Fuck Cancer

[mcski]

I didn’t follow too far after you’re surgery post but holy fucking shit. I assume that was a huge malpractice lawsuit that easily went in your favor? That’s an unbelievable mistake that apparently happens way too much

[Meadow Skipper]

I didn’t follow too far after your surgery post but holy fucking shit. I assume that was a huge malpractice lawsuit that easily went in your favor? That’s an unbelievable mistake that apparently happens way too much

The lawsuit took a negligence approach - for one thing malpractice lawsuit awards are capped in this state, negligence isn’t. They settled.

And yeah, seems it happens every now and then. I found an article online about a guy who went through the same thing in another state.

[Dantheman]

I have had 3 of those bastards done and the last one was the worst. You will look forward to a colonoscopy after a biopsy.

Now my rant.......sitting the the Drs office and he says, "You have cancer" is bad enough, but that is just the ice breaker. My Dr talked about 2 options I could start on right away, radiation therapy or removal, hell I could start the next day if I wanted. I opted for waiting while genetic testing was done which will determine what cancer type I have, best path forward maybe even waiting for yrs as it progress's.
At home that week, thank God for google, my wife and I found a WHOLE damn list of treatment options Cyro, HIFU, 3/4 different types of radiation therpy and Laser treatment. My problem...why didnt the fucking Dr have a list in his hand of EVERY SINGLE OPTION AVAIBLE TO ME? Why leave it to the person who knows NOTHING about cancer to research what is out there? Give me a list... covered by INS, Cash, experimental I dont care but I want to know anything and everything avaible, not just what your clinic has to offer.


SO...dont ask your Dr, TELL him what you want.

Of, stepping off my soapbox and no more coffee.

Peter Attia did a great episode on prostate health last fall that went deep on prostate cancer diagnosis and treatment. I'd highly recommend giving that a listen.

[farmguy]

In this age of having the "greatest healthcare in the world USA fuck yeah" a patient must be their own advocate. It is so FUCKING maddening.

Best wishes for a good outcome. I think I will not tell sis about the experience.

I still believe we have the best health care, however, when Drs have to tailor their advice or recommendations based on Ins coverage or what they offer or govt regs or guidelines. That the problem.

btw...ask you BIL if he has had a prostate spefic MRI done.

[skaredshtles]

I still believe we have the best health care

I'd be interested why you think this? What sort of metrics lead you to this conclusion?

[Bunion 2020]

I still believe we have the best health care, however, when Drs have to tailor their advice or recommendations based on Ins coverage or what they offer or govt regs or guidelines. That the problem.

btw...ask you BIL if he has had a prostate spefic MRI done.

He just had that which has led to the biopsy decision.

Thx

[riser4]

The only good thing about prostate cancer is OJ died from it.

Oof.

[jono]

Shift in boundaries as a patient?

Yeah. I found the acceptance of life's necessary indignities much simpler as a thought exercise than as an experience. Actually plumbing in a dozen attachments for a week or so left a few marks. Most visible, but probably not all.

[Mofro261]

For some reason we were put on making an OTC PSA assay that would only be positive if the value was >10 ng/mL. I still question the value of the assay, as ~60% with prostate cancer are above that level but that still leaves the 30% between 4-10 and 10% <4ng/mL who go on the develop it.

Over Dx is a problem though since just 1/4 who get a biopsy based on a suspect PSA actually have cancers.

My old man was a Urologist and surgical cancer specialist and his take was PSA velocity (change over time) was more important than absolute value.

[Trackhead]

I had a prostate biopsy a few years ago and I took a Vicodin before going in, which helped some. Like farmguy said, it makes a colonoscopy seem like a warm, friendly hug.

But because I don’t want my experience to be repeated, I guess I should point to what happened to me again.

https://www.tetongravity.com/forums/...45#post6346945

Be your own advocate, and double check/second opinion everything.

This is why USPTF doesn't recommend routine PSA screening, because it can lead to unnecessary harm via biopsy, etc. It didn't take long for a mag to post a negative experience from a "false positive" PSA essentially.

And what Mofro said.........

On my 2nd after treatment PET scan I had a little lymph node light up left inguinal where there was no previous disease. Oncologist thought unlikely to represent lymphoma recurrence. Offered biopsy if I wanted. I declined. Repeat scans negative. Biopsy isn't always the answer, clinical judgement is useful. Healthcare is complicated, nuanced, and we don't always get it right. Humans are not like cars, we can't rip the engine apart and diagnose stuff, we rely on imaging/labs/history which isn't perfect.

[Trackhead]

In this age of having the "greatest healthcare in the world USA fuck yeah" a patient must be their own advocate. It is so FUCKING maddening.

FWIW, I would assume you need to be your own advocate in any healthcare system across the world. It's a human behavioral trait that has distinct survival advantages in any circumstance.

[riser4]

a colonoscopy seem like a warm, friendly hug

I have had enough of them that they are no BFD. Doc still won't give me a reach around, let alone a hug or a kiss. She's cute too. Next one in the fall. I think that will make 7. Or is it 8? I'm starting to get old.

[Trackhead]

Now my rant.......sitting the the Drs office and he says, "You have cancer" is bad enough, but that is just the ice breaker. My Dr talked about 2 options I could start on right away, radiation therapy or removal, hell I could start the next day if I wanted. I opted for waiting while genetic testing was done which will determine what cancer type I have, best path forward maybe even waiting for yrs as it progress's.
At home that week, thank God for google, my wife and I found a WHOLE damn list of treatment options Cyro, HIFU, 3/4 different types of radiation therpy and Laser treatment. My problem...why didnt the fucking Dr have a list in his hand of EVERY SINGLE OPTION AVAIBLE TO ME? Why leave it to the person who knows NOTHING about cancer to research what is out there? Give me a list... covered by INS, Cash, experimental I dont care but I want to know anything and everything avaible, not just what your clinic has to offer.

My assumption is you opted to wait for genetic testing and further discussion of nuances/treatment options would depend on results of genetic testing. I'm not in anyway a urology expert, but that's my guess. So I wouldn't throw your urologist under the bus just yet if that is the case.

It's routine in healthcare to not make assumptions/lengthy discussions about treatment before a definitive diagnosis that has results pending.

[mcski]

I have had enough of them that they are no BFD. Doc still won't give me a reach around, let alone a hug or a kiss. She's cute too. Next one in the fall. I think that will make 7. Or is it 8? I'm starting to get old.

My new doc only gave me the poop. The last one I saw was insistent that I get the fully colonoscopy but I switched ins before getting it. Now Kaiser trying to save money i guess. I think conventional wisdom is poop kits are fine after the first clear colonoscopy but the first should be the full Monty. I told him I’d never actually had a full one but that didn’t seem to matter

He also pitched me on a psa test but said there were a lot of “false positives” or words to that effect so if I wanted to hold off on that it was ok. ..

[farmguy]

My assumption is you opted to wait for genetic testing and further discussion of nuances/treatment options would depend on results of genetic testing. I'm not in anyway a urology expert, but that's my guess. So I wouldn't throw your urologist under the bus just yet if that is the case.

It's routine in healthcare to not make assumptions/lengthy discussions about treatment before a definitive diagnosis that has results pending.

Yes. I opted for the genetic tests to get as much info as possible, however, as of last week they had lost these results which were sent off to be tested 1/10/24, 8 week turn around and 3 months out they are trying to find them. In the mean time I did my research and found the Prostate Laser Center in Houston and they do a focal laser ablation, fairly new, started on 2016. Minimal side effects compared to any other treatment, 1 day visit. I have talked to their Drs, went over pro/cons etc etc, I cant go every day for the next 10 + yrs wondering if my cancer will spread or when it will, so I booked a visit. The only drawback is insurance coverage, there is none.
roughly $30K with travel etc etc. I guess that new bike and skiis can wait.

[old goat]

https://www.tetongravity.com/forums/...45#post6346945

Be your own advocate, and double check/second opinion everything.

What a nightmare. As I understand your original post, someone in the clinic put the wrong label on your specimen, or maybe specimen jars were prelabeled and the doctor put your specimen in the wrong jar. Although I've never done this or had a patient ask me to do it, it seems reasonable for anyone having a biopsy to ask to see the specimen container to make sure it's labeled with your name and medical record number or DOB, That should be possible in a clinic, not so much if you're having major surgery in an operating room. Othere than that you were at the mercy of someone doing their job properly, and they didn't. A second opnion wouldn't have helped since the doc would have relied on the same path report.
We do a lot of double checking to make sure we're doing the right procedure on the right patient on the right body part but IME the same degree of double checking doesn't happen with labeling of specimens. I wonder what procedures your clinic instituted after your case.

My new doc only gave me the poop. The last one I saw was insistent that I get the fully colonoscopy but I switched ins before getting it. Now Kaiser trying to save money i guess. I think conventional wisdom is poop kits are fine after the first clear colonoscopy but the first should be the full Monty. I told him I’d never actually had a full one but that didn’t seem to matter

He also pitched me on a psa test but said there were a lot of “false positives” or words to that effect so if I wanted to hold off on that it was ok. ..

As I read it the proper way to screen for colon cancer--whether or not to do a colonoscopy at least once on everyone or to rely only on the stool test--is not settled. My doc at Kaiser was on me to have the colonoscopy, although that was 20 years ago. Kaiser currently describes the stool test and colonscopy, gives the pros and cons, and leaves it up to the patient and their doctor. My personal feeling is to have one colonscopy and then the stool test if nothing is found. Colonoscopy can prevent cancer by removing benign growths that can turn into cancer. I bet if you were to insist on colonscopy you could get it.

I'm all for people advocating for themselves. Especially if they don't have a wife--why do you think married men live longer than single men; because their wives insist that get the tests and treatments they need. The trick is to evaluate the reliability of the source. IME Wikipedia is an excellent place to start. The medical discussions are generally extensive, detailed, reliable, and unbiased. For published scientific articles Pubmed, which is an index of all the reliable medical journals, is an excellent source. Most of the articles you'll find will give you just an abstract but there are sometimes links to free full articles and you can pay for the others if you find one you really want to read.

If the first ten sites you find on a google search are dot coms, that;s a red flag.

[Trackhead]

Yes. I opted for the genetic tests to get as much info as possible, however, as of last week they had lost these results which were sent off to be tested 1/10/24, 8 week turn around and 3 months out they are trying to find them. In the mean time I did my research and found the Prostate Laser Center in Houston and they do a focal laser ablation, fairly new, started on 2016. Minimal side effects compared to any other treatment, 1 day visit. I have talked to their Drs, went over pro/cons etc etc, I cant go every day for the next 10 + yrs wondering if my cancer will spread or when it will, so I booked a visit. The only drawback is insurance coverage, there is none.
roughly $30K with travel etc etc. I guess that new bike and skiis can wait.

Don't know anything about focal laser ablation but brief search looks like it is still in clinical trials which is obviously why it's not covered by insurance (yet?).

[Meadow Skipper]

What a nightmare. As I understand your original post, someone in the clinic put the wrong label on your specimen, or maybe specimen jars were prelabeled and the doctor put your specimen in the wrong jar. Although I've never done this or had a patient ask me to do it, it seems reasonable for anyone having a biopsy to ask to see the specimen container to make sure it's labeled with your name and medical record number or DOB, That should be possible in a clinic, not so much if you're having major surgery in an operating room. Othere than that you were at the mercy of someone doing their job properly, and they didn't. A second opnion wouldn't have helped since the doc would have relied on the same path report.
We do a lot of double checking to make sure we're doing the right procedure on the right patient on the right body part but IME the same degree of double checking doesn't happen with labeling of specimens. I wonder what procedures your clinic instituted after your case..

It was in a clinic. I believe my sample got put in the other person’s specimen container and his sample into my jar. I didn’t get asked my DOB during the procedure, which is probably where the fuckup got going. The other guy had the same first name, which exacerbated the whole shitshow. That, and a casual overly self-confident attitude by the urologist, who was also my surgeon.

Part of my lawsuit request/demands was that they fix the checking procedure so that it didn’t happen again. At the mediation meeting, the clinic rolled out some stupid bullshit procedure that involved the clinic technician and the delivery guy’s initials on the paperwork. I rejected that. The clinic is part of the older local hospital (your wife probably will know exactly the hospital) parent corporation, and I’m told corporate came in and kicked ass, and some decent preventative procedures were established. Heads rolled too.

And yeah, I would have had to get a second biopsy to catch the mistake. I wish I’d known more about false PSA positives - I might have just passed on the biopsy. But I was pretty beat down about cancer things having just lost my wife - her oncologist was really, really good so my guard was kind of down.

[Trackhead]

What a crazy ass horrible story, especially because it created real harm for you, and I'm assuming delayed legitimatize diagnosis and treatment for the other guy.

[Meadow Skipper]

What a crazy ass horrible story, especially because it created real harm for you, and I'm assuming delayed legitimatize diagnosis and treatment for the other guy.

Yep. Other guy died.

[Bunion 2020]

FWIW, I would assume you need to be your own advocate in any healthcare system across the world. It's a human behavioral trait that has distinct survival advantages in any circumstance.

Yeah, I grew up with Ben Casey, Dr. Kildare, Marcus Welby, Joe Gannon etc.

It's not most doctors fault. But when insurance companies get involved with what is/is not a required procedure that it gets fucked up. How many other HC systems have that as a feature/bug?

[riser4]

Yep. Other guy died.

Fucking awful. Hopefully his family also sued, for a hellavu lot more.

[Trackhead]

But when insurance companies get involved with what is/is not a required procedure that it gets fucked up. How many other HC systems have that as a feature/bug?

Yeah, when I was doing chemo I got my first infusion of a regimen that has quite a bit of additional pulmonary toxicity potential, it wasn’t until the second of 12 infusions that I got approval for the newer regimen that is really toxic still, but had a newer drug without much/if any pulmonary toxicity. That was swapped for pretty bad neuropathy/foot drop/inability to climb anymore.

Also almost paid additional $5k outta pocket for single injection of immune boosting med. Didn’t end up having to, but it was close. Wouldn’t give me chemo if I couldn’t get that med, too dangerous.

50% of fear of cancer isn’t fear of mortality, it’s fear of financial ruin. That’s not right. If I was Uber rich I’d give all my money away to people being treated for cancer to alleviate that fear so they could focus on health/survival. I feel very strongly about that.

[Meadow Skipper]

Fucking awful. Hopefully his family also sued, for a hellavu lot more.

I don’t know how that turned out, but he had the same (awesome) lawyer I had. So I guess they got that going for them.

[old goat]

It was in a clinic. I believe my sample got put in the other person’s specimen container and his sample into my jar. I didn’t get asked my DOB during the procedure, which is probably where the fuckup got going. The other guy had the same first name, which exacerbated the whole shitshow. That, and a casual overly self-confident attitude by the urologist, who was also my surgeon.

Part of my lawsuit request/demands was that they fix the checking procedure so that it didn’t happen again. At the mediation meeting, the clinic rolled out some stupid bullshit procedure that involved the clinic technician and the delivery guy’s initials on the paperwork. I rejected that. The clinic is part of the older local hospital (your wife probably will know exactly the hospital) parent corporation, and I’m told corporate came in and kicked ass, and some decent preventative procedures were established. Heads rolled too.

And yeah, I would have had to get a second biopsy to catch the mistake. I wish I’d known more about false PSA positives - I might have just passed on the biopsy. But I was pretty beat down about cancer things having just lost my wife - her oncologist was really, really good so my guard was kind of down.

I'm really impressed that you and your lawyer made an issue of fixing the procedure and not just taking the money. Thank you for doing that.

This is a weak area in medicine. One study found a specimen source error rate of 2.3% which I think is high but even a tenth of that is too much. Labs have procedures for properly tracing the path a specimen takes. The weak spot is in the clinic or OR. I had tons of training in verifying patients but in 35 years in training and practice I never heard a word about specimen verification. Fortunately it never happened in any case of mine, but that was luck. (They lost a leg I amputated but it wasn't a cancer case, so no harm but definitely foul.)

Thank you for educating us about the problem.