Prostate cancer

[Viper201]

Sheepshanks said:

I didn't realise the range went that far - I'm trying not to read too much, particularly because there's so much info out there, but I thought the range was like zero to 10.

Don't get fixated on the PSA reading. It is very much a rough guide in the early days and can change rapidly for all manner of reasons. Riding a bike, or having sex the night before can alter it quite a bit. So can infections.

The more accurate figure is the Gleason Score which you will be given after the biopsy. This tells the team how aggressive the cancer is. It ranges 0-10 and anything under 7 is fine. 7 upwards is when some form of treatment will be started e.g. radiotherapy, an op to remove the prostate and so on.

Once the oncology team know the Gleason Score and how far (if) it has spread - this is given a T number from 1-4 - after you've had scans, will determine the course of treatment. To give you an idea, mine said this:

Gleason 9, T3b, N0, M0, presenting PSA 38.

Gleason indicates an aggressive form.
T (tumour) 3b means it has spread outside the prostate into the seminal vesicles.
N0 means the lymph nodes - the 0 means no spread.
M0 is anywhere else in the body - the 0 means no spread.

Until you have all this info you will, like everyone else, worry yourself silly which is perfectly normal. The waiting is the hard part.

Edited by Viper201 on Thursday 19th January 11:25

[Sheepshanks]

Thanks (I think)!

[Casa1862]

HI all, I'm going through the whole Prostate Cancer thing now, I'm 53 and never had any illness before, father had PC but didn't pass away from it, brother at 61 recently diagnosed and thankfully they say only active surveillance required.

My PSA was 6 which was high for my age, MRI scan should two lesions which they were concerned about and I was given a PI-RADS of 4 (out of 5). They've offered a perianal biopsy to confirm, they also mentioned that my prostate was enlarged and soft.

I'm dreading the worst now as PI-RADS 4 is likely to be PC (5 very likely and 1 not likely), I'm assuming the MRI scans are quite accurate, anyone have experience of the MRI and Pi-Rad score, is it also true that getting it younger normally means its more aggressive? Sorry, all questions i should have asked the consultant but was quite shocked when he mentioned 4 out of 5, had a bit of brain fog after that.

[Viper201]

Sorry to hear this news. As you say 6 is high for your age group but not off the scale. The Pi Rads 4 is equivalent to the Gleason score of 7+. Gleason is the way they grade the cancer after a biopsy. 7 and up normally means treatment of some kind but until you have had a biopsy everything is guesswork.

The MRI will not show cancer cells individually. They can be seen from the biopsy samples and depending on how many cells appear different from normal healthy ones will determine how aggressive the cancer is.

This is the worst time, the waiting and not knowing and waking up in the night fearing the worst. Cancer is a scary word. In the world of cancers, prostate cancer is a second division one, as it is slow growing compared to say breast or pancreatic cancers which are premier league. So you can take your time and work out clearly what you want to do once you have the definitive test results. And remember, if you are not happy with your consultant you have the right to a second opinion.

Keep us informed.

[crankedup5]

Casa1862 said:

HI all, I'm going through the whole Prostate Cancer thing now, I'm 53 and never had any illness before, father had PC but didn't pass away from it, brother at 61 recently diagnosed and thankfully they say only active surveillance required.

My PSA was 6 which was high for my age, MRI scan should two lesions which they were concerned about and I was given a PI-RADS of 4 (out of 5). They've offered a perianal biopsy to confirm, they also mentioned that my prostate was enlarged and soft.

I'm dreading the worst now as PI-RADS 4 is likely to be PC (5 very likely and 1 not likely), I'm assuming the MRI scans are quite accurate, anyone have experience of the MRI and Pi-Rad score, is it also true that getting it younger normally means its more aggressive? Sorry, all questions i should have asked the consultant but was quite shocked when he mentioned 4 out of 5, had a bit of brain fog after that.

Yes sorry to read this casa, the good news is that detection will put you onto the ‘two week’ treatment pathway. And you will know that treatments are highly effective, my own diagnosis was a very high and PSA and my own PI-RADS also high. Consultant confirmed my cancer was very aggressive. I know what you mean by brain fogging at that time.
My treatment was worked through with no hiccups, outcome is excellent and I am now on a periodic check.
Try to remain positive and the support of family and friends is always welcome I found.
Have you had a chat with MacMillon cancer trust yet, they can be incredibly supportive and helpful.
Keep us up to date with your progress or just pop in for a chin wag if you wish, and look forward to hearing from you on a good outcome.

[Casa1862]

Thanks for the two replies above, I've just been reading through the thread and now on page 17!! It's so useful to have the info and hopefully I'll know which questions to ask the consultants.

There was no mention PI-RADS on the thread so little idea what it meant, as you guys said, all a little unknow until I have the biopsy, 4 means likely which was the blow for me. I didn't ask for a copy of the report which I should have done and I'm hoping it's only local and not spread elsewhere, will the report mention this?

For some odd reason, because my brother about 8 years older than me, I assumed (clearly wrongly) that it would be a wait and see approach for me also, meaning in my head not as serious, from what you guys say I be offered treatment so on a scale higher.

As you say waiting is the worst, I'll keep updating, just as things were settling down I get this.

[Derek Smith]

Sorry to hear of your diagnosis.

Make a list of things you want cleared up and either ask your oncologist or, failing that, or even as a first step, ask a MacMillan nurse.

I can't speak for you, but not knowing was the worst aspect for me and I pestered everyone for info, and they seemed only too pleased to talk about it. My impression was that they were pleased I'd taken an interest and thought about it. Both were very helpful.

CT and MRI scans become familiar.

[Sheepshanks]

I called the hospital back end of last week as hadn't heard back from my MRI and the Consultant had said, when arranging it, that a biopsy would follow assuming cancer hadn't spread.

In the meantime my GP repeated the PSA blood test and got same result - 5.2.

Someone took my details and I wasn't hopeful but sure enough a lady called back and arranged for me to see the lead consultant this morning - seems I've benefitted twice now from nurses strikes freeing up consultants time! Somewhat alarmingly I was told it would be a review of the MRI and to decide the best way forward but they wouldn't be doing a biopsy at this time.

So full of dread met the Consultant and he said the MRI was more reassuring than they'd feared. There are some nodules but they appear benign. He said the PI-RADS PSA Density figure is 0.1 and at that level they usually send back to the GP for monitoring, at 0.15 they start thinking about doing a biopsy. He was dismissive of the PSA blood test result.

He stuck his finger up and said he could feel the bump my GP and the other consultant had felt. A bit of discussion followed about whether to do a biopsy or not - I'm not mad on having stuff done if I don't need it, and the biopsy is not without risks - but the the lady with him - an admin person, standing in for a nurse - was nodding her head furiously behind him when he was saying he would do a biopsy if I wanted it! I've said I'll go ahead and have it.


ETA - apologies, I've realised the 0.1 figure makes no sense as it should be a scale of 1 to 5 if it was PI-RADS.
It should be PSA Density - he explained what it was. For some reason I recalled it as PI-RADS, but it was definitely PSA Density.

Edited by Sheepshanks on Tuesday 7th February 22:33

[motco]

Best of luck sheepshanks!

[Viper201]

Yep, get the biopsy done, its the only sure way to know for sure. Fingers crossed.

[Casa1862]

Best of luck SS, Your PSA was about the same as mine.

I’ve just had my transperineal template biopsy today, originally I was told mine would be under sedation, then had a call yesterday to say if went local then I could have it next day, otherwise could be a few weeks as lack of Anaesthetists, I agreed a LA. Got a phone call this morning saying it would now GA and not to eat anything, all biopsies had been changed to GA that morning, no, idea why, decision made by consultant, anyway Inwas happy as didn’t feel a thing.

I’m back home and feel okay, I’ve got the little blood when I start to pee as expected and flow is improving, what is a bit odd is that immediately after peeing I feel like going again, anyone else had this? I do pee a lot particularly after a few drinks but don’t the the sensation to pee straight away, that’s only today.

I also asked the surgeon today about the MRI and he said only shows shadow scarring on LHS not both as I thought, he said it was local which is good, however as shadow and elevated psa I’m expecting a positive, hopefully not too aggressive. Once again thanks to everyone for the help.

[Sheepshanks]

Thanks all.

I've edited my post as I wrote PI-RADS when it should be PSA Density. Sorry for confusion.

[Derek Smith]

Casa1862 said:

Best of luck SS, Your PSA was about the same as mine.

I’ve just had my transperineal template biopsy today, originally I was told mine would be under sedation, then had a call yesterday to say if went local then I could have it next day, otherwise could be a few weeks as lack of Anaesthetists, I agreed a LA. Got a phone call this morning saying it would now GA and not to eat anything, all biopsies had been changed to GA that morning, no, idea why, decision made by consultant, anyway Inwas happy as didn’t feel a thing.

I’m back home and feel okay, I’ve got the little blood when I start to pee as expected and flow is improving, what is a bit odd is that immediately after peeing I feel like going again, anyone else had this? I do pee a lot particularly after a few drinks but don’t the the sensation to pee straight away, that’s only today.

I also asked the surgeon today about the MRI and he said only shows shadow scarring on LHS not both as I thought, he said it was local which is good, however as shadow and elevated psa I’m expecting a positive, hopefully not too aggressive. Once again thanks to everyone for the help.

Trouble peeing, eh? - I mean, don't get me going.

Blood in the urine happened a couple of times for me. Didn't get used to It. Not what any man wants to see. As for feeling as if you want to urinate a few minutes after doing so, many of us get that evidently. On the other hand, once my radiotherapy had finished, it was great to feel like I emptied my bladder. One of life's little joys. I went to a party for one of my grandchildren last week. I lasted over two hours without having to go, and without effort. There's joy to come.

I told my wife the first time I went two hours, and she kissed and hugged me. It's a strange life post prostate cancer.

[Sheepshanks]

It's quite weird - or maybe normal? - but I have none of the suggested urination symptoms at all.

I feel like I'm aware of my prostate, which may be psychological. I asked the Consultant if it was enlarged and he just said they vary.

I'm very stiff around the middle / hips which is noted as one on the symptoms and did scare me that maybe it had spread, but both the Consultants I've seen have dissmissed the stiffness as being related.

[crankedup5]

Been putting off my news for a while but here it is, last few weeks have been a little worrisome for me. Return of blood in pee and now blood in poo as well. Investigative work underway. This has badly affected my everyday life in every way. Trying to be positive and concentrate on normal things.

[crankedup5]

Casa1862 said:

Thanks for the two replies above, I've just been reading through the thread and now on page 17!! It's so useful to have the info and hopefully I'll know which questions to ask the consultants.

There was no mention PI-RADS on the thread so little idea what it meant, as you guys said, all a little unknow until I have the biopsy, 4 means likely which was the blow for me. I didn't ask for a copy of the report which I should have done and I'm hoping it's only local and not spread elsewhere, will the report mention this?

For some odd reason, because my brother about 8 years older than me, I assumed (clearly wrongly) that it would be a wait and see approach for me also, meaning in my head not as serious, from what you guys say I be offered treatment so on a scale higher.

As you say waiting is the worst, I'll keep updating, just as things were settling down I get this.

The biopsy is a little uncomfortable I found, but is soon over. Plenty of tea and biscuits will soon put you right. As a matter of nosiness, which Health Trust is offering the service ?

[Casa1862]

crankedup5 said:

The biopsy is a little uncomfortable I found, but is soon over. Plenty of tea and biscuits will soon put you right. As a matter of nosiness, which Health Trust is offering the service ?

Hi Crankedup, i hope things are not serious for you and they get to the bottom of it.

I'm under the East and North Hertfordshire NHS Trust, I had my MRI at WGC and Biopsy at Lister in Stevenage. They say i should get the results in about 3 weeks, more waiting.

[Casa1862]

Derek Smith said:

Trouble peeing, eh? - I mean, don't get me going.

Blood in the urine happened a couple of times for me. Didn't get used to It. Not what any man wants to see. As for feeling as if you want to urinate a few minutes after doing so, many of us get that evidently. On the other hand, once my radiotherapy had finished, it was great to feel like I emptied my bladder. One of life's little joys. I went to a party for one of my grandchildren last week. I lasted over two hours without having to go, and without effort. There's joy to come.

I told my wife the first time I went two hours, and she kissed and hugged me. It's a strange life post prostate cancer.

Rarely a plus with this so take the small wins!! It's been less than 24 hours since I had the biopsy so was expecting some blood, was worse this morning but hopefully will clear soon. The urge has settled a little now, last night was particularly annoying.

[crankedup5]

Casa1862 said:

crankedup5 said:

The biopsy is a little uncomfortable I found, but is soon over. Plenty of tea and biscuits will soon put you right. As a matter of nosiness, which Health Trust is offering the service ?

Hi Crankedup, i hope things are not serious for you and they get to the bottom of it.

I'm under the East and North Hertfordshire NHS Trust, I had my MRI at WGC and Biopsy at Lister in Stevenage. They say i should get the results in about 3 weeks, more waiting.

Cheers Casa, you are in excellent hands, I believe the prostate cancer diagnosis is planned and run on a two week pathway. I expect you will get your results within three weeks and then (if required) a treatment program. But yes the wait, of whatever duration, is not a comfortable situation.
I’m trying to recall my treatment program started about six weeks after final diagnosis. I was at Addenbrookes.

[Viper201]

crankedup5 said:

Been putting off my news for a while but here it is, last few weeks have been a little worrisome for me. Return of blood in pee and now blood in poo as well. Investigative work underway. This has badly affected my everyday life in every way. Trying to be positive and concentrate on normal things.

Try not to assume the worst. The NHS site gives some advice here:

Possible causes of blood in urine.

Other symptoms and possible cause

Burning pain when peeing, need to pee often, smelly or cloudy pee, high temperature, pain in sides or lower back - Urinary tract infection (UTI)

Bad pain in sides, lower back or groin that comes and goes, unable to lie still, feeling sick - Kidney stones

Older men (common in over-50s) finding it difficult to pee, needing to pee suddenly and often, waking up to pee in middle of the night - Enlarged prostate

Hope it may be of some help.