing a change to your body, you should still seek professional help. You never know when speaking up about a seemingly unimportant issue can lead to a very important diagnosis cancer or otherwise.
Be Pushy, Be Your Own Advocate… Don't Settle
"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."
In a previous interview with SurvivorNet, April Knowles explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Unfortunately, that dismissal was a mistake. Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn't feel right.
I Wanted My Doctor To Like Me, Then He Missed My Breast Cancer
"I wanted my doctor to like me," she said. "I think women, especially young women, are really used to being dismissed by their doctors."
Figuring out whether or not you actually have cancer based on possible symptoms is critical because early detection may help with treatment and outcomes. Seeking multiple opinions is one way to ensure you're getting the care and attention you need.
Another thing to remember is that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it's essential to talk with multiple medical professionals.
Learn more about SurvivorNet's rigorous medical review process.