I’ve Had Cancer, But Not This Kind

Several days ago, I received a call from a cousin who I haven’t seen nor heard from since my brother’s funeral almost three years ago. You know that can’t be good… and it wasn’t. It seems she might have kidney cancer. We are a cancer prone family, but this is the first possible diagnose of this kind. She wanted to know what I knew about it and I had nothing to tell her. But I will after this blog and you’ll know a lot more about it, too.  

Having no knowledge of this kind of cancer except that it starts in the kidneys, I decided my usual go-to the Mayo Clinic might be the best place for a general overview. 

“In adults, renal cell carcinoma is the most common type of kidney cancer. Other less common types of kidney cancer can occur. Young children are more likely to develop a kind of kidney cancer called Wilms’ tumor. 

The incidence of kidney cancer seems to be increasing. One reason for this may be the fact that imaging techniques such as computerized tomography (CT) scans are being used more often. These tests may lead to the accidental discovery of more kidney cancers. Kidney cancer is often discovered at an early stage, when the cancer is small and confined to the kidney.” 

Let’s not forget that the kidneys are buried deep in the body where a physical examination may not reach for signs of tumors. 

My cousin said she had no symptoms. Was that usual with this type of cancer? I know from my own experience that sometimes those with Chronic Kidney Disease have no symptoms, but this was cancer. The Cancer Treatment Centers of America laid out the possible symptoms for us: 

“The most common sign of kidney cancer is blood in the urine (hematuria), which may make the urine look rusty or dark red. Other signs of kidney cancer may include:  

Low back pain or pressure on one side that doesn’t go away 

A mass or lump on the side or lower back 

Fatigue 

Loss of appetite or unexplained weight loss 

A persistent fever not caused by infection 

Anemia (low red blood cell count) 

Swelling of the ankles and legs 

In men, a cluster of enlarged veins, called a varicocele, around a testicle, typically, the right testicle 

Although these symptoms may indicate a kidney tumor, they also may be caused by other, less serious health issues. Some kidney cancer patients experience none of these signs, and others experience different symptoms entirely.” 

I was curious as to how my cousin knew what her primary physician suspected since she’d told me she hadn’t had a biopsy yet. WebMD explained the other tests she may have undergone. 

“Urine tests check for blood in your urine or other signs of problems. 

Blood tests show how well your kidneys are working. 

Intravenous pyelogram (IVP) involves X-raying your kidneys after the doctor injects a dye that travels to your urinary tract, highlighting any tumors. 

Ultrasound uses sound waves to create a picture of your kidneys. It can help tell if a tumor is solid or fluid-filled. 

A CT scan uses X-rays and a computer to create a series of detailed pictures of your kidneys. This may also require an injection of dye. CT scans have virtually replaced pyelogram and ultrasound as a tool for diagnosing kidney cancer. 

Magnetic resonance imaging (MRI) uses strong magnets and radio waves to create detailed images of soft tissues in your body. You may need an injection of a contrast agent to create better pictures. 

Renal arteriogram. This test is used to evaluate the blood supply to the tumor. It is not given often but may help diagnose small tumors. It has other uses, as well.” 

While blood and urine tests can also confirm CKD and are familiar to us, renal arteriogram was something that was new to me. So, it sounds like she may go straight to CT since both the pyelogram and ultrasound are not as effective in diagnosing kidney cancer. 

Picture this. My cousin has been diagnosed and is going slightly berserk. Cancer is not an easy diagnosis. She goes to her primary doctor and (s)he refers her to one of these specialists who will bring in the rest of the team: 

“In cancer care, different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team. For kidney cancer, the health care team usually includes these individuals: 

Urologist. A doctor who specializes in the genitourinary tract, which includes the kidneys, bladder, genitals, prostate, and testicles. 

Urologic oncologist. A urologist who specializes in treating cancers of the urinary tract. 

Medical oncologist. A doctor trained to treat cancer with systemic treatments using medications. 

Radiation oncologist. A doctor trained to treat cancer with radiation therapy. This doctor will be part of the team if radiation therapy is recommended. 

Cancer care teams include a variety of other health care professionals, such as physician assistants, nurse practitioners, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.” 

Cancer.net, which is doctor approved patient information from the American Society of Clinical Oncologists, was my source for this information. 

Wait a minute. “What’s the role of the nephrologist in all this? After all, that’s the kidney specialist,” my cousin may ask. According to UCLA Health’s Core-Kidney

“Nephrologists screen and identify kidney cancer patients that are at high risk of developing CKD after surgery. Nephrologists team with urologists for ‘before and after surgery’ care of patients. Nephrologists are routinely consulted for optimization of blood pressure of kidney cancer patients, correction of anemia, avoidance of drugs that are potentially toxic to kidneys and adequate hydration of kidneys during contrast use with computer tomography or during surgery.” 

I know, I know. What’s important to her right now is how this kidney cancer may be treated. I went straight to the horse’s mouth (so to speak) for help with this one. The National Kidney Foundation offers a multitude of options. To paraphrase, they are: 

Open, laparoscopic surgery, or robotic surgery to remove part or all of the kidney 

Thermal ablation 

Active Surveillance 

Chemotherapy and Radiation 

There are more options for advanced kidney cancer. 

For the first time in a decade, I don’t know how to end this blog. Let’s put it this way; I’ve had cancer, even though it wasn’t kidney cancer and I just plain hope cancer is not something you’ll have to deal with. 

Until next week, 

Keep living your life! 

Kevin Got His Preemptive Kidney Transplant

Several years ago,  I was invited to a kidney disease meeting. That’s where I first met Kevin Fowler, Principal of The Voice of the Patient, Inc. I liked listening to his ideas. Later, we walked into each other at an AAKP conference. This time I thoroughly enjoyed his company, but had quite a few questions about pre-emptive transplants. Kevin was good enough to explain his story, which answers my questions, in this guest blog during National Kidney Month. Take it away, Kevin! 

Kidney disease has always been a part of my life.  When I was growing up, my mom told me stories about her father who had suffered from Autosomal Polycystic Kidney Disease ( ADPKD), a disease which prompts the growth of cysts on the kidneys. My mom was the oldest of three sisters, and had great love and affection for my grandfather, Hubert Duvall.  I never had a chance to meet him because he died before I was born. It was the late 1950s when he was admitted to the hospital because he was not feeling well. Unknown to him, he was experiencing uremia, the inability of the kidneys to rid themselves of waste products such as urea, as he went into kidney failure. Shortly after his hospital admission he died.  As he neared death, he learned that ADPKD was the cause of his kidney failure. 

My grandfather’s patient journey had a profound impact upon his three daughters: Mary Ann, Ruth, and Laverne in that his genetic disease was passed on to each of them.  My mom, Mary Ann, was diagnosed after the birth of her third child. Imagine the joy of giving birth to a child while being diagnosed with a disease with limited scientific knowledge and a very uncertain future.  My mom and dad faced the unknown with a positive attitude, but with very little professional guidance.

As a young boy, I was very close to my mom.  I felt her unconditional love for me, and her whole life was dedicated to her three children.  As her ADPKD advanced, I saw her suffer with the disease. I saw her experience constant back pain, routine exhaustion and nausea.  All of this physical suffering was difficult to understand as a young child. Moreover, what was really difficult was the look on her face as she faced a nebulous future.

Eventually, my mom’s kidneys failed.  Unlike my grandfather, hemodialysis was available as a treatment option to sustain her life.  She started hemodialysis at the age of 48. While she approached dialysis with optimism, her future was never clear to her or our family.  I saw my mom struggle to survive on dialysis. I saw her return home from dialysis feeling exhausted and tired. I saw that when she had a rough hemodialysis session, it would take her longer to recover from the treatment.  She never bemoaned her fate, and provided us the legacy of her example.

After four and a half years on hemodialysis, my mom died at the age of 52.  Her dialysis experience left an indelible impression upon me. From that point on, I lived in fear that I would face the same fate.  I choose to never determine if I had the same disease. In many ways, it was a rational decision. Interventions were not able to slow down the progression of ADPKD.  If I were diagnosed with ADPKD, I would be penalized. I would face difficulty obtaining health and life insurance. The fear of facing the same patient journey as my mom was always hanging over my head, and I didn’t have the courage to determine if I too had ADPKD.  

I was married to my wife, Kathy, in 1995, and in less than five years we had two children.  During this time, I was being seen by a primary care physician who was aware of my ADPKD family history.  My kidney function was tested on my annual appointments, and he told me that my kidney function was fine. He stated that if I had ADPKD, there was not much that could be done to slow down the progression.  Later that same year near the Christmas season, I experienced deep flank (the side of your body between the bottom rib and the hip) pain. Initially, I attributed it to moving some furniture. The pain persisted, and because of my additional responsibilities as a husband and father, I called my primary care physician requesting an ultrasound test.  The ultrasound test would determine once and for all whether I too had ADPKD.

On a cold and sunny day in January 2001, my physician administered the ultrasound test. Watching his reaction told me all I needed to know.  At the age of 39, I was informed that I would be in kidney failure within the next three to five years. He offered to make a nephrology referral, but I declined.  Since he had not demonstrated competence managing my condition, I intuitively sensed that I could not trust his referral would serve my best interests. 

At that time, I was working in the pharmaceutical industry, so I called a physician friend at Barnes Hospital in St. Louis seeking a nephrology recommendation.  On my mother’s birthday, I met with my nephrologist – who had a profound impact on my life. He informed me that it was not necessary to be on dialysis, and that I could have a preemptive kidney transplant.  Because of my fear, I had never taken the time to learn about the different End Stage Kidney Disease treatment options. I was incredibly fortunate to receive the best treatment option.

On this recently past World Kidney Day, the theme was prevention due to detection.  In the United States approximately 90% of those with Stage 3 Chronic Kidney Disease are unaware of their condition.  This is no longer acceptable. The American Kidney Health Executive Order has initiated a public campaign to detect kidney disease earlier.  In fact, the National Kidney Foundation and CVS Kidney Care launched their public awareness campaign this month, National Kidney Month.  Unlike when I was diagnosed, there are now approved treatments to slow down the progression of kidney diseases.  There are potentially additional treatments in the pipeline for ADPKD, Diabetic Kidney Disease, FSGS, IGAN, etc. For many people there is no longer a need to live in fear.  There is a very real possibility that their patient journey may change for the better.

Thank you, Kevin, for sharing your personal kidney journey with us. Kevin may be reached via email at kevinjohnfowler@gmail.com or on Twitter as @gratefull080504.

 

Until next week,

Keep living your life!