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Pi-Rad 5, PSA 8.4, (last year, 5.3)

User
Posted 20 Dec 2023 at 20:51

I just got my result from my pi rad today and the result was Pi rad 5 in addition to my PSA which is 8.4 I feel absolutely fine and I'm training as I normally do doing 1500 meters in the pool every day and walking for one hour and I used to be a county level athlete and also went to America on an athletic scholarship many years ago. 67 years old. 187cm, 75kg (racing weight was 65-68kg, 40 years ago). No meds. Waiting inguinal hernia operation. 

 

The question I have is is it possible to have a pi rad 5 and still have the problem contained within the capsule and not outside the capsule as I'm not able to get the answers on that neither from the secretary at the hospital or anybody else. I'm due to get a biopsy on December 27 2023. Pi Rad 5 sounds really scary and my main scare is if it's outside the capsule but I feel absolutely fine but that's often the case I believe. 

If it's within the capsule I plan for prostatectomy. 

Sorry for any typos. Stressful times. 

User
Posted 22 Dec 2023 at 09:21
These kind of stories do the rounds regularly - miracle cures etc.

They simply don't happen in real life and they raise false hope.

A good friend of mine lives in the US and is all about drinking green stuff to cure probably every ailment under the sun - she makes lots of money, makes claims from so-called success stories and tried to convince me that it will cure my prostate cancer. When I questioned her on if it was a cure why was every consultant and hospital not using she, she reverted to the usual claptrap about they were all in bed with the drug companies.

Sorry but 99.99% is complete BS.

User
Posted 21 Dec 2023 at 16:12

Thank you Sir. My main concerns are strong reservations about ADT and the side effects, weight gain, possible diabetes, changing physiology, etc with ADT. 

I'm debating whether to actually "accept" treatments, if I reach that stage, or simply let the disease run its course. Pain killers, etc, morphine....

I'm 67 - maybe I should reflect that's already a high age in many parts of the world. 

I won't lie - stress is felt nevertheless.

Biopsy scheduled 27/12/2023. I assume it will mostly confirm the PI-RAD'S score of 5. Unless I'm missing something. 

Perhaps my negative pessimism is not productive. Sorry. 

Thank you. 

Edited by member 21 Dec 2023 at 16:13  | Reason: Not specified

User
Posted 22 Dec 2023 at 09:45

Well I certainly wont be relying on drinking green tea and avoiding steak to cure me! 😁

Edited by member 22 Dec 2023 at 09:50  | Reason: Not specified

User
Posted 24 Dec 2023 at 22:43

I watch quite a lot of videos by an American doctor by the name of Mark Scholz  MD on YouTube and I like his balanced views with regard to prostate cancer and for example his advice and reluctance to treat patients of a certain age aggressively for prostate cancer.

For example, tonight I was watching a video with the title "prostate cancer diagnosis over 80"  in which Dr Scholz was commenting that giving aggressive treatment to someone in that age group might be counter-productive because at that stage in life the cancer is usually so slow progressing that it might be of little or no benefit to treating the cancer aggressively. 

Does anyone else reading this have any other favorite "gurus," for want of a better words, spreading the word about different treatments for prostate cancer on YouTube? Thank you.

The basic message I get from this doctor is that prostate cancer is very age dependent and there is not just one size fits all and that one should look at a lot of options including active surveillance or words to that effect. 

 

I like the fact that he's very frank about the side effects of different options in treatments of prostate cancer. One should look at the situation in a global way. Dr Scholz advocates second and third opinions before opting for potentially dramatic life-changing treatments like hormone therapy.

Edited by member 24 Dec 2023 at 22:48  | Reason: Not specified

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User
Posted 20 Dec 2023 at 22:20

The PIRADS score tells you nothing about how aggressive the cancer is. It just means they looked at the MRI image(s) and spotted something which has a high probability of being cancer. 

Until they do the biopsy they won't know if it is cancer and if so what Gleason grade it is. The image probably does show them whether it is contained in the prostate. After my MRI and before the biopsy the nurse said, "if it is cancer, it has spread beyond the prostate" (extra prostatic extension).

I suspect that they aren't telling you much, because until the biopsy there is not much they can tell you, and it isn't good to give you half the story.

I think you need to know all the details before you start thinking about treatment choices. If it turns out you can be cured with 5 doses of radiotherapy and no HT (appropriate for some cases), having a major operation sounds like overkill.

Dave

User
Posted 20 Dec 2023 at 22:32

I appreciate your input. 

Looking on the net PI RAD 5 appears to have a rather grim prognosis, but maybe I'm not looking at all the variables. 

I read somewhere that with PI RAD 5, even after prostatectomy, re occurence is highly likely. Can you comment on that?

 

Thank you Sir. 

User
Posted 21 Dec 2023 at 01:24

If you have lesion identified as PIRADS 4 it has a 50% chance of being clinically significant cancer if it is PIRADS 5 it has a 90% chance of being clinically significant cancer. So this might lead to a grim diagnosis, i.e cancer, but it is too early to talk about a grim prognosis.

You and the medics need all the test results, and it needs to be discussed by the MDT before a firm diagnosis exists. Then you can think about your prognosis. If you have metastatic cancer (which you have no evidence of until you have a bone scan) then the prognosis is grim (five to ten years in most cases). If you have extra prostatic extension, which is more likely with a large tumour, and a pirads 5 lesion is usually large so if it is tumour it is a large tumour, then you have a higher risk that some cancer cells have migrated. I would not say that was a grim prognosis because radiotherapy to the pelvis has a high chance of killing all the cancer.

If you have cancer with extra prostatic extension identified at diagnosis, most surgeons would not want to treat you, recurrence is quite likely in that case. If it is identified during surgery they will do their best to remove it and you may get lucky.

 

Dave

User
Posted 21 Dec 2023 at 14:54
I know it's a tough position to be in and you want answers now - but unfortunately there is a pathway that has to be followed to get to the complete diagnosis and treatment. Anything else at this point is just guesswork.

It's like driving your car and it starts making a weird noise. We can have a good guess whether it is engine, gearbox or suspension from the way it sounds but further diagnosis needs a visit to the mechanic, further examination and tests and maybe a strip down of the offending part.

Good luck and try not to worry - it is what it is, it's not going to change over the next day/week/month and the treatments are well proven and highly successful in the vast majority of cases.

User
Posted 21 Dec 2023 at 16:12

Thank you Sir. My main concerns are strong reservations about ADT and the side effects, weight gain, possible diabetes, changing physiology, etc with ADT. 

I'm debating whether to actually "accept" treatments, if I reach that stage, or simply let the disease run its course. Pain killers, etc, morphine....

I'm 67 - maybe I should reflect that's already a high age in many parts of the world. 

I won't lie - stress is felt nevertheless.

Biopsy scheduled 27/12/2023. I assume it will mostly confirm the PI-RAD'S score of 5. Unless I'm missing something. 

Perhaps my negative pessimism is not productive. Sorry. 

Thank you. 

Edited by member 21 Dec 2023 at 16:13  | Reason: Not specified

User
Posted 21 Dec 2023 at 21:38

Originally Posted by: Online Community Member

Thank you Sir. My main concerns are strong reservations about ADT and the side effects, weight gain, possible diabetes, changing physiology, etc with ADT. 

I'm debating whether to actually "accept" treatments, if I reach that stage, or simply let the disease run its course. Pain killers, etc, morphine....

I'm 67 - maybe I should reflect that's already a high age in many parts of the world. 

I won't lie - stress is felt nevertheless.

Biopsy scheduled 27/12/2023. I assume it will mostly confirm the PI-RAD'S score of 5. Unless I'm missing something. 

Perhaps my negative pessimism is not productive. Sorry. 

Thank you. 

 

my husband had pirads 5 on MRI but Gleason 6 after biopsy, apparently he had asymptomatic infection that can look bad on MRI. Maybe prepare for the worst and hope for the best.

good luck 

User
Posted 21 Dec 2023 at 21:54

Thank you Madam. That would be a significant relief to score a Gleason 6, allowing active surveillance, presumably, at least for a while. 

When I first found out about the PI-RAD'S 5, I expected the worst scenario, including spread outside the capsule. The way pirads5 is presented - it looks very grim. 

Thank you. Crossing my fingers for a biopsy that will yield a finding that the cancer has been contained within the capsule. In that case, I think more options might be available depending on the Gleason score and other factors. 

User
Posted 22 Dec 2023 at 08:27

Quote from a post on quora which I read today.

(start quote): "I'm not a surgeon, but heard this story from a family friend who used to work at the NIH with a highly successful and recognized surgical oncologist (I'll call him Dr. S) who told this story.

I heard it secondhand, so don't have all the details, but think it's a pretty amazing story regardless (apologize in advance for my clear lack of medical terminology).

Anyway, Dr. S gets a patient with late stage cancer, who had a good sized tumor somewhere in his midsection. It's believed to potentially be operable on, so the man is prepped for surgery and Dr. S begins by opening up the patient's abdomen.

To go off on a quick tangent, do you know why cancer is called cancer? It's no coincidence it has the same name as the crab in the zodiac. Tumors are rarely one self contained sphere — they have "legs" that branch out in all different directions, and kinda sorta resemble a crab. I encourage you to look it up, and it's one of the reasons it's so much easier to treat cancer when you catch it early…usually the small "lump" is only the visible portion of the tumor"

Back to the story, as Dr. S described it, it was one of the worst tumors he had ever seen, and the cancer was so developed that surgery was going to be impossible. So, the good surgeon had no other choice but to sew the patient back up and give him the prognosis. There was no further treatment that could be done.

About two or three years go by, and Dr. S sees a patient's file with a familiar name come across his desk. Dr. S recognized it as the man he operated on a few years prior, but no way it could be the same guy, right?

The man had come back in for something unrelated to his cancer (though I think something that involved a CT scan). When Dr. S went to see him, he saw none other than the patient he sewed up two years prior, standing there in good health. Despite having had treated thousands of patients, Dr. S was in shock. They talked for a few minutes, and I wanna say Dr. S got permission to look at the man's most recent scans, and there was no sign of the cancer. Zero. It was completely gone.

No, the guy hadn't found another surgeon nor underwent chemo, in fact, Dr. S was the last person to have even operated on him. The only explanation was that the immune system had recognized the tumor as a foreign body / threat and destroyed it.

____

With parents in the medical field, I have heard several other similar-ish stories, but this one by far is the most amazing one I've heard.

As a disclaimer, this is very much a true story (though I don't remember the type of cancer or the name of the doctor). Although what happened is extremely rare, it's not impossible — the human body and immune system are capable of extraordinary things. It's no surprise there are several cancer treatments that focus on simply getting the immune system to recognize and fight the cancer." (end quote)

User
Posted 22 Dec 2023 at 08:47

Nah, it's like one of them murder mysteries where it turns out he's got a twin brother. 😉

Indeed the human body is a wonderful thing to behold. (Which used to be one of my chat up lines)

Joking apart I suppose it's the ultimate cure to train the body to self heal.

I also often wonder whether our particular disease has inflicted men throughout history. Whether cavemen suffered from it. Perhaps I've got too much time on my hands.

 

 

 

Edited by member 22 Dec 2023 at 12:50  | Reason: Not specified

User
Posted 22 Dec 2023 at 09:18

I'm realising that the typical western diet with a surplus of dairy probably strongly correlates with prostate Cancer. Countries with low dairy intake have very low incidence of prostate Cancer. Had I twigged this years ago I would have seriously curbed or ditched dairy from my diet. We don't need it. 

Edited by member 22 Dec 2023 at 09:29  | Reason: Not specified

User
Posted 22 Dec 2023 at 09:21
These kind of stories do the rounds regularly - miracle cures etc.

They simply don't happen in real life and they raise false hope.

A good friend of mine lives in the US and is all about drinking green stuff to cure probably every ailment under the sun - she makes lots of money, makes claims from so-called success stories and tried to convince me that it will cure my prostate cancer. When I questioned her on if it was a cure why was every consultant and hospital not using she, she reverted to the usual claptrap about they were all in bed with the drug companies.

Sorry but 99.99% is complete BS.

User
Posted 22 Dec 2023 at 09:45

Well I certainly wont be relying on drinking green tea and avoiding steak to cure me! 😁

Edited by member 22 Dec 2023 at 09:50  | Reason: Not specified

User
Posted 22 Dec 2023 at 09:50

I think there's some truth on both sides because there is some evidence that drinking green tea, for example, is somewhat protective for ailments like prostate cancer going by multi generational studies with populations who drink a lot of green tea such as in Japan, and at the same time it is true and undeniable that the allure of money from pharmaceutical companies may diminish the ethics of many medical doctors but we have to look at the whole issue from a global perspective and try to work out what is best.

What is regrettable, once you have been diagnosed with prostate cancer, especially if it spreads beyond the capsule,  is that only palliative care can be given and there are no proven cures.

A friend of mine, in his 60s, was recently operated on for prostate cancer (Gleason 4+5, PSA 18), and had his prostate removed but after removal the surgeons told him that they found some cancerous cell evidence had gone beyond the prostate and that there was a 30% chance that the cancer would return. This was after having this prostate removed. He's philosophical about this. 

The good news, if you can call it that, is that the older you get the slower prostate cancer progresses. 

User
Posted 22 Dec 2023 at 09:55

I know. I was only being light hearted. I'm on AS and currently waiting for my PSA test results from Monday, so trying to lift my mood a bit. I think people should approach this disease with any and every trick in the book that works for them.

I'm still in my 50s (just) so a bit apprehensive about progression...

Hope all goes well for you.

 

Ian.

User
Posted 22 Dec 2023 at 09:59

Thank you, Sir, good luck. 

User
Posted 22 Dec 2023 at 12:30

Originally Posted by: Online Community Member

I appreciate your input. 

Looking on the net PI RAD 5 appears to have a rather grim prognosis, but maybe I'm not looking at all the variables. 

I read somewhere that with PI RAD 5, even after prostatectomy, re occurence is highly likely. Can you comment on that?

 

Thank you Sir. 

you have misunderstood what you have read online. I think you are confusing PI-RADS 5 with G(5+5) or with pattern 5 distortion. 

PI-RADS 5 tells you nothing about prognosis, recurrence, etc. As another member has already posted, Pi-RADS 5 just indicates that, based on the MRI images, there is a very strong likelihood that there are cancerous cells. 

What you have been reading about recurrence, prognosis, etc., relates to biopsy samples that have clinically significant Gleason patterns of 5  

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Dec 2023 at 12:33

Originally Posted by: Online Community Member
What is regrettable, once you have been diagnosed with prostate cancer, especially if it spreads beyond the capsule, is that only palliative care can be given and there are no proven cures.

 

That's not true - I think you have confused 'spread beyond the capsule' with 'metastatic spread'

Palliative care is what is given at the end stages of life - usually considered to be the last 3-6 months when all active treatment has been stopped and only treatments to keep the person comfortable / mobile are being given

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Dec 2023 at 14:28

Thank you for the clarification and apologies for jumping the gun, as it were. Your points have been noted. 

The way the scale of PI-Rads are presented online, make it look very serious to a neophyte in this game. Hence my error in judgement, possibly premature. 

 

Thank you, Sir. 

User
Posted 22 Dec 2023 at 14:29

Noted with thanks, Madam, and apologies for jumping the gun on this one as well. 

User
Posted 24 Dec 2023 at 22:43

I watch quite a lot of videos by an American doctor by the name of Mark Scholz  MD on YouTube and I like his balanced views with regard to prostate cancer and for example his advice and reluctance to treat patients of a certain age aggressively for prostate cancer.

For example, tonight I was watching a video with the title "prostate cancer diagnosis over 80"  in which Dr Scholz was commenting that giving aggressive treatment to someone in that age group might be counter-productive because at that stage in life the cancer is usually so slow progressing that it might be of little or no benefit to treating the cancer aggressively. 

Does anyone else reading this have any other favorite "gurus," for want of a better words, spreading the word about different treatments for prostate cancer on YouTube? Thank you.

The basic message I get from this doctor is that prostate cancer is very age dependent and there is not just one size fits all and that one should look at a lot of options including active surveillance or words to that effect. 

 

I like the fact that he's very frank about the side effects of different options in treatments of prostate cancer. One should look at the situation in a global way. Dr Scholz advocates second and third opinions before opting for potentially dramatic life-changing treatments like hormone therapy.

Edited by member 24 Dec 2023 at 22:48  | Reason: Not specified

User
Posted 25 Dec 2023 at 09:05
Firstly I have to say that I avoid Youtube for pretty much anything except entertainment as it is a free for all and completely unregulated. It's also a money making enterprise that encourages outrageous claims, comments and activities designed to create more views and thus money for the creator.

Having said that, the idea that only performing the minimum amount of treatment based on age, quality of life and life expectancy is nothing new and has been around since the dawn of modern medicine. Someone in their 80's is far more likely to be offered palliative care than a radical medical procedure.

Given that PCa is a slow growing cancer, and that it is generally accepted that most men will die WITH PCa and not because of it - non-treatment is definitely an option in the older generation in order to maintain QUALITY of life in their final few years.

Now, you mentioned that this doctor was American and that adds another slant to it. Having lived in the US for 14 years, you develop an understanding of how the American health system works and the huge power, both financially and politically of the drug and medical care companies. The system works of action and procedures - not on let's wait and see. You are much more likely, regardless of age etc, to be offered a full set of procedures aimed at cure in the US than probably anywhere else simply because, for those that can pay and/or have the insurance, the medical resources are virtually unlimited.

The idea of getting a second and third opinion is also a stateside process - you might manage it under the NHS but you will probably be waiting a very long time.

You don't mention your age and where you live - both will influence what treatments are offered.

User
Posted 25 Dec 2023 at 09:44

Thank you, Doctor.

Age 67, North of England, near Leeds. 

I'll keep those things in mind. 

User
Posted 26 Dec 2023 at 21:19

I'm having a biopsy tomorrow and if the result indicates that cancer has spread outside the capsule and potentially later becomes metastatic (almost a certainty ) making surgical procedure such as prostatectomy impossible or ill advised I'm wondering if anyone has ever considered to opt not to be treated with hormone therapy and radiation in the following months and years because especially with hormone therapy it does not appeal to me at all with the side effects and everything else. 

The side effects of hormone therapy including diabetes, impotence and other things are of great concern I feel but it seems many people or most prostate cancer patients accept the hormone therapy and chemical therapy if their Gleason score is in that number range (9/10) where surgery is not advised or possible. It is stressful just to think about all of this.

Thank you. 

User
Posted 26 Dec 2023 at 21:52

Originally Posted by: Online Community Member

I'm having a biopsy tomorrow and if the result indicates that cancer has spread outside the capsule and potentially later becomes metastatic (almost a certainty ) making surgical procedure such as prostatectomy impossible or ill advised I'm wondering if anyone has ever considered to opt not to be treated with hormone therapy and radiation in the following months and years because especially with hormone therapy it does not appeal to me at all with the side effects and everything else. 

The side effects of hormone therapy including diabetes, impotence and other things are of great concern I feel but it seems many people or most prostate cancer patients accept the hormone therapy and chemical therapy if their Gleason score is in that number range (9/10) where surgery is not advised or possible. It is stressful just to think about all of this.

Thank you. 

 

maybe try not to over think, and wait until you know for certain. Then listen to your doctors advice, have a list of questions. Then decide.

 

User
Posted 26 Dec 2023 at 22:15

Thank you, Sir. I'll keep that in mind. 

User
Posted 27 Dec 2023 at 00:07

Originally Posted by: Online Community Member

I'm wondering if anyone has ever considered to opt not to be treated with hormone therapy and radiation in the following months and years because especially with hormone therapy it does not appeal to me at all with the side effects and everything else. 

I considered doing nothing when first diagnosed but had a prostatectomy. I'll probably consider doing nothing if I get a recurrence, but I bet I do, because considering the consequences if I don't, will make me see sense.

 

User
Posted 27 Dec 2023 at 00:22
My father-in-law was diagnosed at age 79 with a fully contained T2 Gleason 7 (3+4) adenocarcinoma. He refused RT / HT because he was worried about the impact on his sex life - his wife was 18 years younger than him. He died within 4 years as a result of metastatic spread to the liver & kidneys leading to sudden onset oedema which stopped his heart 24 hours after the mets were identified.

Just for the purpose of clarity, HT does not cause impotence - it causes a loss of libido. In other words, many men can still get an erection but have no desire to use it. The impotence is caused either by radiation damage to the nerve bundles (often 5 - 10 years after the RT was actually delivered) or by penile atrophy, which is irreversible.

Also, prostate cancer can be fully contained within the gland but still be metastatic.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Dec 2023 at 00:31

I think Turkeys advice is best. I can't see any point in trying to resolve this moral and philosophical problem until it becomes a practical one, which it will be when you get the biopsy results. Then you will have a diagnosis and know what you are dealing with.

Dave

 
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