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.