I have been seeing post saying poeple being diagnosed with metastasized PC.
I was diagnosed with PC metastasized to my bones, after being under urologist care for 18 months
I am wondering if poeple who get initially diagnosed with metastasized PC, whether it is because they were not under medical care, doctors did not offer PSA test, or doctors simply mess up.
I have the beleif that no one under doctor's care should have initial diagnosis of metastasized PC.
We live in the UK, so Doctors here don't 'offer' a PSA test unless they suspect something. Even men that ask are often turned down!
My Husband (62 at the time) went to the Dr, only because he had a pain in his left side of his stomach.
Had a quick examination there and then, and the Dr did a DRE , told us he didn't like the 'feel' of it and was at the hospital the following week. A week later told Cancer , PSA 320 already metastatic, to say it was a bombshell is an understatement.
Seems NOW that Men at 50 are offered a well man check. My Husband kept fit all his life and didn't go to the Drs unless he felt unwell. We had never even heard of a Prostate before his diagnosis...as you can imagine, like yourself we are totally gutted.
UK here as well. I had a well man check at 50. PSA check was not offered. I remember saying that I had no family history as I am adopted but they just ran the standard tests only. Everything came back ok. I was under my GP for a suspected inguinale hernia but it took me getting a 2nd DVT in my legs at age 53 for a PSA to be offered. Like you I had never heard of PSA until bang, sorry Sir your PSA is 1311. It's not just education of men needed, it is the education of GPs.
Hello, also from the UK. My Dad (64) had a similar bombshell diagnosis this year. He was suffering with awful back ache for several months. He went to the GP on several occasions. Even with a DRE the doctor thought there were was no cause for concern and referred him for physiotherapy believing it was a slipped disc. 2 months later and he woke up one morning and could no longer walk. Went to A&E, they refused to give him an MRI scan. He went back the same day - he finally had it and they found PC had spread and he had spinal cord compression, PSA 730. The diagnosis completely came out of nowhere - apart from the back pain, he had no other real symptoms. I was fuming that the GP didn't follow it up earlier, especially at my Dad's age and now he cannot walk unaided and I do wonder if it would have been different if he had been diagnosed earlier.
I am really sorry to hear that your Dad can’t walk unaided. My case is almost similar with him. I also can not walk unaided because of PC tumor spine compression but through determination and hard work, after 2-3 months I am already walking on my own. Now 10 mos. after surgery it’s almost 100% recovered. 🙏🙏🙏💪💪💪
It's upsetting....Even now NHS through government advice are talking of reducing any checks,
Nonsensical reasons
But I believe there's a massive increase in APC.....
We eating, drinking, breathing crap and something is doing it?
I thought it was for old men having dribbly wee....
Not young men with young kids with APC and high Gleason scores???
I was 49 and wasnt taken seriously or checked for prostate cancer even though I said I thought it may be.....
It was a young young woman doctor at GPS surgery giving me tablets
I was having problems with slow wee but no nocturia, I decided to see my GP (a very rare occurrence) however I had not factored in the difficulty of getting past reception!
This was during covid so getting a face to face was next to impossible, reception told me there were no appointments available and I had to ring in on Monday to get an appointment next week. I rang Monday first thing and just got the engaged tone for the first hour or so, when I did finally get through all that weeks appointments were booked! This happened a few times.
Eventually I got a phone appointment and my GP said it's probably just BPE, all old men have it so no worries, bye bye.
Several months later a mens health charity (CHAPS) offered PSA tests in my area so I put my name down.
It came back PSA of 130! Long story short, Gleason 8, stage 3a, no visible metastases and clear bone scan, although of course it doesn't mean the little suckers aren't spread all over waiting to pounce later on!
My conclusion on this evidence is, we in the UK don't have a National Health Service, we have a national disease treatment service. A properly functioning health service would spend far more time and money on disease prevention and screening, in the long term this could save huge amounts of cash as screening must cost far less than treatment.
Not exactly correct in the 3 months it took me have prostate removed I became metastatic. I am positive for BRCA2. If we hadn't been diligent checking PSA I would have been in trouble
Even though I initail saw the UR because I had blood in my urine, I was put on a Waiting and Warch schedule. It metastasized somewhere along the way into Gleason 8 before any action happened. Did have radiation initially and have been on ADT ever since except for a recent 4 month vacation. I tell everyone I can about PCa in hope of helping someone.
Hello,
In my case it was because I was unaware that I was in trouble. It had been three years since my last PSA test which came back perfectly normal. When I started having back pain and more frequent urination my family doctor suggested a PSA test. It come back at 1700 (not a typo). Scans indicated that the prostate cancer had metastasized to my bones from my neck to my knees. That was 10 years and 6 months ago. If I can offer one piece of advice, if you have widespread metastases then you need to be under the care of an oncologist rather than an urologist. Good luck!
100% if you have metastases you should be under the care of an oncologist. Not a urologist. And why should this even be a question? Why would a urologist not have involved a medical oncologist right away when they discover serious progression?
The biomechanics of urine management, and the tools of the surgeon or the radiologist are all focused on specific physical body parts. But prostate cancer is a system-wide issue once it is metastasized. There are likely millions of enthusiastic prostate cancer cells swimming through your body in the blood vessels. And eventually there will be lots and lots of tiny mini-metastases. You can't cut or irradiate, even find, them all. You might win the battle and lose the war! (And yet the mechanical specialists still get paid - see "moral hazard". Or in colloquial terms "When all you have is a hammer, pretty soon everything begins to look like a nail".)
So "metastasized" is the domain of the medical oncologist.
Only the medical oncologist has the mastery of the full domain of biology and chemistry that you need to treat metastatic prostate cancer at the system-wide level. We are now in the realm of system-wide drug therapies such as ADT and ARPIs and chemo.
Hopefull - I think you'll find my comments from over a year ago on this topic to be supportive of yours. It's outrageous that more and more initial diagnoses of prostate cancer are where the cancer is already-metastasized. A scandal. And a completely avoidable failure of public policy. Here's my original post on your topic:
healthunlocked.com/advanced...
(BTW, my username used to be "JHMX"; now it's changed to "JohnInTheMiddle".)
The only time most men hear about their prostate it's generally too late.......
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 11/04/2023 6:05 PM DST
At the age of 59years and and 11 months my husband was hospitalised for eight days with severe urosepsis. He was dangerously ill, with blood in his urine etc.
They didn’t test his PSA as ‘it was a single episode in a man under 60 years old’. Unbelievable!!
Two years later he was PSA 1120, Gleason 10 with skeletal metastases everywhere. We too wonder what it will take for this to become a routine test. We understand the implications of over testing those whose raised PSAs will amount to nothing but there needs to be a sea change in attitude towards preempting this condition.
Also in UK. For at least 10 years I had slowly growing signs. I went to general practitioner several times. Once I wrote a list of signs, which included bone growth on my arms and shoulder, only to be told that she would only deal with the first sign on my list and to make an appointment for the next week. I did, the GP offered viagra. Another told me that I was depressed. At the start of 2021, after a fall climbing a mountain, I was in pain. This time the GP ordered an X ray. This showed a shadow on the lung, so he followed up with MRI and bloods. PSA 3900. The pain got worse and eventually I collapsed and was taken by ambulance to A&E then admitted to oncology ward where I had radiation and other treatments. Weeks after this I finally met a consultant who told me that it wasn't really worth treatment as I'd had my four score years and ten (I was 74). Despite this we asked for chemo which I had. Six sessions. After the third I was quite ill with uncontrollable diarhoea. The following morning I had a call from the oncology department to ask if I was OK. That was certainly not standard, so I leave you to draw your own conclusions. I was then put onto Firmagon. The first home dose was given by the district nurse. A bit sore as it was the standard quick in and out and not sc. The nurse never came back and my wife gave me the jabs for a couple of months. Now I give them to myself. In the meantime I asked for my patient notes from district nursing. Eventually I got them to find that the first jab given by the nurse had been recorded with the wrong drug. I questioned this only to be told that the same drug often had different names; it was OK!
I'm still on Firmagon, and have had the usual side effects, but with my last PSA at 1.0 I am very happy. I have faith in my current GP who acted quickly after the Xray. I am however 4" shorter than I was and have one side lower than the other.
I'm sure that I cannot be the only man in the UK who has been treated this way. There are many media based pleas to men to be aware of prostate cancer, but to what end?
Hubby had annual PSA checked starting at age 50. He went from normal to PSA 16 in 12 months (see bio) Mets to bones no other symptoms.
My situation is similar. At age 58 my PSA went from normal (2.8) to 56 at my next PSA test 16 months later, and had hip/pelvic bone mets. The only symptoms I had were some relatively minor BPH symptoms. I constantly wonder if delaying my annual physical by 4 months allowed the PCa to become metastatic. I don’t remember the reason for the delay but I certainly regret it now.
It has been said that PCA is slow growing, but it kicked in rather quickly in our case. Hubby was in lots of pain and discomfort due to "frozen shoulder" while waiting for an MRI which was being delayed due to covid. I have been wondering if the cancer was present, yet kept in check by his body until the very stressful time with his shoulder came into play, at which time it went amoc. Just my own theory.
My husband was in great shape and never missed his yearly physical at the Doctor. At 47 years old (in the US) he started having urinary retention issues. He saw a urologist after the 1st retention event. He had to be catheterized at multiple ERs due to retention over an 18 month period. After each he visited his urologist. His father had been diagnosed with Pca a few years prior to my husband's issues- which was in my husband's medical history collected at the urologist. We had no idea what a PSA was- had never even heard of a PSA. His urologist said he was too young for Pca when my husband inquired if this could be related. No DRE was done either. He did have an ultrasound- and given Flomax and a catheter to self catheterize. He needed a special catheter because it wouldn't go in- first one they gave him was too soft to go past enlarged prostate they said. My husband finally talked urologist into a TURP after a year of self-catheterizing. Luckily TURP was done in a hospital because there they test tissue removed from surgeries. They found cancer. Urologist started him on bicalutimide immediately- without doing a PSA. No PSA was done until he had scans 2 weeks later. It was 677 after 2 weeks on bicalutimide so who knows what it truly was at diagnosis. Scans showed multiple metastasis to bones and Gleason 9. PSA is such a simple blood test. Given my husband's initial symptoms and family history- who knows what his diagnosis would have been.
Yeah im the UK and i agree with what I've rwad above, think my brother will be sorted ok because i was diagnosed 8 years ago, so my brothers were tested and now my next oldest has jest been diagnosed and they've caught it early, but i was recently in Hospice for pain management, and same story of people i met, high PSA's mets everywhere, actually being told they have 3-6 months left, yet as a comment earlier, they vang on about awareness, yet none of the GP,'s (unless ya lucky) want to fo even a simple blood test, think its terrible how were treaded here untill you go into palliative care and that also has massive communication problems, call me cynical but i can't help to thinks it's deliberate when were talking a cheap blood test, and i don't believe the lies theres no money, there's tonnes of the stuff, there just robbing us, it's been going on for years !!!!!
The lack of PSA testing and the inconsistency in how it is done from GP to GP is a scandal. Young men should not be getting diagnosed with metastatic PC for the sake of a blood test and an MRI scan.
For me, I had never heard of a PSA test and rarely went to doctor. Put up with symptoms a year or so assuming they would go away. Finally convinced myself to see a doctor who said I had a UTI, then in an afterthought decided to do a PSA. Waiting weeks to see a urologist I felt weak and about to collapse. Emergency room doc put in a catheter and drained 975ml. Numbers showed kidneys in failure. Ambulanced to another hospital where a urologist took over. He did a PSA that read 1230.3 days of catheter and water flushed kidneys back to normal but scans showed already metastatic to bones. Since then I have pushed doctors to add regular PSA tests to annual checkups.
My husband was finally diagnosed after being under the care of a urologist for 3 years for a rising psa. He kept assuring my husband his rising PSA was due to his age. Dwight was in his late 60's at the time. His did escape the capsule and has now gone into lymph nodes as far up as his neck. The urologist did an in office biopsy after about a year, which came back negative. Obviously, he just missed the area where the cancer was and he went by the results of that biopsy for the next two years instead of ordering an mri when his psa kept rising. I'm still bitter to say the least.
I don’t blame you for being angry.I would be so upset too.
I was dx with metastatic cancer throughout my skeleton back in 2014. I had a rising PSA and had two 12 core biopsies which both came up negative other than some inflammation on one of them. So not being a fan of biopsies I figured it was prostatitis causing the PSA rise and didn’t get another biopsy for 2-3 years. Then I started getting lower back pain and just didn’t feel well so I got another biopsy and boom, 11 of 12 cores were positive for Gleason 9 prostate cancer. I don’t know how it was missed in the first 24 cores and I probably should have continued getting biopsies but in the end I doubt it would have made much difference by then, the horse was probably out of the barn already.
Ed
Ed, fantastic! So you are now almost 10 years with metastatic PCa?! This is wonderful. Do I understand this correctly? Can you share more?
That’s correct, God willing it will be 10 years in March 2024. Credit Gods grace, early and ongoing aggressive treatment, and having some really good doctors who specialize in PCa and coordinate with my local regular MO. I was seeing Snuffy Myers for a couple of years until he retired, I give him a lot of credit for me still being here. My current specialist is Dr. Sartor who I was fortunate to become a patient of after Snuffy. Both were/are cutting edge prostate cancer doctors and yes, seeing them requires travel and expenses but well worth it. You can read my profile for more info. Don’t forget the power of prayer, lots and lots of prayers.
Ed
Had my first PSA test in June '21, it was 99. My primary care doc said maybe it's a mistake because he had never heard of a PSA that high. 2nd PSA 2 months later was 116. Biopsy done late September proved cancer with Gleason 9. Had MRI, CT, PSMA scans and several appointments with various surgeons, RO's and MO's. Finally started treatment in January '22. Can't say for sure when mets started, but the beast was allowed to brew for 6 months after being detected. Looking back, I'm disappointed in myself for not pushing to start treatment after first PSA.
My notes from a year and a half ago on the history of and the prejudice against PSA testing - and the horrendous cost -healthunlocked.com/advanced...
Everyone is different. I had regular care, with regular PSA tests, and still had metastatic cancer. What's the difference anyway? If you got it, deal with it.
I was 52 when I was diagnosed with a Gleason 9 which had already metastasized to my right hip. The first (now fired) Urologist said my repeatedly elevated PSA (even after antibiotics) was most likely due to prostatitis. He was very wrong.
Good question! It could be one of several reasons, including the 9nes you mention.
I completely agree with you - your urologist likely missed opportunities to limit the spread of your cancer. My disease had spread by the time I saw a urologist, but once under his care, he quickly performed the biopsy and got tests and scans approved to determine if he was the appropriate provider. Within two weeks, he realized the scope of my issues and ramped me up to an oncologist.
It seems like some urologists like to dabble in the prostate cancer area a bit too much.
For what it’s worth, I was DX with metPC because I failed to get an annual checkup and thought my symptoms were related to a different urological issue (failing to fully evacuate urine) that I lived with with 40 years. I wish I had someone else to blame- although- either way, it is what it is and I have so deal with it either way.
I took a routine PSA test in 2022 and it came out at 24. Few months later biopsy showed Gleason 8 so officially diagnosed at 58, then bone scan thereafter showed mets. Had no clue. Too many years between PSA tests (PSA was 2 in 2018). The way Covid was managed probably f'd things up in terms of me going in for another test in between (but why go for preventive tests when I was 'healthy' and the health system in a panic?)
My story is similar but DX in '21
* warning graphic ( but polite descriptions ! )
Hi All - yep same in uk here - Initially before diagnosis had nocturia ( over urination bed time and early morning ) followed by slow flow in the day - also discovered blood in urine ( stick test )had G.P. finger in bottom - feeling prostate gland (DRE/ Digital rectal exam) sent to hospital had had small pieces of prostate torn out of prostate through hole made between anus and scrotum ( for analysis - pain off the scale ! ( wish I had general anasthetic ! ) discovered Gleason 9 and mets in line to left thigh and spine including through lymph nodes given believed 5 year prognosis - psa 51 and I am 62 am on xtandi full strength and in abdomen fat injections of gosalin - so testosterone - believed feeder of prostate cancer almost at .1 and psa .3 for 2 years latest blood test showing increase in testosterone to 3 - oncologist believes gosalin may need changing - Great John told me that his xtandi failed after 2 years too ! - I have no erections anymore and a penis , I would have been dissapointed with as a child , the occasional hot sweats - Vitamins D3 and K3 seem to help with the headaches and brain fog I have experienced since the beginning of medication and I have had 22 bursts of radiaton to the prostate and surrounding tissue - my wife is an angel with her understanding - hope this helps kindest Raoul (uk)
Hi Raoul, do you happen to know what they might be giving you for your next treatment? Thanks!
Not sure yet Todd but will post here when my meds change - kindest Raoul
I have been looking backwards a bit lately also and I dont know if it is fair in my case.
My GP tested my PSA fairly often I thought at the time and was usually in the low single digits. It was only when some constant tailbone pain ALONG with peeing issues (slow sometimes, often at night, blah blah) that my doc put it together enough to say we better see a urologist - from there biospy etc and diagnosis.
So, in hindsight sometimes I feel my doc should have alerted on those early PSA numbers. I recall I was 2.something, then 3.something, 4.something is when he sent me to urologist.
Maybe I will end it this way - without my doc I might still not been diagnosed??
The 2nd point is I didnt know PSA should really be 0 and if i had I would have been more of my own advocate.
Well not zero zero but yes it’s already high at 2.5 for people in their 50es
“For men in their 40s and 50s: A PSA score greater than 2.5 ng/ml is considered abnormal. The median PSA for this age range is 0.6 to 0.7 ng/ml. For men in their 60s: A PSA score greater than 4.0 ng/ml is considered abnormal. The normal range is between 1.0 and 1.5 ng/ml.”
we have a similar story, but it was years that I did not have a PSA test and I got 50 this year. Slow peeing….mmmmm….might be a benign prostatic enlargement. So I took the test (as recommended at 50 when you have no history of prostate cancer in the family)….bang! The nightmare started!
yeah it is nuts and pisses me off.
I have to own some of this as that tailbone pain was for many months and I thought due to falling the woods, riding my dirtbike etc...
And, alot of guys around my ages also got up often to pee overnight so really didnt think anything was wrong!
Because in 95% of cases it’s benign, as my GP said before my PSA values came back from the lab. I had a complete panel of exams, and excluding PSA with skyrocket values…everything else was perfect, basically the same values I had at 25.
MIne was a series of mistake by my FNP, prescribing Avadart for hair loss due to hormonal issues plus testosterone cream. I believe this led to possibly exacerbating what was starting and misinterpretation of my PSA levels ,which were being articially depressed by the Avadart.
I would say a combination of my DNA and her bordeline malpractice led to having local mets to lymph nodes after surgery and then elsewhere shortly thereafter. . prostate cancer is staken to lightly by men and the medical profession to monitor and prevent it as much as possible.
I take the tact that I need to look ahead and deal with the situation I have now. That is aniety provocing and depressing enough.
Take Care.
Mr. Spouse21, Gleason 9, presented symptomatically with blood in the urine then abnormal DRE, yet he was a low PSA, 3.38. Nothing about that PSA number would set off alarm bells.
My husband followed his private practice primary of 30 years to a franchise West Med, he never ran a PSA ever and my husband had blood in urine for a year with 3 different antibiotics prescribed. I sent him to urgent care, who recommended a urologist,
Finally after the fauxdemic, got into the urologist at West Med and the urologist was late for a meeting, did a digit test, Again no psa test and ran out the door saying call to make appointment.
I got him to NY Cancer Care of Excellence and the PSA 942.00
Metastatic Oligo Metastatic
Lytic 3 spots and multiple lymph nodes
Stage 4
Grade 5
Biospy
Gleason 8/9
Started Triplicate Therapy with Docetaxel
03/14/2023
Davinci Radical Prostatectomy with Limited Lymph Node Removal 8
PSA
<0.06
Last appointment
10/8/2023
0.09
Praying it’s just a bloop in rise and it’s lower again tomorrow at his Medical Oncologist appointment with labs and monthly @28 days Firmagon Injection
He takes Zytiga and Prednisone daily plus 500mg Metformin
My husband GP didn’t do PSA nor ever discussed it. From2012-18 it was discouraged by medical experts due to false positives but Drs were told to discuss options with patients. b. After stats showed an increase in younger 55-70 men with advanced PCA they reversed their recommendations. So he fell in the cracks.
My husband had 2 uncles with pca, had first psa check at 50, was high but didn't go back to doctor, when he was 52, psa up to 22. Same urologist who treated one uncle never thought to test him earlier. He had biopsy gleason 8 in all but one core! He blames himself however very clear he had pca probably since he was in mid 40's. He had in his 40's a procedure for stricture of urethra, the doctor at that time should have tested for psa especially due to family history but NO. I think anyone that has any family history or not should start testing in 40's. We have 2 nephews that we are telling test now. My husband now metastatic, on clinical trial, losing alot of weight. He has been fighting for 12 years, hoping for more time.
judym
What’s on the horizon for treating bone metastases?
Advanced Prostate Cancer Bone METASTASES 
One large \"zap\" for painful bone metastases is enough
Interesting that prostate cancer metastases to leg, foot, and ankle bones are rare.
How often are people here with bone metastases getting bone scans and/or CT scans?
