Is Gleason 6 really cancer?

User

Posted 03 Apr 2023 at 16:17

Hi all

I just watched an interesting video cast on YouTube on the GU Cast channel.

The discussion was whether Gleason 6 should be renamed and not called cancer at all. I’ve seen similar printed articles saying the same thing too.

One of the urologists on the video said that anywhere between 30-50% of men are walking around with a Gleason 6 lesion and they won’t even be aware of it, it will never cause them any issues throughout their lives and as far as he was aware there is no evidence of any Gleason 6 spreading. They said that on a molecular level it is actually incapable of spread. One of the urologists suggested it could be the “wimpiest of all cancers”

To be fair I have also read another article that said in a study of 160 men with Gleason 6, four of them did have metastasis, so although in general it does not spread, there is a very small chance that it can…I guess.

The reason some urologists want to rename the Gleason 6 is because they feel they are over treating many men needlessly.

Pathologists on the other hand mostly all agree that Gleason 6 is definitely cancer and it is dangerous to put these men on active surveillance as there could be higher grade cancer present that was missed at the biopsy stage

The reason I’m interested is because my biopsy came back as Gleason 6 but I definitely have had some quite severe symptoms in the past 12 months.
I’ve had flow issues, frequency, pain urinating and overall genital pain.

I’m wondering if I have symptoms because my lesions were quite large (one was 27mm…is that considered large?) and they were described as PIRAD 5 after the MRI scan. The largest of the two lesions was described as having “extensive capsule contact” and I believe this is what has led them to put me in the locally advanced group and are suggesting radical treatment. After my last appointment they did say they were going to have another MDT meeting and look at my images again.

I know one thing is for sure, the symptoms of genital pain that I have cannot be ignored as they are pretty unbearable at times. For the main part they have actually reduced since my biopsy but they still come and go, right now being a “go” phase. I’m typing this in quite a lot of pain to be honest.

A question I have is, does everybody have genital pain, regardless of the Gleason score and does this diminish after treatment, either RP or RT?

I don’t suppose any of this would alter the doctors opinion that radical treatment is required and I also understand that there may be higher grade cancer present that was missed but I thought this was an interesting point of discussion.

Generally speaking are Gleason scores normally upgraded on proper pathology after removal?

I may be just writing all this down to make me feel like I’m being active with my health instead of just waiting for my next appointment.

I think it’s cathartic for me to discuss every angle but apologies if this is a useless post. Please ignore if that’s the case 😊

Take care

Greg

Edited by member 03 Apr 2023 at 16:29 | Reason: Typo

User

Posted 03 Apr 2023 at 20:48

Prostate cancer does not cause pain in the genitals, even when it is aggressive and advancing so whatever treatment you decide on, you need to get to the bottom of the pain because PCa treatment may not solve it. What does often cause pain in that area is prostatitis, UTI, kidney / bladder stones or urinary muscle spasms. It is entirely possible to have prostatitis and cancer at the same time.

When watching things on line, be sure of the language used. While Gleason 3+3 is often considered suitable for AS, grade 3 cancer would not be - I wonder if the pathologists you were watching were referring to group 3 rather than grade 3?

We have had a few men on here over the years with G6 (3+3) which had either locally advanced or metastasised so while not common, it is certainly possible.

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

User

Posted 04 Apr 2023 at 08:28

When you're diagnosed with cancer it's absolutely natural to assume that every ache and pain is a sign that the cancer has spread, but your symptoms do sound more like a deep-seated UTI. UTIs can be extremely painful and be very difficult to get rid of. A few years ago I had epididymitis - an infection in the tube that connects the testicle to the ejaculatory duct. For months I had a dull ache extending right from the scrotum up into my abdomen, and it took several courses of ciprofloxacin to get rid of it. There's obviously a cause for the discomfort you're experiencing, but it's not down to the cancer. Hope your GP or urologist is able to sort it out for you.

Best wishes,

Chris

User

Posted 04 Apr 2023 at 20:02

Brachytherapy is generally only available for early stage prostate cancer, Greg, because it directs radiation to tumours inside the prostate. When the tumour has breached the capsule (T3) as in your case, I don't think it'll be on offer. It can, however, be combined with EBRT, which may be an option.

All the best,

Chris

User

Posted 03 Apr 2023 at 17:32

Hi Greg. Not sure about others but I am a Gleeson score 4+4=8 Advanced Local Prostate Cancer and have so far had not pain at all or any other symptoms. But I guess that may depend on the location of any tumour or cancer cells. If pressing on a nerve for example? Good luck with getting it all sorted, no pain is good pain. Cheers, David

User

Posted 03 Apr 2023 at 17:39

Thanks David

I really would like to get to the bottom of where all the pain is coming from. It can be my entire genital region, up into my abdomen and under my left ribs.
I am really going to push for more investigation in my appointment on Thursday, even if I have to pay privately for the tests required.

The level of pain is why my GP was considering it to be prostatitis. Perhaps prostatitis is present in my prostate too, so maybe complicating the picture.
Cheers

Greg.

User

Posted 03 Apr 2023 at 20:25

Originally Posted by: Online Community Member

A G3+3 diagnosis is precisely when AS is offered, because very often it won't require radical treatment. The key word in AS is "Active", though; AS is a proactive process; regular PSA testing, regular MRI scans, and further investigation as soon as the possibility of spread is detected. AS is generally only offered for small T1 or T2 tumours and low PSA.

Cheers,

Chris

User

Posted 03 Apr 2023 at 23:12

"What the urologists in the discussion were saying was that men with Gleason 6, group 1, with low PSA should not be put through a biopsy and should be just on AS."

Definitely some confusion here - if they didn't have a biopsy no one would know they were G3+3

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

User

Posted 04 Apr 2023 at 01:46

Hhhhmm - good points well made for the majority of men diagnosed with a G6 but little consolation to those who have died of an advanced / metastatic version or who are living with long term HT.

We know that some UK insurers won't pay out for G3+3 on critical illness policies. They don't seem to realise that while G6 is generally a pussy cat, it's not always the case.

Edited by member 04 Apr 2023 at 01:48 | Reason: Not specified

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

User

Posted 04 Apr 2023 at 09:07

Greg, if you’re struggling with anxiety have you spoken to your GP about it. When I started on HT it brought on debilitating anxiety and my doctor prescribed me sertraline which has helped me immensely get through this ordeal. It’s helped others on here as well. I was not really in favour of taking these but I’ve got 3 years of HT and need SOME QOL.

Cheers,

Derek

User

Posted 04 Apr 2023 at 16:26

I was diagnosed 3+3 G6 and duly went on W&W. When PSA started to climb quite quickly to over 10 I was advised to have treatment " in the short term". My urologist said pussy cat Pca can and does turn in something a lot more aggresive. Brachytherapy seems to have sorted it, I am just waiting for my latest PSA test result.

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 05 Apr 2023 at 10:38

Hi Greg

I've also had a Gleason 6 diagnosis recently (PSA3.4) and am on Active Surveillance.

I seem to switch between being very concerned and then feeling like a complete fraud. As you know, it's quite something when a Urologist sits you down and tells you they've found cancer in your biopsy and then follows it up with "but don't worry too much"!

It confuses me when I read things like "it's not really cancer", if it isn't then why was I told that it was? I do consider myself very fortunate that it's not more advanced and I pray that it stays that way.

Similar to yourself, after 6 decades of excellent health the last 12 months or so have been a nightmare. I'm waiting for quite a serious operation which should take place in May, the PC was only found by accident following a PET scan. I have no prostate symptoms at all.

I had an unpleasant experience a week or so ago. I'm a member of a book group which meets up once a month. They're a lovely bunch of blokes. They asked me if I had any news about my upcoming abdominal aortic aneurysm surgery and I replied no but I've had a prostate cancer diagnosis and then explained it was Stage 1 etc so the outlook is pretty positive. One of the group is a GP (and a bit of an arse, it has to be said) and he was instantly very dismissive. "Don't be a drama queen, you can't call that cancer". And when I urged the others to get themselves checked out, the good doctor piped up with "PSA Tests are a waste of time, don't bother". His wife recently told my wife that he gives himself a PSA test at home every month!

I felt totally dismissed and about 6 inches tall. I went home quite angry and upset.

Rant over!

Anyway, I hope your appointment goes well tomorrow, Greg.

All the best

Nick

Edited by member 05 Apr 2023 at 10:53 | Reason: Not specified

User

Posted 17 Apr 2023 at 16:54

Hi Greg

That's good news regarding the bone scan. Yes, I think you're right, take things one step at a time. I'll have a look at your other thread!

All the best

Nick

User

Posted 22 May 2023 at 11:36

The diagnosis of prostate cancer has improved greatly since I had my surgery in 2011 but in my view to to say that Gleason score of 6 means it is not cancer is not scientific and has to be assessed on the basis of other data, for example the rate of rise, MRI assessment etc

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 06 Jun 2023 at 10:17

Hi Greg,

Going back to your first post, my view is that Gleason 6 should very much still be called cancer because it is by definition, abnormal cells growing.

I feel this way because last Friday I got my biopsy results which were G6, grade 1 with only 1 core of 21 showing cancer. I’m 55 and was told that the preference of the medical team is AS probably for all the reasons covered in the various replies above BUT my MRI showed two areas of concern, one Pi-RAD 3, the other Pi-RAD 4. The one cancerous core was in area 3.

I have not yet received the TNM score nor had access to the MRI report or pathology and there was no discussion about them during my results meeting. Nor the % of cancer in the core or the location.

From my perspective therefore, as things stand, either the MRI grade was wrong or the biopsy failed to pick up any of the cancer that is “likely” to exist in area 4. If the latter, then my current 3 & 3 grade 1 based on just 1 core, could be higher and that could alter the team’s recommendation for AS.

The issue I think is that perhaps anything with a score of 6 is over half way between 1 and 10 and yet we are told that the prognosis for a 6 grade 1 is nowhere near half as serious (in the short term at least) as say a G8. That is I gather one of the factors behind the introduction of the CPG score/grade. With all of the public messaging around cancers generally being of the “find it early, can do something about it” type, it is highly counter-intuitive to then go along with being told that the best thing to do is just to monitor it, especially when my father has PCa (albeit it only surfaced when he was 80) also had lung cancer which my brother has too and which has spread to secondary brain cancer plus my mother died from oesophageal cancer aged 63.

Maybe I am over sensitive to the C word given family experience and maybe my Specialist Nurse or another member of my medical team will be able to explain things fully and give me confidence that my biopsy result is accurate but, for now, I would not want my “pussy cat” cancer being re-defined when the balance of probability (subject to getting the full information that I should have been given in the results meeting) seems to be a false negative is involved.

Jon

User

Posted 06 Jun 2023 at 15:57

Hi Greg,

Hope it all goes well for you and the side-effects are minimal.

From things I have read about DaVinci and chatting with my new Geordie contact, I had settled on Robotic RP route before I had my results meeting and was blindsided by the AS recommendation. If I end up down the treatment road, it is still my preferred option, thankfully they have one at our West Midlands hospital.

Very best wishes,

Jon

User

Posted 06 Jun 2023 at 16:38

I just caught up on this thread. Post biopsy I was Gleason (3+4)7 and was given the choice of procedure. I opted for RARP which took place on May 12th and it has been far, far better than I ever expected. A couple of days of discomfort in the shoulders from the CO2 inflation of the abdomen and 7 days with the catheter and now regaining some urine control as well as experiencing a floppy penis orgasm and I would encourage anyone who has the opportunity to get RARP to jump at it. The dam cancer is out of my body and I can relax (more so after the histology reports on the 24th June) and the symptoms have been mild and perfectly acceptable.

If I could I would name my firstborn "Da Vinci" but those days have long gone.

I wish I had known then what I know now as I would have been far less afraid and worried in the weeks leading up to it!

User

Posted 06 Jun 2023 at 17:52

Thanks for your success story Steve, it helps.
The anxiety is definitely growing whilst I wait for the date …gulp. So reading your post has helped 😊👍

Cheers

Greg.

User

Posted 06 Jun 2023 at 22:26

Good luck Jon

As I said, I would recommend the RARP based on my experiences and after less than 4 weeks I am getting good pee control and it gets better every day. As for erections then I know I am going to have to wait but there are plenty of ways of enjoying a fun sex life without penile penetration - that's all I'll say on the subject but remember that you don't need an erection to enjoy an orgasm.

The fact that I am not sitting here thinking "I wonder if the radiation is working" makes it a no brainer for me. I'm 62 by the way.

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User

Posted 03 Apr 2023 at 17:32

User

Posted 03 Apr 2023 at 17:39

Thanks David

Greg.

User

Posted 03 Apr 2023 at 18:22

Hi,

I think you have summed up the diversity of opinion based on differing views of professionals. Where Geason is reassessed in lab after removal and is different from original, it is more frequently upgraded than downgraded. I have had 3 biopsies, the earlier ones were given as 3+ 4. The last one prior to my last treatment was 4 + 3 so what remained after previous treatments was less 3 grade and more of the 4 grade. In any event, to a certain extent the grading is subjective and in some cases could be assessed as being say borderline 3 whereas others would consider it as borderline 4. So it can be quite marginal.

I never experienced pain in the groin with it and after my second HIFU treatment was told there is no cancer. However, a few days ago on raising myself from a near prone position on a platform (still doing DIY at 86), I felt a strain which has left some minor pain in my groin and thighs which is made worse depending on how I move. It feels like I overstretched a muscle and need to take more care when raising myself. A slight trip on a stair amplified this pain for a time.

Barry

User

Posted 03 Apr 2023 at 19:09

Thanks Barry

There certainly seems to be a “lively” discussion between urologists and pathologists across the globe at present, regarding the issue of grading.

I hope your pain is a strain and settles quickly for you.
Take care

Greg

User

Posted 03 Apr 2023 at 20:25

Originally Posted by: Online Community Member

Cheers,

Chris

User

Posted 03 Apr 2023 at 20:48

We have had a few men on here over the years with G6 (3+3) which had either locally advanced or metastasised so while not common, it is certainly possible.

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

User

Posted 03 Apr 2023 at 22:18

Thanks Lyn

They we’re talking about Gleason 6 (3+3) and grade group 1.
What the urologists in the discussion were saying was that men with Gleason 6, group 1, with low PSA should not be put through a biopsy and should be just on AS.
There seems to be more urologists joining this way of thinking and asking for it to be renamed and not given the cancer label.

They did say that they don’t think anything will change any time soon but they hoped that in the next 5 years they would be able to rename Gleason 6. They weren’t advocating ignoring men with Gleason 6, just that in their view it did not warrant over treatment.
They said that the people most against renaming it were pathologists and older practitioners.

They talked a lot about urologists in the US, especially in areas of high competition between medical practices, I guess because it may be in the practice’s best interest, from a financial perspective, to start treatment.

One of them was at a seminar and he asked the audience of both men and women if they had a Gleason 6 cancer, that was not causing any major symptoms, would they want to know and nobody put their hand up.

I am going to discuss the pain in some depth with the consultant at my next appointment. I know something is definitely wrong, somewhere in my lower abdomen and groin area. I find it difficult to describe but I know it’s definitely just plain wrong and should not be this way.
Even if I have to ask to go private to investigate I think I will have to just do it as I’m concerned that if I go down the RP route then whatever is wrong down there may exclude me from having the surgery.

I feel trapped really, whichever way I turn, and this has gone on for 12 months now. I’m just desperate to find out what is wrong.
I was referred because of the pain and urinary symptoms, my GP suspecting chronic prostatitis or CPPS but urology have never asked about or mentioned this. They went straight to MRI and biopsy.

Confused? Not ‘alf! :)

User

Posted 03 Apr 2023 at 22:28

Thanks Chris

When she saw I was Gleason 6 the specialist nurse asked if I was going on AS, when I spoke to her after speaking to the consultant in my diagnosis appointment.
The consultant did say that AS was not an option for me as the MDT deemed it to be locally advanced and had reached or breached the capsule. So I have only been offered RP or RT.
cheers

Greg.

User

Posted 03 Apr 2023 at 23:12

"What the urologists in the discussion were saying was that men with Gleason 6, group 1, with low PSA should not be put through a biopsy and should be just on AS."

Definitely some confusion here - if they didn't have a biopsy no one would know they were G3+3

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

User

Posted 03 Apr 2023 at 23:18

Sorry Lyn

My mistake, not be put through a radical treatment, is what I meant to say.

This is the video. I’m not advocating their POV I just thought it was an interesting discussion.
The title of the video is: Gleason 6 prostate cancer/Why we should rename it (and why we can’t)!

https://youtu.be/s2dYwatKQU0

User

Posted 04 Apr 2023 at 01:46

Hhhhmm - good points well made for the majority of men diagnosed with a G6 but little consolation to those who have died of an advanced / metastatic version or who are living with long term HT.

We know that some UK insurers won't pay out for G3+3 on critical illness policies. They don't seem to realise that while G6 is generally a pussy cat, it's not always the case.

Edited by member 04 Apr 2023 at 01:48 | Reason: Not specified

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

User

Posted 04 Apr 2023 at 02:07

I suppose that, at the end of the day it’s an esoteric discussion that will not change my course of treatment through the NHS, which I believe is an absolute bedrock and treasure of the UK and God forbid we ever lose it.

What I do know is I’m frightened, anxious, worried, p****d right the ffff off and just so tired of feeling so ill all the damn time. From what I’m reading, it’s sounding like the way I’m feeling is not down to the PCa.

I’ve had a really bad 18 months, health wise, and my diagnosis is just the cherry on the cake.

Sorry, rant over, time for sleep, I hope.

User

Posted 04 Apr 2023 at 08:28

Best wishes,

Chris

User

Posted 04 Apr 2023 at 09:07

Cheers,

Derek

User

Posted 04 Apr 2023 at 10:51

Thank you Chris and Derek

It’s just that so much has gone wrong since losing my job of 31 years because of covid in 2021. I think some of the “body shock” of stopping work, essentially being forced into early retirement so abruptly, has had a massive detrimental effect on me, culminating so far in this diagnosis…but I don’t think I’m done yet.
I have a GP appointment tomorrow and my next hospital appointment on Thursday, I’m going to use the opportunity to once and for all get to the bottom of what is going on with my health.

I’ve had more antibiotics in the past 12 months than I care to remember, including Cipro and Trimethoprim. The biological injection I was taking for my arthritis, up until this diagnosis when I had to come off it, left me wide open to opportunistic infection…and boy I think the bacteria had a party over that past few years!
I’ve had a throat infection for going on over 24 months now… it’s just ridiculous really.
And I feel so sick and tired of it all.

Hopefully I’ll be able to get to the bottom of everything over the coming weeks, if I use the “opportunity” of my diagnosis to get the tests required.

Thank you gents,

Greg.

User

Posted 04 Apr 2023 at 16:26

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 04 Apr 2023 at 16:53

Thank you Sparrow

Thats interesting and something else for me to ask about.

I was going to ask the consultant about Brachytherapy but I didn’t think it was worth it because they can only offer an RP or RT at my local hospital.

I’m glad that it has worked well for you :)

Take care

Greg

User

Posted 04 Apr 2023 at 18:48

You can choose your treatment and at which hospital, I went well of patch because they didnt do Brachy locally. I went to Royal Berkshire Hospital Reading, top notch.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 04 Apr 2023 at 18:52

Thanks John

I’m in Cumbria so my next nearest would be Newcastle. That’s where the surgery would be if I go for surgery.
One of my questions to ask them is do they think Brachytherapy would be best for my particular cancer. If they think it is I will look to going further afield.
Thank you

Greg

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