News

Renal Medullary Carcinoma takes lives in what feels like the blink of an eye. Shortly before this year’s Warriors’ Convention, our beloved community member, Dr. Ana Maldonado, lost her fight with this dismal cancer. My deepest condolences go to her family. I’m saddened that we couldn’t protect her from it. But, why could we not? Let’s start by understanding Renal Medullary Carcinoma.

Renal Medullary Carcinoma 101

RMC is a rare subtype of Kidney Cancer that primarily affects people with Sickle Cell Trait (SCT), Sickle Cell Anemia (SCA), or one of the Sickle hemoglobinopathies. As SCT mainly affects black and brown people, RMC also disproportionately appears in members of these groups. RMC forms specifically in the medulla of the kidney, and has features distinct from other Renal Cell Carcinomas.

Generally, anywhere that there is repeat cell damage cancer develops. In the case of RMC, most believe it develops due to repeat sickling in the vascular structures of the renal pyramids and renal medulla. This damages the SMARCB1 gene, which is a tumor suppressor. So, if we can minimize sickling we greatly reduce the likelihood of trait warriors developing RMC. More on that later.

Telltale symptoms of Renal Medullary Carcinoma onset include fatigue, pain – especially flank pain, hematuria, and shortness of breath. People with Sickle Cell Trait should absolutely be monitored for RMC if they experience any of these symptoms. How did this show up in the story of Dr. Maldonado?

Dr. Ana Maldonado

Beautiful and smart, strong and athletic, by no means did anyone imagine she could fall victim to cancer. We both presented at the 2022 Warriors Convention, where I got to meet her and learn her story.

After dealing with stress for some time, she began a new workout regimen in order to improve her emotional health. She soon found that, despite her will and persistence, her body just couldn’t keep up. It wasn’t long before she learned that she was dealing with Renal Medullary Carcinoma. The fact that she did not know or have the chance to protect herself against this deadly cancer is enough of a wake-up call to raise awareness about Sickle Cell Trait – its deleterious, and even deadly, outcomes.

If you leave a diabetic untreated, their diabetes will progress to coma and death. But if you treat them, it becomes mild and even reverses until, on paper, it barely looks like they have diabetes. They can live a relatively normal life.  Leaving things untreated and undiagnosed is when the outcomes become tragic.

To spend your last 2 years fighting an aggressive cancer – leaving behind a husband, children, and patients that love you – is another level of tragedy. She was a mother AND a doctor, to achieve both of those titles is a feat of tremendous greatness. 12 long years (or more) in school developing an expansive knowledge base; but still Sickle Cell Trait came like a thief in the night, taking her totally unaware. That is the result of heads stuck in the sand, ignoring and suppressing the reality of this disease.

Modes of prevention

Only our maker knows the day we will die, but how we live until we get there is where I wish to have the most impact.

Consider Renal Medullary Carcinoma develops through repeat damage in the kidneys. So, prevention comes through the same means that you would prevent sickling and sickle cell trait crisis. By sickle cell trait crisis, I mean: hematuria, muscle pain, flank pain, fatigue, overheating, shortness of breath, and/or collapse. You need to:

• Drink half your body weight in ounces of water every day.

• Eat a diet that promotes red blood cell health.

• Start new activities slowly so your body has time to acclimate, and develop wider blood vessels.

• Always Warm-up, Drink-up, and Rest-up if you are involved in athletic activities.

Given the nature of this cancer, these measures go a long way in preventing tragic complications.

Keep tabs on your numbers

Anyone with Sickle Cell Trait should be getting screened regularly. This especially goes for those of you who hold physically taxing occupations or regularly engage in athletics. Speak with your doctor about a full Urinalysis, a Complete Metabolic Panel, and a Complete Blood Count with the Differential. Anyone with SCT should be getting these annually.

Those of you experiencing symptoms regularly and/or fall in the at-risk age range of about 9-40 years old, should be getting a full urinalysis at least every 6 months. This way, your doctor can track changes to your baseline and know when further evaluation may be necessary.

No protocols exist for RMC monitoring just yet. I recommend anyone experiencing symptoms from Sickle Cell Trait speak with their doctor about renal imaging. An ultrasound doesn’t cost a whole lot, especially compared to what it could save you in the long run. Ask your doctor to rule out RMC if any red flags show up in your routine lab work.

I repeat: even if the lab work doesn’t cause concern, get renal imaging done if you’re experiencing symptoms. An ultrasound is non-invasive, and most doctors would be willing to order that for you.

The story doesn’t have to repeat itself

With education, we can stop calling Sickle Cell Trait benign and create the conditions that make it benign in its impact on our lives.

If you’d like to help preserve our amazing human resources, our esteemed community members, like Dr. Maldonado, help Nscrxption get into schools, colleges, and universities to begin retraining health professionals, hospitals, and clinics. We already have a certificated program to retrain clinicians, nurses, and physician assistants that take care of patients.

Help us educate athletes, coaches, and sports teams about this disease. Everyone can still do what they want to do, they just have to know how to take care of themselves in light of their activities. Our hope is to help everyone in their pursuit to make the world a better place, by making them aware of their disease and how to manage it.

Also, help us support the work of Ms. Ritchie Johnson. A close friend of Dr. Maldonado. She founded the Chris “CJ” Johnson Foundation after losing her son to RMC. She is working to make RMC treatment accessible for all those affected by it, and her monthly support group gives strength and community to those fighting this disease.

The news of Dr. Maldonado came to me moments before my presentation at this year’s Warriors Convention. It was a difficult 30 minutes to say the least. This essay, I hope, contributes to her legacy and serves as a call to those of us with the ability to affect change.

With love and light.