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IamA 33 year-old radiologist. Two months after I got engaged, I was diagnosed with a 1:1,000,000 incidence cancer. I've since been filleted open like a fish, had some of my insides removed, had kidney failure requiring dialysis, and was on blood t...
So, all of the stuff I said in the thread title is true. Since I'm a radiologist, I want to show you my proof of all this like doctors show other doctors cases. I've tried to remove the really technical words and replace them with words that everyone will understand. If you're a medical person and want to read it in its full, annoying doctor shorthand glory, check out my post in /r/medicine.
History of present illness: The patient is a 32 year old male with a history vague and intermittent abdominal pain for the past two years. He has no other significant medical problems. Previously, the pain had been easily controlled with intermittent use of over the counter medications, but in the last couple of weeks had become acutely more painful and the pain became persistently present. On the day of presentation, the pain localized to the right lower quadrant which prompted the emergency room visit.
Past medical/surgical history: Well controlled high blood pressure. Prior sebaceous cyst and wisdom tooth removals.
Meds/Allergies: Lisinopril 20 mg daily (blood pressure med). No know drug allergies.
Other history non-contributory.
Relevant labs: Sedementation rate and C-reactive protein, both generalized markers of inflammation, are markedly elevated. Mild low blood counts with hemoglobin (basically, red blood cells) just below the normal cut-off. All other labs normal.
Some brief information about radiology conventions: we diagnostic radiologists like to pretend we're real doctors, so we always "look at the patient" when reading studies. So basically it's like we're standing at the foot of the patient's bed and looking at them, in the same way that if you face someone and look to your left, you'll notice that's their right. So, functionally, left and right are reversed on our pictures. It starts to make sense after a while (but I now sometimes confuse left and right like a
kindergartner3-year-old. Thanks radiology!)We also have 3 major planes of imaging: axial, coronal, and sagittal. A picture, as they say, is worth a thousand words, so just look at this to understand what I'm talking about below, if it doesn't make sense.
And so without further ado, here's some proof of my shit-tastic disease:
Initial CT Scan
Axial CT at the level of the liver: Right from the get-go, things are looking grossly abnormal. There's organized fluid over the liver dome, which suggests it's thicker than just some water in the belly. There's some ill-defined, hazy shmutz (technical term) along the bottom curve of the stomach which is changing the appearance of the normal intra-abdominal fat. We radiologists say, "fat is your friend" because it looks black on CT. It helps separate out different structures so we can see where exactly something is. When there's too much white stuff on the black stuff, it tells us something isn't quite right.
Axial CT at the level of the kidneys: More belly fluid and possibly some enlarged/big lymph nodes along the major blood vessels. If you look just "above" the spine (it's really in front - think about those imaging planes), that's where the blood vessels run and, in general, the lymphatic system runs with the blood vessels. The lymphatic system is basically part of your immune system, so when lymph nodes get big, it means that your immune system is trying to fight something. So that's where we look for evidence of disease outside of the primary location it started. It's hard to see anything discreet/measurable because everything is kind of smushed together and covered with belly fluid, but there's a round, abnormal nodule near or in part of the small intestine.
Axial CT upper pelvis: The right colon is "jacked up," which is an official medical description. In all seriousness, though, there is a grossly abnormal appearance to the right sided large bowel, the colon, with significant wall thickening. See that big ugly circle thing on the left side of the picture (the radiology right side)? That's not normal at all. The bowel wall should be very thin, smooth, and uniform. Also, there's too much white stuff on the black stuff again in the middle of the belly. Something about it just doesn't look right after you've seen a bunch of normal scans and know what it's supposed to look like.
Axial CT mid-pelvis: Well, on the plus side, it's not appendicitis. That big arrow is pointing to a normal appendix. You may have to take my word for it, though. Again note the abnormal appearance of the colon.
Axial CT lower pelvis: This picture is lower down in the pelvis. Those big white things on either side are the pelvis bones. All that uniform appearing dark-ish stuff that's the same color as what the circle is drawn around is fluid. In a man, pelvic free fluid is never normal and should prompt a search for the underlying cause. In a woman, it's normal to see a small amount of free fluid. It's related to the menstrual cycle. But even this is way too much pelvic fluid for a woman, too.
One thing people, even other doctors, sometimes don't understand about radiology is that, we're not directly looking at jack squat. These pictures are just a really fancy density map of the body. The white parts were where a bunch of x-rays get absorbed. The black parts are where a bunch of x-rays can pass through the tissue without getting absorbed. Everything else is a shade of grey, and we can only tell you, really, about the relative differences in density.
Sometimes, that means we can make the diagnosis with great confidence. Radiologists call those "aunt minnies," because it's so obvious that even your Aunt Minnie can see the finding. But more often than not, things look the same. A lot of diseases from very different categories (i.e., malignancy/cancer versus inflammatory versus autoimmune versus vascular, etc.) can look the same. And so we, as radiologists, try to look at the pictures, evaluate them, and then say what it could be, preferably in order of probability. We call that the differential diagnosis. Other physicians do the exact same thing with people's stories and labs. We just do it from the pictures.
So hopefully that will drive home this point: When everybody (the ER, the GI doctors, the surgeons, and the radiologists) looked at the pictures, this was our differential diagnosis: (1) inflammatory bowel disease (things like Crohn's or ulcerative colitis) (2) inflammatory bowel disease (3) inflammatory bowel disease (4) something besides inflammatory bowel disease. That is how I would still read a case like this, quite frankly. And it made sense. Those things fit with my age and symptoms. I wasn't some old guy with a bunch of cancer risk factors. I was actually in okay shape, just overweight according to my BMI (probably just from my huge, arnold-style muscles, duh). I exercised a few times a week. I don't think that cancer was even on anybody's radar at the time.
So what do you do when they think there's something wrong in the colon? They shove a camera up your butt. I got to drink a gallon of what is basically salt water to clean it all out before they could take a look. That stuff is nasty. Anyway, the colonoscopy was... normal. So I thought I was good. We still had that nodule thing up in the small bowel near the stomach, but it's not all that rare for people to have benign tumors in their GI tract (meaning, the fact that they're there and that the grow is not normal, but they won't turn into cancer). No one could explain the right colon findings to my satisfaction, but hey - at least I didn't have Crohn's disease, right! Hooray!
Well, we still had that mass in or near the small bowel. They stuck another camera down my throat, through my stomach, into the small bowel. The camera also comes with an ultrasound probe on the end, too (nifty, right?), and so they looked at that thing really close up and were able to take samples of it with a small needle by using the ultrasound pictures to guide them. We sent that off to the lab for the pathologists (the experts in tissue, and the people who are the gold standard test for making any cancer diagnosis).
They also thought the CT scan didn't give them enough information, so they decided to get an MRI of the belly too. Just as an aside, CAT scan is like nails on a chalkboard to a radiologist. They're "computed tomography" scans. "See Tee scans." When you say CAT scan, this is what I think of. And so now you know. And that's half the battle, as those important childhood lessons learned from GI Joe remind us all.
Just a bit about our radiology tests, too. People think that x-rays are the worst, then CT is better than that, and then MRI is the best of all. I mean, kind of. Really, you use different modalities depending on what question you're trying to answer. X-rays are actually still the best first test for a suspected broken bone, for instance. As I said above, CT makes a density map of the body, and that's useful for a lot of things, actually, too many to list here.
But MRI is a bit different. In an MRI, we have a really strong, always-on (it's a superconducting magnet) magnetic field. It turns out that when you put protons into this field, just-over-half of them will "line up" in the direction of the magnetic field (the other slightly-fewer-than-half face the other way). Once we get everybody "facing the same way," we shoot a radio pulse into the protons. This basically knocks them over, and as they stand back up to face the way they were facing before, they send some radio wave energy back out, and we can listen for that. And the really neat trick is that protons stand back up at different rates depending on their environment, so a proton inside of a pathologic lesion is almost certainly going to "look" different than one in normal tissue. So it's a lot easier to tell apart tissues of juuuuuuust a little bit of difference. Radiologists call this "contrast resolution."
Anyway, here's what my MRI looked like:
Initial MRI
Axial fat-suppressed T2: Since we know what the fat signal is going to be (since we know how fast fat protons "stand back up"), we can send a signal into the scanner at the right time that's the exact opposite of the fat signal, and they cancel each other out. This is called "fat suppression." T2-weighted images a basically "fluid sensitive" images. If it's really bright on T2, it's probably fluid. So this is just proving that the stuff around the liver is fluid.
Axial fat-suppressed T2: The stuff in the pelvis is also fluid. Look how it fills the potential spaces on either side of the urinary bladder. This is bad news bears.
Axial C+ fat-suppressed LAVA: C+ means that these pictures were taken after they gave contrast. Contrast (as is probably obvious from the name) helps you differentiate between tissue types. It's generally related to the amount of blood flow to the lesion. Since tumors like to grow, and growing things need nutrients, tumors secrete proteins that tell your body to build new blood vessels to them. So, tumors usually light up after you give people contrast. There's an abnormal enhancing lesion along the lesser curvature of the stomach, helpfully demarcated by the measurement tool. Additionally, note the abnormal enhancement around the margin of the spleen along the lining of the abdominal cavity.
Axial C+ fat-suppressed LAVA: This is what that small bowel nodule looks like on MRI. It's a bit easier to define the margins. It's still unclear whether this is inside or outside of the bowel, but it's definitely abnormal.
Axial C+ fat-suppressed LAVA: Grossly abnormal thickening and enhancement of the right colon. Some of the enhancement along the surface of the abdominal cavity is normal, and some is abnormal. Trying to figure out the difference can be VERY tough on MRI. When you're not sure if it's normal or abnormal, the diffusion sequences can be very helpful. Self-respecting tumors will generally restrict diffusion, a concept I will explain presently. See below for more info.
Axial C+ fat-suppressed LAVA: Enhancing nodule or lymph node in the right pelvis. Again, some of the belly surface enhancement is probably abnormal, but it can be difficult to determine how much enhancement is too much.
Coronal C+ fat-suppressed LAVA: Just another picture of the nodule near the stomach/upper small bowel. You can also see the right colon, and the low signal fluid around the liver and spleen.
Axial diffusion weighted image: Okay, so what is diffusion. Well, normally, water molecules are free to move around in the extracellular space. When you have something that causes swelling (edema is the fancy word), there is not only more water present, but it's also usually jammed into the cells in the area, and therefore less able to move around. So when we send in those radio pulses and then listen for the echo, water that can't move keeps getting more and more energy, and so the signal is higher. Water that gets hit by the radiowave but then moves out of the spot we're listening to will have low signal. So it's helpful to identify true swelling/edema. This image is at the level of the right colon. All of the high signal in the right colon is abnormal, and we know it's not just T2 shine-through because the same area is also dark on the ADC map (T2 shine-through is bright on both).
Axial ADC map: Just to confirm the diffusion restriction. If you don't understand the whole DWI-ADC map relationship, that's okay. It doesn't really matter for the story.
Well, the biopsy results finally come back. The differential diagnosis for the way the stuff looked under the microscope is read by the pathologists as, "florid mesothelial hyperplasia versus peritoneal mesothelioma." I looked all of this crap up about 15 seconds after I got the phone call from the GI fellow with the results. I had never even heard of it, and I'm a freaking doctor. When you say, "mesothelioma," everyone thinks (1) asbestos exposure and (2) it's a lung cancer (technically, it's a cancer of the lining of the lung, but that's semantics).
When taken in conjunction with the MRI findings, this is highly concerning for malignant peritoneal mesothelioma. But they still weren't 100% sure, so we had to stick some cameras in my belly to take a look. They did that and took a bunch of samples. They were also doing it to see how much disease was in there (I mean, look at those pictures. There's some really fucked up shit going on inside me).
We didn't think I was a surgical candidate when all of this started. People who can't get the surgery and the cancer removed have an abysmal prognosis. Like, 6-18 months type of prognosis. Well fuck.
They have a system to estimate the extent of disease, called the peritoneal carcinomatosis index. It's a scale that goes from 0 to 39, and the bigger the number the worse it is. Based on the MRI , my index was 31/39. Almost all of the published literature and studies on this shows that patients above a PCI of ~12-13 don't do well. The final tissue diagnosis is malignant peritoneal mesothelioma, epitheliod subtype.
As luck would have it, there happens to be a team of oncologists where I'm training, both surgical and medical, that specializes in cancers that have spread to the abdominal surface. The team decided to try a two-step surgical approach, that was developed at Columbia in NYC, which has taken people with really bad disease and made their outcomes similar to those of people with lower PCIs. The general idea is this: get the worst of it out with a first debulking surgery. If there's anything there that's going to make the surgery really hard, or force the surgeon to remove an entire organ that they really kind of don't want to take out, they leave it. After the surgery, you do chemotherapy in the abdomen, and then later you go back in for a final surgery where the goal is to take out everything they see. With both of the surgeries, too, they do something called heated intraperitoneal chemotherapy (HIPEC). The idea is that, you can physically remove the bulky disease you can see, but there are probably microscopic cancer cells you gotta kill too. That's what the HIPEC is supposed to do.
So, we go to surgery. They took out my spleen, distal pancreas, gallbladder, right and transverse portions of my colon, all of the omentum (stuff that covers the bowel), and a bunch of the lining along my diaphragms (the muscles that move your lungs) and throughout the belly. It took them 12 hours to do the first surgery and HIPEC. Obviously, this is a huge ordeal and I'm in the intensive care unit for the first few days after surgery and everything hurts like a motherfucker. I learned during that hospitalization that Dilaudid is my homie. I don't know how I would have tolerated the pain without a drug that's basically as powerful as heroin. Also, I'm pretty sure I know how it feels to do heroin, so, thanks for that too, cancer.
They used cisplatin for the HIPEC procedure, and that drug is well-known for being very effective, but also for having the potential to trash your kidneys. I still to this day don't know exactly how this happened, but instead of getting just a dose to the inside of my abdomen and a tiny bit absorbed by the rest of my body, I get a fuckton absorbed by the rest of my body, and it pissed off my kidneys somethin' fierce, as we say in the south.
I went into acute kidney failure. They hoped that the injury would hit the peak of its badness and then I'd start to get better and my kidneys will start working again. It doesn't happen. After 4 days of continually worsening renal function, they decide I need dialysis. So we go down to interventional radiology (aka, IR) and they put a tunneled line exactly like this into my chest and right sided neck vein. The medical term is a "right internal jugular central venous catheter." To translate from "doctor" to "normal English speech," you need a big honkin' hose to be able to move enough blood to do dialysis. I ended up being in the hospital for about 10 days all together.
I figured I'd be on dialysis for a few days. Not a good event to have happen, obviously, but ultimately no big deal. Nope, it was way worse than that. I had to be dialized 5 days in a row in the hospital, and then we started doing it "only" three times a week. Even after I was discharged, I was on dialysis for two months until my kidneys recovered enough on their own that things like my electrolyte levels weren't getting out of whack anymore. You can die from fatal heart rhythms from having too much potassium in your body, for instance.
Another fun complication I had with all of this was a big ass clot where the catheter was in my vein. This happened maybe 4 days after I was discharged. It shouldn't have been a surprise, really. When you start listing the risk factors for blood clots, I had almost all of them: cancer, recent surgery, immobility, indwelling foreign device. My right arm felt tight all day, and then I looked in the mirror and noticed that the right side of my face was swollen. That little spot behind your collar bone where the skin kinda dips down was completely gone. It was puffed out the other way, actually. When I went to the ER, it was such a slam dunk diagnosis that they didn't even bother doing anything except starting me on blood thinners.
When you have blood clots like that, you can't wait around for the oral blood thinners to kick in. You have to start people on blood thinners that work right away, most often heparin. Doctors call this "bridging" someone. The thing that sucks about heparin is that there's no one dose that's great for everyone. You have to give it to people and then check a lab value related to clotting times (the PTT), and adjust the rate of heparin accordingly until you get the person to "their" dose. So basically you gotta get stuck a lot so they can test your blood.
I already have a one in a million cancer, but I also found out that day that heparin doesn't work on me. They kept giving me more and more and checking the labs all the time and they didn't budge, so they had to use a newer, way more expensive drug, and I was going to be in the hospital being "bridged" to the oral blood thinner (warfarin aka Coumadin). You can't safely discharge people until the warfarin is at a therapeutic level, so once again I was sitting in the hospital just waiting. Waiting for one freaking number to be above 2.
It took 6 days in the hospital to get there. The hospital is boring as fuck. The food sucks. You see your doctors for 3 minutes a day and then never again until the next day. They talk about you outside your room before they come in, and you can hear them. It was especially annoying for me, because I understood all the things they were talking about. Why wasn't I included in the discussion? I'm both the patient in question and a doctor.
Though, you get demoted real fucking fast when you put on that hospital gown. If you have any kind of title you worked hard for, and are proud of - things like captain, reverend, colonel, doctor, professor - and prefer to be addressed by, well, get used to "mister." All of the sudden, I was a "mister." Nurse practitioners fresh out of school (I'm 9 years down the medical education rabbit hole at this point) with less clinical experience than a third year medical student were calling me "mister." It was then that I realized I had truly become "the patient."
But, time's arrow moved, as it does, ever forward, and I finally got out of the hospital. I wasn't out of the hospital (for the second time) for more than a day or two before the next fun complication reared its head. There was a spot in my surgical wound which had always been little firmer than the rest of the tissue. Something wasn't quite right about it, but it looked okay and I didn't have any symptoms. But, on that day, I noticed that my shirt was soaked, and something didn't smell particularly good. The dressing of the wound was also soaked. I took it off to look at the wound, and it was pretty clear that it was infected.
We went back to the hospital. The surgery resident came and saw me. With big gross infected wounds like that, you can't just sew it back up. It will almost certainly get infected and form an abscess if you do that. No, open wounds have to heal by what doctors call "secondary intention" or, as I prefer to say, from the bottom up. You have to keep it open and let the tissue fill into the gap. But obviously you also want to clean it so it doesn't get infected again, so you shove wet gauze into it, let it try, then take it out and then repeat the process until it's healed. This is a "wet-to-dry" dressing, and every time you take it out, it removes some of the nasty crap from the wound and leaves only the good "beefy red" granulation tissue (what a delightful description, no?) .
When I say it was big and gross, it was. Actually, I'm a weird guy (duh, radiologist) so I took pictures of it as it healed. This is what it looked like the day after we opened it up in the office. My only regret is that I forgot to include a banana for scale. But, that smaller hole down inside the big hole is actually an opening right into the abdominal cavity. I could have stuck my finger down through that thing and touched my own intestines. I didn't, because that seems gross and also like a pretty bad idea, but I could have. It took this bad-boy about a month to heal up.
Also, with the open wound on my belly, and the dialysis catheter dangling out of the right side of my chest, I basically couldn't take a shower. I would sit on the edge of the tub and wash the important bits (you know what I'm talking about) and try to keep everything else as dry as possible. I don't know about you, but a nice shower in the morning is one of those small pleasures in life (right up there with the pee shivers after holding it in forever).
And sometimes, you don't appreciate things until they're gone. I sure as shit didn't appreciate things like, "not being in pain all the time" or "not throwing up bile every day because you actually still have your gallbladder." And, quite frankly, my previous good health. I took it as a given. I was only 32 when I was diagnosed. I'm not supposed to have any serious medical problems at that age. Certainly not something life-threatening. And certainly not something that's as likely, on a statistical level, as it is to have a major earthquake on the Hayward fault within the next 50 minutes and other rare things that almost certainly won't happen. This is not a go-to diagnosis. This is a, "what the actual fuck" diagnosis.
I finally thought I was doing better. I felt better. It was 3 months out from the surgery, and my wound had finally closed and I was finally able to eat okay and get calories in me and gain weight. I lost about 25 lbs from this ordeal and to this day I still find it very difficult to eat more than a small meal and put on weight. The silver lining, and perhaps something people might envy, is that I can eat whatever the hell I want and still look pretty good. I eat a ton of garbage food now in an attempt to gain weight. My last 3 dinners have been domino's, taco bell, and wendy's, for example. I'm scared I'm going to lose a bunch of weight again and look like nothing but skin and bones after the next surgery.
But the fun wasn't over yet! Remember how I said we were gonna do intra-abdominal chemo between surgeries? Well, we had started that at this point, and the way we were getting it into the belly was through what we call "ports." You may have heard about those before. They're usually used to have permanent, long term IV access in a safe way. They have a long tube that goes basically wherever you want it (vein, belly, whatever) connected to a hub or reservoir that they access with a needle, put in whatever med you're using, and then take the needle out. The reservoir is placed under the skin so they don't get infected (you access them with sterile technique). 1 picture == 1000 words.
Anyway, we placed two, initially. What were the odds that both would fail? Well, as you may be picking up by now, I'm one lucky motherfucker, because the one that was on the left side just stopped working and really hurt when they would attempt to flush it out with saline. So we stopped using that one. On the right, the stitches holding the reservoir failed, and the port started moving under the skin. Actually, it started tilting forward and pressing out on the skin. It actually really hurt.
One advantage I do have with all this is that I have better access to my doctors than the average bear. I have their work email addresses and pager numbers. So I got in touch and met up with my surgical oncologist. We both looked at it and agreed it needed to be revised, but it was a Friday evening when this took place. We planned on doing it early the next week. Instead, it eroded through the skin the next day. I got to enjoy that over the weekend.
And as you might imagine, once that happens it has to come out. And I had no access for the chemo I was supposed to get. So we went back to IR, took out both of the failed ports, and through something of a minor miracle, they were able to successfully place an intra-abdominal port in IR. All of us were skeptical it would work. One thing that happens after just about any belly surgery is that you get scar tissue in the belly. We call them adhesions. They prevent things from moving around as easily as they should, and can sometimes even cause bowel obstructions in people. One of the more common general surgery procedures, actually, is "lysis of adhesions" - they break up the adhesions from a prior surgery if they have to go back in for some reason. But the IR doc was able to sneak the catheter past all of that stuff and got it into position.
And that's basically where we're at. The most recent port problem happened about a month ago. I had to pack that one, too, but it was a lot smaller than the big wound and healed up in about 3 weeks. This thing really knocked me on my ass at a really inopportune time in my life. My now-wife and I had just gotten engaged on New Year's Eve, and I was diagnosed in early March of this year. I actually asked her if she was sure she wanted to "stay in the game" with me, so to speak. I would have understood if the answer was no. Truly I would have. This is fucking up her life almost as much as mine, at this point. But, and this is why I locked that shit down ASAP, my wife is the most amazing person I know. She told me to stop being a ridiculous idiot and that our wedding date was already set, so I'd better get to planning.
She is without question the love of my life.
Anyway, here are some fun stats you might not know about malignant peritoneal mesothelioma: it exists. The incidence is about one in a million. There are about 300 cases of this per year in the US. The average age of diagnosis is about 60. It's not as clearly related to asbestos exposure as the pleural variety. People with high PCIs generally don't do well, but that's often because they're not surgical candidates. The single most important factor for survival is the completeness of cytoreduction - if they can get all the disease out, people do better. You can go from a PCI of 39 to 0 with a good surgery.
The epitheliod subtype has the best outcomes (outside of an even more rare cystic variant which is almost always seen in women). There's also a sarcomatous variety and a mixed type, both of which do worse.
I have to take the radiology boards in November and then we go right back to surgery after that. It's unclear if I get to keep my stomach; I'll find out what they had to do to get rid of all the disease only after I wake up in the ICU. The thing that scares me the most about the next surgery is the possibility of another severe kidney injury which would probably put me on permanent dialysis. I'm now chronic kidney disease stage III (V is dialysis dependent, so I'm a bit over halfway there!). But I don't really have any underlying risk factors that would continue to degrade my kidney function, so I could do okay for a long time like that without another huge insult. Again, only time will tell. Feeling out of control of your life is very frustrating and scary, particularly for people like doctors who all think we're in total control of everything in life. Protip: we're not.
After the second surgery, I should be at a cytoreduction score of 0, meaning they got everything out. At least, that's the plan. After that, they want to do more chemo, but this time intravenous/system with a platinum based drug and pemetrexed, a derivative of methotrexate, and the only medicine FDA approved for mesothelioma.
One of the most famous guys in this field, Dr. Sugarbaker (the one in DC, not MD Anderson) put a series of 29 patients on a protocol of cytoreductive surgery, early post-operative intra-abdominal chemo, and then 6 cycles of cisplatin + long term intra-abdominal alimta. They're projecting their 10 year survival in those patients to be as high as 73%. I'm going to push my team to go in the same direction, if they'll offer that therapy to me.
It may sound stupidly optimistic, but I think I actually have a shot at a very good outcome. And I also think this has made me a better/more empathetic doctor. I understand now what patients go through. Little things matter to them/us. It's nice when people go out of their way to make sure your scan and your appointment are on the same day, for instance. It's even more important when you're talking to patients who drive 1-2 hours (or more) just to get to the hospital. They really appreciate stuff like that.
I learned that I need to go out of my way to introduce myself to people before you do a procedure on them. In a training hospital, often, the lower level residents go do the pre-procedure paperwork and the upper level residents just operate or do cases all day. Someone you have never met, whose name you don't know, may be sticking their hand (or at least a wire) into your body while you're unconscious. I met the surgical oncology fellow, for instance, as I was counting backwards from 10 falling asleep from the anesthesia. You know, that monstrous, 12 hour beast of a case that this whole thing has been about. In my head, I went, "Whatt thhhhhheeee fuuuuu [out]." I will never do a case on someone who doesn't know my name, and whose hand haven't shaken (well, unless the patient doesn't want to shake my hand).
I went into radiology specifically to do interventional radiology, but now I'm absolutely chomping at the bit to get back into the clinical world. I want to drop TACE and Y-90 beads (procedures to treat cancer that has started in or spread to the liver) into all kinds of bad things for people so they can give cancer the big "fuck you." I want to actively do things to help patients, like, all the time now. Not that I was a complete dick before or anything, but after this kind of experience, you just "get it."
Lastly, it also taught me that there's no time like the present to start living your life. I got married to the love of my life a couple weeks ago and we just got back from a super-kickass honeymoon. I plan on continuing to do awesome things with the people who matter until I literally can't get out of bed.
Fuck cancer, and ask me anything!
(And now I will shamelessly plug my scuba diving footage from the aforementioned honeymoon, just like those professors who put the pictures they took on vacation in their powerpoints. I actually worked really hard on it, so please check it out my friends!)
edit: Proof: https://i.imgur.com/J9poMIv.jpg
Iatros1603 karma
I basically feel fine at this point, can eat most anything, and can get around doing my activities of daily living without any problems. Some days, I kinda even forget I have it. I still get annoyed at the same shit I did before. Like inattentive drivers, for example. I still want to try to live my life. I have a very real shot at living 10+ years after my diagnosis.
The one thing that frustrates me still is that my anemia/low blood count hasn't gotten better. It really limits my ability to exercise. 4 flights of stairs and I'm huffin and puffin. Before this, I could run 3-4 miles straight with an average time around 8 minutes per mile. Now I can run 0.3 miles before I have to stop and walk, and going 1 mile takes me about 12 minutes.
But I look fine to the outside observer. So people just think I'm an out of shape sack of shit, haha.
Space_Cranberry47 karma
I know nothing, so this may be obvious to everyone else: if your count is so low, why can't they spin RBC out of blood and inject you with those?
Iatros144 karma
Unfortunately, my anemia/low blood count is probably due to multiple reasons.
First, I have iron deficiency anemia from all of this, so I need to replete my stores of iron which takes a while. You can only absorb so much at once.
Second, there's this thing called "anemia of chronic disease." Basically, people with chronic illnesses like cancer tend to become anemic, and the treatment is to treat the underlying disease. So we're still working on that part.
Third, one of the functions of the kidneys is to be a pressure sensor. If the pressure is too low (or too high) a bunch of physiologic changes kick in, and your kidneys secrete a molecule that stimulates your bone marrow to make red blood cells. My kidneys are half-fucked.
So I don't know if it will ever get better. Hopefully a year from now all of the treatment will be behind me, they'll say I have no evidence of disease, and I'll live my life from surveillance MRI to surveillance MRI. Hopefully at that point, at least some of those problems are fixed.
PugsterThePug1770 karma
Wow, thanks for doing this AMA! I have a two part question.
How long did it take you to write all that? And, do you think anyone is going to read it all?
Iatros1134 karma
Well, I had made a post with a lot of the imaging part already taken care of in /r/medicine earlier in the week, so that part was done. I basically then just took the original post, and one of my comments from the original thread and put them together. I guess in total, and to finally answer your question, 4-5 hours.
I don't know. I think I have an at least somewhat entertaining writing style. I really have no idea how interested or disinterested people will be with my story. I hope people read it, but I'm doing it for myself, most of all. Writing helps me express my feelings and organize my thoughts.
peduncles325 karma
Rad onc resident here. I read the whole thing. You are ridiculously brave. Thanks for writing everything out.
Iatros373 karma
While I most certainly thank you for your kind words, I do want to make one thing clear for people.
I'm not particularly brave. People keep calling me that, though. I don't get it. I'm just doing the only thing that gives me a chance in hell of living more than a year or two.
And, plenty of people with benign disease like Crohn's or MS are equally brave for dealing with their illness. Disease sucks. I want to wipe it out. Hence, doctor.
But anyone with the capacity for rational thought would do the same thing, if in my shoes.
AnesthetizedStudent861 karma
Dude, I'd just like to say thank you. Seriously. We often forget the humiliation and indignity that is suffered at our hands by our patients. Usually not intentionally, but as a necessary side product of getting the work of the service done. Thank you for having a sense of humility, self-deprecation, and perspective on your disease, your course, and your damned doctors who round outside of your door before talking to you. Thank you. And thank you for sharing your story in a way so many can follow along.
I'm a PGY3 anesthesia resident (we're weirdos and call ourselves CA2s), and that count backwards from 10 thing is a neat trick, huh? It's great, and it works well on non-popstars when administered by non-cardiologists.
And dilaudid. You can now say someone gave you the D. Did you by chance get an epidural or did you have contraindications to it not listed in your post? If you aren't coagulopathic (iatrogenically or otherwise), you may consider it before your next laparotomy if it's applicable. Clinical correlation required.
Iatros221 karma
We do the same thing. R1 = PGY-2. It's not confusing at all. Especially to laypeople who think we're still in medical school, haha.
I wasn't offered an epidural. Would that be in addition to general anesthesia? I would assume so. I'll ask them about it. Because, as luck would have it, I get to do this all over again! Hooray!
asclepius-crushes130 karma
This will likely be buried, but /u/Iatros I really appreciate your resolve to be a more patient focused doctor. Cancer is scary as fuck. It's a broad and complex disease and most patients don't have any real understanding of it.
My mom died at 27 of a diffuse gastric carcinoma. Over the years of preventive checkups, I've had doctors who've cared about making me comfortable and those who haven't. As a patient, I can't tell you how much difference it makes to have a doctor take an extra five minutes to explain the purpose of a procedure or what hereditary mutations are or even what your favorite sports team is.
Doctors like these -- Sloan Kettering comes to mind -- are the reason I'm going to pursue medicine. If I end up having to fight this shitty disease, I hope I can do it with half the knowledge and humor that you have.
All the best.
Edit: I doubt it's applicable in your case (given the rarity of peritoneal mesothelioma) but what are your thoughts about CRISPR and using bioengineering as preventive measures against cancer?
Iatros29 karma
Wow, that sucks dude. I'm really sorry to hear about your mom. That's incredibly young to have such a terrible diagnosis.
And good luck man. Medicine is getting harder and harder to get into, too. Like, I don't think they'd let me in anymore, haha. But if you're willing to work hard for it, anyone can do it (I think, anyway).
CRISPR, at least as I understand it, its going to make it easier to do things like the chimeric antigen receptor T-cell therapy, but it itself is not a new mechanism of therapy. Just a better way to edit the genome more precisely. I say "just," but clearly that's a very important development in and of itself.
I hope that it accelerates the pace of new immunotherapy and CAR T-cell therapy. They are working on things targeting the mesothelin protein which is overexpressed in certain cancers, and highly overexpressed in my particular variety.
So, basically, I see the surgery as kicking the can down the road a bit. If I can make it 10 or 15 years, hopefully medical therapy can catch up and either control or cure my disease.
Iatros1158 karma
Yeah, no problems there since about a month out from surgery. You really wanna get into the weird questions, eh? Let's do it.
Erections were painful for a while after surgery. For about 2 weeks after the surgery, I basically didn't think about sex or anything remotely related to it. When my sex drive started working again, finally, it really hurt. It took a couple days of trying to do it more and more until it stopped hurting.
I think it was painful from not being utilized for 2-3 weeks. So, guys, let this be a lesson to you. Use it or lose it.
veryfancycoffee19 karma
Something that i have always wanted to ask/ know is how chemo can affect your chances of pregnancy.
I realize you have went through a shit tater tastrophe but have you thought about having kids or what you would do if ur wife is now prefnant?
Iatros106 karma
We put a few samples in the sperm bank just in case.
We can't get pregnant while I'm on chemo (seems obvious but you really gotta spell it out for a lot of people), or for a year after the completion of chemotherapy. That's how you get a flipper baby.
But, and clearly I need literally every one of you to cross their fingers for me, if the remainder of the treatment goes according to plan, we'll be done sometime in the spring of 2017. I'm going to be in fellowship until the fall of 2018, maybe even until December. It's better than sitting out a whole year and trying to match again.
So one day I'll stroll into work and be a fellow and not a resident. Functionally, it will be a normal workday.
Anyway, all this is to say, we don't have the precise timing down yet, but we can start trying again sometime in the spring of 2018.
I haven't asked the question about whether I should get genetic counseling, but I'd definitely push for it. I won't saddle my kids with some terrible mutation, even if we have to use a sperm donor. I'll still be their dad in every way that matters.
-Utuxi-192 karma
I read it all :)
I hope all the treatment goes well and that you get better. But above all, I hope that you enjoy your life in the moment. After all, at least you'll probably know when it's coming. Many people think they have 80 more years, but then die the next day having lived reserved and without vigor, without cherishing the now, without coming to terms with this world. You won't be one of those people, after this experience, whether you defeat cancer or not. You've got that rapture. I can feel it through however many miles.
I have a couple of questions for you :P
1)What's something kewl about you that has nothing to do with hospitals or doctors, that you'd like to share?
2)How did you meet your wife, if you don't mind my asking?
Thanks in advanced stranger :)
Edit: mixed up husband and wife
Iatros349 karma
Living in the moment is definitely learned skill. One big aspect of it is to stop thinking about how great things will be in the future. I used to do that too, say things like, "I'll be happy when [whatever]." Stop. Think about what's happening now, right in front of your face. Live in the now. I've tried to do that, and it has made my day to day life richer.
- Scuba diving is fucking awesome. It's like an adventure where you get the chance to meditate for 45 minutes to an hour underwater while looking as some of the most beautiful sights earth has to offer. If you've ever been curious about it but have never tried it, you should. It's really cool.
- She was one of the x-ray techs in the radiology department. I had a huge crush on her for a long time. But I planned on doing precisely 0 about it. I didn't know if she was interested, and I didn't want to be labeled as "that weird resident who asked me out. Eww." But, finally, one of our mutual friends stopped me one day and asked me why I hadn't asked her out. I told her just what I said. She told me that my now-wife was "really interested" too, and so the next day I asked her out. I knew we'd get married on our first date. We're jig-saw pieces that fit together perfectly.
trilobot17 karma
I've always wanted to try SCUBA diving but have had three obstacles in my way.
I'm poor.
I live in a place where the ocean is usually 2 degrees - like all cold water, this makes it teeming with life. Dirty, filthy, murky, everything is a shade of brown and vomit, life. Frozen, miserable, murky, smelly, ocean.
I was born with bilateral choanal atresia and for much of my childhood merely putting my head underwater put fluids in holes I didn't want them and they'd stay there and they'd hurt and I'd get an infection.
So I've avoided water. I'm 29 now, though, and my head is fully grown I think. No more surgeries on it at least. I've an opportunity to go on a trip to Bermuda with some other geologists next year, but I'll need to learn to dive (I can swim - and keep my hair dry while I'm at it - well enough). Convince me because I'm kinda scared.
And as a note, your revelations on bedside manner made me happy. I vividly remember one of my rounds of nasal stents and a million fingers poking at my very sore face, and not one name attached to them. Waking up in a pool of blood in tears only for some faceless hospital flunkie (they all look the same in those scrubs) to show up with fresh sheets, the world's smallest cup of water (seriously what's with not giving me water? The surgery was over! I could have filled that waxed paper thimble three times over with my 9 year old child's tears I was leaking), and not a comforting word to be given. Didn't even wake my (i imagine very tired) mother up. Absolute hell. Being a patient is an experience only understood from that side of things (as I imagine is the same for being the medical professional) and when you're scared, disoriented, and very sore ... yeah you notice all the little things that the professionals seem to forget about.
Iatros21 karma
seriously what's with not giving me water?
Oh wow, thank you for reminding me of this. I know exactly what that's like. That absolutely desperate thirst for water when you're really dehydrated.
I've forgotten a lot about what happened in the ICU, but you remind me that, when my kidneys were failing and all of my electrolytes started getting out of whack (like, life-threateningly out of whack), they had to put me on very strict fluid restriction.
If your sodium level is low, and you drink a ton more water, you just dilute your total body sodium. So you want to do the opposite. Change the denominator, so to speak. You restrict their fluid so, hopefully, they pee off the extra water and the sodium level comes back to normal.
There's more to it than that. Most medicine doctors are very cautious when correcting sodium because you can literally kill someone if you correct it too fast. Like, the thing you write in the chart, if it's wrong, would be the immediate and proximate cause of their death. And you just signed your name to it. It's kinda confusing too. Indeed, sodium repletion is the bane of many medical resident's existence, when the attending starts asking too many questions.
That practice is know as "pimping," by the way. Asking your trainee questions until they don't know something, and then make them feel bad for not knowing it. It's my single most favorite game in all of medical education. But I do digress.
A consequence of my renal failure, combined with my drinking a lot of water, resulted in low sodium, and so they had to put me on fluid restriction. I'd have to look it up to be sure, but I think the worst it ever was fluid restricted to one liter a day.
I will be eternally grateful to my good friend Diluadid for preventing formation of long term memories of the ICU. I mostly just remember the feel, and a few of the particularly shitty moments.
Sorry to ramble. I know I talk a lot. Just trying to set the scene, as it were. I'll try to get to the point here.
I have never in my life been more desperate for water. And not just like, "hey I worked out and gosh darnit I'm thirsty" thirsty. I mean thirsty. Literally desperate for water. I remember literally begging them to let me drink more water. I would have done just about anything for a glass of water. I hope no one ever has to experience that feeling.
noaoh153 karma
Do you think your job as a radiologist played any role in developing the cancer? I mean you're near x-rays and all that all the time.
Iatros342 karma
No. The dose that radiologists get, even interventional radiologists who literally do work next to live x-rays every day, is well below the yearly upper limit defined by the NRC for a radiation worker.
We wear two badges that track our exposure. Most IRs wear a radiation detector ring, too. And we're always wearing lead. And the table has a lead skirt and a movable shield to block the scattered x-rays from hitting us. And the energy level of the x-rays falls off with the inverse square of distance.
Believe me, minimizing radiation exposure is something radiologists and radiology departments/hospitals take very seriously.
Healing_touch131 karma
Hi! First of all this absolutely horrible and so so so scary. As a cancer survivor (just got the word I'm in remission in July!) I understand some of what you're going through and I'm here if you ever want to chit chat.
If you ever got a chance, what is the main thing you'd want people to know about your experience? What is the one question you're tired of answering? Favorite food?
Thank you for doing this AMA! Sending love your way
Iatros172 karma
Ahhh, remission. Congratulations my friend. I'm sure you clawed your way though the heaping pile of suck that is the treatment process.
I guess the thing I'd want people to know the most is that you gotta start living your life and taking advantage of every day, because none of us know when shit's gonna happen. Don't only worry about the future. Live in the now a little bit, too.
"How are you doing?" uuuuuuuuggggghhhhhhhh. It's almost always followed up by "well you look great!" It's not that I mind telling people about it. I mean, did you see the length of that OP? Shut the hell up already dude.
But, it gets boring having the same conversation with people over and over and over and over. Also, people kinda don't want to hear about the bad days. When was the last time you asked someone how their day was, and they went, "you know what, it's pretty shitty for these reasons." No, people want to hear that you're fine and that things are going well. And they get real fucking weird when you start talking about the shitty parts of it. So I just tell people I'm doing "fine these days."
And, lastly, pizza by a wide margin. I could eat pizza every day for the rest of my life and be totally fine with it.
Plus there's the very real chance that the rest of my life isn't all that long, so I don't think I'd have enough time to get tired of pizza.
Healing_touch55 karma
The thing that got me is that people said "well you look too good to have cancer! You still have your hair" okayyyyyyyy I'm sure my oncologist is so wrong about my diagnosis. I feel you on that. ):
I'm sorry you're suffering and dealing with all this. I wish I had something eloquent to say but I don't. I do however have an amazing pizza recipe if you'd like.
Iatros50 karma
I do however have an amazing pizza recipe if you'd like.
Cool! I do too, actually. I make homemade pizza almost every weekend. That's the real reason my BMI was in the "overweight" category before all this happened.
But anyway! Let's have us a good old fashioned recipe swap!
I'll go first. In a large mixing bowel, mix 1/2 cup of lukewarm water, 2 and 1/4 teaspoons yeast and 1 teaspoon salt until homogenous. Add 3 and 2/3 cups unbleached flour, 1 cup of milk, and 2 tablespoons of olive oil to the bowel and stir/knead together until you have a nice, well-kneaded wad of dough. By the way, my kitchen aid mixer? Changed my life. You turn it on and 3 minutes later it's ready to go. If you have a mixer with a dough hook, use it.
Let it rise in a warm, dark place (microwave is what I use) for at least an hour, but if you can wait longer and let it rise more, the crust tastes fluffier and fluffier. Only to a point though, anything too much over 8 hours and it starts to collapse back down and is a bit harder to work with (but still tastes good).
Roll it out, top as you so desire, then bake at 450 for 15-17 min. Take a look at 15, see if it's done enough for your preferences.
Boom. Mike drop. :wearing-sunglasses-emoji:
edit: left out the word yeast. Seems important to the recipe. Decided to leave the bowel.
linderpreet128 karma
32 year old anesthesiology resident checking in. Not nearly the same in terms of acuity, but I've had (fucking severe) Crohn's for 17 years, and doing this job while being sick sucks donkey balls. Especially the last couple of months (my soon-to-be-ex-husband, a surgery resident, announced our divorce because I am "too sick to be a good wife". Which blows, because I clearly would much rather not have an H&H of 8/23, but fuck me, right?)
Anyway, just wanted to say, I feel you (kind of), you're tough as shit, and I hope you keep your chin up and whip cancer's ass. :hug:
Iatros64 karma
"too sick to be a good wife".
Oh man. I'm really sorry to hear that. I totally get it, the whole "it's not my fault I'm sick" aspect.
Your story just drives home, for me, how lucky I am to have found someone who I love more than I thought it was possible to love someone else. She was a source of unending strength throughout it. Her parents were, too, actually. It's nice to really, actually enjoy the company of your in-laws.
But, I'll tell you this. I would much rather have faced this alone than spend the time and emotional energy worrying about a failing relationship while also being sick.
Being sick is a full time fucking job (ask me how I really feel, huh?). And it sucks.
In no particular order:
You have no control. You're sick, and for someone like me, you don't even really have a choice. There aren't two equally legitimate and efficacious treatments. I just gotta plow ahead and do what they say.
When you're admitted, things work on the hospital's schedule, and otherwise fuck you. If they, the hospital, couldn't get your CT scan done while you were awake, don't worry. They scan 24/7. They'll wake your ass up at 3:30 in the morning to get the scan done. Eating lunch but transport is here to take you to [wherever you're going]? Well, lunch is now over.
You're just the next case for people. The next patient they have to see on rounds. Sometimes, you really can tell when people are rushing to get the work done. Residents are the worst about this.
People come in and out of your room all day long. Changing clothes? Be quick about it so they don't come in when you're butt naked. You'll only see the decision-makers, your doctors, once a day for at most ~5-10 minutes (and 10 is really pushing it). But, don't fret - you won't be lonely. The chaplin will stop by. Then the social worker. Then the next social worker. Then the case manager. Then your nurse to shove meds down your gullet. Then physical therapy to make you walk around the hall. Then respiratory therapy to come in and tell you to use your incentive spirometer. etc. There is an unending stream of people in and out of your room, and you have the discussion when it's convenient for them, not you.
There's also just the generalized loss of control of your life. My kidneys almost died. Just gotta roll with it. Wound dehiscence? Bend over my friend. etc.
Hospital food tastes like ass
The hospital is boring as fuck. Even when you go to your doctor's appointments as an outpatient, it's a game of hurry up and wait.
You're constantly getting poked and prodded, and it gets really old. Unfortunately, they have to run pretty frequent blood tests on people when they're sick. So you get stuck a lot in the hospital. Before this I couldn't even watch the needle go in my skin. Now I just stare at the approach the nurse is taking and try to predict if they're gonna get it on the first try or not. Even when you're not admitted you're coming in for chemo or doctor's visits and they're starting IVs and drawing blood. It's this constant, unending low level annoyance. It's hard to not let that get to you. It was even worse when I was still on warfarin - I was going to doctor's appointments 3x a week for 3 months. It just puts you in a bad mood all the time.
You can never not think about what's going on. You can't take a break from being sick.
killerontherun1106 karma
When one detaches from the physical body like you will eventually have to, given your situation, there is an apparent clarity that art, books, experiences etc speak of.
Have you felt any of it?
Edit: I skipped the details by the way. I assumed your title was true given your citations and the effort you seem to have put in for the post. Just curious about the clarity part.
Iatros239 karma
There was definitely a large aspect of re-examining by belief structure. I was raised Catholic but always thought it was kind of bullshit. I became one of those very outspoken (read: annoying) atheists when I was in college. I was kind of insufferable back then.
But seeing people find strength and comfort in religion during medical school, and having to interact with people from all different backgrounds made me at least respect religion. I didn't believe it, but I didn't try to convince others of my position. I just shut up about it all together.
I did feel something was missing, spiritually, but I planned on using the next 50+ years of my life to figure it out so that I could find some sort of meaning to life, whatever that meant.
Well, I had to fast forward the shit out of that plan. To make a very long story short, after much seeking and reading and thinking and (honestly) praying, I do think there's a higher being out there and that more awaits us after this life. I get the sense that all he/it cares about is how we treat other people. All of the church stuff is cool too, if that's your bag, but I don't think you have to have that to be able to talk to whatever that higher power is. I still feel weird saying "God."
I could be wrong, and I don't know for sure. But I have the feeling of belief on the inside, which is something I've never felt before.
killerontherun172 karma
Im Christian and I went through similar phases too. Although that's an interesting angle I was talking more about an every day sense. In your behaviour to every day things and interactions with people.
Iatros79 karma
Not sure why people are downvoting this question.
The overarching world view and the day-to-day stuff go hand in hand for me. It reminds me, constantly, many times a day, that I need to treat others like I want to be treated.
I think about that all day now, and I think about whether or not the action(s) I'm planning on taking will make a positive impact on people or not. If not, don't do it. I try to be more patient with things. I try to see an argument with someone that pisses me off from the other person's perspective so I can understand why they feel that way, and whether it might actually be my fault in the first place. Etc.
dissenter_the_dragon85 karma
Who was better; Biggie or Pac?
edit: I hate Reddit sometimes. "lets downvote this question because we don't feel asking a question about music is OK when someone says 'ask me anything' "
edit 2: Reddit's cool. Like a lot of people, I let 3 or 4 anonymous people color the way I saw thousands and thousands of people.
Iatros53 karma
I'd have to take your advice on who's better. I'm not a big rap guy. And I was that weird kid that only listened to his parents music (oldies and classic rock) while growing up.
I didn't actually get into newer music all that much until I finally decided to get Spotify. Now I love groups like Cage the Elephant, Broken Bells, Portugal. The man, and similar artists.
applebottomdude46 karma
Absolutely sucks to go through that training and have that happen. How is the combination of medical bills and student loans effecting things? Did you already have insurance incase you are not able to practice, and if so when did you get it? Resident, fellow, first job? I'm imagining just how horrible it would be to be stuck as an m3 or 4 or a resident with all that debt and them not be able to finish a program.
Iatros216 karma
The medical school debt is something I've been putting off repaying until after residency. You can do that if you want, though annoyingly the interest is capitalized every year. At 6.8% no less, which is a garbage interest rate. But they know they've pretty much got us by the short and curlies. Who on earth is going to give you a $200,000 personal loan? No one.
Luckily, too, my program has been super awesome. They have helped me get as much time off as I need to take care of this. They're going to let me extend residency as long as I need to so I can still graduate and finally be a real, independently practicing big-boy doctor (it only took a decade!).
But the thing that means the most to me as far as that part goes is this: I was in the process of interviewing for IR fellowships when all of this started, and I basically had to withdraw all of my applications. My department chair went to the right people at the hospital and advocated for me, just one of his residents that he didn't even know particularly well.
They were able to secure me a fellowship spot at my home institution, to start basically whenever I'm ready. I will be eternally grateful to them for that.
And we have pretty great insurance as residents, so my yearly out of pocket maximum is only $2000. And all of the residents/attendings here at my program made a gofundme campaign and raised like 1000x more money than I expected it would. I was blown away by the generosity of my colleagues.
And luckily, a lot of them get paid like big boy doctors, which was reflected in the donations.
Jeshiii46 karma
I genuinely found this really interesting and read from start to finish! Your positivity is great and I love that you made this understandable to a lay person whilst also including the interesting (and gory) details too! I've just finished a Masters and my focus is Genomics (genetics) Is there a genetic risk with this type of cancer or has there not currently been enough research into the cancer type to know that?
Iatros33 karma
We sent off my cancer for all the molecular tests looking for targetable mutations. By that I mean, they tested it to see if certain mutations had happened in my cancer for which there may already be FDA approved drugs.
There weren't any.
And, this is such a rare disease that it's hard to study. There's not a lot of data. And frankly, if you have a fininte number of dollars to spend on cancer research, it really probably should go to things like breast/prostate cancer, lung cancer, and colon cancer. Those are orders of magnitude more prevalent.
AmVxrus45 karma
Am a cancer researcher here, although I can't prove it without giving away seriously personal information. When you said 1:1,000,000 incidence cancer, what cancer was it? Also, what is the treatment for it? I'm curious, as my thesis I'm working on deals with rare cancers and their special oncogenes associated with them.
Iatros99 karma
- Peritoneal mesothelioma
- Cytoreductive surgery, HIPEC, and then a combination of intra-peritoneal and intravenous chemotherapy.
My OP, although I understand it's an intimidating wall of text, has more details on everything.
Iatros36 karma
Yeah, fantastic book. He is a great writer, far better than my ineloquent and sometimes crude manner of writing.
That dude was a rockstar, too. Kind of a genius it sounds like. He was gonna run his own neuroscience lab at Stanford, and be a practicing neurosurgeon, and write all kinds of papers, and do all kinds of research.
I'm going to try to graduate from radiology school and get a job at a local hospital and be a grunt in the medical trenches.
Honestly, if we were trying to maximize what's best for the world, he and I would have swapped diseases.
pm_me_super_secrets27 karma
What do you think about immunotherapy? Seems like chemo and radiation have awful side effects.
Iatros40 karma
Lots of promise. The premise seems logical, and it has worked for other diseases, particularly leukemias/lymphomas. The unknown unknowns of immunotherapy are the problem. Is drug X going to have horrible side effects? Is drug Y even effective for this type of cancer? Who knows? Let's see what happens when we give it to people. Et cetera. It's not a magic bullet. These drugs have side effects, sometimes even fatal side effects, just like chemotherapy.
Basically, it needs more research but is very promising.
edit: just to add a factoid
Iatros51 karma
Because having all of this images and being able to explain them, and having the pictures of my open abdominal wounds, was insufficient proof. Apparently.
But whatever, the OP is now updated with definitive proof.
AlwaysInBeastMode22 karma
I viewed the pictures and skimmed the words. Impressive write up. So, at the end, are you implying you won't make it? If so, what is one thing you want to do before then? If you're recovering, what was the lowest and highest points?
Iatros81 karma
I don't know if I'll "make it." I think I have a very reasonable chance to do well. They've been making huge increases in survival for people with my disease who can get a good surgery and remove all of it, and there have been people that have lived 15+ years after their diagnosis. So I'm hopeful. I also hope I can just kick the can down the road a bit and let medical therapy catch up (immunotherapy trials, the new CAR T-cell stuff with CRISPR, etc).
I want to travel and see as much of the world as I can.
High points: every hospital discharge. Low points: every hospital admission. Well, I also finally had it with all the fucking complications when the port eroded through my skin. I definitely felt like a horse with a broken leg at that point. Time for the glue factory.
Kozzle10 karma
I never quite understood the timeline for survival rates...when you say a reasonable chance at 15+ years survival does that mean your likelihood of living to 20+ years is substantially reduced? Do you essentially (statistically speaking) have a significantly reduced life expectancy?
Iatros23 karma
Survival rates are obtained at a statistical, population level. Most doctors, certainly most oncologists, wouldn't prognosticate about how long any individual patient will live with there disease.
They don't go, "you have 18 months to live" like it's gospel truth or anything.
They go, "well, the 18 month survival rate is 50%." That just means that when you look at the population of people who have that disease at that stage, half will be dead in 18 months. There's no way to know, or even predict, really, when it's your time.
Will_Colby22 karma
Hey there, I wish you the best with your recovery and life in general, my question to you is what are some of these awesome things you are planning on doing?
EDIT: LOVE THE CIV 4 MUSIC!
Iatros36 karma
I want to travel with my wife and see as much of the world as we can. I want to start a family (and yes, my wife and I have had extensive discussions about the wisdom or lack thereof in doing that). I want to finish residency and fellowship and practice as an attending for a while. I want to keep going to see lots of live music.
But more than anything I want to spend as many of the days I have left in the company of the people I love.
tealgreen21 karma
that was a good read, you removing it permanently or just temporarily to make some changes?
Iatros22 karma
Nah, they just wanted more proof that it was actually me, which I provided.
PerilousAll18 karma
From the perspective of how you are handling your condition, do you think you are better off or worse off than someone who doesn't have a medical background and truly understand all of the terminology and implications?
Iatros57 karma
For sure in a way better position.
First of all, my doctors can cut out the layperson talk and we can talk in our doctor words, so everyone is on the same page as far as understanding of the disease and treatment options.
Second, I know enough to know when to advocate for myself. There have been times they've wanted to order a test and I go, "Why? It's not going to change what we're doing." And so we will skip stupid and unnecessary things.
Third, I understand how the process works. No one had to explain to me why the first biopsy was insufficient for making the diagnosis. I knew exactly what I was getting when they placed that tunneled line. Hell, I've placed them in people myself.
Forth, I've been able to catch mistakes and not let them be carried forward. When I was discharged from the hospital the first time, for instance, they fucked up big time. So one of the things you have to do when discharging someone is to look at the list of meds they were on before, look at what they're getting in the hospital, and then reconcile those two things so the patient knows what meds to take.
Well, the NP who discharged me did a piss poor job of that. I was on dialysis, and the kidney doctors themselves wrote in the chart that I was to stop taking the blood pressure medicine I was on, because it can make the renal failure worse. This is actually very well known in all of medicine. I'd expect a second year medical student who is taking pharmacology to know that.
I looked at my med list, and right there at the top it say lisinopril 20 mg daily. That's not a single hand facepalm mistake. That's a solid two-handed-faceplam level of fuck up. I knew enough to not take that medicine, but would almost anyone else? Of course not.
I told my surgeon and he apparently went on the warpath with that. So I think they've improved their process a bit.
Fifth, I can look at my own images! Woooooo!
erure16 karma
Wow, thank you for writing up that post. I have some questions:
How are you feeling today? Any cool plans for today besides this dope AMA?
How did you decide on radiology as your specialty? I'm an MS2 and have no idea what I want to do so any insight/advice would be very appreciated.
You mentioned that people addressed you as mister rather than doctor. So people did that even though it said Dr. Iatros on your chart? Did you correct them?
What did you use to take that awesome video of the scuba dive?! Apologies if you mentioned it somewhere already and I didn't catch it.
Again, thanks for your post and doing this AMA. I hope everything works out well for you and good luck with your board exam!!
Iatros21 karma
Pretty good, actually. I have a lot more good days than bad now. But we start chemotherapy again on Monday, and I'm sure I'll be feeling vaguely bad again here soon! No specific plans though.
Check out my comment history. You'll probably have to go back pretty far because I've been answering a lot of questions, but I've writing a bunch of stuff about radiology. If you still have questions after that, shoot me a PM.
Ha, I want to say, "Mr. Iatros is my dad. I'm Dr. Iatros." But no, I don't correct them. What's the point? It just makes me look petty. It doesn't do anything to strengthen the doctor-patient relationship. And maybe it is petty, but it's just one of those things that annoys me.
GoPro 4 black, with two 1100 lumen dive lights on the night dive. And thanks! I'm glad you liked it.
SirNoobcelot15 karma
As a doctor that doesn't really check r/medicine for some reason I want to thank you for this beautiful write up. It gives a lot of insight. hang in there brother; you don't need a miracle, you have good chances of living a long time after this. You just need to hang on, even when you feel like giving up.
My Question: Is there any treatment course or procedures that you think would've been better for you?
Iatros10 karma
No, this is the standard of care. Most people with this just get one surgery + HIPEC.
I get to have twice the fun!
Hornfreak14 karma
I read it all, you have a very interesting story and I wish you the best.
As you spent a lot of time in hospital, what are things you want to see from hospital staff that would have made your stay better? What things frustrated you during your experience as "the patient"?
Iatros19 karma
The hospital staff were pretty great. Almost everyone was super nice. There were a few people who clearly didn't like their job. Honestly, just treating us like normal people is nice. Everyone fucking tiptoes through the tulips with the words they use around me now. Guys, I'm not dead yet. Chill the fuck out.
Things that suck about patienthood, in no particular order:
You have no control. You're sick, and for someone like me, you don't even really have a choice. There aren't two equally legitimate and efficacious treatments. I just gotta plow ahead and do what they say.
When you're admitted, things work on the hospital's schedule, and otherwise fuck you. If they, the hospital, couldn't get your CT scan done while you were awake, don't worry. They scan 24/7. They'll wake your ass up at 3:30 in the morning to get the scan done. Eating lunch but transport is here to take you to [wherever you're going]? Well, lunch is now over.
You're just the next case for people. The next patient they have to see on rounds. Sometimes, you really can tell when people are rushing to get the work done. Residents are the worst about this.
People come in and out of your room all day long. Changing clothes? Be quick about it so they don't come in when you're butt naked. You'll only see the decision-makers, your doctors, once a day for at most ~5-10 minutes (and 10 is really pushing it). But, don't fret - you won't be lonely. The chaplin will stop by. Then the social worker. Then the next social worker. Then the case manager. Then your nurse to shove meds down your gullet. Then physical therapy to make you walk around the hall. Then respiratory therapy to come in and tell you to use your incentive spirometer. etc. There is an unending stream of people in and out of your room, and you have the discussion when it's convenient for them, not you.
There's also just the generalized loss of control of your life. My kidneys almost died. Just gotta roll with it. Wound dehiscence? Bend over my friend. etc.
Hospital food tastes like ass
The hospital is boring as fuck. Even when you go to your doctor's appointments as an outpatient, it's a game of hurry up and wait.
You're constantly getting poked and prodded, and it gets really old. Unfortunately, they have to run pretty frequent blood tests on people when they're sick. So you get stuck a lot in the hospital. Before this I couldn't even watch the needle go in my skin. Now I just stare at the approach the nurse is taking and try to predict if they're gonna get it on the first try or not. Even when you're not admitted you're coming in for chemo or doctor's visits and they're starting IVs and drawing blood. It's this constant, unending low level annoyance. It's hard to not let that get to you. It was even worse when I was still on warfarin - I was going to doctor's appointments 3x a week for 3 months. It just puts you in a bad mood all the time.
You can never not think about what's going on. You can't take a break from being sick.
Ceej170114 karma
Hi Dr. Iatros! RN here. Just wanted to tell you your story blew me away when I saw it on r/medicine. I loved that you presented the case and then said it was you. Honestly moved me to tears.
Caring for a doctor is intimidating to many nurses. It's difficult to treat you like a patient and a doctor at the same time. Can you give any examples of things you'd wish nurses would or wouldn't do?
Iatros13 karma
I never thought of it like that. I see nurses as being way more competent at the actual caring for patients. I never thought it could be intimidating.
Well, I go out of my way to be nice to people and not act like the typical arrogant know-it-all doctor. Even though I think that stereotype isn't really accurate. Ever notice how people don't like doctors, but they like their doctor?
Most of us really do want to help people. Medical education sucks ass and no one would sign up for 7-14 years of training just for the money. You have to have some level of compassion and concern for your fellow man. If you just want dinero, there are way better jobs for that. Most with way better hours, too.
But that sets the stage for a good relationship. I think that's what it comes down to more than anything else. That's true of any human-human interaction though. Just don't be a dick. It's not that hard.
Some of the nurses spent 5 minutes just talking to me after they had already come in to do their job (get blood, give meds, whatever). Others came in, did their work as fast as possible, and then peaced out.
Certainly, physicians of all people know what it's like to be super fucking busy all the time. So, I understand and I don't get mad about it. But, it really doesn't slow you down that much to just be a normal human being with your patient for 2-3 minutes.
I try to do this with all my patients now, too. A trivially short amount of extra time can make all the difference.
bstv6913 karma
As a current medical student, something like this is my greatest fear you spend your entire youth studying and doing everything required to become a practicing physician only to have something like this happen. Do you have any regrets or anything you wish you did in your youth/ time going through training?
Iatros28 karma
No regrets. None, actually. I was just thinking that the other day. If I died this instant, I would be happy and proud of the life I've led thus far.
I achieved something that very few people do, after a ton of hard work, and because of that, I'm allowed to have the sacred duty of caring for, indeed, managing someone else's health. Every day, at my job, I get to help people. Like, really help them. And they pay me for it? Awesome. Don't tell the powers that be, but I'd do this job and go though the bullshit of training even if doctors got paid way less. I mean, the idea of getting attending level money is cool. I want to buy a Tesla. But this is about way more than the money for me.
What else is awesome about my life? I found my soulmate. We're like 2 jigsaw pieces that fit together perfectly. I've been diving in some of the most beautiful places that exist on this earth. I have a great relationship with my family. This whole experience helped me reconnect with my spiritual side, and helped make me a better doctor and a better person.
So, no. No regrets.
Iatros12 karma
Which part? I didn't do anything. It must have been a moderator.
edit: They needed more concrete proof, which I provided.
ZoidbergNickMedGrp12 karma
Is that just a poor res export of the CT images or did you actually get the low dose scan? Btw I freakin hate reading low dose scans in peds; don't care about the non-inferior results in the radiology literature, when the scan is indeterminate it's worthless
Were you looking for anything specific with the PO con?
Holy shit you had a fascial dehiscence.
Why didn't they use lovenox for you when you were postop discharged..you had malignancy and an indwelling catheter; it's got better survivability in malignancy related all-cause mortality.
Knowing what you know now ex post the real postop complications not just the bullshit listed when the intern/fellow consented you during preop, would you still have decided to go for surgery?
Iatros18 karma
No, that's actually the haziness from all of the mesenteric edema. It was that bad. I agree the study looks like garbage.
I told them I probably didn't need it just to exclude appendicitis (which is what I thought we were doing). The ER attending was the one who actually wanted the oral contrast. Only in retrospect do we know that was a good idea.
Yeah, it was even more fun looking down and seeing that on my own body.
Because I was on dialysis and that's what nephrology wanted. They said nothing else has been studied sufficiently for patients needing anti-coagulation also on dialysis. I wanted them to give me lovenox or one of the newer direct thrombin inhibitors so we wouldn't have to check INRs multiple times a week. But that's exactly what we had to do. I was the youngest guy at coumadin clinic (and dialysis, honestly) by a wide margin.
Oh, yeah for sure. I meant, it's more a matter of courtesy/respect. It feels somewhat disrespectful to go do a hugely invasive procedure on someone without at least talking to them first. But that's just my opinion.
edit: I misread your last question. Yes. My surgeon is excellent, and this is the opinion of pretty much all the abdominal radiologists in my department, and the general consensus from the other surgeons. He specializes in peritoneal disease and knows what he's doing. I think the reason my kidneys got so fucked up was because they totally shredded the peritoneal lining and the systemic dose was way higher than they intended. Granted, the 12 hour surgery didn't help. I think the renal failure was multifactorial, honestly.
useless_trash12 karma
In an older answer you said:
I didn't actually get into newer music all that much until I finally decided to get Spotify. Now I love groups like Cage the Elephant, Broken Bells, Portugal. The man, and similar artists.
This is an exact description of me. What are some of your favorite songs?
Iatros15 karma
My "favorite song" by a given artist, especially when the entire album is good, kinda changes the more I listen to it. But, I love pretty much every song on the newest Cage the Elephant album, cold cold cold is probably my favorite.
And Evil Friends is one of the greatest albums ever made, in my opinion.
Criss-Istr10 karma
Fuck, dude. You've been through a lot. I would have freaked the fuck out if I was you.
Were you always a courageous person, or did your courage come as a defense mechanism from adversity? In other words, if before the diagnosis you asked yourself hypothetically how you would react to a diagnosis like that, would the answer be the same as how you really reacted irl?
Iatros32 karma
Why do people keep calling me courageous? I don't get it. I'm just doing the only thing that gives me a chance in hell of living more than a year or two. Everyone would do the same thing in my shoes.
temdream9 karma
I know this might sound mean and insensitive, but how long are you expected to stay alive ? or is it possible that you will live a normal, rougher, long happy life ?
Iatros24 karma
No, that's a totally legit and honest question. And I have really nothing to hide here. This happened to me. It's not like I was a raging alcoholic and then got liver cancer.
So, no one really knows the answer to that question, and no doctor is going to sit there and try to predict exactly how much time is left. It doesn't work that way.
What we can say is that, with certain treatment protocols and with carefully selected patients, people have lived 10+ years after their diagnosis. One of the guys who pioneered the surgery and HIPEC has gotten a series of patients on his latest and greatest protocol up to a 10 year survival rate of over 70%.
One group that treats this disease, the one in Italy, considers you cured if you can make it 7 years with no evidence of disease.
I'm thankful that I at least live in the age of the genetics revolution. I think the 21st century will be to genetics and biological science as the 20th century was to computing. Exponential growth in our knowledge and the pace of developing new techniques and treatments from said knowledge.
Quite frankly, my overall plan is to kick the can down the road until medical therapy catches up and can give me effective treatment for this disease.
I'm not giving up. I'm going to beat this fucking thing (even if it kills me).
barvaz0s7 karma
Hey man, first off: feel better! Kinda unrelated.. What do you think about Radiology? Wife just started her residency and wanted to hear from someone who is truly impartial.. Thanks!
Iatros7 karma
Check out my comment history. You'll have to go back a couple pages now because I've been replying to people's questions here for a bit, but I've written quite long posts about radiology, what it's like, and all that good stuff. If you still have questions after reading that, shoot me a PM.
Hlmd5 karma
One of the most human and beautiful things I've read on here. Good luck to you and congratulations on your new family.
One question: after reading your write up (and yes, I am one of the many people who read the entire thing) - how did you let go of the opportunity of calling HIPEC by it's more medically official name - the 'shake and bake'? It would seem to fit in well with your style of writing, and what they did to you.
Take care. If I ever scuba dive I'm sure this internet stranger will have you in his thoughts.
Iatros4 karma
'shake and bake'
Stealing this. I was considering something along the lines of, "slosh that crap all around in your belly."
But yours is better.
realpsych224 karma
So....can you approximate the total of the medical bills you have received?
Iatros16 karma
The charges and what I've paid are two very different things. We actually have pretty good insurance since it's all a group insurance policy for all the employees of my institution.
My out of pocket maximum is $2000 per year, so this year, $2000. But the total charges were north of $100,000.
no_no_sorry4 karma
Two questions, any change in bowel habits before all this went down? And, looking back, was there anything you think you missed? Just tried to explain away? Maybe that counts as 3 questions...
Iatros11 karma
My bowels started moving again probably 2-3 days after surgery. Remember, they had taken out essentially half of my colon. Well, the other half of the colon doesn't particularly care to be surgerized upon (that's my favorite made up word).
The primary function of the colon is to remove the water content from stool. Well, the part they left in was like, "I just gotta take a breather man." It stopped absorbing the water, leaving the water with exactly one way to get out. I had diarrhea for weeks after the operation.
When I first started eating again, too, the gastro-colic reflex was strong. A couple of bites into pretty much every meal, I'd have to waddle into the bathroom with my IV pole and 2 JP drains and 2 accessed port devices sticking out.
When I think about how I must have looked, I think it would have been hilarious if it wasn't so tragic, honestly.
I don't think anything was missed. The real question you're asking here is this (correct me if I'm wrong here): if someone presented with my symptoms to the primary care doctor when I was just intermittently throwing up, would the work-up eventually lead to this diagnosis?
I think the answer is, "it depends." If I went in to see them right when it started, I think this is how it would have gone down (1) let's wait and see if it happens again (2) if it keeps happening let's trial you on an acid lowering medicine (3) eventually get a esophagus swallowing study and/or camera down the old 'gus.
If you're pulling the trigger on the camera study, you're also basically consulting GI. They have to do the case. They're not gonna do a case on anyone they haven't seen in clinic first. And they obviously asses the patient in clinic, too.
GI would start considering common GI things first. Remember, the low hanging fruit gets picked by the primary care doctor. GI would think of stuff like inflammatory bowel disease, maybe lymphoma, maybe a very atypical colon cancer. And they'd do blood tests for things like celiac disease, IgG4 related disease, an auto-immune/vasculitis work-up.
If I came to them when the primary tumor was small, hadn't spread, and wasn't causing any problems, I think they would have done all that work-up, it would have been negative (all the studies would have been normal at first).
And after they would have ruled out allllllll of that crap, they'd say it's "idiopathic" or "psychosomatic" and tell me to just continue treating the symptoms.
If, however, the tumor and/or a metastatic lesion finally came to attention when it was big enough to see on scans/scopes, or, frankly, had wreaked enough havoc that some of those lab values were way elevated, they wouldn't let it go. You can't. You have to get to the bottom of that finding, because your patient may have a life threatening illness.
So, I guess it depends on what you mean by "missed." They found it after the symptoms made it clear they it was more serious (i.e., more painful, constant, etc).
I would have had to have sought medical attention in that gap period when the labs were off but the symptoms were still mild. Maybe they would have done the "right" test to accidentally find the cancer before it wrecked my insides. Maybe not.
But here's the thing: from the standpoint of a healthcare system, you can't run around ordering multi-thousand dollar tests on every person who comes into your office with vague, non-specific complaints not associated with anything at all. You order a few labs, rule out the common things, then reassure the patient. You image and invasively test people who actually have concerning symptoms beyond an upset tummy from time to time.
djyakov3 karma
Hugs
thank you for writing this post. What do you think is the best advice for families and friends of people going through a hard medical diagnosis?
Iatros6 karma
Love and support each other. Having family and friends around really made a huge difference. It's really nice to know that people care.
And don't give up. You can find a million stories of people living way longer than they were "supposed" to. You just gotta keep on keepin' on.
Dolpheus2 karma
Dear lord, I thought having cancer twice before I was 23 was rough... Thought 4 surgeries and 2 hits of radiation was hard, but Damn dude, you had a hell of a draw.
What's your escape, aside from travel? (Since you can't always be doing that)
Best of luck, and fuck cancer
Iatros5 karma
No, don't discount the crap you've been through. Cancer sucks balls for everyone. I'm sorry you had to go through that.
I play nerdy video games like Europa Universalis, Stellaris, Hearts of Iron, etc and a bunch of indie games. I've been trying to learn how to code in python. Lately, I've been writing a lot because (1) it helps me organize my thoughts and get some of these pent-up feelings out and (2) people seem to enjoy reading it, and I hope I can provide at least some small insight that's helpful to others from my crucible.
fitfat232 karma
Since you say you have a real shot at living 10+ years. Are you going to be aggressive, or very lax with paying off med school loans? (if you have any that is). Personally I'd say screw the loans and pay the minimum.
Iatros3 karma
Yeah, my attitude is "fuck them." They screw us over so hard (6.8% interest rate, every year you can't pay it off the interest gets added to the capital so the total interest next year is even more) because they know they've got us by the short and curlies.
Who is going to give you a $200,000 personal loan when they know you're gonna be a 0 income student for 4 years and then make what is just above minimum wage during your residency (when adjusted for the hours worked - 80 per week usually)?
No one.
Pwntastic4112 karma
Hey! I've taken up interest in going into radiology, how do you like it and is it worth all the med school and stuff?
Iatros3 karma
Check out my comment history. You'll have to go back a couple pages now because I've been replying to people's questions here for a bit, but I've written quite long posts about radiology, what it's like, and all that good stuff. If you still have questions after reading that, shoot me a PM.
Sancho_Villa2 karma
I read all of this, and first I want to congratulate you. Im not assuming you never lost hope, but you sure haven't given up.
Second, good luck friend. Sincerely.
My question is one I've had for a while, and may seem remedial. But I genuinely am sort of confused\surprised by the simplicity of "new\radical" medical treatments. It seems like "take out as much bad as we can without hurting him, nuke that shit, then take out everything bad with no exception" would have crossed the minds of all the minds focused on situations like these.
1)Does a new procedure have to go through a research or testing process similar to new medications?
2)What is needed to justify trying something "new" for a person with rare circumstances like yourself? Can the idea of one surgeon gain backing by peers and then be put into action or is there some higher power who has to give the OK?
Also, please keep up posted. I'm now as invested as a stranger reading this in his underwear can be.
Iatros3 karma
Procedural fields don't have revolutionary changes. They have evolutionary ones. No one comes up with a crackpot idea and is then allowed to try it on people.
But, you might have an idea on how to improve upon an existing technique. So you try it a bit differently than normal. Does it seem to work? Write it up. Then study it. Prove it's better. Then everyone else starts doing it your way (until the next good idea comes along).
For people who otherwise have a death sentence, the rules are a bit more flexible. But you still have to provide the patient with at least standard of care treatment in addition to the experimental treatment.
And you have to get your projects approved by an institution review board who reads you idea and plan and study design and then makes sure it will be as safe as it possibly can be for patients.
martinaee1 karma
What kind of cancer do you have? Your write up is so detailed I wasn't really sure on that. Hell man. I'm sorry you've gone through this. I can sort of relate.
I was diagnosed with Hodgkin's a little more than a month after I got married last year. Life can be pretty insane like that ;D I'm doing pretty well after a never ending flood of chemo and a stem cell transplant and radiation. I'm about to start immunotherapy drugs for a year.
I can definitely tell you're a radiologist :) I think for Reddit you might want to make a TL:DR paragraph at the bottom. I'm all too familiar with CT and PET scans though. I definitely am not great with the anatomy, but some things just shouldn't be showing up in cross sections :P
I really hope things are going well for you. I understand how painful and EVERPRESENT this kind of thing is, which a lot of people don't understand. You wake up and, yes, it's still there and completely fucks your day up many times. Stay strong bud!
Iatros5 karma
cancer
I feel your pain brother (or sister). I empathize greatly with cancer patients now, particularly if they're young like me and "shouldn't" have cancer. Look, if I make it to 75 and then I get colon cancer, I mean, it sucks, but it fits the narrative of life.
Getting cancer at this age fucks the narrative of life. And you're right about it being always. fucking. there. Not a single day has gone by since my diagnosis where I didn't think about this disease.
But the good fight is worth it. And we live in a time of rapid medical breakthroughs. So, stay strong and continue to kick ass. Science may catch up just in time to save our lives.
Iatros7 karma
Dude, I'm a radiologist. You're lucky I even remembered that the HPI goes at the top.
Epyon214-7 karma
So at this point you will need to go on telomerase inhibotors to kill the cancer, and have stem cell treatments to regenerate your lost organs. As someone who was in the field, how is it you didn't start with telomerase inhibitors to begin with rather than going through all this surgery? In your position, you're the type I would have expected to know better.
Iatros5 karma
While I thank you for your post, I think I will continue to use the evidence-based, standard-of-care treatment plan that we're currently following. The one that my oncologists, who specialize in the treatment of this disease, have suggested.
ThePonyExpress832428 karma
So, uhhhh, how are you doin?
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