Prostate cancer. A useful resource.

[The general]

The consultant then let us go away for a month in the van in February for a bit of RandR.

Hormone holiday they call it , luckily i only had 3injections BUT i still get the after effects . One tip for you guys , when going thru the treatment RT /HT try and keep your john Thomas in working order , if you dont chances are you will end up big time ED .

 

[The general]

I find the subject of PC very interesting , i think it strange that different hospital trusts approach treatment differently . I remember well when i had meetings with the consultants , the surgeon was most abrupt when i said i am going for RT . I think he wanted another knotch on his knife .

 

[The general]

Positive news there is no sign of cancer in my bones that were scanned on my MRI

That is extremely good news !!!!!! Can i ask you what was your psa reading at beginning ???

 

[DavidG58]

That is extremely good news !!!!!! Can i ask you what was your psa reading at beginning ???

A fairly modest 5.8 and 5.9 three weeks apart in November / December 23

Body scan tomorrow to check the rest of my body , they have only seen my prostate area so far on the MRI

 

[The general]

I qualify for free parking

For some reason i kept my free parking tickets jan 2019, 20 sessions

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[Hirsch]

Just been for a follow up appointment to discuss biopsy results, while mentioning that procedure I need to correct a biological inaccuracy, the biopsy was extracted by tool that passed through my perineum, not my sphincter, which is indeed my anus we actually have several sphincter doing various retracting functions throughout our bodies

As already hinted by phone I have cancer

Having barely passed any exams with decent results, I have high grade cancer apparently not as good as it sounds

For anybody who knows about these things I have a Gleason score of 4+5=9 this means it is likely to be aggressive

I have a T3a cancer have already forgotten what the a meant but range is 1-4 where 4 is worst

Due to the potentially aggressive little sod I now need a bone scan, booked for tomorrow , can’t get much quicker than that an injection then wait two hours before full body scan which will show if cancer has already got to my bones , this will determine the treatment options

Positive news there is no sign of cancer in my bones that were scanned on my MRI but only looking at my abdomen then

Then next week I have another appointment for scan results and to discuss treatment options

Brachytherapy already ruled out due the stage my cancer has reached

Feel odd, no different to how I felt at Christmas but the C bomb has gone off, next weeks meeting will be much more informative

Two bits of good news, no changes needed to my diet or alcohol consumption and I qualify for free parking we discussed buying a season ticket option on our way in today

Good luck and best wishes with it.

 

[Spara4042]

Brief summary of my last few months

Coincidentally I had my first doctor appointment a week before this thread started, digital inspection suggests enlarged prostate

Followed by PSA blood test, elevated at 5.7 our target age related is below 4 I am 65, was 64

PSA repeated 3 weeks later (now end of Nov) still 5.8

Referred to Urology at Chesterfield General early December had to google urology

Another finger check, she can feel a growth on one side

Referred for MRI had that on my 65th birthday 18th December

Telephone consultation arranged with consultant for mid Jan, seemed a long time to wait , letter brought it forward by a week I panic and wonder why

Consultant gives be a very good explanation of what the MRI shows him, growth that needs investigating by biopsy which he explains very well he tells me it is unlikely not to be cancer but it definitely hasn’t spread and as such there is no panic easy for him to say


Biopsy booked for Thursday this week

Chat to explain procedure, given tablet antibiotic then sent to wait for an hour before procedure

Don’t know if they are all done the same, but up on bench arse at end of it, legs put up into stirrups , local anaesthetic stabbed in about 10 places, then scope inserted in my anus , quite large but needs must

Then the snipping tool is inserted through my sphincter, snips and retracts , 12 times in my case while the consultant chats to me about all sorts then my prostate

Shows me the lump on screen from my MRI then says opposite side is hazy so will take samples from there at same time rather than bring me back

Had to wee before I could leave and sent home wearing a Gandhi style nappy

Told I might / would bleed in wee poo and semen for a few days , not sure how I would spot the last one, absolutely no chance my old man is playing for a while

Phone call this morning confirmed cancer, now awaiting letter with date to see consultant

Now trying not to worry about it

I'm on a similar journey

Saw GP on 28th Nov for unrelated facial growth, SWMBO was worried it was cancerous so booked the appointment.
GP not concerned about growth but agreed to do PSA when I explained 30+ year history of peeing problems.

29th Nov GP rings to say PSA raised at 13.4 & he's referring me on the "14 day pathway".
16th Dec saw Urinary Consultant who did the dreaded Digital Rectal Exam (DRE), or "finger up the bum" He declares the prostate is "smooth & unremarkable", "like all previous DRE's" says I. After a quick chat he refers me for an MRI.

20th Dec MRI done, 22nd Dec I get the dreaded phone call stating "MRI shows a large mass on the prostate". Happy Christmas to me
28th Dec another phone call, Biopsy arranged for 3rd Jan & Nuclear Bone scan on 5th Jan. Phone consultation on 8th Jan cancelled, replaced by face to face on 15th Jan.

15th Jan, results are in - 11 out of 16 samples are cancerous, Grade 5, Gleason 5,4. Option of meeting Da Vinci Robot or Radiotherapy.
Opted for the latter. Hormone implant injected & 14 days of oral hormones.

8th Feb Oncology appointment...tbc
As you say DavidG58, trying not to worry & getting on with life. Due to head south in 12 days for our winter break, hopefully

 

[DavidG58]

trying not to worry & getting on with life. Due to head south in 12 days for our winter break, hopefully

Hope that goes well, being a couple of weeks behind you that’s very encouraging

Hoping our MH can be repaired quickly , my desire to go to Italy is becoming a plan for Spring the Spain / Portugal in Autumm

Best wishes to you and any others out there going through anything similar

 

[The general]

Hope that goes well, being a couple of weeks behind you that’s very encouraging

Yes , its ‘good ‘ i had same experience with my mate he was ahead of me and gave me some great tips

 

[The general]

Best wishes to you and any others out there going through anything similar

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[InvictaMoto]

Phew.

Had my biopsy results this morning. Apparently out of 23 samples only 1 is showing a 1mm cancerous area. Everything else is clear.

It's a relief and I am now set for three monthly PSA blood tests.

A friend of my wife from work was having his MRI at the William Harvey in Ashford today. Hopefully he's in the same boat as me.

 

[The general]

It's a relief and I am now set for three monthly PSA blood tests.

Active surveillance ? Best outcome

 

[InvictaMoto]

Active surveillance ? Best outcome

Yes. MRI showed no other places, bones/lymphs, affected.

 

[The general]

Yes. MRI showed no other places, bones/lymphs, affected.

This is what i mean about different trusts approach things differently , i never had a bone scan , mri/biopsy/treatment , HT /RT now on 6 monthly psa tests

 

[lorger]

Update on my prostate issues, had my Urodynamics testing carried out this afternoon. Not the most pleasant but not actually as bad as I was expecting, probably down to both nurses being really good and with a sense of humour.
Anyway they filled my bladder up while hooked up to the machine and asked me when I felt I needed to urinate, then when I felt I couldn’t hold much longer. The managed to get 475ml into my bladder with the average male being 500ml, so all good in bladder capacity. I was then asked to pee while the Cartheter was still in lace, that wasn’t a pretty sight but thankfully it was only saline, after emptying I should have left around 20-30ml in my bladder.
After a scan of the bladder I still had 258ml, the outcome being the prostate is squashing my Urethra and preventing me emptying my bladder, she will send results to Urologist who I see next week. She said it would probably need a procedure to sort this out and the Rezum the urologist recommended she also recommended.

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[Oldrat]

Dear old Charlie.

I don’t think it’s prostate cancer, but whatever it is hopefully it’s been caught early and can be successfully treated.

 

[DavidG58]

I had a gamma ray full body scan on Friday, apart form a boring 2.5 hour wait for the radio activity to pass round my body it was a very easy procedure

The injection was one of the best I have ever had , told the nurse so, she said it might be because we only give 0.5ml, hardly worth doing

Told to avoid pregnant women and children for 24 hours but no other issue

Waiting for the results which I was told would determine treatment , been reading information supplied on the day of my diagnosis , wish I hadn’t

If the cancer has spread to my bones , this is what the scan is for, there is no cure, just palliative the appt is going to be a big one

 

[CazPaul]

The very best of luck and wishes for that appointment David.

 

[rod_vw]

I had a gamma ray full body scan on Friday, apart form a boring 2.5 hour wait for the radio activity to pass round my body it was a very easy procedure

The injection was one of the best I have ever had , told the nurse so, she said it might be because we only give 0.5ml, hardly worth doing

Told to avoid pregnant women and children for 24 hours but no other issue

Waiting for the results which I was told would determine treatment , been reading information supplied on the day of my diagnosis , wish I hadn’t

If the cancer has spread to my bones , this is what the scan is for, there is no cure, just palliative the appt is going to be a big one

I hope that all is clear when you get the results.

I had my bone scan on the 11th of July but couldn't get results until the 10th of August when I managed to get a verbal confirmation that it was all clear. To compare PSA figures, I was at 10.3 initially then a minor drop to 9.7 at the time of my meeting with the consultant in mid September.

Horrendous waiting times which I personally attribute to non-existent management of our hospital trust not specifically the lack of medical personnel.

Good luck.

 

[DavidG58]

I hope that all is clear when you get the results.

I had my bone scan on the 11th of July but couldn't get results until the 10th of August when I managed to get a verbal confirmation that it was all clear. To compare PSA figures, I was at 10.3 initially then a minor drop to 9.7 at the time of my meeting with the consultant in mid September.

Horrendous waiting times which I personally attribute to non-existent management of our hospital trust not specifically the lack of medical personnel.

Good luck.

How are you doing now, what treatment did you have ?

Ignore this, just read your earlier comments

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[rod_vw]

How are you doing now, what treatment did you have ?

Ignore this, just read your earlier comments

Treatment? That is almost a joke!

When I started my HT I asked for a rough time line for starting RT and was told I should hear in about twelve weeks which worked out as mid-December.
Late November I rang the RT department secretaries and was told it had slipped and would now be mid-February but if they had a vacant slot they would ring me.
Late January I rang again to now be told it would be mid-April but no guarantee of that!

NHS Shrewsbury & Telford Trust worse than Fred Carno's circus, I feel an official complaint coming on but from experience that is a waste of time.

 

[seasideBill]

Update on my prostate issues, had my Urodynamics testing carried out this afternoon. Not the most pleasant but not actually as bad as I was expecting, probably down to both nurses being really good and with a sense of humour.
Anyway they filled my bladder up while hooked up to the machine and asked me when I felt I needed to urinate, then when I felt I couldn’t hold much longer. The managed to get 475ml into my bladder with the average male being 500ml, so all good in bladder capacity. I was then asked to pee while the Cartheter was still in lace, that wasn’t a pretty sight but thankfully it was only saline, after emptying I should have left around 20-30ml in my bladder.
After a scan of the bladder I still had 258ml, the outcome being the prostate is squashing my Urethra and preventing me emptying my bladder, she will send results to Urologist who I see next week. She said it would probably need a procedure to sort this out and the Rezum the urologist recommended she also recommended.

Good to hear you’re making progress. Having been down the same road and undertaking a lot of of research, I came away wondering if the treatment options offered are constrained by what the Urologist is trained and equipped for? I asked about the Rezum procedure and my Urologist dismissed it claiming it created too much scar tissue. I eventually opted for something different, but who to believe? I guess all you can do is research the various options and advice carefully and make an informed decision. Good luck.

 

[sedge]

TO ABSOLUTELY ANYONE reading this thread - anyone with fears of or diagnosed with Prostate Cancer - please, please at the very least find out what support groups exist in the area you live. And then - ring them! They have the accumulated lived experience of 100s of years amongst their members and if they don't themselves know, should be able to advise you who to contact about whatever it is that you need to know!

For God's sake - be willing to share your concerns, whatever they happen to be. Some men are not at all willing to speak. One of the things our lot routinely do is ask the blokes attending for a PSA blood test where they saw the advert for the session and therefore decided to come and get a test. Rugby Rokeby Lions Club do a big session (250-300 ish men) every 12 months, which we've been happily arranging. providing phlebotomists for plus all the equipment needed and 'marshalling' and RRLions both subsidise the costs AND distrinute the publicity for but last year I asked a chap this question and he answered he didn't know and perhaps his wife had seen it somewhere cos she works in the NHS. Oh - does she work in a local GP surgery then? I enquired with a smile, just conversationally, I thought and intended. He flew off the handle telling me in no uncertain terms he was absolutely NOT prepared to be cross examined like that and stormed out of the queue - he came back later and pointedly no-one else dared ask him anything 'so personal' when he did.

Nobody else thought I'd asked him 'confrontationally' whatsoever. Nowt so queer as folk.

 

[lorger]

Good to hear you’re making progress. Having been down the same road and undertaking a lot of of research, I came away wondering if the treatment options offered are constrained by what the Urologist is trained and equipped for? I asked about the Rezum procedure and my Urologist dismissed it claiming it created too much scar tissue. I eventually opted for something different, but who to believe? I guess all you can do is research the various options and advice carefully and make an informed decision. Good luck.

Thanks for that, did he mention where the scarring would be. This hasn’t been mentioned to me by anyone and not seen it mentioned anywhere, I’m just wondering what scarring could occur as they only use steam to shrink the prostate. Unless the steam causes scarring on the surface of the prostate.

 

[Nirvanauk]

Thanks for that, did he mention where the scarring would be. This hasn’t been mentioned to me by anyone and not seen it mentioned anywhere, I’m just wondering what scarring could occur as they only use steam to shrink the prostate. Unless the steam causes scarring on the surface of the prostate.

If it helps, I have developed a hernia and he said it can't be done by laprascope as to much scarring from the radiotherapy so would have to be done by incision.

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[seasideBill]

Thanks for that, did he mention where the scarring would be. This hasn’t been mentioned to me by anyone and not seen it mentioned anywhere, I’m just wondering what scarring could occur as they only use steam to shrink the prostate. Unless the steam causes scarring on the surface of the prostate.

The last thing I want to do is scare anybody off a particular treatment option but, if you’re like me, you’ll want to know everything you can. My understanding of Rezum is it doesn’t shrink the size of the prostate (only medication can do that effectively e.g. Finasteride), but the steam is used to destroy some prostate tissue reducing the restriction on the urethra. The destroyed tissue is eventually replaced by scar tissue. If you research any procedure including Rezum you’ll see all sorts of references to potential side effects which, in common with all treatments are many including scarring and narrowing of the urethra. However, there isn’t a single treatment that is risk free and one-size doesn’t fit all, that’s why deciding is so bloody difficult. My neighbour had the invasive surgical procedure (TURP) which was initially successful but they subsequently damaged his urethra with radiotherapy and he now has to use a catheter because of scar tissue, so you pay your money and take your chance. I suspect that most NICE approved procedures have good outcomes but the consequences of things going wrong can really impact on quality of life.
I found some information on line about the number of procedures carried out by named NHS Urologists on the basis that the more they do the better - some just do a handful each year. It also contained information about complications during surgery, but obviously most folks don’t see real improvements until weeks/months following procedure so there’s no such thing as published ‘success rates’, but clinical studies can be obtained.

This is an excellent summary of the various options:

https://www.urologypartners.co.uk/repository/originals/UP%20Rezum%20patient%20procedure%20information%20leaflet%20FINAL%20for%20website.pdf

 

[lorger]

seasideBill thanks for the link, a very informative read and certainly arms me with some questions for the Urologist.

 

[Pedro Pallent]

Jim (would you consider making this post a sticky in an appropriate place?

I wouldn’t normally expect one forum to promote another, but I wonder if, in this case, it might be acceptable.


I’m a bit of an evangelist about promoting early checks for discovering PC. I’m a survivor of 3 1/2 years and am only around because I asked to be checked.

Are you one of those guys who spend ages at a urinal, have you ever wondered why?

Of course it could just be age related. This forum will help you find out more information, and may just save your life.


It’s a very useful forum run by the MacMillan nursing is an excellent resource for anyone worried about Prostate cancer.

It’s one of the few cancers that, providing you find it early enough, you can survive with a 100% normal life.

Prostate cancer forum

A group for anyone affected by prostate cancer to share experiences and ask questions. Whether you or someone you know has been diagnosed, here you can discuss treatment options, side effects, prostatectomy and anything else that’s on your mind.

community.macmillan.org.uk

I get checked every year, I am 70 and so far clear, never hurts to be sure; one way or the other. Far too many men with their heads in the sand, it’s just a blood test.

 

[Pablo19]

I have somehow missed this thread previously but have had my own experiences with prostate issues which I guess I should share!

About 8 years ago and aged about 53/54 I landed a job which required me to have a medical. Everything was fine and I was in excellent health apart from the PSA test which was quite high at around 9.5. I was advised to get some tests done including an MRI scan and the result of this shook me to me core. They advised there was a lesion in the prostate and said I would need to have a biopsy. I had this and I don't know what it was called but it was the one where they go through the back passage and take 12 "core" samples at various points around the prostate. When I went for the results I had convinced myself that I had PC but was relieved and surprised when they told me there was no trace in any of the 12 samples taken. They said they would continue to monitor me and confirmed I basically had BPH and I started taking Tamsalosin and Finasteride to ease my water "issues"

A couple of years later I wasn't happy having to take meds every day (I hate taking anything normally) so started to explore procedures that I could have to ease the symptoms of BPH. This was going to be done privately through my work PHI. The specialist I was referred to looked at my history and advised me that after seeing my MRI scan and what appeared to be a lesion, he wasn't happy that the type of biopsy that I had was tergeted enough and it was possible that the lesion had been missed by the random nature of the samples. This set me off worrying again. Anyway, he arranged to do another biopsy, this time a template fusion biopsy which is basically guided to the exact spot that they need to, using the MRI scan to guide them. they take roughly 40 samples through the perinium (gooch!) Thankfully I was knocked out for this one! Anyway, I went to the follow up with the specialist and again to my great relief he said that again they found no trace of any cancer cells. The guy who did this is one of the top Urologists around by the way so I'm reasonably confident he hasn't made an error.

I left that job before having any procedure but after I'd left, I spoke to the Urology department that were monitoring me and they offered me a Urolift and they went ahead in between the two Covid lockdowns. This has helped to some degree but not as much as I'd hoped. I continue to get PSA checks done every year, my last one was 4.5ish but the medication is known to mask the score, reducing it by about 50% so in reality if I stopped taking the meds I would probably revert back to 9ish.

I do sometimes wonder if they are checking enough by just doing a PSA test but the appointments that I used have at the Urology department stopped during Covid and have never restarted. I am reaching a point now where I might start looking at other options, Rezum or TURPS but as I'm retiring at easter I will probably wait for a bit.

Anyway, sorry to ramble. I will have a read through the 8 pages of this thread when I get time.

 

[Clive Beeza]

My GP is lead doctor/senior partner/head of practice and since it was he who said it was their policy I saw little point in changing to another GP there but I'll have a go.
I'd rather not report him as I don't want to compromise my reception at any future appointments, although when he said they don't do tests because they are not cost effective I couldn't help but reply that it certainly wasn't cost effective for me after 45 years of contributions.

For your GP to get away with his unacceptable attitude
"It only takes good men to do nothing"

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