Francis Collins, former head of NIH, writes about his recent diagnosis of prostate cancer:
Things took a turn about a month ago when my PSA rose sharply to 22 — normal at my age is less than 5. An MRI scan showed that the tumor had significantly enlarged.... New biopsies taken from the mass showed transformation into a much more aggressive cancer.... Thus, that PET scan, which was ordered to determine if the cancer had spread beyond the prostate.... A few hours later, when my doctors showed me the scan results, I felt a rush of profound relief and gratitude. There was no detectable evidence of cancer outside of the primary tumor.
This all got done in a month? Here's how things have played out for me:
- November 18: PSA test = 15.7.
- February 7: PSA test = 17.
- February 27: Meet with nurse to answer some apparently pointless questions.
- March 7: PSA test = 25.7.
- March 29: Biopsy performed.
- April 9: Biopsy results delivered.
- April 10: I send a note to my urologist asking about the upcoming test schedule. I'm informed he won't speak to me. Ever. He's too busy.
- April 16: Bone scan scheduled.
- April 18: CT scan scheduled.
- May 17: PET scan scheduled.
All told, it will be six months between the first high PSA result and a PET scan to determine how far the cancer has spread.
I've been wondering quite a bit about the fact that no one seems to have any sense of urgency about my prostate cancer, but I figured maybe this was normal. Even following the biopsy result of "large and aggressive" it will be five weeks before all the scans are complete and treatment can begin. This is longer than the entire time that Collins had to spend from high PSA to PET scan result.
How much does a "large and aggressive" cancer grow in six months? Has my treatment been unusually slow or did Collins get treatment that was unusually fast? I have no idea who I could ask to even find out.
Your urologist? Your oncologist? FFS they should be falling all over themselves to answer questions just like this without your even asking.
From what little I know -- my dad died of metastatic prostate cancer -- MOST prostate cancers are "indolent" (indeed it's estimated that upwards of 1/3 of men have active prostate cancer that never goes anywhere or has any noticeable effects), but SOME can indeed be "aggressive," and what eventually gets you (as it did my dad) is when it metastasizes, often to the pelvic bone and then INTO the bone, and once it gets into bone marrow it spreads crazily and it's game over in months.
Based on that little I know, whether it has metastasized or seems imminently likely to do so should be the primary question, and FFS it should be answered with URGENCY so that treatments (eg "bone hardening") can be started if necessary. I don't understand the delay, and if I were you I'd be shouting about it, either to hurry them up or to get them to tell you that it ain't no matter at this point. And from what you say, I'd find a new urologist in a hurry and maybe file a complaint about this one.
Kevin, I don't mean to be cynical, but ...... if you're going to get a PET scan anyway, there's no reason to not get it immediately. So why did Collins get it done so quick? B/c he's got *suction*, plain and simple.
I remember a friend of mine who has severe and debilitating nerve issues in his arms and some other parts of his body. It was (is!) extremely painful and he was undergoing many rounds of tests and treatment. He's a well-off guy so he was paying for a lot of stuff out-of-pocket. AND YET he spent an inordinate amount of time coordinating getting all the tests done, hounding people to schedule stuff, etc. When he would see his doctors, they would be astounded at how quickly he was getting all the diagnostics done, all the consultations, b/c tyically it takes so much longer.
Eventually, he got fed up with all this bullshit, moved back to Greece, and the medical system there has dealt with his problems much, much, *MUCH* more expeditiously.
There is no good reason for it to take a goddamn month from when a test comes back positive (hence, move on to the next step), and the next step. Except that hey, we're going to keep the queue full, keep medical system capacity as fully-utilized as possible, and that means there's no gaps in the schedule whatsoever. Unless you're "important" in which case room will be found.
Sure sure sure, typically it's no big deal, nobody'll die of waiting. But the point is, if you're GOING TO DO THE TEST ANYWAY, there's no reason not to do it *tomorrow* instead of *in a month*. Except that to do it *tomorrow* requires greater slack in the system, than if they can typically schedule you for a month out.
In freight shipping terms, you're being treated as bulk wheat, not fresh salmon.
I agree. There is a service that provides first responders much the same service that professional athletes get from their franchises. A sports medicine physician noted that workman's comp took inordinate amounts of time to get to surgery when surgery was the first and best option. Disgusted, he pieced together a collection other physicians that were like minded. If the department/district/city/county put in for a nominal fee injuries are imaged and diagnosed within 48 hours, and surgery could be within the week (these are the injuries that aren't usually solved with surgery as the obvious solution eg open fractures, reduction of long bones, spinal fractures etc but generally wind up being surgical knee, shoulder, joint injuries etc). I'm not saying that physicians are stringing injuries along to maximize payments but I'm also saying that. Of course disease and injury aren't totally similar but in the industry of first responding the occurrence is disease like.
Suction? Do you mean traction?
I just heard him on NPR saying on the "aggressive cancer scale" that goes from 0 to 10, his is at a 9.
For whatever that's worth.
Kevin mentioned having a Gleason score of 8.
I see that an 8 is considered to be in Gleason Group 4, while a 9 (or 10) is in Group 5. Whatever that's worth.
https://www.merckmanuals.com/professional/genitourinary-disorders/genitourinary-cancers/prostate-cancer
A former director of the NIH gets better care than a blogger.
Collins got special treatment. He's on the professional courtesy plan where doctors scratch each others backs. My wife was diagnosed with breast cancer and they put her on an 8 month plan to treatment -- in 8 months they'll start treating it. Fortunately, her son is an orthopedic surgeon and got things moving considerably faster. But without him? She would have been on your schedule.
Best health care system in the world!
Best health care system in the world!
There are plenty of problems with America's healthcare system. However, we really can't draw conclusions from an anecdote or two (about anything). And the evidence strongly suggests that, at least when it comes to cancer treatment, the US actually does have one of the world's strongest systems.
https://www.healio.com/news/hematology-oncology/20180131/us-cancer-survival-rates-remain-among-highest-in-world#:~:text=Five%2Dyear%20survival%20for%20the,through%202014%20from%20CONCORD%2D3.
Also, it may be that Francis Collins's connections got him faster than typical service. But I'd be shocked if connections are irrelevant elsewhere.
I’d say Collins’s connections got him faster than typical service but Kevin seems to be getting slower than typical and that his urologist won’t talk to him I’d say unacceptable service.
My stepson, who is in a position to know, being chief of orthopedics, says it is normal. That still isn't data but it is a huge step beyond anecdote.
Sigh....is your Urologist with City of Hope? You are a tremendous success for them, I would imagine, and so you should have your own pull there, also knowledge of how they work.
The vector of change is not good...I had to go back and delete a couple paragraphs I had written...misunderstanding the rate of change....(so you have to go back and correct things...sometimes we are wrong...grin, that's me....so you correct it), but regardless, circling back, did you have any sexual activity before any of these blood draws? And I mean any, from masturbation to whatever...this can really skew the results of a PSA {imo, I've been arguing this with City of Hope for some 7 years now....some Dr's agree, some not....regardless no sex before your next reading for 5 days}). I have been putting off my prostate ( problem), for many, many years now...City of Hope has been good to me.
The delay, if you are with City of Hope, is not acceptable....push politely! Best Wishes, Traveller
My father and his father both died of prostate cancer, in both cases after >20 years, each dying in their early 90's. So we watched my PSA level carefully and when it jumped suddenly I got a biopsy scheduled within a month or so. The biopsy was positive and I chose to have surgery, which was scheduled 3 months later. I chose the surgical approach so that we could have lab results if the capsule had been penetrated - which would indicate additional treatment. It appears that we were early enough and my PSA levels have been below measurement threshold for 5 years now. I took my damage fast and early. My grandfather had Radium pellet treatment and my father had radiation beam treatment.
This sounds much more like the Ksiser that I & some others I know have experienced than what you previously reported from your treatment in California. There's little time for discussion, & labs are everything - but getting x-rays following multiple injuries? don't rush them.
And you are emphasizing what I mentioned here recently, that there has been entirely too much repetition of that likelihood that many men will develop that cancer, but that it will likely not progress rapidly or be fatal. That's why age cut-offs that Kaiser seems to have for some previously recommended routine tests for women have concerned me. I'm still disappointed about my last 15 minutes with my newest doctor - hope that you can either get a call or video call soon or prevail upon that facility to switch to a qualified expert in the field soon! You persisted in getting into a new treatment for your earlier diagnosis, so hope that this lasest blip won't deter you.
PS If you are not with City of Hope, I can give you a reference...but you are a very smart guy, so I will shut up...still, if you want another look at this, let me know. Best Wishes, Traveller
I’m ever so glad Kevin read that article. I was going to add it but realized that medical folks sort of get different care….. not always better, as I have seen many negative outcomes. The best bet is to find someone you trust and who has been highly recommended. Again, you may have to wait.
Folks, Kevin-- Francis Collins is not only a former NIH head who undoubtedly knows just tons of medical people on the inside (and maybe more important, they *all* know who he is), he's a medical doctor himself *and also* a current bigwig on a White House disease task force, *and* Biden's acting science advisor, *and* co-chairs the presidential advisory council on science and technology. *And* he has a familial history of the aggressive form of prostate cancer. OF COURSE he's getting VIP treatment! At a guess, maybe the degree of attention a second-tier cabinet official would be getting.
This definitely isn't to disparage him. I vaguely remember some of his public appearances and some articles on him over the past few years. He's one of the very few medical/scientific people who managed to preserve their integrity in the trump years. I think highly of him. And that means I have to recognize that he's very elevated in the DC hierarchy and is going to get exceptionally responsive medical care for that reason alone, and on top of that, out of personal and professional regard, his practitioners are going to be falling all over themselves to give him the absolutely most responsive treatment in their power.
So yes, Collins has been getting an extremely unusual level of care that isn't often available to the ones we ordinary folk care about, even though they deserve it every bit as much as Collins does. And he's gracious enough to say so himself, to his credit.
I’m suspicious about Kevin’s insurance. I’m in the SF Bay Area and had private insurance (not Kaiser) and now am on Medicare. Most things get scheduled really quickly and I can usually see the doctor within a week or so. Test results are available online in a day or two.
I had an MRI some years ago (unrelated to prostate) and a small smudge appeared. The doctor was concerned so ordered a bone scan. This happened within a week.
Fun fact. The bone scan uses a nuclear isomer of technetium which was discovered at UC Berkeley by Dr. Seaborg. I got to meet him once a long time ago.
“ I’m in the SF Bay Area and had private insurance (not Kaiser) and now am on Medicare. Most things get scheduled really quickly and I can usually see the doctor within a week or so. Test results are available online in a day or two.‘
Me too. My prostate cancer was diagnosed 6 years ago. UCSF was great.
The analogy I use is the airline industry. Thanks to private equity in the health services industry, optimization of resources to improve profit margins for the best possible return on investment is the most important thing. Like an empty seat on a plane, a doctor not seeing a patient or a diagnostic scanner not in use is a negative on the balance sheet. Better to be overbooked and have delays than allowing a revenue source to sit idle.
You definitely should consult with another Urologist. Maybe two. And probably with an oncologist. If your insurance won't cover this, pay it out of pocket. It'll be worth it.
My cancer treatment was a slow start as well (also Kaiser) but not that slow. I had a first diagnosis on May 6 and started treatment on July 2 - so 8 weeks. But at the time I recall being frantic to get going and angry that it was taking so long. I agree with others about stirring the pot to push things forward.
Urologists are very busy. They have a lot of patients. They need to spend most of their time seeing patients. Their specialty propably also does not attract a lot of other qualty specialist techs. Spending time explaining and discussing each patients case has a high opportunity cost for the other patients. My urologist does schedule telecoms to reveal urinalysis results and discuss the treatment plan.
I had a PSA of 4.5 in January of 2023, saw a urologist on April of 2023 and it had moved up to 5.7. She did a biopsy that same month (within a week, as a matter and fact) and since it came up Gleason scale 7 (4+3), she recommended removal. After getting a second opinion from a radiologist in early May, I had a radical prostatectomy in June. Five months from start to finish.
The difference in my case may have been that I was 55 at the time and had family history, so they took every step along the way quite seriously. The common saying is that you might die with prostate cancer but not from it, but it's a slightly different story when you've got at least a 4+3 at my age. They usually recommend aggressive treatment in that case, and they accelerate the process. In fact, the main reason why they waited until June for the removal was because they needed to let any inflammation from the biopsy subside first.
I'm three PSAs down since removal, all of them <.10 (undetectable). I don't regret the choice to kill it with fire. Now, if it does return, radiation is still a viable option for treatment. It doesn't work the other way around.
My prostate adventures started on a similar trajectory to yours. In the initial stages of diagnosis and treatment no one was in a hurry at all.
(BTW, I recommend Dr Patrick Walsh's book. Make sure you get the latest
edition because Amazon and B&N are happy to sell old editions too.)
In contrast, my wife had had a ductal breast problem where the biopsy was the lumpectomy about 30 years ago. 20 years ago a lump appeared on her mammogram. There was an immediate biopsy and a mammectomy 2 weeks later. The other breast went the next year a couple of weeks after a DNA test indicated succeptability. Pathology found many tiny tumors.
Dec 2017 - My PSA shoots from 4.2 to 15. My PCP gets me an appt. w. a urologist in a "smallish" practice (Currently ~8 MDs that work at 3 locations in the area). This practice was very highly rated 25 years ago. m
Jan 2018 - I see the first urologist. He orders another PSA and schedules a biopsy for a couple of weeks out. The PSA has gone down to 9.
Feb 2018 - I get back a Gleason score of 7 and he recommends an MRI and to consider a prostatectomy. At this point I decide that this is the wrong urologist because the practice seems to be in decline (large space with few patients/doctors), there's dried blood on the floor, and he admits to having done around 200 prostatectomies in 25 years of practice. Also, he reveals that they'll have to wait at least 3 months for the biopsies to heal before doing the MRI, which he schedules.
Feb 2018 - I talk to a friend who's on the associated medical school faculty. He gets me some direct phone numbers that put me in touch. with their hospital's collaborative team for PC. We discuss my situation and schedule an all-morning intake meeting for a few days after the MRI.
July 2018 - I get the MRI done, including the ext mra coil up my butt to improve the resolution. The results show 3 small lesions with a total volume of less than 1cc. One of them is right up against the capsule.
Aug 2018 - I have my appt. with the collaborative team: a nurse navigator, a nurse practitioner, a radiation oncologist, and the hotshot urologist who'd done over 4000 robotic prostatectomies at that point. After much discussion, I ask for a prostatectomy for the sake of getting definitive results and for having side effects that are the worst immediately after surgery, but get better. We agree that though I was just older than their usual cutoff for prostatectomies, I was still in good enough physical condition. If I went the radiation route, they would have done another MRI and set of image-guided biopsies. (Aside: MRI guided biopsies are "best practice" and the ultrasound guided stuff the first urologist did just threw a 4 month delay in the process.) Anyway, we started the process of scheduling the surgery. The urologist takes one look at my hernia scar and says there's no way he'll operate on me because of the danger of interference from the hernia mesh. He refers me to the competitor across town who's among the best at open prostatectomies, especially "nerve-sparing" procedures.
Nov. 2018 -- I see the other urologist and beg him to operate on me. He agrees. This guy and his team of residents and fellows have also done over 4000 procedures.
Jan 2019 - Prostatectomy. Pathology says clear margins, but does find a 4th lesion.
Jan 2019 - Nov 2021 - Recovery. "Everything" is fully functional after 7 month. Men have 2 sphincters in the urinary tract. The prostatectomy takes out at least one of these. With one left I leaked a little when laughing, farting, etc. I regard this as a minor inconvenience. I realized the problems women face with only one.
One issue was that my PSA was still detectable at .09 in March 2029 and it crept up very slowly to around .20. The urologist's explanation was that it's difficult to distinguish bladder tissue from prostate tissue. Rather than risk injuring the bladder further, they may have left a small amount of benign prostate tissue behind. Indeed, the medical literature mentions this.
Nov. 2021 - My PSA shoots up to .70. The urologist orders a bone scan and a PET scan that were done in Dec. 2021.
Jan 2022 - PSA is now 1.4. The PET scan shows prostate tissue localized to the prostate bed. I consult with a radiation oncologist who recommends external beam therapy. I get scheduled also with a medical oncologist with the soonest appt. in August.
March 2022 - I get frustrated with the wait, so I call the navigation nurse at the other place. She gets me scheduled to see radiation oncology in her hospital.
April 2022 - This radiation oncologist concurs with the other one, but adds that although my PSA level was not high by "healthy man" standards, the rate of increase is very worrisome, i.e., could metastasize in 7-10 years.
June-Aug 2022 - I get radiation therapy. The PSA has been undetectable since then. Radiation side effects have been nasty and I still haven't fully recovered.
A high PSA reading triggered a guided MRI biopsy which came in with a Gleason score of 8. At that point my urologist asked for a set of tests to check for spread and bone density which were done within a month as I recall. I was 71 at the time, on Medicare with a backup medical plan (Blue Cross/Shield) from my retirement. I chose to have radiation (intensity modulated radiation therapy), and the set of 45 visits were spread out across 2 1/2 months. I also took Orgovyx for 18 months to drop my testosterone levels to zero and starve any remaining prostate cancer cells. Low T causes hot flashes which were annoying but no big deal. The radiation treatment completed in mid-Dec 2021. Side effects were transient irritation of the bowel during the initial treatments (stayed close to a bathroom) and no other issues that I can recall. Since then my PSA level has been undetectable.
I don't know the timelines, but three men in my family have been diagnosed with prostate cancer:
My uncle, who got a diagnosis he didn't like (positive), doctor shopped until he got a diagnosis he did like (negative), then noticed a year or so later that he was having increasing pain, because the cancer, having been completely untreated, was now in his bones. He's dead now.
My father, who got a diagnosis, and as quickly as he could had that sucker removed from his body to eliminate even the smallest chance of spread. He's in good condition now.
My unrelated uncle, who got a diagnosis, treated it, and was unsuccessful. He's dead now.
I intend to follow my father's example if and when necessary.