Donate Toggle Menu

In this three-part series, guest writer Megan Conley describes her experience with kidney cancer. Megan is a featured speaker at the KCA’s upcoming IKCS 2020 and Virtual Patient Symposium (register now).

Read part two – “How much we take for granted.”

Read part three – “Life after kidney cancer will be different.”

Megan Conley and her husband.

My husband and I got married in April 2019 and in the fall of that year, we were ready to start our family, but experienced some complications. My kidney tumor, like for many kidney cancer patients, was incidentally found, during a series of ultrasounds for fertility issues.  After months of tests, including a CT scan, MRI, and biopsy, I was diagnosed with chromophobe renal cell carcinoma.  My diagnosis came as a shock and fast-tracked our vows “in sickness and in health.”  I went from being excited about this next chapter in my life to secretly wondering ‘am I going to die?’

This emotional journey really began before I received “the call.” An ultrasound detected a 4.2 cm mass in my kidney in November 2019 that was initially identified as a common benign mass of the kidney called an angiomyolipoma (AML).  I did some research and determined it was not something I needed to be concerned with, except that there was a risk it could rupture and that risk could increase with pregnancy hormones.  Still thinking my husband and my focus would be on getting pregnant, I made an appointment with a urologist to get more information. 

Because I was young, healthy and asymptomatic, the urologist was fairly confident it was an AML but ordered a CT scan because of my concerns about the mass rupturing. I had my scan on Christmas Eve and at this point cancer was not even a thought in my mind – I just wanted to know what needed to be done so we could proceed with trying to get pregnant. 

A week later, I met with the urologist again, excited to finally have a definitive answer. He said the mass was not an AML but likely a cyst.  Again, he was not overly concerned because I did not fit the clinical profile of a kidney cancer patient, but suggested I have an MRI to get confirmation on what the cyst was filled with. I left my appointment with more questions than answers. Could the mass be something more serious?  This was the beginning of what would be two months of a heavy weight on my shoulders filled with a lot of “what if” questions and scenarios – I became obsessed.

“I am sorry this is not the call you were expecting… “

The results of the MRI were in and I received the memorable call on January 30, 2020: 

“I am sorry this is not the call you were expecting, but it turns out your mass is a cancerous tumor.” 

The radiologist identified my tumor, located deep in my collecting system, as either papillary renal cell carcinoma or a translocation tumor. The uncertainty left me with a sliding scale of “what if” scenarios and a lot of anxiety. A part of me thought this could all be a mistake because I felt completely healthy. The urologist said a biopsy meant risking a false negative and that it was better to proceed with surgery since I was young, even though he could not give me a definitive answer about the type of surgery I would need.

Dr. W. Kimryn Rathmell of Vanderbilt University Medical Center discusses getting a second opinion about a kidney cancer diagnosis.

During my research I read an article on the Cleveland Clinic website about a woman in her thirties who was diagnosed with kidney cancer while she was pregnant.  My biggest takeaway from her story was to “take a step back and don’t rush decisions.” Taking the time to get a second opinion conflicted with my desire to remove the cancer from my body as soon as possible, but it was worth it. On February 14, 2020, I traveled to Washington, D.C. from my home in Florida to see a recommended urologist at a hospital that I was familiar with, having recently lived in the D.C.

Based on my discussion with the urologist in Florida, I assumed the new urologist would want to immediately schedule surgery. To my surprise, the urologist recommended a biopsy. His reasoning for a biopsy made complete sense. One, there was a  5-10% chance that my mass was a fat-poor AML which can be misdiagnosed as cancer based on imaging alone and the urologist did not want to partially or completely remove my kidney if the mass was in fact benign. Two, if it was cancer, he wanted to know exactly what type to determine the best way to proceed with my treatment and minimize any risk. I asked about the risk of a false negative and he informed me the pathology report would come back as benign, undetermined, or cancerous, the latter two requiring surgery. At the time, I was disappointed because having a biopsy meant more waiting, but I reminded myself of the article and the importance of taking the extra steps.

En route to DC with their dog, Stella.
Megan giving a thumbs up post-biopsy.

Two weeks later on February 27, 2020, I had my renal biopsy and a week later I received a call confirming that my tumor was cancer, but that it was chromophobe renal cell carcinoma, a type of cancer that was not previously mentioned to me. The urologist explained that I would need to have the tumor surgically removed, but that this type of cancer had a favorable prognosis when caught early and contained in the kidney. 

Without pursuing a second opinion which led to a biopsy, my diagnosis up to this point was not accurate.  As someone that did not fit the clinical profile of a kidney cancer patient, the biopsy informed the urologist of a type of cancer that would not have been diagnosed without surgery. This led to an informed decision on my treatment plan, which is why the urologist felt confident attempting a partial nephrectomy involving a less invasive robotic surgery and shorter recovery time. 

As crazy as it sounds, I felt relieved after I received the biopsy pathology report and had a solid answer as to what my mass was. The uncertainty surrounding my diagnosis was gone – I felt a sense of control because  I knew what it was and what needed to be done to get it out.

Lessons Learned

  • You are your own health advocate – as the patient, you are the driver of the decisions that affect your health.  Do your research and educate yourself on your diagnosis. Seek out organizations like the Kidney Cancer Association to find information and resources.
  • I was asymptomatic and didn’t fit the clinical profile of a typical kidney cancer patient. Sometimes we need to push our primary care doctor to refer us to a specialist and sometimes we need to push the specialist for more tests – do not be afraid to proactively ask for more information.
  • Masses in the kidney can be misdiagnosed based on imaging alone.  What may appear to be benign can be cancerous and vice versa.  Every case is different, but make sure your doctor is taking the necessary steps to make the best-informed decision.
  • In the moment, the only thing you want is to remove the cancer from your body, but pause, do your research, and if you can safely take the time, get a second opinion.  Do not feel obligated to go with the first doctor that diagnosed you.  We “shop around” and get multiple “quotes” and “estimates” for just about everything else in our lives.  With the right circumstances, choosing a doctor should be no different.
  • It is possible for urologist to have a difference of opinion on whether to have the patient undergo a renal biopsy before proceeding with treatment.  Your pathology report will come back as either benign, a type of cancer, or undetermined, the latter two require treatment or possibly surveillance.  Again, make sure your doctor is getting a complete picture of information before proceeding with surgery or another type of treatment.
  • Be aware of what is and what is not in your control.  Getting the type of cancer I was diagnosed with was not in my control, but how I handled my journey once I was equipped with the right information was in my control, and that was very empowering.

Disclaimer: This was my experience as a kidney cancer patient and not a medical professional. I have included some insights that I wish I would have known before navigating the healthcare system with a cancer diagnosis. I hope other kidney cancer patients find these insights helpful. 

1 thought on “For Megan Conley, an Unexpected Diagnosis (Part One)”

  1. Hi Megan
    Thank you for sharing and laying out your journey for me and for others. Your so right, you need to always be your own advocate, doctors are people and you just need to follow your gut / instinct because they don’t know sometimes.

    Second opinions are a MUST!!! Great advise to share. You are an amazing beautiful person and it looks like you are weaving your way back to a solid path of good health. Thinking of you , please keep me updated. Take care Your friend Luann

Leave a Reply

Your email address will not be published.