Is Gleason 6 really cancer?

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.

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! :)

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. 

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

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

Ahh I see, that makes total sense Chris. 
Thank you

cheers

Greg. 

Edited by member 04 Apr 2023 at 19:16  | Reason: Not specified

Like someone has already said….how accurate is the biopsy? Many men’s Gleason score gets changed when they have the whole prostate removed. We always assumed my husband was 4+3=7 then after his op he was upgraded to Gleason 9….I think I always assumed 4+5 but we actually haven’t been told which way around.

Wow, Elaine and Ulsterman, I thought there would be maybe an increase of 1 in the Gleason after removal but I never would have imagined a jump of 2. 

Haha yeah thanks Chris. 
I’m trying to learn them as quickly as I can 😁

Cheers

Greg 

Hi Nick

It was great to read your post as that is exactly the way I feel.
I know some people are so much worse off than I am and I also do exactly as you do, I bounce from anxiety and worry to also feeling a complete fraud. I feel that I’m wasting the care teams time and I don’t deserve to have their attention wasted on me. It’s a terrible feeling to wrestle with and I feel for you. 

I think I probably side with the pathologist in the video, in that G6 is a cancer as it shows the same characteristics as other cancer cells. I understand that although not common it can still spread, as in my case they believe it has breached the capsule, but they think it is unlikely to have spread to other areas of the body. 

I have just finished a phone call with one of the CNS, who was absolutely brilliant. I said I have about 18 questions written down to ask In tomorrow’s appointment and is that ok? Will he have time to answer? Her response was “the patient comes first and he’ll just have to make time!” .. which we chuckled at. She followed it up with “he is very good and will be able to advise you with all your concerns and help you decide on a treatment, with your other health conditions in mind. We have a lot of people come to see us and most have many other conditions too. There’s always a plan”

That definitely reassured me for tomorrow’s appointment. 

The aortic aneurysm must be a real worry for you and I feel for you greatly. That will obviously be the first thing that needs tackled and I hope you get treatment and relief soon so you can cope with what might need done with your PCa in the future. 

I think that GP’s attitude is like many out there. I was talking to a friend who has just been through his RP and he told me about his neighbour who’s father and brother both had PCa. My friend said to him that he really should get checked. He went to his GP and he refused to do a PSA test as he did not have symptoms! That is shocking in my opinion and probably a cost saving exercise? 
When I was placed on my biological injections for arthritis I had weekly, then fortnightly, then monthly and now quarterly blood tests to measure inflammatory markers and liver and kidney function. After around a year my nurse said that they would only be checking liver and kidney from now on as they had been instructed to reduce “unnecessary” blood tests as a cost cutting measure. I said that this surely runs the risk of something being missed in someone who is already vulnerable? All she could say was… yes.

I am looking forward to tomorrow’s appointment … and dreading it at the same time. Each appointment just cements the fact that “sh*t’s getting real!” 🥴😊

Thanks for the encouragement Nick and best of luck with your aortic aneurysm OP 

Look after yourself 

Best wishes

Greg. 

Hi Nick

 I hope you’re keeping well. 

The bone scan was clear, thank goodness, so the urology consultant was writing to the Freeman Hospital in Newcastle to arrange a meet with the surgeon and anaesthetist. 
I’ve just this minute come off the phone with the surgeons secretary and I’ve to go over to see him at 11am this Thursday. 

It’s a 2 hour drive from where I live and I’ve not been there before, think it’s a massive hospital, so I best set off about 3 hours before to make sure I get there and find the right outpatient dept. .. that should be fun! 🥴

I’m getting more nervous as things progress but just trying to take each step at a time and see where it leads. 
I’m getting a bit sick of feeling like a rabbit in the headlights. Constant butterflies in the stomach and mind racing. 😞

Hopefully he’s great and will put my mind at ease a little. I’ll update my progress thread once I’ve seen him. 

Thanks for asking, take care

cheers

Greg. 

This is exactly the position i am in.

No symptoms. I started having regular blood tests and part of that was PSA measurement. Whilst it was just over 4 for a couple of years suddenly increased to 6. Was sent for MRI which revealed a small growth. Biopsy subsequently diagnosed Gleason 3+3, grade I.

I was shocked that the Urologist immediately suggested surgery. When pressed he said radiation could be an alternative.

 When asked about active surveillance to start with he dismissed this on the grounds that I'm "too young" at age 64!

I've discussed with my GP who said there's a divergence between urologists who are aggressive and go for surgery and those prepared to consider AS.

He's agreed to work with me and I'm going down the Active Surveillance route. It might turn out to be a massive mistake, but having read about the risks I'm prepared to take my chances. After all it's not like AS is doing nothing.

I was a G6 T2B my NHS Urologist recommended prostatectomy based on the proximity to the edge and my family history. Turned out mine had chewed through the edge and become a T3A by the time it was removed. I still have a lingering PSA.

Otherwise active survielance sounds like the way to go in your case.

Did the urologist explain to you your exact results - or do you have a print out?

Thank for your replies...

I got a printed copy of the biopsy and a CD copy of the MRI scan.

The Urologist explained little. In fairness English was not his strong point, and my Spanish isn't good enough yet to discuss medical issues in depth, but he certainly didn't attempt to explain much, we had to prompt him.

My OH has a friend who's a nurse in a cancer ward in Germany and kindly offered to ask a urologist there for an opinion . Based on the data I provided (biopsy and MRI results) he agreed AS was a reasonable approach.

The Spanish urologist also suggested a PET scan, which the German urologist said was too early at this stage. You can't have them too often due to radioactivity so best kept for later if things get worse is I suppose the reasoning?

Meanwhile I got an appointment with a GP in the Spanish State system. After explaining I'd like a second opinion as surgery seemed too radical at this stage she was very unsympathetic. Her attitude was "you have cancer, of course you need treatment" , with an inference of "why are you here wasting my time?".

Anyway she accepted it was her obligation to refer me to a urologist but said they'll all say the same thing anyway, treatment, not active surveillance. At least I'm now in the state system.

One curious thing about the biopsy was there was no information about what was in each of the individual 12 samples. They were all lumped together as sample A & B, with less than 10% cancer in A and =10% cancer in B. When I asked a GP about that he said sometimes the samples break up and it's not possible to separate them. He said it happens quite often in the lab? Anyone else had this experience? After reading about biopsies I understood knowing how many of the samples were 'positive' was quite an important piece of the puzzle?

As to family history, my father was never diagnosed with prostate cancer, though he died aged 70 of other causes, so who knows? Mother died aged 93 with cancer.

Edited by member 02 Jun 2023 at 21:41  | Reason: Not specified

Hi Jon

It’s understandable that you feel as you do about cancer because of your family history. I am similar as my dad died of pancreatic cancer and had a secondary bowel cancer. My mother has had breast cancer and we have lost relatives on my mothers side to various cancers. 

I do feel that G6 is cancer and as such needs very close monitoring or radical treatment. My PIRADS were 5, one very close to or breached the capsule so the urology team felt that radical treatment was necessary and AS was out of the question. The surgeon thinks it is still contained within the prostate though and believes the operation “should” be a text book success. 

As I was never offered AS I’m not sure how I would cope with living with it. That’s one of the cons of AS as far as I can see, dealing with the mental issues of knowing you have cancer but that nothing is being done to cure it. 

Wish you the best on your journey and I hope everything goes well and smoothly for you. 
All the best

Greg. 

Hi Jon

Yes it will be The Freeman hospital at Newcastle where my op will be. 
I’ve spoken to a couple of guys who’ve had the DaVinci op there and they both say the same as you, great care and (for them) great outcomes. 
I’m hoping mine will go as smoothly. 🤞

Cheers

Greg. 

Thanks Jon and good luck 😊👍

Greg