By Professor Doom
So I’ve been suffering at the hands of cancer treatment well over a year, and am doomed at this point. I thought it’d be worthwhile as my final post to give a discussion of what happened to me.
I know, the typical reader will go “whew, that was some bad luck…good thing that won’t happen to me.” I certainly made that mistake too.
I had an undescended testicle, like my father before me. He had his removed when he was a child. When I was around 8, it was lowered…but it ascended when I was 16, I even remember when it happened.
Around age 19, I go to a urologist to get it removed. I’ll be putting things doctors or medical professionals said to me in boldface.
“Well, we used to remove them, but for the purposes of cancer, it’s better to lower them.”
--(In case you’re wondering why I’d remember a conversation from over 30 years ago, I relayed this information to a high school friend at the time, who commented that it was about the only time he’d talked testicles with a friend, and confirmed my memory.)
Now, I was pretty much a kid, so I misunderstood the above to think that it was better to lower it because it reduced the risk of cancer. What the doctor who screwed me here meant to say was “The protocol now is to lower the testicle because supposedly testicular cancer is easy to treat., even though the chance of it turning cancerous is much higher.”
This was well before the internet, so I didn’t stand a chance. I trusted this guy, though he cut a nerve doing his job…it was not pleasant. In any event, if I’d been given a fair shake, I would have been told that re-lowering testicles like this greatly increases the chance of testicular cancer. If I’d been given this information, perhaps I would have discovered the cancer sooner. Oopsie, though at least the doctor scored a few hundred extra bucks for a more complicated surgery.
That lowered testicle was small, deformed, and hard…I gained nothing from having it.
“No, this won’t hurt an unborn child.”
My first wife had a miscarriage (the only child we were like to have thanks to all the drugs they were plying my wife with), and I can’t help but suspect the drugs were a factor in my son’s heart not developing. Many years later, I see advertisements on TV from lawyers looking for people to join a class action lawsuit regarding that drug. Oopsie.
My father died a year after that, a bad reaction to a drug destroying his kidney…and he didn’t have a spare. Oopsie.
With both father and son killed iatrogenically, I should have been able to guess how things would turn out for me.
“I really don’t think it’s cancer.”
Around age 37, I noticed that small hard testicle was deformed, just about a crescent shape and larger by far. Poking around in my groin, I found an enlarged lymph node. I read online, it sure looks like cancer is the most likely thing. So, I get an appointment with a urologist (different than the one from over a decade before). He pokes and prods, says the above. I ask about the enlarged lymph node, he says he doesn’t feel any.
I grab his hand and jam it into the soft tissue of my groin…I still remember his eyes widening with realizing that I have a pretty enlarged lymph node.
Things move fast after that. He sends me to get an ultrasound…the technician isn’t allowed to tell me anything but I see the look in her eyes (she’s young), and can tell I’m screwed.
I even get a CT scan, but they screw up and only do my groin. So I have to get an extra CT scan to check my lungs, because testicular cancer commonly goes there. Oopsie, but at least it hasn’t spread beyond the lymph nodes.
“You’re lucky. He’s a great doctor.”
The nurse surreptitiously whispers the above to me as I’m introduced to my oncologist. I take some comfort in that. I tried befriending the doctor via e-mails, but it did no good; he was no writer. Even though English was his first language, I doubt he ever replied in a complete sentence.
“You’re lucky, this is an easy cancer to treat.”
So, next comes 3 rounds of BEP chemo. My hair falls out, and I’m sick…but it isn’t too terrible, as they pump me full of drugs. I read around online, and can’t help but worry, as I read of people dying of cancer, suffering horribly from useless treatment after useless treatment, each one failing and making the victim sicker, before death inevitably comes.
There were a few incidents during the chemo. I begged to have a mediport put in immediately, every account I read said how sooner or later you needed one. The doc said “nope,” but by the second round I was getting stuck half a dozen times a day before they could find a vein…eventually one ruptured. That’s some real pain, and my arm hurt for months after that.
The chemo nurses were usually good, although one time a nurse walked away with the IV squirting saline/drugs all over the floor when it was supposed to be plugged into me. I tried calling her, but she was oblivious. Eventually I got the attention of the head nurse, and she fixed things up.
But I take heart in the nurse’s praise of the doctor, and the medical reports which say the BEP chemo is actually effective. I join a TC (testicular cancer) netserv, all day long people report how the treatments aren’t working, but one apologist there swears it does; I know there’s a bit of bias here as only complainers are desperate enough to join the netserv.
In any event, my HCG tumor marker drops down to zero, the chemo seems to work. I still have some enlarged lymph nodes though, so off to a new doc to deal with that.
“Well, you won’t get cancer there again, at least.”
I read reports of how ghastly getting a lymph node dissection was, and so was consumed with fear. It wasn’t that bad a surgery, really, just a few lymph nodes removed, and the doc said the above. Of course, the reality is the lymph nodes somewhat slow down the spread of cancer…but he was still right in his way.
Or should have been right. Oopsie.
Fully expecting the treatments to fail, I report for the yearly CT scans and the easy HCG blood test. Everything’s negative after 3 years (yes, 3, not the recommended 5, but my markers were always low and there was very little spread, so the doc discharges me early).
A few years after that, I get a FUO, a fever of unknown origin. My GP worries that it might be the testicular cancer I told him about. I ask him to test me, so, he orders a blood test.
A testosterone test…I was unclear what test I needed. I’m good in that regard, but it should have been an HCG test. Oopsie. Guess I should have followed up, but eventually Cipro clears up the fever anyway. Oopsie.
A decade passes, I’m assured there’s no way the cancer is coming back.
I take a big risk in 2018: buy a house right next to my beloved university. A few weeks after that, I find a lump in my groin.
A lump in the exact spot I was told cancer could not appear. Apparently the doc screwed up. Oopsie.
I know it’s cancer, I know I need an oncologist. I spend 3 weeks every day making calls trying to get an oncologist to see me. No dice. They want my records from well over 10 years ago before they’ll bother. I have a lump sticking out of my groin and I cannot get an oncologist to see me unless they see 14 year old records. I don’t have a local doctor I know.
I’ve just moved, so my GP is in the next town over. I have no choice but to go to him first.
“I don’t think it’s cancer.”
It takes forever to convince the guy to consider cancer, even as he fondles the lump. I have to explain to him about the HCG test, he reluctantly agrees to do so. He does order a CT scan and ultrasound.
“Testicular cancer just doesn’t come back after so much time.”
I face much resistance trying to convince this guy that I have cancer, even with the damn lump in my groin that is visible to the eye. I ask him to do the CT scan of my chest as well as the lump, and to ultrasound my remaining testicle.
He ignores my requests, instead getting ultrasounds and CT scans of the lump.
Anyway, the HCG test comes back positive. At long last, I’m finally allowed to see an oncologist.
“You’re lucky, he’s a very good doctor.”
The nurse lets me know what a great oncologist I have. He thinks I’m someone else, though, a Mr. Klein…just a glitch and we clear that up. There are lots of little glitches like that here. He immediately orders the CT scan of my chest and the ultrasound of my remaining testicle, so I get to re-do those tests. Oopsie. At least I don’t have to produce those records from over a decade ago.
Scans confirm that the cancer has spread to my lungs, in addition to that huge lump in my groin. At this point, I’m used to reading the scans myself rather than waiting for the doctor to take a look, if ever he will.
My local oncologist refers me to a surgeon to get the lump out of my groin as soon as possible.
“You’re lucky, he’s a great doctor.”
The nurse lets me know the surgeon is great. And, he gets the job done, though I’m crippled, barely able to painfully walk. I have no choice but to get replacements for my classes.
During this time I go back to that old TC listserv; the same apologist is running it. He puts me in touch with “the great” Dr. Einhorn, the guy who more or less invented the chemotherapy that “cures” testicular cancer. If Dr. Einhorn was never born, I’d be fine now, as my undescended testicle would have been removed 30 years ago. Oopsie.
I even exchange e-mails with Dr. Einhorn, and he confirms that I should get TIP chemo, “salvage” chemo, next.
“You’ll be fine, and this works.”
My local oncologist is…not the best. I ask him many questions about my cancer, about the treatment, and he gets it wrong every. Single. Time. He went 0 for 12 before I gave up trying to have a conversation with him. To be fair, I guess I should give him 2/3rds of a point, as when I asked him what TIP stands for he did manage to correctly name 2 of the 3 drugs he was prescribing.
At least he lets me get a mediport before I have rupturing veins.
He also cures my liver cancer in 30 seconds or so. He lets me know the mets there have cleared up…I try to convince him there never were mets to my liver, but the doc doubles down. It takes a few more minutes before he finally concedes he was confused. Oopsie. Like I said, lots of little glitches in that place, I’m just hitting the highlights.
I have an “incident” when my body is introduced to Paclitaxol. It’s called “tightness in the chest.” It feels like my ribs suddenly grew 6” shark teeth pointing inward…it really hurts, but I survive. At least the chemo nurses know what they’re doing at this new place.
TIP chemo was designed for 25 year olds (the usual age for testicular cancer), not people past the age of 50. It’s hellish suffering, by the second “treatment” I’m in a wheelchair, and prone to passing out if I move more than a few feet on my own. It’s hellish misery, and I know I just wrote that.
But…my tumor markers drop to zero, so I guess I’m good. Even Einhorn is pleased. I have to fight really hard, reminding the doctor to do those tumor marker tests to make sure everything is going right.
I have a PET scan, and it says I’m clear, no active tumors. Lucky break. Some masses in my lungs, but the PET scan assures they are dead.
I still have enlarged lymph nodes, so I’m referred again to a surgeon for that (seriously, very little about this whole process has changed between now and well over a decade earlier…you’d think there’d be some real improvements somewhere…).
Now, there could be cancer in those lymph nodes, so you want to get them out quickly. Alas, the doc won’t do it until he sees, I’m not kidding, the damn records from over 10 years earlier. It takes a few weeks to finally dig them up.
When I finally meet the guy, he hasn’t even looked at them, and is more than a little confused about my case history.
“It’ll be just like a day at the gym.”
This doctor assures me the lymph node dissection isn’t so bad. The previous one wasn’t either, so I believe him. He says I’ll be up and about within hours of the surgery. (I strongly suspect the previous one was done improperly, it was so easy to recover from.)
He’s taken so long to set up the surgery that I’m due for another HCG test. I report, they take blood. They lose the blood, so I don’t get the results before the surgery. Oopsie. Besides the PET scan says all the tumors in my lungs are dead, so I’ve nothing to worry about.
The surgery itself is a horror. There weren’t any complications or anything, but it was just a horror. I was just barely recovered from the chemo to walk, but no more, again. The day of and day after the surgery I spent in a daze.
“Were you always such a lightweight?”
One of the assistant doctors is surprised how slow I was to recover from the 5.5 hour surgery intended for 25 year olds, particularly those who hadn’t had their groin shredded and body debilitated by previous treatments.
The doc basically guts me…that was medieval, I’m in agony for weeks after getting home. That was nearly a year ago, still constant pain.
But, the path reports are great—no cancer! Yes, that means the surgery probably wasn’t needed (he removed far more than he needed to, just to be safe), but least I have that. He scored over $50,000 for the surgery, too.
Alas, the very first HCG report post surgery confirms: the cancer is still active. Darn, if only they’d not lost that previous tumor test, I could have avoided this surgery. Oopsie.
I get another CT scan, and can see the tumors in my lungs are still active. The PET scan missed around 18 of them. Oopsie.
“That chemo generally doesn’t work.”
Einhorn decides to let me know after the fact that TIP won’t work for me, since I’m a late recurrence. In every e-mail with him my subject line was “15 year recurrence.” Oopsie. I even speak with him on the phone to make absolutely sure that the TIP he said was a good idea (before I did it) was in fact a terrible idea (after I did it)…I really suffered under that. I don’t communicate with him much after that, but he helpfully sets me up in a clinical trial, “starting in 8-10 weeks.” I fill out extensive forms for that, we’ll get back to it later.
When I finally meet the local oncologist, he doesn’t know about the tumors in my lungs still active, he’s just worried about the tumor markers. I tell him the cancer is probably in my chest, and have to sit and wait while he reads the CT report.
He then goes into panic mode, at least having the decency to be embarrassed at not even looking at the CT report before seeing me (though that really is par for the course with these guys). I leave the meeting. Later he tries to sell me Keytruda, a $5,000 a dose medicine. Looking at the medical studies, I see Keytruda has a very consistent 0% success rate for my cancer. I pass on his treatment. He tries to sell me a few other things…but I pass.
So, at this point, I’m told my best chance is high dose/stem cell replacement chemo, and that’s only done nearby at MDA in Houston. I’m pretty sure doing so is a horrible mistake (and Einhorn indicated as much), but I don’t have many options here.
It takes over a month to get an appointment.
“You’re lucky, he’s a very good doctor.”
Again with the reassurance from the nurse. It’s very clear at this point that they’re all working from a script. I guess their victims generally die before figuring it out.
The new doc says I’m a difficult case, but suspects I have a rare version of cancer called ETT, and I was misdiagnosed when they removed that big tumor from my groin. Oopsie. Surgical removal of the tumors should work. The lung surgeon won’t do it, however, unless my HCG marker is back down to zero. It’s been steadily climbing…and I’m sure not looking forward to more chemo, but there’s no negotiation here.
My MDA doc sells me this experimental chemo, ATP, says it’s low dose, not so bad.
I suffer horribly under it, back to being barely able to walk again. They even change the drugs I’m taking mid-process (and neglect to do the HCG test to even see if the change is working).
I get lucky, actually survive the chemo, and my markers get down to near zero. The surgeon will do it. He sits with me and shows me how they’ll take wedge resections out of my lungs, removing the tumors whole, one or more at a time.
I have full-on lung surgery. They break a rib, pop out a lung, and slice away. Let’s just say it’s a really painful recovery.
A month later when I’ve barely recovered, he does it again with the other lung. It’s somehow more painful, and I get nerve damage in my rib cage this time…I’m really going lightly over what’s been done to me, I’ve dozens of new surgical scars from the last year or so of hell.
“You’re going to be fine now, I got everything.”
The surgeon is quite confident I’ve no more tumors in my lungs. Well, to be fair, he says I might have one—he really couldn’t get to this one spot, but it was small, perhaps I’ll get lucky. So confident is he that he discharges me, figuring this time the job is done.
Hey, maybe a tumor marker test would be a good idea? I have to fight to get it, but reluctantly I manage to get permission 3 weeks after I started asking for it.
The reason the doc doesn’t care to move with any speed is he says my cancer is very slow growing, which is also why chemo isn’t very effective with it.
My tumor markers are higher than before. Hmm, removed my tumors, but the marker goes higher. A little suspicious, that.
The doctor explains that the PET scan is useless for detecting a type of tumor called a teratoma, and that’s why it missed all 18 or so tumors in my lungs.
. The path report says the tumors in my right lung might be squamous cell cancer, which should be addressed quickly, while the month earlier report said the tumors in my left lung were ETT. Not a single tumor was identified as a teratoma. Oopsie.
Hey, remember that clinical trial that was going to start in 8-10 weeks, about 5 months earlier? They contact me to let me know they’ll be starting in 8-10 weeks.
Another month as MDA goes through panic before finally deciding a PET and CT scan would be a good idea. They’re not so sure about my lungs, but what little they can see there could be surgical related. They say it should be closely monitored, but MDA lets it go for three months despite my pressing them a few times…I only have so much energy. There’s also something suspicious on my right femur.
It’s cancer, and it was actually visible on an earlier MDA scan, but they missed it. Oopsie.
I have to wait a few extra weeks to see a bone cancer specialist.
“You’re lucky. He’s a very good doctor.”
I’m so damn tired of the nurses telling me that. It’s funny I’m the only one who seems to notice all the suckers get the same treatment overall.
I waited weeks to see this guy, and he dismissed me in 10 minutes, he can’t help, all he can offer is hip replacement, which really won’t help a tumor on my femur. Oopsie.
Off to interventional radiology.
So, I’ll have to get a cryoablation to blast the tumor out of my femur. I ask a few times about what they’re going to do about the possible squamous cell cancer, but the questions keep getting dodged. Oopsie.
“Got it no problem, you should be walking fine in a week.”
The cryoablation goes well, and, after pressing yet again, I get a tumor marker test. The surgeon says it’s an easy procedure, the bone is very strong should be no problems at all.
It’s only 74. That’s still way too high (normal is 5 or less, hopefully 0), but it’s the first time my markers have dropped without chemo. Recall, removing tumors in my lungs accomplished less than nothing as far as tumor markers go, but removing this one tumor dropped it 25% or so.
Still, that’s entirely too high, and I confirm with MDA that it’s entirely too high.
A month goes by, still no scans or anything, though I ask about it. Another 3 weeks, and I try to get MDA to do something before classes start. Nope. Despite that, and despite their own PET scan saying I should be “closely monitored” (as per their report), MDA decided to do nothing at all for all of December (they got the HCG report 12/6), and wait until the third week of January for me to come in for scans.
I spend two hours coughing up blood the night before classes start; not a good sign. I have no choice but to go to the local hospital.
They run CT scans and x-rays.
I now have “innumerable” nodes in both lungs. Gosh, guess the PET scan at MDA missed that. I also have a 5cm enlarged lymph node. PET missed that too, at MDA.
That’s a death sentence., there’s no way to survive that.
Now, the local hospital only had a scan from a year ago to compare to, they don’t have direct contact with MDA. Many (yes, their word, “many”) of the tumors in my lungs have now grown since last year, and are pretty big now. But, didn’t the MDA surgeon say he removed them? He said he missed one, maybe, at 5mm or so, whereas these were all over 1cm a year ago. How did he miss “many”?
Oopsie. They billed the insurance company over $60,000 for each fake lung surgery.
“He really only removed what he could.”
I quiz my oncologist very carefully about how removed lung tumors could simply reappear. The above was his response. Funny, the surgeon never said anything like that, and the path reports said nothing besides “clear borders.” Oopsie.
Guess MDA was wrong about my cancer being slow growing, as that’s some pretty major spread in 3 months. Oopsie.
“I don’t know what to do, I’ve never seen this before.”
My oncologist is confused, he’s never seen cancer grow so fast like this before. This is kind of weird, because he’s an older doctor of considerable knowledge, and every one of my friends who’ve died of cancer have all died the same way: much suffering under official cancer treatments, then “suddenly” the cancer gets more aggressive and kills them. Like the gentle reader, I thought I was going to be a lucky one and survive. I don’t know how this doctor has never seen it before.
MDA confirms the death sentence my local hospital gave me, but ups their game: they make the death sentence worse. Turns out they screwed up the cyroablation, my hip is in danger of breaking, so something will need to be done about that…my leg really hurts. Oopsie.
MDA’s amazing orthopedist suggests removing a big chunk of femur and transplanting in a new one…really complicated surgery taking months of recovery. Trouble is, the prognosis is 3 months to live, so not much reason to try that. I don’t know what this has to do with my hip…but I’m beyond caring.
My tumor markers are up by a factor of 10 in one month, quite the explosion. Why the sudden change in what MDA called a “slow growing” cancer? Most likely, is the chemo helped cause the cancer to spread. The doc never mentioned that, but now I know it’s a distinct possibility (at least now I do) or maybe it was the surgery which caused the cancer to spread. If the principle of informed consent were being followed, I could have at least have tried some supplements or something, instead of having no chance whatsoever. This whole process, it was up to me to protect myself from an incredibly hostile system.
Maybe that clinical trial will save me? Guess I should ask, it’s been nearly a year since they first told me it would start in 8-10 weeks. I filled out so many forms for it, I’m sure human decency would cause them to let me know it’s stopped, rather than leave me hanging forever. I’m also sure it’s being run by a very good doctor…
I have to admit, I sure wish I’d been smarter when I was a kid, and insisted that deformed undescended testicle were taken out. That was a mistake on my part, I concede, but the “professionals” sure made their share of mistakes as well. Of course, every mistake they made fattened their wallets, whereas I pay for my mistake with my life, and much suffering.
So, now I sit and wait for death after stupidly allowing the doctors to use my body to rack up hundreds of thousands of dollars of medical bills (but I still have to pay for parking in the MDA lots every time I go to MDA…they’re a little too mercenary here). Too crippled by treatments to do much beyond walk the length of my house, I can barely be active more than few minutes before my body tells me I have real problems.
One of the many issues I have with this whole nightmare is how incredibly difficult it was to talk to my doctors—it’s why I can remember things they said so well, because there were so few actual conversations with them. Oh, I had a “patient portal” and I could submit a message there. Then it was reviewed by a nurse. Then the nurse, if she felt like it, relayed the message to the doctor. Then the doctor, if he felt like it, gave his reply to the nurse. Then the nurse, if she felt like it, relayed her version of the doctor’s message to me via the portal.
I’m sure was a time where I got a straight answer, but, usually the response was so garbled that it was almost useless, or unrelated to my question in any rational way. A lifesaver here was a retired doctor friend; without his access to medical knowledge, I would have died long before coming to this point, because the “medical treatment” I paid so dearly for was sorely lacking above and beyond eventually killing me after subjecting me to many months of tortuous agony.
I also thank my amazing wife here; I’m sorry the doctors didn’t let me give you more time, and I can only hope that I’ve left you enough resources (minus the doctor’s cut, of course) that you can still follow a few dreams they can’t stop you from.
And I thank Dr. Einhorn; I respect that he chose to spend his precious time on me.
Overall, I should have died before ever meeting an oncologist in 2018, these people are monsters. I know it’s hardly rare for people to simply go home and kill themselves after a cancer diagnosis…I’m not recommending that, but I at least concede it’s likely a smarter move than going to MDA in Houston. I spend much time coughing up blood now, and thanks to that botched cryoablation, my leg explodes in fire with every cought...everything MDA did to me was spectacular failure.
A Note About Cancer Cures
Since posting my cancer issues in my blog, I’ve received something past 100 e-mails from people offering advice about miracle cures for cancer. They broadly go into 50 different substances/supplements/diets/magical machines/whatever. If any of these miracle cures actually worked, almost nobody would ever die of cancer, as everyone else I know dying of cancer is trying multiples of them.
The people pushing these cures insist that their miracle cure has actually cured people. But…no. When pressed, the person telling me about the cure usually isn’t the person supposedly cured. It’s always the person knew a guy whose friend had an uncle who went to school with someone who was related by marriage to a friend of someone…you never can track them down to see with your own eyes.
Alternatively, they claim they were cured, but just don’t happen to have any evidence, you must take their word for it or the treatment isn’t for you (heard that line many times). It’s 2020, they’re on the internet, they could take a screenshot (if they have a patient portal), take a pic of a path report with their phone and post their evidence of cancer…lots of ways, really. Nope, nobody has evidence they had cancer in the first place, ever. Now just buy a bottle of that miracle cure, it’s only $75.
I appreciate the advice, honest, but if you have a miracle cure, please be sure to provide real evidence you had cancer in the past (eg, pathology report, CT scan report, PET scan report), and real evidence you don’t have cancer now (eg, CT scan report). Otherwise, I’ll just ignore it like so many other miracle cures (out of desperation or respect for friends who insist, I’ve tried over a dozen, they’ve all failed, of course).
Despite this, I’m trying a wacky anti-cancer diet and half a dozen internet miracle cures all the same right now. If any of this crap works, I’ll be the first person to be able to claim to be cured who has actual evidence (and plenty of it) that he had cancer in the first place.
I started my blog to warn people about the dangers of going to a higher education system which had far too many predatory elements to it. There are other things to warn people about, but I tried to focus on higher ed as much as I could.
Let this post serve as a warning: our medical system is pretty darn predatory too—not just MDA in Houston, I was exploited at every opportunity by every doctor I met.