Sadly joining this group

User

Posted 12 Nov 2018 at 17:49

We've just been diagnosed with prostate cancer.

We're a little confused by the results though, the nurse specialist told us that the gleason score was 6 and the grade was 1, which is good as things go, however he said that the MRI is contradicting the biopsy results, because it looks like it's acting in a different way to how a cancer with these scores would act? I think in other words it's acting more aggressively.

Pete did have a template biopsy, so they knew exactly where to go, so something doesn't add up?

Had the MRI not behave in this way, then Pete could have had the option of AS, but since it is acting weird he'll be offered surgery with the da vinci machine, or r/t and possibly h/t.

We're back to see the consultant on Wednesday to discuss the next steps.

The MRI is T3aN0M0

I think a bone scan will be next.

Can anyone shed any light on the conflicting results please.

Thank you

User

Posted 13 Nov 2018 at 02:37

Hi Michaela,

Sorry to hear your news, did you order the ‘Toolkit’ information folder from this website, which is packed with information to help you both going forward? There is a school of thought that G6 shouldn’t even be classed as cancer, but he’s unfortunate that it has spread outside the capsule which the T3a indicates. I was T2a until the biopsy after my op reclassified it as T3a. They can’t really tell even with advanced MRI scanning until they get in there.

The next step is a bone scan, which will hopefully be clear as the MRI has indicated. Then I would chat to a surgeon and an oncologist, and then see two others for second opinions regarding their respective specialties. Have your multi-disciplinary team met yet to suggest a course of treatment? With advanced radiotherapy techniques and hormone therapies the outcomes of that treatment are similar to surgery nowadays, but all have their downsides.

If you opt for surgery, go for a surgeon that does high volumes of prostatectomies, i.e. more than 100 a year. Practice makes perfect! If you want a list of the ones recommended by their fellow urologists, P.M. me as it shouldn’t really be mentioned on this site for various reasons.

I wonder if you are any less worried than you were before? At least now you know. The prognosis for the future should be good with his staging, so best of luck. Hopefully in your discussions with your doctors you will hear the magic words ‘With curative intent’ more than once!

Cheers, John.

User

Posted 12 Nov 2018 at 20:08

The T3a,N0,M0 on the MRI means the cancer has escaped the capsule but there is no evidence of lymph node involvement or metastasis. In that situation treatment is absolutely necessary as the cancer will eventually start to invade other tissues. The Gleason 6 means the cells are not as abnormal as Gleason 7,8,9 or 10.

Im not sure what grade 1 refers to. See link below for more information.

TNM staging

Ido4

User

Posted 12 Nov 2018 at 20:43

Grade 1 is the new way of describing a G6

Yes, it is unusual for a G6 to be that active but it isn't unheard of. There is a shedload of research going on into why some cancers are more aggressive than the Gleason would suggest, while some men with G10 are still here many years later - the fact is that Gleason tells part but not the whole story but they don't know yet why.

If you haven't yet had the bone scan, the result so far would normally be written as T3a N0MX - fingers crossed for you that M0 is confirmed soon.

Were you told the type of prostate cancer? Adenocarcinoma? Some rare types are more aggressive than adeno.

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

User

Posted 13 Nov 2018 at 11:29

Mrs Lewis, one of the questions you could ask the surgeon when you meet him / her is whether surgery would be nerve sparing or non-nerve sparing and whether they would envisage surgery on its own being enough or whether the package would be surgery + adjuvant RT/HT. In that case, you might then want to discuss whether the surgery offers any benefit.

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

User

Posted 13 Nov 2018 at 14:44

Best Urologists In Britain, recommended by their peers

Matron, the surgeon I ‘recommend’ based on a survey of one, was recommended to me, both by the urologist at my local hospital, by the oncologist and prostate nurse there, by the friend who has seen five urologists at great expense over the world and moreover, several correspondents here who have had great outcomes following surgery by him.

I couldn’t be more pleased by what he did for me, and he has potentially saved my life. Just sayin’.

Cheers, John.

Edited by member 13 Nov 2018 at 15:05 | Reason: Not specified

User

Posted 14 Nov 2018 at 22:01

This was like myself,first,I was told the operation would be in 4 to 6 weeks,then it went to more 8/9 weeks.I won't lie,I am not one of life's coper's,My nerves were shot,not sleeping,panic attacks etc,I just wanted this thing out of me,after making enquiries,I discovered that I could have the operation done in two weeks,at another hospital,an hour and half away,and the same surgeon would be doing it,and my after care would still be at my original hospital,it was a no brainer for me,so had it done saturday afternoon,and was discharged ten o clock the next morning,whilst obviously dont know full results yet,mentally,I feel amazing

User

Posted 14 Nov 2018 at 22:54

This all sounds normal. My cancer was on the edge of the prostate, I didn’t have a bone scan but it’s definitely a good thing to get it.

The waiting times are frustrating but hopefully the surgery will cure him.

Hang in there. Fingers crossed the bone scan is clear. I eventually had one in March 2018 and it was clear.

Best wishes,

Ian

Ido4

User

Posted 14 Nov 2018 at 23:02

31 days from the day you choose which treatment you want - but it is only a target and many NHS trusts don't meet it.

If you change hospitals, all targets go out of the window and the clock stops ticking. The second hospital is under no obligation to treat you in a certain time frame.

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

User

Posted 15 Nov 2018 at 08:45

It all came about because I rang my hospital to ask if there was any update, on when my operation would be,I explained to them,that,I knew that I was being irrational,because they had explained,that a few weeks wouldn't make any difference,but in my head,it was running rampant through my body,they straight away said,if I was willing to go to a different hospital,it could be done in two weeks,and,go back to them for after care,I didn't need asking twice,the next day the other hospital rang with qppointment for pre-op 10 days after,and operation 14 days,and it would be the same surgeon

User

Posted 20 Nov 2018 at 21:25

I Really do feel for you both,sounds just like myself no matter how many people tell you how it's a slow growing cancer,it's of no comfort,I knew I was being irrational but I couldn't get my head round this alien thing inside me I really did feel pathetic,it doesn't help like you said when you read how many people's were upgraded,after surgery,I'm afraid,I can't offer any comfort,only to tell you,you are not alone,many feel the same way as you,today,I had my catheter out,what a relief,the nurse also took my staples out,because they had already started to work themselves out,just got to see what the incontinence is like,but I'm armed with Tena pants,appointment for results in 6 weeks.going to try and relax till then

User

Posted 20 Nov 2018 at 23:36

Yes pursue it. You never know your luck. I was told by 3 people my op would be mid-January but on opening the door to leave I said to the surgeon a bit tongue in cheek I was available for the op tomorrow if he could fit me in. Strangely I saw a flash cross his eyes and the day after got a call saying the op was a week before Christmas, 10 days later, because no-one else wanted one that close to Christmas. I often wondered if me saying that made a difference or what. I had been very time oriented right through whereas some patients and my medical staff are more interested in getting it right and getting the surgeon and equipment of their choice.

6th Jan isn't too far away and it's a Sunday. If you could get mid Dec it would be worth trying would be my belief through whatever contacts you have. I'd wondered how much I'd pay for how much time saved and possibly 3 weeks would be stretching it but hard to say. I wouldn't jeopardise the date you have though.

Edited by member 20 Nov 2018 at 23:40 | Reason: Not specified

User

Posted 21 Nov 2018 at 11:16

Well Michaela, at least you have a date and by next May with luck your old man could be fully recovered and cancer-free.

Of course it’s worthwhile ringing the surgeon’s secretary once or twice between now and January, and let it be known you’ll accept any cancellation at short notice. Sometimes operations are cancelled or postponed because the anaesthetist doesn’t want to take the risk if there is any hint of infection or high blood pressure, etc., when the patient goes for his pre-op testing.

In my own case my raised PSA was discovered last November, but my surgery was not until the following June. I set the timescale as I wanted to research all options, and my cancer was only intermediate grade G4+3=7, so I was in no haste whatsoever. If I was G9 or G10 I might have had a bit more sense of urgency!

Put 2018 down to an annus horibilis and look forward to 2019!

All the best.

Cheers, John.

User

Posted 21 Nov 2018 at 12:44

I think the general rule with PC is that a delay of weeks is ok but a delay of months/years is not.

User

Posted 21 Nov 2018 at 12:47

One more point avoid having your recovery period over a holiday if you can. RP can have life threatening complications and you do t want to be sitting in a&e on Xmas Eve with any of those!!

User

Posted 21 Nov 2018 at 18:38

That's very good news for you both!
Even if the histology does confirm hubby as T3a .....with a G6 (or G7 ) he still has a very good chance of a succesful outcome...
You won't know the complete picture until the prostate and surrounding tissue has been examined fully in the lab ...so more waiting I'm afraid...
But that's the bonus with surgery....at least you'll know pretty quickly if the op has been succesful and have a full breakdown of the Lab results ( make sure you ask for a copy of the histolgy report when hubby has his follow up appt ) ..Future monitoring of PSA levels will put your minds at rest if all is stable .. and if anything changes in the future at least hubby will have the chance of early intervention ..

Best Wishes
Luther

User

Posted 21 Nov 2018 at 20:48

I'm sure like me,you'll both feel pounds better once its out,yes its sore,I didn't go down until the afternoon,for my op can't remember,much of that evening,but 8am next morning I was trotting down the corridor for my Sunday paper,could have murdered a full English,felt brilliant,like a big weight had been lifted off me,the catheter is not that bad,now the catheter is out,and the staples,so now I'm going to look forward to xmas,won't get results till after then,so going to chill now for a few weeks

User

Posted 21 Nov 2018 at 21:41

It was good to read your news. Once again I know what you feel. I think I wrote in my log I was 'over the moon' to get a December appointment after being told January. January can be a rather dicey month in the NHS as well.

On Sunday 18th December I was sent home. On 21st December I received my extra catheter bags. On 22nd December the District Nurse arrived. 28th December I had staples removed. 30th December Trial Without Catheter. The NHS works all year. Fear not.

They do cut back on ops though.

Edited by member 21 Nov 2018 at 21:43 | Reason: Not specified

User

Posted 21 Nov 2018 at 22:16

Great news. As you say the prostate is coming out so the earlier the better. Hope all goes well.

Ido4

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User

Posted 12 Nov 2018 at 20:08

Im not sure what grade 1 refers to. See link below for more information.

TNM staging

Ido4

User

Posted 12 Nov 2018 at 20:43

Grade 1 is the new way of describing a G6

If you haven't yet had the bone scan, the result so far would normally be written as T3a N0MX - fingers crossed for you that M0 is confirmed soon.

Were you told the type of prostate cancer? Adenocarcinoma? Some rare types are more aggressive than adeno.

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

User

Posted 12 Nov 2018 at 20:53

Not had a bone scan yet, only the MRI which stated no mets on the pelvis. The nurse specialist we saw today said the consultant might book us a bone scan. They didn't say what type it was either, I will ask on Wednesday. The specialist said we would be offered either prostectomy or radiotherapy. He also said that it would be unusual for it to have spread with a score like that and his 7.3psa reading. I'm praying it hasn't.

Thank you

User

Posted 13 Nov 2018 at 02:37

Hi Michaela,

Cheers, John.

User

Posted 13 Nov 2018 at 10:49

Thanks for your replies.

The type of cancer is adenocarcinoma. It wasn't found in every sample, but not sure how many it was found in, I will have to ask, think they took about 23 samples.

I thought I'd feel better after getting the diagnosis, but it just seems like the goal posts are moved all the time. From what you guys say, there's no certainty that that the staging etc will stay the same, and then there's the bone scan, which is worrying me, he had a fall in the summer on his shoulder/top of arm and is still having pain from it, says it feels like the bone. The nurse said yesterday that it's unlikely to be mets, but my mind is on fire! When I asked the Nurse yesterday if it was contained, he said yes, but it's up against the edge, so the T3A staging is confusing for me, as like you say John T3a means it's broken outside the prostate.

I have ordered the Toolkit today, hopefully this will help to guide us. I think Pete is probably leaning towards having surgery, I asked about the surgeon, apparently he is very good and does about 3 a week. He'd been in our trust for the past 5 years. I will message you about those surgeons later John, thanks.

I know things could have been worse and for that I am very grateful.

User

Posted 13 Nov 2018 at 11:24

Originally Posted by: Online Community Member

Hi Michaela,

The next step is a bone scan, which will hopefully be clear as the MRI has indicated.

If you want a list of the ones recommended by their fellow urologists, P.M. me as it shouldn’t really be mentioned on this site for various reasons.

Cheers, John.

Just to clarify, not all hospitals offer bone scans to all men with positive biopsies. In the area where we live, bone scans are only done for men with G8 or above or PSA 30 or above. Presumably that is why the CNS said that the consultant might book a bone scan.

I think you have misunderstood the thing about 'naming'. While the rules of the site that we all agree when we first register prevent any member from naming any of their medical team (and actually we are not supposed to name our hospitals either but we all do) this does not apply to quoting people's research or posting a hyperlink to the newspaper articles that name the 'best' surgeons.

Just be aware that while many members here have been fortunate to be under the care of one of these 'golden boys' and have had great outcomes, there are also men on this forum who have had very bad experiences with the surgeon you recommend and one who feels his life has been completely ruined.

It is a great shame that there isn't a list of Golden Oncos as well.

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

User

Posted 13 Nov 2018 at 11:29

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

User

Posted 13 Nov 2018 at 12:14

thanks Lyn,

I asked the nurse yesterday if the op would be nerve sparing, he said the surgeon always tries to save the nerves but it all depends on what it’s like when they get in there. Thanks for the other questions, I will put them on my list.

User

Posted 13 Nov 2018 at 12:33

Also meant to say that there is prostatitis in the back ground. Is there a chance that it is this that is seen on the MRI? which could explain the conflicting issues between the biopsy results and the MRI.

User

Posted 13 Nov 2018 at 14:44

Best Urologists In Britain, recommended by their peers

I couldn’t be more pleased by what he did for me, and he has potentially saved my life. Just sayin’.

Cheers, John.

Edited by member 13 Nov 2018 at 15:05 | Reason: Not specified

User

Posted 13 Nov 2018 at 16:04

I doubt Lyn was writing about your surgeon specifically John. There was a list done several years ago now of what was regarded as the top surgeons in the UK by the profession. This formed the basis of an article in the Daily Mail. In a sense these and perhaps a few other surgeons who subsequently could be added to the list could be regarded as the 'Golden boys'. Other surgeons might have been included but were precluded because their results were not so good even though it was because they took on more doubtful cases. Naturally, those very highly regarded in the profession should do a good job but a mistake can be made by anyone during this delicate operation and with some patients the surgery is particularly demanding even when done by a highly skilled surgeon. One member here had his op by a 'Golden boy' and not only was the result very unsatisfactory but so was the follow up or lack of it. Of course we all want the best for ourselves but a lot of men have to have surgery by a surgeon before he/she reaches a high point and he/she needs to continue to operate frequently to maintain this high level.

I had a biopsy first and was graded T2A. This was upgraded to T3A following MRI . I wonder whether Pete also had his biopsy first and the 23 needles did not find the area of real concern shown in the MRI. Where an MRI is done first the needles can be particularly targeted at the suspicious area(s) .

Barry

User

Posted 13 Nov 2018 at 16:12

Yes Pet had a MRI done a week before his template biopsy. So like you say Barry they have gone to where the MRI showed the tumour.

Ive been googling like mad to see how prostatitis looks on a Mri, but not finding much. Just seems strange that his scores are low but there’s something on the Mri.

thanks

User

Posted 13 Nov 2018 at 16:37

This of course Barry, is the problem with ‘league tables’ in hospitals, where some places claim their poor morbidity rates for heart surgery are down to the bravery of their surgeons to take on ‘hopeless’ cases.

So I am pleased I ended up with a ‘Goldenballs’ with a PR operation and a private clinic, on the strength of personal recommendations alone, and the Mail article above coincidentally appeared on my iPad whilst in my hospital bed post-op!

I am cured for now, but he still owes me 2”! Funny how that’s never really mentioned, nor are Nomogram prognostications for recurrence, unless you delve into it.

Cheers, John.

Edited by member 13 Nov 2018 at 17:50 | Reason: Not specified

User

Posted 13 Nov 2018 at 17:05

A normal MRI can’t tell the difference between prostatitis, cancer and bruising.

A mpMRI can.

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

User

Posted 13 Nov 2018 at 17:44

It was very sad that a couple of the urologists on the original ‘golden list’ went on to be diagnosed with advanced prostate cancer themselves and subsequently died. Some of the poor feedback on here recently has been about not the skill of a ‘golden boy’ but their bedside manner or as Barry says, their fast disappearance if it goes wrong.

It was easy for us; John’s mum and dad plus my dad were already under the particular urologist so it was a no-brainer that we would pay to have the same guy; we already had a very positive relationship with him and wanted to ‘keep it in the family’ so to speak. It would have been more difficult if we hadn’t the cash needed as the surgeon John was first referred to was dismissive and hadn’t read the notes.

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

User

Posted 13 Nov 2018 at 21:03

and that’s the worrying thing, what if you can’t afford to buy the best care. We are in their hands so to speak, lots of people don’t even know how to see another/better consultant.

my head spins 😔

User

Posted 13 Nov 2018 at 21:43

If your surgeon does 3 a week that should be good enough. I'd be very happy to have him. Although I would be looking at the British Association of Urological Surgeons website to see what his stats are like. Not that it would make any difference probably as there are so many differences in cases and I'm not someone who wants to stir up the people I'm looking to save me, especially if he offered a fast date.

Also with regard to the pain, I know only too well such coincidences. Getting very painful arthritis in my hip during diagnosis and finding a Daily Mail article about a urological surgeon who died of prostate cancer after getting a pain in his hip while on a country walk, just like I did, and saying the hip is where it strikes first.

Not only that but just before the op I must have been worrying and slept in a strange position and woke up with a form of lockjaw that fortunately went after an hour, the only time in my life that's happened, funny looking back.

The nurse told me not to associate every pain with the illness. She was right.

User

Posted 13 Nov 2018 at 21:53

I don't think it's essential to have to pay to get a good surgeon as sometimes the same surgeon will do your op privately or within the NHS. Paying either directly or by insurers may get you seen and treated earlier, and in more congenial surroundings and with less risk of a relative novice though.

Barry

User

Posted 13 Nov 2018 at 21:57

Originally Posted by: Online Community Member

and that’s the worrying thing, what if you can’t afford to buy the best care. We are in their hands so to speak, lots of people don’t even know how to see another/better consultant.

my head spins 😔

The thing was, we had no idea about his success rates, positive margins, % recurrence or any of that. We were paying to have a man that I liked and trusted; no more than that. John didn't have a view and hadn't attended any of the previous appointments with the parents - I did it all. I didn't even know until later that he was on the list of great & good. We paid for a continuing relationship rather than anything technically important.

Hopeful for you that the potential T3 is just infection and your decision becomes easier as you meet the different specialists and get their informed opinions.

It is also worth noting that aftercare with private surgery can be very poor - that needs to be taken into account. We had to fight for John to have access to NHS ED support because he hadn't had the op on the NHS; some members here have been left in limbo because their private surgeon will not provide the ongoing monitoring and the GP refuses to pick it up. So don't be downhearted - NHS is often the better option.

Edited by member 13 Nov 2018 at 22:00 | Reason: Not specified

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

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