Uro visit post bone scan: Hello... - Advanced Prostate...

Advanced Prostate Cancer

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Uro visit post bone scan

Hotoneii profile image
44 Replies

Hello everyone, having one foot into the club, After PSA 46 and MRI showing contained growth but not 100% sure, today bone scan is confirmed as negative.Uro still suspects APC, whether contained or not, wants a biopsy on Monday 17th.

I started a strict vegan diet and extra gym days plus other diet interventions ( mushrooms, butyrate, sulphoraphane, relora, and yes fenben) and feel the symptoms getting less and less, only 1/ night or 0/night visits to bathroom, no urgency, etc, much better.

I get the feeling I am being rushed into a biopsy and given the symptoms getting better I think I will request a retest before the biopsy. Also previous test I had ejaculation less than 2 hours before, so that's out the window I guess but haven't told the uro.

Don't really want go poking the bear just yet. Any insights?

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Justfor_ profile image
Justfor_

If you can afford it, go for a PSMA PET/CT.

Hotoneii profile image
Hotoneii in reply to Justfor_

Thanks for the reply. Uro said that's after the biopsy, depending on Gleason/ grade. I've done 1 blood, 2 image tests plus dre and nothing is certain, I don't believe I should be rushing into biopsy yet giving the symptoms. I'm not saying I won't do it, just that I got the impression they are putting people through motions without listening and also the uro was in a rush to get me out of the office. I definitely want the PSA rechecked, he said ok but it won't make any difference, which is annoying. Someone in here posted something about getting well informed first and not giving up your power about making your own decissions and it all starts to make sense now.

Justfor_ profile image
Justfor_ in reply to Hotoneii

Urologists make their living out of biopsies. With today's non invasive imaging, i.e. mpMRI and PSMA Pet scan, biopsies have become just a relic of the past. The problem is that no urologist will treat any rebel that questions the utility of their professional discipline. Finally, their "lockout" will force you to surrender. Been there, did that.

NanoMRI profile image
NanoMRI in reply to Justfor_

Although we rebels often agree, I disagree with this characterization of urologists. Prostate cancer imaging is not (yet) as reliable as say liver cancer imaging.

Justfor_ profile image
Justfor_ in reply to NanoMRI

Ok, crisis-time upon our restricted rebels union (smiling face here). IMO, after a PIRADS 5 on top of a positive PSMA PET scan, a biopsy is worth the information bearing any car's licencing plate. Occasionally, will tell how old the car is, in EU whether it has passed technical inspection lately, identify the licencing authority, but most importantly allow it to circulate legaly around. No worthwhile technical value, bureaucracy at its finest.

NanoMRI profile image
NanoMRI in reply to Justfor_

Ok, smiling and laughing. I had two biopsies, for me like colonoscopies, and I do not fear them.

Also, biopsy provides for genomic testing - useful IMO.

I do not see in Hotoneii post or bio his PIRADS or that his MRI was multiparametric - I presume it was mpMRI. I agree if one has high PIRADS and a positive PSMA PET one could make a treatment decision without biopsy, but for me, I still want the biopsy for additional information (call me old school ;)

Hotoneii profile image
Hotoneii in reply to NanoMRI

Tbh I don't know what my PIRADS are neither, at each visit I'm being given vague one liners instead of a full report, as if they are trying to avoid my questions and quickly led into the next procedure. I get the impression the uro is rushing, sorry, I'm very clear headed and fear has nothing to do with it. Uro said PET comes after biopsy, sounds like the biopsy might deny the need for PET? Otherwise why not the other way around, be 99.9 sure and save one procedure? Is he implying that if Gleason is 3+3 there is no need for PET? He still won't know if it is contained for sure, it seems backwards to me.

Justfor_ profile image
Justfor_ in reply to Hotoneii

My daughter, living in London, can view the particulars and results of any NHS medical test she has been through, on some on line site. It is available there for her GP to see and decide on next steps. This doesn't apply in your case?

Hotoneii profile image
Hotoneii in reply to Justfor_

I do have the nhs app, but it does not update very quickly or not at all and the way the data is presented is like for 5 year olds, which I can understand why, but still

Retireddoc profile image
Retireddoc in reply to Hotoneii

I'm unaware of any competent physician that would order a PSMA PET prior to a prostate biopsy. The PET is determine if metastases are present which obviously impacts treatment planning. If you had a G6 (3+3) most Urologists would not order a PSMA PET because the chances of metastasis are very low. AS would likely be indicated.

NanoMRI profile image
NanoMRI in reply to Retireddoc

Retireddoc, I concur with your various comments, but do have this thought. Although PSMA PETs do 'miss' smaller mets (I have had three now), I would have liked to have had one along with my mpMRI before my first treatment decision, nine yeas ago. I say this because two years after my RP, one year after my salvage RT, at PSA 0.11, I had imaging, both Ga 68 and Ferrotran nanoparticle MRI (a trial in Netherlands). Five suspicious sites were identified by the nanoMRI whilst the Ga 68 was clear. My subsequent salvage ePLND confirmed six cancerous pelvic nodes. , including para-aortic. It does seem likely that my cancer had spread to lymph nodes, even para-aortic, before my RP.

I do get your thinking that 'today' no competent physician would order a PSMA PET prior to biopsy. But then, if we didn't think in terms of costs, and had the distaste for 'negative biopsies and imaging', multiple investigative methods provide further insights, regardless of findings.

For example, I now do annual blood biopsy testing, at my current PSA 0.03X; it could be said no competent physician would order this for me. However, I consider my medical team to be very competent, out ahead of common guidelines, and we find the results of "Not Detected" very informative.

Retireddoc profile image
Retireddoc in reply to NanoMRI

Hello, Nano. Please let me clarify. Many treating physicians are ordering the PSMA PET after biopsy but before RP or RT. I suppose that it could be ordered prior.

The field is changing so quickly that cutting edge physicians are treating differently than established SOC guidelines. I had RP in 2021 for a G8 with Imaging revealing no evidence of mets. Six months later I had rising PSA (.37) with PSMA PET showing T8 met treated with SBRT. Four months after treatment PSA 4.6. Another PSMA PET revealed a positive pelvic node. But likely additional micromets.

Chose Johns Hopkins to lead the charge going forward. Immediate triple therapy. The wrinkle is my very experienced MO and Director of Prostate cancer research at Hopkins elected only 4 cycles of Taxotere and 3 months of Darolutamide. PSA rapidly undetectable (continues to now but another PSA test next week) He took me off Lupron after a year.

His treatment regimen is not conventional or current SOC but I believe he is ahead of the curve in his treatment planning. He individualized his treatments.

It sounds like you got cutting edge treatment in the Netherlands and it is working for you. That's great! Good luck to you in your journey.

NanoMRI profile image
NanoMRI in reply to Retireddoc

A side note, proud to share my daughter is a JHU grad, dept honors in neuroscience. During my diagnosis and treatment selection phase I consulted with JHU, and was planning to have my RP there, but the big change in our healthcare system put them out of my newly forced upon me 'network'.

I see so many variables in perceived broad SOC guidelines - and even broader if one looks outside of the US. When I had my (first) Ga 68 PSMA PET in Netherlands, January 2018, it was in "trial" at two US universities; which I could not get into. I found it odd that that imaging was already in use in UK, Netherlands, Germany, Brazil, to name a few. The Ferrotran nanoMRI certainly seemed 'cutting edge', but I came to learn its origin was known as Combidex, back in 90's, in the US.

I did not view the salvage extended pelvic lymph node dissection surgery with frozen section pathology I had done in Belgium as cutting edge or outside of common guidelines. I view it as (unfortunately) rarely done here in US, with perhaps Mayo being only large clinic doing this procedure.

I was living in England at the time of diagnosis. A neighbor of mine was the late Dr John Wickham, recognized as a 'godfather' of robotic surgery. We had thorough discussions about all treatment options and the old practice of lymph node chasing. John recommend I look into all treatment options, but concurred with the recommendations from various ROs and focal therapy specialists, based on two mpMRI findings, that RP was my best option (poison) to remove tumor burden with minimal side effects.

I am grateful beyond words for my outcome to date but continue to keep a very close watch on this beast, having learned to not give it time and obscurity. All the best to all of us!

Justfor_ profile image
Justfor_ in reply to NanoMRI

Hi co-rebel NanoMRI,

I have another of my unorthodox parallels that most people here will condemn to their absolute highest level of nonsense, but I am sure you will like it. So, this post is addressed to you NanoMRI and solely to you.

After the end of WW1 under the terms of the 1919 Treaty of Versailles, Germany was only allowed a minimal navy of 15,000 personnel, six capital ships of no more than 10,000 tons, six cruisers, twelve destroyers, twelve torpedo boats, and no submarines or aircraft carriers. What did the Germans do to be able to build ships larger than before and at the same time stay within the Treaty? They moved from riveted steel construction to welded one. But the mechanical "oncologists" of the time wanted "tissue biopsies" to prove that a welded joint was as good as a riveted one that they had so far experience with. So, there was a whole certification industry set up where the welders had to give samples of their work that were assessed by measuring the tensile strength of the samples in a destructive "biopsy". Those that passed were allowed to weld, but within some months time they had to be re-evaluated. A sort of Active Surveillance scheme. Nowadays, a whole century later, the industry doesn't rely any more on "biopsies". In critical constructions, like oil rigs, refineries etc EVERY welding is tested and recorded. Not only once, during the construction phase, but also periodically to check for changes and any foul play of the past. A new discipline, that of non-destructive testing has substituted the post WW1 "biopsies". 100 years from now, we won't be living to have fun with reading about the importance of prostate biopsies, but we can extrapolate (the ones that can, that is) the past by acknowledging the passing of Lord Byron 200 years ago, when the docs sucked his blood out using leeches.

NanoMRI profile image
NanoMRI in reply to Justfor_

My reply to anyone else that might be interested, but not you Justfor ;)

I had a prostate biopsy at 47YO - 'benign' with explanations for why my (unreliable) PSA had suddenly jumped, resulting in an "unnecessary" biopsy.

Ten years later my first biopsy pathology opinion came in at 3+3. Two slightly different mpMRIs, one before biopsy and other after, suggested a more serious cancer. 2nd and 3rd pathology opinions 3+4. Final pathology after RP, 4+3.

Year later had salvage RT to bed, no imaging. Then a year later, with PSA rising to 0.11, the nanoMRI but not the Ga68, identified five suspicious pelvic nodes. Salvage ePLND confirmed cancer in six pelvic nodes including para-aortic.

Imaging - these are also subject to varying opinions and capabilities as well.

Today, I have blood sucked out of me by therapeutic phlebotomy to reduce ferritin because genetic testing reveals I have two genes identifying hemochromatosis. Odd thing is, MRI targeted to liver shows no damage, no build up of iron. Second radiology opinion concurs. What to do?

All the best to all of us fighting this beast!

Retireddoc profile image
Retireddoc in reply to NanoMRI

I don't know of any MO/RO that would treat based on diagnostic tests (MRI and PET) alone.

NanoMRI profile image
NanoMRI in reply to Retireddoc

As just a patient, seems to me we are not yet ready to rely on imaging over biopsy for prostate cancer.

jonathaninnm profile image
jonathaninnm in reply to Justfor_

Erm, NO, wrong! I have been at PSA 4.2 to 9.7 and back to 5.8 and 4.9 in the past 2 years. 2T MRI 2 yrs ago showed nothing. Urologist thankfully did biopsy based on PSA alone. It showed 10% cancer in one core out of 12, Gleason 3+4=7. HOWEVER, my subsequent PSMA Pet Scan showed NOTHING, nor did my 3T MRI. So...if I'd listened to the above advice I'd not have known that I have PC, or based a prognosis on the Pet scan or MRI I'd not have known I have PC.

maley2711 profile image
maley2711 in reply to jonathaninnm

Thank you...justfor is just , unfortunately, providing inaccurate info to those who are new to this PCa adventure.

Justfor_ profile image
Justfor_ in reply to jonathaninnm

Please read again and understand what I wrote. After a PIRADS of 5 and a positive PSMA scan PCa is confirmed and a biopsy is unessesary to re-confirm what is already known. You did NOT have either of the two, so, you are commenting on what you wildely imagined that I posted and not my actual post.

maley2711 profile image
maley2711 in reply to Justfor_

I'd like to see your proof that PSA is a relic? I totally dsagree!!!!!!!!!

You are overly optimistic on the value of the imaging.

Justfor_ profile image
Justfor_ in reply to maley2711

Malley, your blunder may be amusing, provided you are not on ADT and cognitive impairment hasn't settled in. In the latter case, it wouldn't be cricket from my part to respond, hence - in doubt- your post passes unnoticed.

maley2711 profile image
maley2711 in reply to Justfor_

what blunder ? Your MRI and PSMA PET scan results, which I did not know, certainly would make me very alert to a probable cancer, but I would never undergo serious possibly life-altering treatments based on those results and no biopsy!! MOst serious folks responding to you disagree with you, so feel free to denigrate all of them dude!! All you really did was come here to this forum to have others confirm what you already believed...when others disagree, you simply assert we are all wrong and rely of some crappy AI response..you worship almighty AI I guess.

Please show all of us conclusive studies that support your assertions!! I doubt you can, of course. Even from the developrs of the PSMA PET technology. MRI and PSMA PET do NOT establish the clinical significance of a local cancer..... a suspicion yes, but not definitive to differentiate between a 3+4 and a 4+5.

Down the road, we certainly all hope that all these tests in combo can be used to further individualize our treatment options....eg, one man's 4+5 is not necessarily another man's 4+5 !!

Look who's talking about cognitive impairment.....?????? My friends woud laugh!!!

Retireddoc profile image
Retireddoc in reply to Justfor_

You are incorrect. Only a biopsy of the prostate gland can detect definitive cancer and the subsequent Gleason grade. MRI (I have interpreted tens of thousands over the years) can give a suspicion for cancer but cannot exclude it and certainly cannot grade it.

PSMA PET scans are used to determine if metastatic disease is present and is not utilized prior to a prostate biopsy.

Sorry to put this so bluntly, but you are totally incorrect that a biopsy is a "relic of the past".

Justfor_ profile image
Justfor_ in reply to Retireddoc

I asked ChatGPT:

"What are the specificities of the following diagostic tests for prostate cancer of a man with PSA higher to 4 a) 12 or more core TRUS biopsy. b) 3 Tesla multiparametric MRI with a PIRADS 5 assesment. c) PSMA PET/CT positive tumor detection."

ChatGPT responded:

"The specificities of diagnostic tests for prostate cancer can vary based on numerous factors, including the population studied, the exact protocols used, and the criteria for positive results. However, I can provide general information based on typical findings in medical literature.

a) 12 or More Core TRUS Biopsy

Transrectal Ultrasound (TRUS) guided biopsy involves taking multiple samples (cores) from the prostate to be examined histologically for the presence of cancer cells.

Specificity: The specificity of a 12-core TRUS biopsy for detecting prostate cancer in men with a PSA > 4 ng/mL is generally high, often reported around 85-90%. This means that the biopsy correctly identifies a significant proportion of men without prostate cancer as negative. However, specificity can be influenced by sampling error, meaning cancer might be missed if not included in the sampled areas, leading to false negatives rather than false positives.

b) 3 Tesla Multiparametric MRI with a PIRADS 5 Assessment

Multiparametric MRI (mpMRI) uses multiple imaging sequences to evaluate prostate tissue. PIRADS (Prostate Imaging Reporting and Data System) is a scoring system that assesses the likelihood of clinically significant prostate cancer on MRI, with PIRADS 5 indicating a very high likelihood.

Specificity: For PIRADS 5 lesions, specificity can be quite high, typically around 85-95%. PIRADS 5 indicates a high suspicion of clinically significant prostate cancer, so a negative finding for significant cancer is less likely. However, false positives can occur due to conditions like prostatitis or benign prostatic hyperplasia (BPH).

c) PSMA PET/CT Positive Tumor Detection

Prostate-Specific Membrane Antigen (PSMA) PET/CT is a nuclear medicine scan that detects PSMA expression, which is typically higher in prostate cancer cells.

Specificity: PSMA PET/CT has very high specificity, often reported between 85-98% for detecting prostate cancer. The specificity is particularly high for detecting metastases and recurrent disease. However, false positives can occur due to uptake in non-malignant tissues or conditions such as benign prostate hyperplasia, inflammation, or other types of tumors that may express PSMA.

Summary

12 or More Core TRUS Biopsy: Specificity around 85-90%.

3 Tesla Multiparametric MRI (PIRADS 5): Specificity around 85-95%.

PSMA PET/CT: Specificity around 85-98%.

These tests are highly specific, particularly for higher-grade and clinically significant prostate cancers, but they are not infallible and can produce false positives under certain conditions."

Your conclusion:

Two positive diagnoses from two imaging studies, the specificity of either being higher then that of a biopsy, are less conclusive than the latter.

Is this doc's maths/stats, because I only speak engineer's maths/stats and being an old dog can't be taught new tricks.

Retireddoc profile image
Retireddoc in reply to Hotoneii

You can certainly get a repeat PSA but it unlikely to make a difference. If your rate of rise year over year(assuming a prior PSA) is 20% or more that is definitely concerning. Most prostate cancers don't have symptoms. Urinary frequency and such are do to prostate gland enlargement which is usually benign and precedes most cancers.

A biopsy is the only test that can definitely diagnosis prostate cancer. Occasionally it misses the cancer but it is the best test we have to make the diagnosis. Urologists get prostate MRIs prior to the biopsy to determine if there are any particularly suspicious areas to concentrate on during the biopsy. A negative MRI, PSMA PET, bone scan etc etc does not exclude prostate cancer. I interpreted those studies for oner 40 years.

Personally, I had a PSA of 5.6 that went up to 7.5 a year later. I had a "negative " MRI on a new state of the art 3T MRI with contrast and 2 years later I had a 1 cm enhancing nodule (when PSA went to 7.5) and my biopsy revealed Gleason 8. Subsequent mets a year later. Don't try to delude yourself or listen to individuals on here that are laypeople and don't understand the process.

Wish you well.

Justfor_ profile image
Justfor_ in reply to Retireddoc

While you "understand" the difference between sensitivity and specificity!

"In medicine and statistics, sensitivity and specificity mathematically describe the accuracy of a test that reports the presence or absence of a medical condition. If individuals who have the condition are considered "positive" and those who do not are considered "negative", then sensitivity is a measure of how well a test can identify true positives and specificity is a measure of how well a test can identify true negatives:"

en.wikipedia.org/wiki/Sensi...

And if you would like to send the ball to the sensitivity field, there is where you will lose BIG:

"What are the sensitivities of the following diagnostic test re prostate cancer for a man having a PSA of 4. a) 12 or more core TRUS biopsy, b) 3 tesla multiparametric MRI PIRADS 5 assesment c) PSMA PET/CT positive tumor detection."

ChatGPT

"The sensitivities of different diagnostic tests for prostate cancer vary based on the type of test and the specific criteria used. Here are the typical sensitivities for the tests mentioned when a man has a PSA level of 4 ng/mL:

a) 12 or more core TRUS biopsy

A 12-core transrectal ultrasound-guided (TRUS) biopsy is a standard procedure for diagnosing prostate cancer. The sensitivity of a TRUS biopsy can vary, but it generally ranges from:

70% to 85%

This sensitivity can be influenced by various factors such as the skill of the operator, the exact number of cores taken, and the extent of the cancer.

b) 3 Tesla Multiparametric MRI (mpMRI) PIRADS 5 Assessment

A 3 Tesla multiparametric MRI (mpMRI) with a PIRADS 5 assessment indicates a high likelihood of clinically significant prostate cancer. The sensitivity of mpMRI for detecting clinically significant prostate cancer (PIRADS 4 or 5) is typically:

85% to 95%

A PIRADS 5 lesion specifically suggests a very high probability of clinically significant cancer, with sensitivity near the upper end of this range.

c) PSMA PET/CT Positive Tumor Detection

Prostate-specific membrane antigen (PSMA) PET/CT is a highly sensitive imaging modality for detecting prostate cancer. The sensitivity of PSMA PET/CT for detecting prostate cancer can be quite high, especially in the context of high PSA levels or recurrent disease:

85% to 97%

PSMA PET/CT is particularly useful in detecting metastatic or recurrent prostate cancer, but it is increasingly used for primary staging as well due to its high sensitivity.

Summary

12 or more core TRUS biopsy: 70% to 85%

3 Tesla Multiparametric MRI (PIRADS 5): 85% to 95%

PSMA PET/CT: 85% to 97%

These sensitivities are general estimates and can vary based on specific study conditions, patient populations, and technological advancements."

(layperson's emphasis added)

Retireddoc profile image
Retireddoc in reply to Justfor_

The only test that can make a definite diagnosis of prostate cancer is a biopsy. You cannot grade a potential cancer form an Imaging test. There may be a high suspicion of cancer from an MRI PIRADS 5, but until there is tissue confirmation you cannot make the diagnosis. Once a diagnosis has been confirmed with biopsy, subsequent positive PSMA PET exams are presumed to represent metastasis and additional biopsy is not needed.

I practiced predominantly Interventional Radiology (with additional Diagnostic Radiology duties) for 40 years. I have done thousands of biopsies from virtually every organ on the body (heart, brain, eyeball/globe excluded) and I can tell you from real practical experience that Oncologists are extremely reluctant to treat a patient without tissue diagnosis, no matter the Imaging findings.

There are numerous times in my career that I was virtually certain a certain lesion in the lung, liver, lymph node etc was a tumor/cancer, only to find on biopsy that it was one of a myriad of benign conditions.

Undoubtedly, there are some very intelligent people on this site who have done extensive reading and "research" regarding prostate cancer, its diagnosis and treatment. They can quote studies they have read and talk about 3T magnets and the like. No issue with people giving their opinion. But when they try to sound authoritative and offer medical advice to others, in my opinion, they have crossed the line. I would never do that on a forum. I am not the patient's treating physician, I don't know their history and am not privy to all of the details of their care. Additionally, I am not qualified to offer advice in what is a very complex and rapidly changing field of prostate cancer and its treatment.

My daughter is an Infectious Disease Professor at a COE. A colleague gave her a coffee cup that reads " Don't confuse your Google search with my Medical Degree". Another old saw worth remembering is " A physician who treats himself has a fool for a patient". That applies to the layman as well.

Peace and good luck in your journey.

Retireddoc profile image
Retireddoc in reply to Retireddoc

Just to add a clarification , many (most?) urologists at COE will obtain an MRI prior to biopsy. It isn't to help them make the decision to perform the biopsy or not, that decision has already been make from other data such as PSA, absolute number and rate of rise year over year, DRE etc. But the MRI may reveal an areas of concern for which the urologist can particularly target.

Random prostate biopsies can, of course, miss small cancers but it is the only way to see the tissue pathology.

As PSMA PET is becoming more prevalent, I believe that more urologists will order it pre op. If a patient has unexpected widespread metastatic, they are generally consider a better candidate for RT than a RP (although there is some discussion that removing the primary tumor may give a more beneficial response to treatment in some cases-I am not really educated on this.

Justfor_ profile image
Justfor_ in reply to Retireddoc

The problem with you is that you don't read what the "layperson" wrote. I paralleled biopsies with the licencing plates of cars They offer nothing to the functioning of the vehicle, but they are required by the authorities. And you argue that oncologists are reluctant to treat without tissue diagnosis. Thank you very much for the valuable lecture, yet, I am terrible with cliches. My high T keeps my grey cells spinning and the centrifugal forces drug them outside the established "boxes".

Retireddoc profile image
Retireddoc in reply to Justfor_

I am sorry that I misinterpreted your post. I was replying to the ChatGPT post that seemed (to me ) to indicate that the sensitivity of Imaging tests was superior to actual biopsy. I was trying to say how it actually worked in medical practice.

Sorry that you took offense. It wasn't meant to be a lecture. Maybe my Lupron and "low" T is interfering with my judgement.

NanoMRI profile image
NanoMRI

How many of the men in this forum facing advanced prostate cancer would like a do-over? I certainly would.

Nearly ten years ago a urologist at New Victoria Hospital London introduced me to multiparametric MRI. For several years prior to that my long established US urologist and I ignored my fluctuating PSA, and relying on clear DREs, brushed off (denied) the warning signs and kept putting off a biopsy. My US urologist never mentioned MRI to me.

Although it seems unlikely a few weeks or months to formal diagnosis will matter, IMO your urologist is looking out for your interest, not pushing you. IMO exercise and diet will not defeat the beast that may well be lurking.

Today I view all the critical talk regarding screening and the claims of unnecessary prostate biopsies as systemic misinformation. Looking back, I now wonder when my cancer had started to develop - how many years did I give it to grow and advance?

9020B profile image
9020B

Healthy diet and exercise are good for everyone. Keep it up.Don't let easing of night time symptoms distract you. This has little to do with wether you have pca.

Ejaculation before PSA test can raise the number a little but don't lay your hopes on it making any real difference.

Your PSA, scan, DRE and doctors are telling you to to get a biopsy. Don't talk yourself out of it too long.

Hotoneii profile image
Hotoneii in reply to 9020B

Thank you for all the sensible replies.As I mentioned on my post, of course I will do the biopsy, but I will not be rushed into it. The PSA retest will come first.

Probably will pay for a full hormonal/etc. panel myself.

Also, when I requested the free % figure of the PSA test, I was told that's irrelevant. So I might just have to go to another urologist who doesn't make me feel I'm being ushered out of the office. I know, this is the NHS, not a complaint, but oh boy!

maley2711 profile image
maley2711 in reply to Hotoneii

He is telling you the truth, but you don't like what the truth is telling you. What do you hope to gain from a "hormonal panel' ????? Have a transperineal biopsy, and move on with your life!!! You are making this a bigger deal than it is...been there, done that, unfortunately!!!!

Tall_Allen profile image
Tall_Allen

It is unlikely that PSA that high is solely due to benign causes (sex might increase it only a couple of points). With suspicion on MRI too, you need a biopsy.

London441 profile image
London441

Congratulations on your good habits. They will be a great help no matter what path you choose.

Your PSA is 46. You need a biopsy.

Sailing-Todd profile image
Sailing-Todd

This is the latest flowchart for prostate cancer diagnosis from a specialist charity.

Flowchart of prostate cancer diagnosis pathway.
maley2711 profile image
maley2711

Re you MRI, what was the result.....a PIRADS 2,3,4, or 5???? If 3 or above, biopsy indicated!!!!!! No reason not to do a retest of your PSA. but will probably still be high. If you have Pirads 3 or higher, PSA number much less important. Most men have zer problem with the biopsy.....transperineal biopsy basically zero infection risk, but your uro may not do these....find someone who does?m The right uro will also administer Propofol sedative...if you request . Biopsy itself is 10-15 minutes usually.

How you feel re general health and physical fitnes has little to do with probability you have "significant PCa" ......cancer doesn't care!!!

Pjford profile image
Pjford

my bone scan didn’t show that I had cancer in pelvic area , but the Pet scan did . I had a 31 PSA

CancerConcierge profile image
CancerConcierge

My husband had a PSA of 46.6 a week before his last biopsy in August 3023.

His providers , at MD Anderson and Mayo had attributed his high PSAs to chronic bacterial infection and inflammation and just recommended SOC annual MRIs and biopsy.

But even after months on antibiotics, his PSA kept rising, 2023 MRI showed growing PIRAD 5 lesions. PSMA / PET scan showed growing lesions but still prostate contained.

The August 2023 biopsy came back with 8 out of 20 cores positive for cancer, and one core a Gleason 9.

He started treatment after biopsy. His PSA and Gleason 9, put him in a very high risk category.

In 2022, a 22 core biopsy came back with all cores benign.

I don’t believe a PSA of 46 can be attributed to recent sexual activity. I assume you were checked to see if you had any UTIs.

My husband had chronic urinary tract symptoms, and Prostatitis, but not “cancer “ symptoms per se… so an absence of symptoms may not be an indication that you don’t have cancer.

Based strictly on my husband’s experience, I would recommend:

-Insist on a MRI guided Trans perineal biopsy.

-If you have the ability, order your own PSA labs in between appointments.

-“Shake the Tree”…we wish they had restaged him at least 6 months before they did … due to rapidly increasing PSA, even with antibiotics… we should have insisted… the doctor who did his biopsy in 2022, even suggested that he stop having MRIs.

-a PSA of 46 deserves your urgent attention

Wishing you the best as you make your decisions… stressful for sure…

Cooolone profile image
Cooolone

Feel you're being rushed into a biopsy but have jumped in the pool with supplements and diet, etc.?

An accurate diagnosis requires a series of different tests, blood, imaging, tissue sample, super sensitive PET scan to eliminate possible distant mets. All together give the best picture available as to being able to properly assess risk. Why would you worry about any part of diagnosis as it is imperative to making the correct decision in regard to possible treatment.

Get to a Major Cancer Center if you're not there already, go as your 2nd opinion if not. It is there you'll get the very best in diagnosis and possible treatment, access to the latest and greatest too, studies as well. Don't skimp, travel if you must. PSA <40 is no to mess with... Isn't Intermediate disease.

Good Luck

Maxone73 profile image
Maxone73

sex, stimulation (in case of hemorrhoids for example with a cannula), acute prostatitis…many causes for a high PSA but apart from a very acute prostatitis that would anyway give you very peculiar symptoms (I have a friend that got PSA > 100 because of that) , the other stimuli are very unlikely to drive your PSA up that much. When I first talked to a urologist she told me “ok if your PSA is normally 3 and you had a wild night of sex and physical activity I might find it at 10 or less, not at 70”. That’s why they are rushing you. Don’t wait to repeat the PSA, even one week can make a difference in your future treatment.

Hotoneii profile image
Hotoneii

Well thanks again everyone for the sensible replies and informative discussions.

In view of all the information posted, it is clear that:

1. A PSA of 46 is something that requires urgent attention/investigation

2. MRI and bone scans can be useful tools for doctors to widen suspicion/spread of disease, but not necessarily for a reliable diagnosis. Any MO/MR will not treat anyone without first assessing the biopsy results ( at least in the UK)

3. The biopsy will likely confirm how advanced the cancer is at the site and therefore whether further more accurate imaging is required to confirm soft tissue spread

4. Factors that might have raised the PSA artificially are irrelevant in view of the 2 DRE and PSA itself being high, and the MRI weak indication, even if blurred

5. Diet and exercise are generally good but do not influence outcomes, at least in the very short term

So I went to do the trans perineal biopsy on Monday morning 17th June, as scheduled. A new DRE confirmed there is a palpable lump to the right lobe, but it seems to be confined ( which I know cannot be confirmed from a DRE) but anyway, and also repeated confirmation that the bone scan was clean.

The next visit is on July 3rd, in which they will advise whether a PET scan is required ( I think it will be), or what treatment options are available, if the grade is low, which at this point in view of all the information digested, is highly unlikely, but fingers crossed.

In the meantime, regardless of diagnosis, stage or whatever, I will:

1. Increase my gym visits to 3 a week, mostly resistance training which is what I'm good at, (and some aerobics), as this makes me feel good and (mostly) free of symptoms for now

2. Continue a mostly vegan diet, low in methionine but not deficient, just enough to feed muscle, I'm aware that PC has affinity for methionine besides glucose, glycine and glutamine, and also some fatty acids

3. Commission independent blood tests, ( as per Cancer Concierge advice) including free PSA and sex hormones. I'm interested in how parameters of the disease influence some test results as it progresses. This is specially important when treatment starts, as I'm dreading ADT; I know it can have devastating effects on other organs which at the moment seem to be working as they should ( according to blood tests) Besides, my engineering brain likes to tweak things up

Thanks again

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