A Woman Had A 3 Day Long Headache. This Is What
Her Kidney Did To Her Liver. KC is a 28-year-old woman presenting to the emergency room with
a throbbing headache. She tells the admitting nurse that this pain had been ongoing nonstop
for at least the last 3 days. 6 Months earlier, KC started having massive abdominal cramps that
would happen once a month. Doctors told her it was her period, but it would happen at least a week
before. And it was the worst pain she had ever experienced in her life, up to that point. At an
Urgent Care center, she told the physician about this pain, but they found that her resting heart
rate was 165 beats per minute. It was like she was running high intensity intervals while just
sitting there. It was here that she was sent to the emergency room where we are now. Doctors
confirm-- KC's heart rate and blood pressure were sky high, but nothing else was wrong. All
other tests were normal. This is probably anxiety, maybe a panic attack they said as they discharged
her with a referral to a cardiologist. Over the next few months, KC notices her hair was falling
out in the shower, and she lost 30 pounds. But, she intentionally wanted to lose weight,
and was putting in effort to do so, so maybe nothing’s wrong, she thought. At the
cardiologist’s office, doctors find nothing else wrong. This is for sure anxiety, and KC just
accepted that she has this problem. Over the next few months, KC got married. She went to the
gynecologist for family planning. At this visit, she told the physician that these abdominal
cramps she had been experiencing, that were happening one week before her period, kept getting
more and more painful. They started 2 years ago, and they never really went away. KC was then 29
years old. In a young, healthy-looking woman, random abdominal pain has a wide differential
diagnosis, meaning it’s a long list of problems that could be causing that pain. To someone whose
job is to diagnose and treat gynecologic disease, a prominent cause of abdominal pain to them could
be endometriosis. But that may need surgery to confirm. And you don’t want to do surgery
in a 29-year-old if you don’t have to, so, this gynecologist referred KC for a colonoscopy
first to see if maybe there could be some kind of gut inflammation happening. But it
turned out to be much more than that. As the days pass, KC was waiting for the scope,
and she started feeling that something was wrong. One day, while huddled over in that strange
abdominal pain, KC felt a hard mass. It wasn’t a lump. It wasn’t swollen. When she laid down, she
couldnt feel it anymore. But when she stood up, there was a stiff presence in her upper right
side, just under her ribs. KC had gotten some blood tests done recently. She asked the doctor
there about the hard mass, but they told her that the scope will find if there’s a problem. “Maybe
I really am too anxious,” she thought. But that colonoscopy wasn’t even going to happen. At the
Urgent Care, because the mass was getting more worrisome for her, the nurse practitioner feels it
once and tells KC, “you need to see primary care, or go to the emergency room, because something is
here.” But she had already raised this issue to primary care. They told her the colonoscopy would
find it. This circular reasoning was simply too much, as she drove herself back to the emergency
room. But in that emergency room, the first doctor told her, the scope will find it . But KC
insisted, “please, take a look or something.” An Ultrasound was performed and the technician’s face
changed instantly when they saw the image. KC was put in for further imaging. And when a second
emergency room doctor came back, all the fear, uncertainty, and doubt stemming from KC’s
concerns would be completely justified. The doctor told KC, the hardness in her abdomen,
were a series of tumors all over her liver. But it wasn’t liver cancer, because a much larger
mass was found on her right kidney. She wasn’t having panic attacks, she didn’t have anxiety,
she had cancer that was growing and spreading around in her body. The kidneys regulate fluid
balance. Having a massive tumor inside it, can impact blood pressure. With more fluid, the
heart could detect that something’s wrong and start to beat faster. The increased pressure could
also cause headaches, and because the kidneys and liver are in the abdomen where her pain was, this
could be the cause of all of her problems. But, it’s more than just cancer now, because it’s not
just on her kidney, something has spread to at least her liver. And, what is she supposed to do
now? Cancer is a genetic disease. When the human genome was sequenced, we were finally able to
have a better idea of what is a “normal” sequence, versus a cancerous one. We’ve identified many of
the genes that get changed when a cell becomes cancerous, but the physical characteristics of
cancer are something more. The genes in our body code for proteins, which give us our physical
form, but they also signal for our cells to do things. Proteins are made of amino acids. Amino
acids are sequenced together, dictated by our genetic sequence. Changing that sequence, either
by mistake, or from environmental damage, causes mutations. But most mutations are harmless, and
usually get resolved by the body. But sometimes, these mutations create proteins that signal to
the cell to grow, and there’s no more signal to stop growing. To keep reproducing with no signal
to stop reproducing. To develop their own blood supply. And to survive in the circulation and
spread to other distant sites of the body. Inside the kidneys are multiple working parts that
exploit natural phenomena to produce normal body function, with urine being a consequence of that
homeostasis. In order to do this, different kidney parts harbor a variety of different cells in
extreme environments in order to filter wastes out of the blood. And because of this heterogeneity,
hetero meaning different and geneity from Ancient Greek genos referring to kind, it means many
different kidney cancers can come out of these highly niche and vastly different cells. Things
work as expected in the overwhelming majority of time, but in the rare instances where they aren’t,
cells here can acquire those mutations. Based on what KC’s kidney tumor looked like from the
images, everything points to an oncocytoma. -Oma from the Latin word Tumor, referring to a
swelling, and oncocyte referring to the kind of cell inside that tumor that’s characterized by
an excessive number of mitochondria when looked at underneath a microscope. But something was
wrong. In medical literature, renal oncocytomas are well documented to be benign cancers, meaning
they don’t spread. KC has multiple tumors all over her liver, so a cancer has spread in her body. But
if renal oncocytomas aren’t supposed to spread, then what’s on her liver? As doctors go in
and take a sample of KC's tumors to look at underneath a microscope, they confirm— the tumors
growing on her liver, are from the cancer on her kidney. And as they look at the kidney and liver
tumors, they find that they all look exactly like an oncocytoma defying the consensus in medical
literature because while kidney oncocytoma isn’t out of the ordinary, seeing that exact same tumor
from a liver sample is virtually unheard of. When she learned of this, she started to look online to
learn more. Because her case defies conventional knowledge, she could only find information on
oncytomas that haven’t spread, and because it’s usually benign, the treatment is to surgically
remove the kidney. But when she asked the cancer physician if they could do this for her, the
answer was “probably not.” They could remove her kidney, but there were just too many tumors
all over her liver. And now that it has already spread, there’s no telling if the cancer is in
other places in her body, that just aren’t visible yet. When doctors were taking tumor samples
from KC, something had happened. As they went into her liver to collect, they got the samples from
a needle inserted into her body, and she was sent in to the recovery room. But almost instantly,
KC’s body started feeling hot. Her hands started feeling clammy, as her field of vision started to
turn dark. She was bleeding out into her abdomen. The liver is highly vascularized. A substantial
percentage of the entire’s body blood is flowing through the liver at any given time. KC
didn’t know she had a bleeding disorder, but this experience exposed that she does. Even
without the disorder, when a small needle is present in the liver, there is a chance that it
can cause a bleed, and for KC, she had a bleed happen when her liver was biopsied. And because
there were so many tumors all over her liver, the medical team told her that surgery really
might not be a viable option. As the days pass, doctors told KC that they wanted to start her on
a 2 medicine combination. This would do a couple of different things. First, these medicines are
known to impact specifically kidney cancers, and theoretically, should shrink her tumors. The
second thing that medicine should do, would be to decrease the likelihood of micrometastatic
disease. You see, when tumors are visible on imaging, there’s millions of cancer cells
contained within. But there exist tumors that have less cells than that, that aren’t visible.
And we know cancer cells divide and replicate, sometimes at much higher rates than normal,
meaning if they don’t appear on the scan now, they could appear on the next. And medicine could
target these and maybe eliminate them before they’re even seen. The problem is, this medicine
combination is usually used to treat a completely different kidney cancer. It’s not entirely clear
that it will work for her, and her cancer may be growing somewhere else where they cant see, as KC
went to get a second opinion. Halfway across the country, at another large cancer center, KC was
seen by the medical team there. They confirmed- she did have, metastatic oncocytoma, despite
literature saying that this particular cancer doesnt spread in the body. The medical team at
this center knew— kidney oncocytoma can spread, but there were less than 5 documented cases. She
was told, they want to start her on medicine, a different one from the combination originally
proposed to her, but for the same reasons. To shrink her tumor. To try to prevent any further
spread. To reduce the chances that more tumors would appear on subsequent scans. And if all this
goes well, then surgery could be possible, but at a minimum, this should help prolong her life,
bringing us back to kidney heterogeneity. There are so many different types of kidney cancers, but
they are still kidney cancer. Any single subtype can have similarities with another subtype,
because they originate from the same organ, while still having key differences amongst one
another. A different kidney cancer can arise from the same or similar cells as oncocytoma. It’s
called Chromophobe Kidney Cancer because its cells are not colored by the standard stains used to
see cancer under a microscope. But chromophobe is well known to spread throughout the body,
and frequently to just the liver. Surgery to the kidney and the liver has sometimes cured patients
with Chromophobe. And Chromophobe can also happen in younger, female patients. Given these 2
cancers’ similarities, and that KC’s pattern of metastasis to the liver resembles Chromophobe,
then theoretically, she could be treated with the medicine used for Chromophobe, despite not
having Chromophobe, bringing us back to her second opinion visit. The physician here explains
to KC how the cancer can respond to the medicine. It could stop growing and stay stable. It could
shrink. But they need time to see. Despite medical literature giving no clear signals on how to
treat KC because it says her cancer doesn’t even exist, this inference from the related Chromophobe Kidney
Cancer gave a rationale for the treatment choice. In United States medical training, across all
of the professions, one overarching theme is embedded in the phrase, “if you hear hooves,
think horses, not zebras.” KC presented to the emergency room all those months earlier with a
3-day long headache. With a resting heart rate of 165 . With a sitting blood pressure of 160 /
100. In a healthy-looking 29-year-old woman with these problems, you hear and see these “hooves” of
problems and you think of the most common HORSES, or issues, causing them. And take steps to
rule out the horses first before moving on to identify the “zebra.” It’s very common
for this “rule out” part to get lost in the shuffle of multiple visits with multiple
providers in multiple offices and this is why you have to be your own best advocate. But on the
flipside, medicine can quickly devolve into excess, dragging people into the deepest pits of
never-ending hypochondria. In KC’s case, she was the one in a hundred million case
of an ultra rare kidney cancer that even today is still not fully characterized. When
she was experiencing all of this, searching online was no help. All renal oncocytoma
mentions were assuming it’s not metastatic, because the medical literature was no help, saying
this kind of cancer doesn’t spread. Similarly, the internet was no help for KC when she looked at
Chromophobe Kidney Cancer, because the resources for that also outlined treatment that maybe
didn’t apply in her case, because she didn’t have Chromophobe. As she was started on the medicine
suggested by the second cancer physician, KC’s tumors were observed to be shrinking in size. The
medicine that she received probably was the right treatment at the right time, for her particular
case, but a couple months into this treatment, KC started having bleeding problems again. In
the emergency room, again. Doctors look at KC’s medical record and note that that medicine she
was on, can cause severe hemorrhage. Given that she has a preexisting bleeding problem, this could
worsen her situation. The benefit of the medicine shrinking all of her tumors was weighed against
the risk of her having recurring bleeding, but as the cancer physician looked further, it
seemed those tumors have shrunken to the point where KC could stop the medicine, and be eligible
for surgery. At the research hospital, a large medical team were preparing themselves for this
rare surgical case . But this was all happening during the height of the global health situation
in 2021. The hospital didn’t have enough blood for her to do the surgery. If this is delayed, it may
be complicated to restart on the medicine again, and it could allow the tumors to start growing
again, and in a way that the medicine won’t work anymore. But luckily for KC, when she put an
announcement on social media, the local response for blood donations was simply overwhelming, as a
very large quantity of units suddenly became available for her. And as surgeons go in, KC’s right kidney and
the visible tumors on her liver were all removed in a 6-hour operation. When she returned home, her
blood pressure returned to how she remembered it years ago before this ordeal. No more resting
heart rate of someone running high intensity intervals. No more 3-day long headaches, and no
more strange abdominal pains before her period, as KC was able to regain full function again. My
name is Katie Coleman, I am the real Patient KC, and I am a Metastatic Renal Oncocytoma survivor.
Katie is the founder of the Chromophobe and Oncocytic Tumor Alliance COA. She’s also a
YouTuber, check out her channel here. I put a fundraiser tag on this video for COA and if
you contribute, it will be greatly appreciated. I’ll get the ball rolling. Thanks so much for
watching. Take care of yourself. And be well.
