A Man Felt A Sharp Pain In His Back.
This Is What Happened To His Kidneys.
HC is a 26 year old man, presenting to the emergency room with hematuria, the urination
of blood.
He tells the admitting nurse that over the last few months, what started as a tickle
sensation in his back had developed into a pain that would radiate down into his legs.
You see, HC was like most Americans born in the middle 1980s.
When he graduated college in 2008, the economy crashed.
None of his classmates could find jobs.
Without good prospects for work, HC started to panic.
He thought to himself that more school, medical or graduate, could be the answer for him.
And while he was working any part time job that he could get, he would study for the
entrance exams needed to get in to those programs.
Because his work was part time, HC didn’t have health insurance.
But maybe he didn’t need it.
He was young, he was active, he played sports, and his whole family had always been healthy.
Dad was ex military, so everything was fine, he thought.
One day, 3 years after he graduated college, HC felt a tickle on the right side of his
back.
Whenever this would come up, he would press his thumb in to the area, but it was deep
inside his body.
He felt it was an itch that he just couldn’t scratch.
Over the next few weeks, the tickle would intensify, and HC would press his thumb in
to his back harder and harder, until finally one day, it didn’t tickle anymore.
It started to hurt.
Unsure what this was all about, HC thought that maybe he was pressing his thumb too hard
into his back, maybe he had injured a muscle or a ligament or maybe his mattress was too
stiff.
Around this time he developed a cough that wouldn’t go away.
He thought it was allergies.
He called his sister who lived in the mountains, to see if he could go visit her.
Fresh air and a different mattress to sleep on would help take his mind off all the stress
in his life.
And everything went well.
But when he came home, the pain returned.
The cough got worse.
And while this was happening, he started noticing something weird with his urine.
Sometimes, he’d just take a little sip of water, and then urinate out what seemed like
gallons of water.
The urine wasn’t concentrated, but it wasn’t proportional to the amount that he was drinking.
But then things started getting worse.
One day, HC went to use the bathroom.
What should have been urine was splashes of red blood everywhere in the toilet.
In disbelief at the scene, HC thought maybe this was some kind of kidney stone that had,
ripped apart some of his kidneys?
On the internet, HC started Googling “blood in urine.”
The first result returned “cancer,” “but how could that be?” he thought.
He was only 26, and cancer’s a disease that comes with age, so there’s no way this was
happening.
The second result returned kidney stones, so he felt hopeful.
Without insurance, HC was hesitant about going to the hospital, but that sight of red in
the toilet was so jarring to him that he brought himself to the emergency room, where we are
now.
At examination, HC was conscious and alert.
He explained to the nurses what had been going down.
Hematuria isn’t normal, for anyone.
Maybe it was a kidney stone so they sent him in for a CT scan of his kidneys.
HC was hopeful.
But then doctors ordered a second scan.
They thought that they saw something on that first scan, so they wanted to dive deeper.
As the hours passed, HC started to become anxious.
Everything pointed to the possibility, that this was more than just kidney stones.
And as the attending physician came back, he told HC that what was in his right kidney,
was cancer.
The tickle in his back becoming a pain.
The pain radiating down to his legs.
The blood in the urine and the progressively worsening cough.
All of this connected in HC’s mind, as he realized that everything that had been happening
over the last few months late stage cancer growing and spreading everywhere.
But HC’s time in the emergency room was over.
His care needed to be transferred to another department that could take more care of him.
At discharge, the emergency room doctor wrote on the notes that HC’s case was likely a
particular kind of kidney cancer called Renal Medullary Carcinoma, based on his demographics.
That he is a man in his 20s, of African descent with a Sickle Cell gene, and with a tumor
growing on his right kidney.
Cancer isn’t supposed to be diagnosed in the emergency room, because when it is, it
means that the disease is so advanced, that all the signs and symptoms are immediately
obvious to pick out.
And when the cancer is advanced, there might not be much time left for that person.
But how exactly did HC get cancer like this, at this age?
This brings us back to demographics.
The emergency room doctor noted that HC had sickle cell trait, but what does that mean?
Red blood cells are responsible for moving oxygen throughout the body.
Inside red blood cells is a protein that carries that oxygen called hemoglobin.
Human DNA is the instructions to create all the proteins in our body, meaning, if some
of the DNA is mutated, then the proteins might turn out a little different.
In people of African descent, there’s a mutation in the DNA for hemoglobin.
It’s well known.
At least 300 million people worldwide have it.
When hemoglobin is just a little different than normal, the shape of the red blood cell
becomes sharp like a sickle.
We think this mutation happened because it protects people from malaria, a parasitic
disease transmitted by mosquitos that’s common in areas by the Equator, like Africa.
And it’s this sickle hemoglobinopathy, -opathy referring to a disorder of hemoglobin, causing
the cell to become sickle shape, that’s one part the cause of HC’s cancer, but it’s
only the start of his problems.
You see, sickle cell trait is a little different than sickle cell disease.
And because Sickle Cell Trait doesn’t have the word disease in its name, people think
it’s not a problem, because “at least it’s not disease.”
You see, humans have 2 copies of any given gene in their DNA.
In sickle cell disease, both genes have the sickle mutation, meaning many red blood cells
floating around are sickle shaped.
They clump together and block the blood vessels, causing massive pain and kidney damage.
But in sickle cell trait, only 1 of the genes has the sickle mutation, the other gene has
no problem.
Sickle cell trait means that none of the red blood cells are sickle shaped, so none of
that blocking happens in the body, except for when those red blood cells are in the
kidneys.
I explain more in this video on my second channel Heme Review, link in the description
below.
Dr Pavlos Msaouel: If the oxygen levels are reduced to very low levels, then, even if
you have sickle cell trait, the red blood cells will change shape into sickles.
But most people, some medical professionals included, don’t know that red blood cells
in sickle cell trait will sickle in the kidneys, as HC would find out very quickly.
When he called the doctors office, HC instantly got problems.
Despite having authorization from the emergency room to see someone, the receptionist was
adamant— their office wasn’t accepting new patients, especially ones without insurance.
Back in the emergency room, HC got that doctor to schedule the appointment.
But as the time got closer, a receptionist called and the appointment was moved back
several months.
Months that HC didn’t have because cancer was spreading in his body.
One of his sisters worked at the hospital and she was able to get his appointment moved
earlier, but he had to drive to a clinic hours away.
He didn’t understand why getting a confirmation of what kind of kidney cancer he had was so
difficult.
But at this first visit, that doctor didn’t think he had cancer at all.
They started by asking HC about being born overseas because of his military father.
And cancer doesn’t happen in young people, as you know, so this is probably an STD that
HC had picked up while he was overseas, probably HIV, because HIV damages the kidneys, maybe
causes hematuria explaining that.
All of this despite the fact that this practitioner didn’t test HC for HIV.
After this visit, the department scheduled an MRI for HC, but in 5 months time.
If HC has late stage cancer spreading all throughout his body, he might not be alive
in 5 months.
He tried anything he could to get an earlier MRI, but nothing happened.
In the weeks that passed, HC called that doctor to tell him about his worsening cough.
Adamant that this was HIV, the doctor believed that this was the opportunistic lung infection
you find in someone with HIV.
They ordered HC to go to the hospital and get a chest Xray.
Except, the doctors who did that Xray could immediately see, that wasn’t HIV pneumonia
in his lungs, that was cancer from his kidney that had spread to his lungs.
Those doctors were much more concerned about his health, but they were doctors who operated
inside the hospital.
They weren’t the ones in charge of his care.
A sample of HC’s kidney was taken and looked at underneath a microscope.
All of this confirmed— HC has renal medullary carcinoma.
It’s growing in his right kidney.
It’s spread to his lungs.
But it was shrugged it off.
The doctor said to HC that they can do surgery to remove the cancerous kidney, but only if
HC wants.
In the emergency room one night, HC was told by staff that not having insurance put him
at the bottom of the list.
But it doesn’t explain why his doctor immediately thought HC had an STD.
Or why he thought that HC may have had a urinary tract infection, when emergency room notes
didn’t indicate any infection.
Or why he thought that HC had HIV, without bothering to test for it.
A few days earlier, HC had looked online.
He was on a patient forum discussing Renal Medullary Carcinoma.
He noticed someone who kept appearing in the searches.
A doctor in Texas, who did research and wrote papers on it.
Late at night on a Saturday, thinking that there may not be anything else left to lose,
HC sent this Dr Nizar Tannir an email explaining his situation.
He didn’t think that he would get a response, but that really wouldn’t be any different
than what he was already getting.
But in just a few minutes time, HC got something back.
Dr Tannir: I responded to him and said, “Do not despair.
There is hope.
And I will see you in the clinic when I return.”
In the emails, Dr Tannir had told HC that chemotherapy first, then surgery, is how you
treat this particular kidney cancer.
That’s the opposite from all other kinds of kidney cancers.
But when HC brought up the idea of chemotherapy first to that doctor, the response was just
like all the other responses that he had gotten from this person.
But it didn’t matter.
HC had made up his mind- he was going to go to Texas, to see Dr Tannir.
On the drive from South Carolina to Houston, HC’s cancer was so advanced that his family
didn’t speak to him during the whole 17 hour trip, because if he tried to say anything
or laugh, he would just cough uncontrollably because cancer was everywhere in his lungs.
In Dr Tannir’s hospital, they quickly confirmed renal medullary carcinoma.
HC was given a treatment plan.
They would start on chemotherapy.
This would kill cancer cells and shrink the tumor.
They would see how HC responds to the chemotherapy, and then they would remove his cancerous kidney.
This all sounded great, but HC still didn’t have insurance.
He had some family who lived in Texas who he could stay with if he were to get this
treatment, but he didn’t know how this could all be done, and he was afraid he’d be treated
the same way that he was at the previous hospital.
But Dr Tannir and his staff were able to obtain an override for HC so that he could start
to receive the treatment.
And by the third day of arriving to that hospital, he was started on chemotherapy.
The confusion of sickle cell trait versus disease.
The young age of diagnosis.
The idea of removing the kidney first like in every other kidney cancer, but doing that
in this cancer would decrease patient survival.
All of this contributes to renal medullary carcinoma being an under recognized disease.
Wikipedia still emphasizes that as of 2009 only 120 cases of RMC have been reported.
But looking through literature, there’s cases that were misidentified as a different
kind of kidney cancer called Collecting Duct Carcinoma.
We know now, that’s probably RMC.
It downplays the incidence.
And unfortunately, that downplaying manifests in the real world, to the care of actual patients,
bringing us back to HC’s case.
As the weeks and months passed, support from HC’s family helped him continue his treatment.
After 5 cycles of chemotherapy, the cancer couldn’t be seen on scans of his lungs and
kidneys, but that doesn’t mean he’s out of the woods just yet.
The tumor might just be so small, that the scans don’t pick it up.
And we know a small mass can grow back into a large mass, as he was sent in for surgery.
Samples of his right kidney were taken and looked at underneath a microscope.
The cancer had gone from a large mass visible on CT scan, to a small residual focus.
But the work wasn’t finished.
HC was continued at first on different medicines.
They weren’t chemotherapy, they were pills for a clinical trial.
But then they noticed that the tumors were starting to grow again, as they stopped that
medicine, and restarted him on chemotherapy.
And it seemed to work, because as the time continued, each scan for HC returned clear
again.
The cancer that was in his lungs had disappeared.
His cough went away.
He didn’t have a right kidney anymore, but his left kidney had no cancer on it.
His bones were clean, and nothing was found on his liver.
HC wouldn’t be here if he had listened and believed he had HIV.
Or went along with the original doctor and had his kidney taken out before getting chemotherapy.
Had he not sent that email to Dr Tannir and had he not had help from his family.
2 years after presenting to the emergency room and being diagnosed with Renal Medullary
Carcinoma, Dr Tannir decided to give HC a break from chemotherapy, because the cancer
was no longer showing up on the scans.
At the 5 year mark, HC was declared cancer free.
And as of 2021, almost 10 years since his diagnosis, he is one of the documented survivors
of Renal Medullary Carcinoma.
Patient HC: My name is Herman Connor.
And I’m an RMC Survivor.
Thanks so much for watching.
Take care of yourself.
And Be Well.