Protocol over person -The Quiet Tyranny of Standardized Care

Well, Phil, thanks for your persistence. Why do i think my cancer treatment should be different? How entitled of me to expect a personalized, evidence-based medical approach in the 21st century—after all, it’s only my life on the line.

Let’s rewind to the beginning. After my biopsy, it seems the curiosity ended there. No genetic testing. Because who needs to know if i have BRCA mutations or other hereditary markers that might scream, “Hey, this cancer might be more aggressive than it looks!”? No big deal—just roll the dice and hope for the best. It’s not like genomics has revolutionized oncology or anything.

And testosterone levels? Pfft. Why would anyone look into my hormonal history when dealing with a hormone-driven cancer? Clearly, establishing a baseline testosterone level before starting androgen deprivation therapy would be far too logical. Better to just throw Firmagon at the problem and hope my endocrine system doesn’t throw a tantrum.

Let’s not forget the total absence of comprehensive risk stratification. Cribriform patterns? Perineural invasion? Gleason 7? PSA of 26? All very exciting, but rather than contextualizing these in the broader biological narrative of my body, the system seems to have said, “Good enough for government work. Let’s treat this like every other moderately aggressive case.” Individual variation? Overrated.

No deep dive into family history, lifestyle factors, comorbidities beyond the checkbox exercise. No real effort to integrate cardiac risk into the treatment equation until I politely reminded them that my heart is not just decorative. Because apparently, oncologists think my heart will just sit quietly in the corner while my prostate gets all the attention.

So why do i think my treatment should’ve been different? Because treating prostate cancer—an inherently heterogeneous disease—like it’s a one-size-fits-all, color-by-numbers project is a fabulous way to miss critical nuances. My treatment should have incorporated those missing variables because, shockingly, they matter. They guide not only treatment choice but timing, sequencing, potential synergy, and side effect mitigation. Ignoring them is like planning a mission to Mars with a weather forecast for Miami.

The consequences of skipping those early steps? Over- or undertreatment, increased risk of recurrence, avoidable side effects, poorer quality of life, missed opportunities for targeted therapy, and, of course, a nagging sense that the system treated the cancer, but forgot there was a human attached to it.

It’s not as if I haven’t flagged it. It was just ignored, because, you know, “I am a doctor and who the f are you?”. The rest of my opinions about my fine radiation oncologist are illustrated in other posts.

Well, Phil, thanks for your persistence. Why do i think my cancer treatment should be different? How entitled of me to expect a personalized, evidence-based medical approach in the 21st century—after all, it’s only my life on the line.

Let’s rewind to the beginning. After my biopsy, it seems the curiosity ended there. No genetic testing. Because who needs to know if i have BRCA mutations or other hereditary markers that might scream, “Hey, this cancer might be more aggressive than it looks!”? No big deal—just roll the dice and hope for the best. It’s not like genomics has revolutionized oncology or anything.

And testosterone levels? Pfft. Why would anyone look into my hormonal history when dealing with a hormone-driven cancer? Clearly, establishing a baseline testosterone level before starting androgen deprivation therapy would be far too logical. Better to just throw Firmagon at the problem and hope my endocrine system doesn’t throw a tantrum.

Let’s not forget the total absence of comprehensive risk stratification. Cribriform patterns? Perineural invasion? Gleason 7? PSA of 26? All very exciting, but rather than contextualizing these in the broader biological narrative of my body, the system seems to have said, “Good enough for government work. Let’s treat this like every other moderately aggressive case.” Individual variation? Overrated.

No deep dive into family history, lifestyle factors, comorbidities beyond the checkbox exercise. No real effort to integrate cardiac risk into the treatment equation until I politely reminded them that my heart is not just decorative. Because apparently, oncologists think my heart will just sit quietly in the corner while my prostate gets all the attention.

So why do i think my treatment should’ve been different? Because treating prostate cancer—an inherently heterogeneous disease—like it’s a one-size-fits-all, color-by-numbers project is a fabulous way to miss critical nuances. My treatment should have incorporated those missing variables because, shockingly, they matter. They guide not only treatment choice but timing, sequencing, potential synergy, and side effect mitigation. Ignoring them is like planning a mission to Mars with a weather forecast for Miami.

The consequences of skipping those early steps? Over- or undertreatment, increased risk of recurrence, avoidable side effects, poorer quality of life, missed opportunities for targeted therapy, and, of course, a nagging sense that the system treated the cancer, but forgot there was a human attached to it.

It’s not as if I haven’t flagged it. It was just ignored, because, you know, “I am a doctor and who the f are you?”. The rest of my opinions about my fine radiation oncologist are illustrated in other posts.

Well, Phil, thanks for your persistence. Why do i think my cancer treatment should be different? How entitled of me to expect a personalized, evidence-based medical approach in the 21st century—after all, it’s only my life on the line.

Let’s rewind to the beginning. After my biopsy, it seems the curiosity ended there. No genetic testing. Because who needs to know if i have BRCA mutations or other hereditary markers that might scream, “Hey, this cancer might be more aggressive than it looks!”? No big deal—just roll the dice and hope for the best. It’s not like genomics has revolutionized oncology or anything.

And testosterone levels? Pfft. Why would anyone look into my hormonal history when dealing with a hormone-driven cancer? Clearly, establishing a baseline testosterone level before starting androgen deprivation therapy would be far too logical. Better to just throw Firmagon at the problem and hope my endocrine system doesn’t throw a tantrum.

Let’s not forget the total absence of comprehensive risk stratification. Cribriform patterns? Perineural invasion? Gleason 7? PSA of 26? All very exciting, but rather than contextualizing these in the broader biological narrative of my body, the system seems to have said, “Good enough for government work. Let’s treat this like every other moderately aggressive case.” Individual variation? Overrated.

No deep dive into family history, lifestyle factors, comorbidities beyond the checkbox exercise. No real effort to integrate cardiac risk into the treatment equation until I politely reminded them that my heart is not just decorative. Because apparently, oncologists think my heart will just sit quietly in the corner while my prostate gets all the attention.

So why do i think my treatment should’ve been different? Because treating prostate cancer—an inherently heterogeneous disease—like it’s a one-size-fits-all, color-by-numbers project is a fabulous way to miss critical nuances. My treatment should have incorporated those missing variables because, shockingly, they matter. They guide not only treatment choice but timing, sequencing, potential synergy, and side effect mitigation. Ignoring them is like planning a mission to Mars with a weather forecast for Miami.

The consequences of skipping those early steps? Over- or undertreatment, increased risk of recurrence, avoidable side effects, poorer quality of life, missed opportunities for targeted therapy, and, of course, a nagging sense that the system treated the cancer, but forgot there was a human attached to it.

It’s not as if I haven’t flagged it. It was just ignored, because, you know, “I am a doctor and who the f are you?”. The rest of my opinions about my fine radiation oncologist are illustrated in other posts.

This is exactly what I am struggling with on behalf of my husband! At diagnosis, I became his researcher, advocate and counselor. Learned everything I could. At a general checkup last August, his PSA came back at 14. The previous year it was at normal levels, but the test was done for an insurance exam, so it is not in his medical records. They tested again 1 month later, and it was at 18. Being that we are with one of the worst HMO providers around, it was 3 months later that they finally got to the biopsy. Gleason score 7 4+3, T2c, localized. Surprisingly, the PetScan was only 2 weeks later and yep, cancer was there. The only treatments offered were surgery and radiation and a "Let's wait 2 months to have things settle before you decide." Even after telliing him it looked pretty aggressive. This was not acceptable to us, so we went and got 2nd opinions, found clinical trials he qualified for and looked at all the ultrasound and laser options available. Surgery and radiation consult appts. were scheduled about 5 weeks after PetScan. The obstruction, delays, difficulty of use and formatting issues in getting his medical records and images to send to the other medical offices was gobsmacking and seemingly deliberate! We found a promising treatment, one with less debilitating side effects, at clinical trial being held at a local CFE University. We planned to pay out of pocket and started the enrollment process. The doctor in charge, rather anecdotally, told me that he just been informed that this world-class University cancer center, at the behest of our HMO, had a "contract" with them to not accept or treat any of their cash paying members who wanted treatment. It proceeded along until the doctor at the University fully ghosted me. Wow, I mean just wow! Rather criminal of them all, I'd say. Then on to getting evaluated for TULSA-Pro, which was his treatment of choice out of all the options. The doctors at that med center finally, after we were all stonewalled and ignored, just got the medical records on their own. We had to go to a local imaging center and pay for the MRI, only to have them tell us there were new spots on the MRI that were not on the PETScan, but weren't able to tell us exactly what it was. So, we opted for surgery and were surprised to get it relatively quickly scheduled. It is next week. My husband told the surgeon about the MRI (which we had on CD) with potentially new information and surgeon says to just come drop it off. Um, but where is your office? They don't list those things for you. 2 days until he got the answer. He was sent to the wrong location. Took him another 2 days to talk to the right person to find the right location. Because the company is its own insurance provider and medical system, accepting this outside medical record was an unknown and highly irregular circumstance and he was sternly told how much this stressed everyone out. They have had it for a week, he put in a follow up and has heard from no one. In the last 8 months, all they have done is the 2 PSA's, the biopsy and the PETScan. He is currently not scheduled for any pre-screening or testing before surgery next week, which indicates they are going to operate simply based on the old information without regard to any changes that may have occurred in the last 4 months. I would lay money on their response being "We'll just deal with anything else later", leaving my husband to further suffer through many more (and you guys know they all are) awful treatments. Being self-employed, we had almost no choice but to have them as our insurance but up until this diagnosis, he has been exceptionally healthy, so it wasn't a problem. We now refer to this medical system as the "Medical Industrial Complex Cartel". No complaining as they also are embedded in the State Insurance Office. So, to get back the point, he is nothing. Nothing to, and in, this process. It was a favorable prognosis in January, but now his whole future is up in the air. Your last 3 paragraphs are spot on, beautifully written and heartbreaking. I just realized how much I needed this outlet; he doesn't want anyone to know and finally, just last week, breezily told our daughters, his mom and brother about his "outpatient, home-the-same-day surgery" so I have been holding his confidence in for the last 4 1/2 months. No one, NO ONE! should have to be treated this way, especially by an entity that takes A LOT of your hard-earned money to do it to you, by their choice! They could offer better care because it is out there and available. I wish us all the strength and fortitude we need to get through it alive... Cheers.

Well, Phil, thanks for your persistence. Why do i think my cancer treatment should be different? How entitled of me to expect a personalized, evidence-based medical approach in the 21st century—after all, it’s only my life on the line.

Let’s rewind to the beginning. After my biopsy, it seems the curiosity ended there. No genetic testing. Because who needs to know if i have BRCA mutations or other hereditary markers that might scream, “Hey, this cancer might be more aggressive than it looks!”? No big deal—just roll the dice and hope for the best. It’s not like genomics has revolutionized oncology or anything.

And testosterone levels? Pfft. Why would anyone look into my hormonal history when dealing with a hormone-driven cancer? Clearly, establishing a baseline testosterone level before starting androgen deprivation therapy would be far too logical. Better to just throw Firmagon at the problem and hope my endocrine system doesn’t throw a tantrum.

Let’s not forget the total absence of comprehensive risk stratification. Cribriform patterns? Perineural invasion? Gleason 7? PSA of 26? All very exciting, but rather than contextualizing these in the broader biological narrative of my body, the system seems to have said, “Good enough for government work. Let’s treat this like every other moderately aggressive case.” Individual variation? Overrated.

No deep dive into family history, lifestyle factors, comorbidities beyond the checkbox exercise. No real effort to integrate cardiac risk into the treatment equation until I politely reminded them that my heart is not just decorative. Because apparently, oncologists think my heart will just sit quietly in the corner while my prostate gets all the attention.

So why do i think my treatment should’ve been different? Because treating prostate cancer—an inherently heterogeneous disease—like it’s a one-size-fits-all, color-by-numbers project is a fabulous way to miss critical nuances. My treatment should have incorporated those missing variables because, shockingly, they matter. They guide not only treatment choice but timing, sequencing, potential synergy, and side effect mitigation. Ignoring them is like planning a mission to Mars with a weather forecast for Miami.

The consequences of skipping those early steps? Over- or undertreatment, increased risk of recurrence, avoidable side effects, poorer quality of life, missed opportunities for targeted therapy, and, of course, a nagging sense that the system treated the cancer, but forgot there was a human attached to it.

It’s not as if I haven’t flagged it. It was just ignored, because, you know, “I am a doctor and who the f are you?”. The rest of my opinions about my fine radiation oncologist are illustrated in other posts.

@hanscasteels wrote

«No genetic testing. Because who needs to know if i have BRCA mutations or other hereditary markers that might scream, “Hey, this cancer might be more aggressive than it looks!”?»

That sounds very frustrating. The cancer centre here did my genetic testing through Invitae, a U.S. firm. They just asked my permission, took a sample, and then mailed it off. I was able to see the results online in a few weeks (that's how I know I don't have the BRCA1/2 mutations). It might be worth mentioning it to your care team again, since it costs them practically nothing.

It's frustrating that the quality of care varies so much, depending on where you live and which oncologist you land with. We've even had a few people here in the forum report problems at top facilities like Mayo.

Are you certain it wouldn't be possible/practical to get into a different facility, like Princess Margaret in Toronto (an hour away from you)? I don't think you'd have to give up your current care until you were accepted there.

I hope things improve for you. Here's the link to the firm that did my genetic testing:
https://www.invitae.com/

@hanscasteels wrote

«No genetic testing. Because who needs to know if i have BRCA mutations or other hereditary markers that might scream, “Hey, this cancer might be more aggressive than it looks!”?»

That sounds very frustrating. The cancer centre here did my genetic testing through Invitae, a U.S. firm. They just asked my permission, took a sample, and then mailed it off. I was able to see the results online in a few weeks (that's how I know I don't have the BRCA1/2 mutations). It might be worth mentioning it to your care team again, since it costs them practically nothing.

It's frustrating that the quality of care varies so much, depending on where you live and which oncologist you land with. We've even had a few people here in the forum report problems at top facilities like Mayo.

Are you certain it wouldn't be possible/practical to get into a different facility, like Princess Margaret in Toronto (an hour away from you)? I don't think you'd have to give up your current care until you were accepted there.

I hope things improve for you. Here's the link to the firm that did my genetic testing:
https://www.invitae.com/

This is exactly what I am struggling with on behalf of my husband! At diagnosis, I became his researcher, advocate and counselor. Learned everything I could. At a general checkup last August, his PSA came back at 14. The previous year it was at normal levels, but the test was done for an insurance exam, so it is not in his medical records. They tested again 1 month later, and it was at 18. Being that we are with one of the worst HMO providers around, it was 3 months later that they finally got to the biopsy. Gleason score 7 4+3, T2c, localized. Surprisingly, the PetScan was only 2 weeks later and yep, cancer was there. The only treatments offered were surgery and radiation and a "Let's wait 2 months to have things settle before you decide." Even after telliing him it looked pretty aggressive. This was not acceptable to us, so we went and got 2nd opinions, found clinical trials he qualified for and looked at all the ultrasound and laser options available. Surgery and radiation consult appts. were scheduled about 5 weeks after PetScan. The obstruction, delays, difficulty of use and formatting issues in getting his medical records and images to send to the other medical offices was gobsmacking and seemingly deliberate! We found a promising treatment, one with less debilitating side effects, at clinical trial being held at a local CFE University. We planned to pay out of pocket and started the enrollment process. The doctor in charge, rather anecdotally, told me that he just been informed that this world-class University cancer center, at the behest of our HMO, had a "contract" with them to not accept or treat any of their cash paying members who wanted treatment. It proceeded along until the doctor at the University fully ghosted me. Wow, I mean just wow! Rather criminal of them all, I'd say. Then on to getting evaluated for TULSA-Pro, which was his treatment of choice out of all the options. The doctors at that med center finally, after we were all stonewalled and ignored, just got the medical records on their own. We had to go to a local imaging center and pay for the MRI, only to have them tell us there were new spots on the MRI that were not on the PETScan, but weren't able to tell us exactly what it was. So, we opted for surgery and were surprised to get it relatively quickly scheduled. It is next week. My husband told the surgeon about the MRI (which we had on CD) with potentially new information and surgeon says to just come drop it off. Um, but where is your office? They don't list those things for you. 2 days until he got the answer. He was sent to the wrong location. Took him another 2 days to talk to the right person to find the right location. Because the company is its own insurance provider and medical system, accepting this outside medical record was an unknown and highly irregular circumstance and he was sternly told how much this stressed everyone out. They have had it for a week, he put in a follow up and has heard from no one. In the last 8 months, all they have done is the 2 PSA's, the biopsy and the PETScan. He is currently not scheduled for any pre-screening or testing before surgery next week, which indicates they are going to operate simply based on the old information without regard to any changes that may have occurred in the last 4 months. I would lay money on their response being "We'll just deal with anything else later", leaving my husband to further suffer through many more (and you guys know they all are) awful treatments. Being self-employed, we had almost no choice but to have them as our insurance but up until this diagnosis, he has been exceptionally healthy, so it wasn't a problem. We now refer to this medical system as the "Medical Industrial Complex Cartel". No complaining as they also are embedded in the State Insurance Office. So, to get back the point, he is nothing. Nothing to, and in, this process. It was a favorable prognosis in January, but now his whole future is up in the air. Your last 3 paragraphs are spot on, beautifully written and heartbreaking. I just realized how much I needed this outlet; he doesn't want anyone to know and finally, just last week, breezily told our daughters, his mom and brother about his "outpatient, home-the-same-day surgery" so I have been holding his confidence in for the last 4 1/2 months. No one, NO ONE! should have to be treated this way, especially by an entity that takes A LOT of your hard-earned money to do it to you, by their choice! They could offer better care because it is out there and available. I wish us all the strength and fortitude we need to get through it alive... Cheers.

I think your points are valid, it seems logical that doctors deep dive into all these areas before suggesting treatment. A couple thoughts I have on this:

- Genetic testing. I'm two months since RARP and ~6 from initial "oh shit" moment and I literally just did this consult, blood draw and submission for this. It was scheduled back in October for this weeks test. The only reason my doctor really wanted it was because I had kidney cancer before. Yes, you can test for BRCA1 and BRCA2, but I learned a lot when spending over an hour with the genetic counselor. First, this is a comprehensive 70 gene test that is still new and evolving and is designed for every person, not just PC cancer patients. That's a lot of people to test. And, because it's new, it isn't staffed to handle this volume right now, hence the wait. It's also around $5,000 to have this test done. It also is not any real indication of anything that may impact treatment - from what my counselor told me - it MAY have an impact, but she stressed repeatedly to not read these results as another "oh shit" but rather as a possible reason because this science is very, very, new. I think all of these factors, particularly that treatment may not change whatsoever as the result of them, likely played a role in you not getting one. By the way, my urologist was very "no big deal" about this test, because he said it won't change what needs to happen now but it's good to have done given your history - so he had zero concerns about doing it 6 months later. Now, if BRCA1/2 are problems then it might change the recommendation that "well, with your Gleason 7 + Decipher 0.68 + BRCA1/2 you might consider ADT now because..." then that's valid, but still only valid after the initial treatment. For me, I would still want to get deeper into this genetic test because I was told pretty clearly, this is more about "maybe why it happened" and not necessarily an indication of what it will do in the future. Like Decipher, it's more of a data gather tool to say that X number or men with these parameters have a Y increased chance of recurrence down the road.

- Family history, etc. This all comes out in the genetic test, so I think the same reasons apply. I was asked, from several doctors, anecdotal history questions that directly impact IF I should have a genetic test, such as breast cancer or PC history. Those answers, along with my kidney cancer, said "yes, let's test". Every consult I had, the history of family disease was on the intakes and questionnaires - so, at least for me, I was asked about history repeatedly but not a "deep dive", per se.

- Baseline testosterone. I don't know how having a baseline upfront is helpful since you have the cancer in the first place. I don't know any of the costs or anything of doing this, but I wasn't given a T test either and would assume this occurs much later, before you go on ADT. What change would occur in your initial treatment if your T was high or low? The cancer still needs addressed. Perhaps that's why this didn't come into play.

I guess the thought I have is that having these things done when first diagnosed was unlikely, at least as far as my knowledge, to impact your initial treatment of "let's get it out or zap it now".

Let's say you had BRCA1/2, would surgery be different? No. Would radiation be changed to accommodate a genetic result? No. Would treatment options after the initial treatment be changed? Maybe. Would it open you up to more "fringe" treatments such as proton or TULSA? Probably, but you have to talk to specialists from those areas since they are not yet considered mainstream due to the lack of long term efficacy results.

I get your frustration and if you are now in secondary treatment I can totally get how you might be super pissed that maybe if these things had been done up front then maybe things would be different now. I just don't know if you had any of these things on day 1 how it would have changed much of that initial treatment - and maybe I'm off base, perhaps you've been informed that these things would be night and day differences - but it's just not how these things were explained to me from any doctor I consulted with.