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User
Posted 29 Nov 2020 at 22:56

Hi,

I am 56, and about 6 weeks ago went to the Doc after having an irritated bladder all year, he suggested a PSA test and results came back as 22.1.  Not sure really what that meant at the time, had the rubber glove inspection and a slight abnormality was detected on the prostate left hand side.

I was referred to the Urology clinic and was phoned within a week for a bone scan as PSA was “High”, Dr Google scared the sh1te out of me.

Was again referred to UR clinic and Consultant raised eyebrows, tested the strength of his gloved fist (It felt like that) and said I would be sent for MRI, another PSA test came back as 24.5.

MRI has a PIRAD score of 5/5 and was then called back in for Biopsy.

What a wonderful experience that was, am still recovering and awaiting results.

I feel a little overwhelmed at present as the pace has been quick under 6 weeks so far (Which is good I suppose?) and I have seen the NHS doing a super job under stressed conditions. However although I don’t have an official diagnosis I think I know where this is going.

Treatment options, potential change in quality of life, and other questions swirl about in my head at the moment. If I read the signs my only option is surgery I think? Help!?

David

 

Edited by member 08 Dec 2020 at 09:06  | Reason: Typo

User
Posted 08 Dec 2020 at 08:51
Hi,

Just a note to say thank you to Andy62 for the telephone call yesterday, I feel greatly more informed and understand a lot more about the tests and issues surrounding this disease. I get my results on Thursday (unfortunately/hopefully) and now I have some chance of understanding them and the treatment options.

Thanks for the support all.

David

User
Posted 29 Dec 2020 at 10:56

It’s a steep learning curve! 😅

Ido4

User
Posted 29 Dec 2020 at 13:57

Wishing you a smooth recovery Buzzy. Was my husband’s 5 month post op ‘anniversary’ on Sunday.

User
Posted 30 Dec 2020 at 17:26

Hi Buzzy,

I haven't seen a good primer on PSA - it can be quite complicated.

“Zero isn’t Zero” - there are two aspects of this, the lowest that any test can measure, and that there are other sources of PSA in the body, albeit tiny, be even women have measurable PSA levels on the most sensitive tests. You'll see references to "undetectable" but I consider this term useless, because what's detectable on one tester won't be on another using a different model or assay, so undetectable has no uniform meaning. Each tester/assay has a minimum value it can measure. Some common ones are:
0.1
0.01
0.003
If you are below the minimum for that tester/assay combination, you will be given <0.1, <0.01, or <0.003 (for the three examples above).

The lab at my local hospital measures down to 0.01.
The lab at my radiotherapy hospital measures down to 0.1, but that's not good enough for prostatectomy patients and their samples have to be sent to one of the central London hospitals which does down to 0.003 although 0.01 is regarded as good enough in this case.
Another hospital linked with a support group I run does prostatectomy patients down to 0.003, and all others down to 0.1.

Different cancer cell mutations produce different amounts of excess PSA. You might get a rough idea in your case from what your initial PSA at diagnosis was, and the extent of the cancer. If you've had prostate cancer a long time, you will probably have multiple different mutations among the cancer cells, and their PSA levels may be different. About 15% of prostate cancers don't produce any extra PSA, and those can be more difficult to pick up in the early stages.

What tends to be more useful is to look at the rate of change of PSA than the absolute numbers, when monitoring for progression. You're looking for stable numbers, rather than increasing numbers, but to be low is good too.

For protatectomy, ideally your surgeon will want you to be well below 0.1. Three consecutive increases above 0.1 or hitting 0.2 are the usual triggers for further investigation, although the investigation doesn't necessarily happen at that point - often they need higher levels to initiate some types of investigation.

However, this isn't driven entirely by PSA. Histology factors in too. Sometimes they will know from the histology they left some behind, and if this is cancerous and aggressive, they may initiate further treatment sooner. Sometimes some prostate cells are left which are not thought to be cancerous (nerve sparing can do this), and these will give a higher background PSA level, but that is expected to remain stable and not increase.

The high accuracy PSA measurements can cause patient anxiety when the least significant digit bounces around, but an oncologist will understand this. These can be very useful when working out things like doubling times. One prostatectomy patient I spoke with who was being incorrectly given the low accuracy ones when his PSA was rising meant they couldn't immediately work out his double rate, which would normally have been important in selecting followup treatment. This was regarded as a medical mistake.

PSA is a much better tool for monitoring treatments than it is for initial diagnosis. It was indeed originally used for this, before anyone started using it for initial screening.

Wishing you the best result and all the best for 2021.

User
Posted 30 Dec 2020 at 19:04

Buzzy 

My post op letter said if my PSA broke the threshold of 0.1 I would be referred back to the consultant. This just meant I came back under the radar and PSA tests remained at three month intervals. The trigger for treatment options is generally 0.2 which can be considered to be BCR. Salvage treatment for me started at around 0.27. Your post op histology will also have a bearing on your post op outlook.  My hospital tests down to at least 0.03 and my consultant automatically retests any post op figure above 0.09. 

Having a more sensitive test meant I knew where I was heading at an early stage, and recurrence was not a surprise.

I visited the Christie in Manchester for some follow up treatment and only got one decimal point results. I would be interested to know what sensitivity post surgery patients get. A consultant there said he preferred a two decimal point test.

Stay positive, next hurdle will be your TWOC.

Thanks Chris

 

 

User
Posted 30 Dec 2020 at 23:49
"This infers some treatments are given that maybe unnecessary, and others are delayed due to measurement of an absolute number, with no available patient reference level(?) Rather than a trend that is obscured because not everyone is using the same scale or measurement accuracy/assay?"

Unlikely because the universal threshold is still 0.2 OR three successive rises above 0.1 OR evidence of biochemical recurrence (from a PET scan, etc)

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

User
Posted 31 Dec 2020 at 00:12

"On another topic how do you know PC has spread to your bones?"

 

From a bone scan if the metastatic clusters are large enough to see; with micromets, there is no way of knowing until the PSA starts climbing. 

 

In reality, the surgeon triangulates the 6 week post-op PSA with the pathology results and then the subsequent PSA tests in order to predict the likelihood that the op was successful. They have many years of data to rely upon:-

- a post-op PSA of less than 0.1 with negative margins and adenocarcinoma and no perineural invasion indicates a likely success - if the PSA remains <0.1 for at least 5 years, even better

- a post-op PSA of 0.2 is bad news; indicates that the PCa had already metastasised before the op

- a PSA that falls to <0.1 immediately post-op and then climbs steadily over a period of time indicates that some cancer cells have been left in the prostate bed; this is often also indicated in the pathology. Salvage RT is usually considered in this case and only if that is unsuccessful would they conclude that the mets were further afield

- with a post-op pathology reporting positive margins, PNI and / or a rare type, a wise surgeon may not wait for the PSA to go above 0.1 before referral to oncology

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

User
Posted 31 Dec 2020 at 09:04
You are over- fixated on the significance of your previous PSA of 24 which I think in your mind is worryingly high.

The PSA scale just on this forum at diagnosis has been 0.5 to 13,000 ... the highest PSA our urologist has ever seen is 160,000! We have had men on here with PSA of 60, 80 or higher and no cancer - we have seen men with PSA of 80 or more have successful radical treatment.

It isn't your PSA that is the main concern; you have had surgery knowing that you were a T3b and that neither of the consultants you spoke to could say with conviction that the op will be successful.

What should you be hoping for in 5-7 weeks' time?

- PSA <0.1

- negative margins

- adenocarcinoma

- no evidence of extra-prostatic involvement apart from the already identified seminal vesicles

You will also want to know whether they were able to save any of the nerve bundles.

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

User
Posted 31 Dec 2020 at 14:34
Yes, I wasn't saying you were wrong to go for the op - just observing that the nurse's comment that they wouldn't normally operate at your PSA level needs to be seen in the wider context ... there's a whole number of reasons why you don't fall into the 'normal' surgery group. As long as you had a full understanding that the op may not get it all and you may need salvage RT / HT you had little choice - it is a brave (& possibly foolhardy) man who goes against the unequivocal advice of a team of experts.

It is my observation that problems tend to develop where the man was misled or didn't fully understand that the surgery might not be successful, or where urologists downplay the risk of side effects and overblow their own abilities. Realism is a great emotional security blanket.

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

User
Posted 02 Jan 2021 at 23:33

Originally Posted by: Online Community Member
Hi,
I am having pains in the groin area around the perineum when I sit, although I am off the painkillers now (Yippee!😀)
And am wondering if I should take some Ibrubrophen to reduce the swelling, no doctors or clinic available till next week.

 

I was advised to take painkillers if it helped me to keep mobile. Walking is good. If your catheter bag fills with pinky or red fluid, you're doing too much. Also - don't sit for too long in one position.

No harm in taking some ibuprofen but you shouldn't take it on an empty stomach. 

Having a catheter out should not be painful. Don't worry about it. It's an odd sensation but very quick and not painful.
The TWoC procedure will vary depending on where you are and the local COVID response. Some places they will take it out and send you home with a phone number to call in case of (rare) issues. Other places they will want to monitor you for a while (usually ~3 wees).

Edited by member 02 Jan 2021 at 23:34  | Reason: Not specified

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 11 Jan 2021 at 09:00
Found out my immediate neighbour had bladder cancer and prostate cancer 18 months ago, that makes 11 people who I now know have had treatment for or are undergoing treatment for prostate cancer. I knew none of this 3 months ago. It is too common, is there research into a preventative treatment?

Recovery continuing, I don’t leak every time I move now; which is an improvement.😀 But getting fed up with the pads (Tena 2), anyone any suggestions to avoid “Boiled eggs”?

What’s the best alternative to normal tea (That doesn’t taste like wee) as I think I need to try and cut out the caffeine?

Buzzy

Show Most Thanked Posts
User
Posted 29 Nov 2020 at 23:31

David,

It's too early to make any assumptions about available treatments. You need to wait for your test results to come back.

Your MRI score is probably PIRADS, but it's normally a single number between 1 and 5, so not sure what the 5/5 is.

Have they given you a staging yet, which will look something like T2cN0M0 ?
Do you know the outcome of the bone scan?

The biopsy results typically take about 3 weeks to get back to you. They might give you treatment options then, or may want to do some more scans before deciding what treatments are available to you.

Sorry, but you just have to sit out this diagnosis period, it's very anxious I know, and I was same age as you when I was diagnosed.

User
Posted 29 Nov 2020 at 23:55
Thanks Andy,

It’s all very surreal at the moment!

Yes correct it’s PIRADS 5/5 is what’s on the summary. Had MRI with contrast in a shiny new MRI.

The bone scan was clear though.😀

Various sources say it’s a high value contrast on the image so it’s a high certainty “it’s something..”

The biopsy was an experience and will give actual value to the diagnosis of “It’s a lump of some kind.”

The “Why me?” and “Is this real” thoughts keep popping into my head followed by “Bugger..”

The PSA reading is worrisome as most posts on here don’t even say they have moderate double digit figures, mine is over 24.

Have a phone call booked with results in 2 weeks, and I suspect I can’t delay my treatment decision if offered from the look of the numbers and conversations I have had thus far.

Knowing something is happening but not what grade, only leaves me drawing my own conclusions. Yes I need to wait but so far there’s not much good news about at the moment.. 2020 sucks.

David

User
Posted 30 Nov 2020 at 00:47

The PSA reading is only one of many factors. Mine was 58.

Some prostate cancer cell mutations produce lots of extra PSA, and others don't. It doesn't have a lot to do with aggressiveness (some very aggressive cancers don't produce much or any extra PSA at all).

You don't need to make up your mind on the spot - you can ask for time to consider the options and to talk with the various specialist clinicians, and with people who've been through each of the options you are given. Even for aggressive prostate cancers, a month isn't going to make much difference. There are drugs to pause the cancer if necessary - these have been used a lot during COVID when procedures had to be delayed.

I remember the "Why me?", and "Bugger", and "life will never be the same again" feelings early on. It's difficult to say much until you have your full diagnosis and you just have to stick out the wait. After that, you will probably have treatment choices and that marks starting to take back control of your life.

Edited by member 30 Nov 2020 at 00:49  | Reason: Not specified

User
Posted 30 Nov 2020 at 16:04

Sorry you find yourself here Buzzy. As others have said it’s best to wait for the biopsy results and then you can properly look at options. It’s good the bone scan was clear.
You’ll get lots of support and advice here.

Ido4

User
Posted 30 Nov 2020 at 20:44
Thanks All,

Ironically I feel a bit better after having chunks removed from my anatomy..

Will await my results and see what they are and try not to google too much.

David

User
Posted 08 Dec 2020 at 08:51
Hi,

Just a note to say thank you to Andy62 for the telephone call yesterday, I feel greatly more informed and understand a lot more about the tests and issues surrounding this disease. I get my results on Thursday (unfortunately/hopefully) and now I have some chance of understanding them and the treatment options.

Thanks for the support all.

David

User
Posted 08 Dec 2020 at 09:14

You're very welcome Buzzy.

User
Posted 08 Dec 2020 at 13:08

Hope things go OK on Thursday. It is a very stressful time and I remember the stages of the diagnosis well!!!!

Once you know the staging and the Gleason score you will have a far clearer picture of what you are dealing with.

Good luck

User
Posted 10 Dec 2020 at 16:50
Hi,

Unfortunately got results today :-(

Prostate cancer, T3b ( Left hand side of prostate including left seminal vesticle)

Grade group 3, Locally advanced.

11 out of 16 cores had grade type 4 in them.

This means a Gleason score of 7 (4+3) High end of scale.

MDT recommendation is Surgery after a CT scan that is being arranged possibly next week.

Derriford don’t do low dose Bracia Therapy, Exeter do High Rate but the decision of the MDT is that wouldn’t be suitable for me.

Looks like next year is going to be off to the same rubbish start as 2020. :-(

David

User
Posted 10 Dec 2020 at 17:13

Sorry to hear that its not good news.

Have they given you any more detail on the surgery? Have they indicated whether its likely to be nerve sparing and whether you are likely to need any further treatment afterwards.?

Has RT been suggested?

 

Worth taking a bit of time to understand all of your options and any potential side effects

User
Posted 11 Dec 2020 at 00:16
Hi Mike,

Thank you for the reply.

I had a 1/2hr chat on the phone and an appointment in 10 days to see consultant, no other info.☹️

A CT scan at some point soon, and hopefully some more information on exactly what I have.

The seminal vesticle involvement I wasn’t expecting, and that shows to me it’s progressive.☹️☹️

I only hope Surgery is possible as the other routes for me down here are logistically difficult and that’s not with COVID!

From the discussion with the specialist Nurse the MDT recommendation is surgery, no other offers made.

I feel unqualified to disagree with a panel of experts however I will ask.

The outcomes are apparently similar, and both carry risk; the best alternative is not to have PC; and as that boat has sailed I am stuck with the Paradox of having to make a timely life affecting decision with poor technical understanding of the implications for my Quality of Life. I have to Trust those who have the knowledge and understanding I don’t.

I really don’t like it, but the reality is by the time I gain that understanding of all the options it will be too late to treat?

A Steep learning curve?...More like a Tsunami...With all the life threatening implications...

Bugger!

David

P.S statistically do “David’s” outnumber all the other posters? 😋

User
Posted 11 Dec 2020 at 07:29

Buzzy,

There will be some others on here that can share more of their experiences and I'm no expert.....but

Quite some time after my diagnosis I opted to go the surgery route. I was T2 and was told there was a very good chance that nerves on both sides could be spared and that the chances of not needing further treatment were good. That surgery was 8 months ago and life has been pretty much back to normal for the last few months. I wouldn't say QOL has been impacted in any significant way.

If I'd been told I would probably need treatment after surgery or nerves were unlikely to be spared I would have gone down the HT/RT route.

I have no direct experience of this but know people that have gone that route and they seem to have come through it very well.

So, just saying that it is worth fully understanding your options and outcomes before you make a decision. 

User
Posted 11 Dec 2020 at 19:18

Originally Posted by: Online Community Member
From the discussion with the specialist Nurse the MDT recommendation is surgery, no other offers made. I feel unqualified to disagree with a panel of experts however I will ask.

 

Hi Buzzy, what you said here is spot on. A panel of experts has looked at all your diagnostic data and made a recommendation - if their advice is that surgery is the way to go then I think it is really important that you trust their recommendation. The panel will have had data that we don't have here about your specific circumstances.  

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

User
Posted 12 Dec 2020 at 10:07

It's fine to accept the MDT's recommendation, but I would want to know why they're not offering radiotherapy, because I'm struggling to think of a reason. T3b does increase the risk of needing more treatment after prostatectomy.

The other thing is, if they don't do a treatment at the hospital (such as brachytherapy), they probably don't have a brachytherapy expert on their MDT. If there is some other treatment you would be interested in having, you can ask for a referral to a suitable expert at another hospital.

(One of my pet peeves is that patients often don't get considered for diagnosis procedures or treatments which the local hospital doesn't do.)

Edited by member 12 Dec 2020 at 10:10  | Reason: Not specified

User
Posted 13 Dec 2020 at 10:41

I was called Friday AM about a CT scan appointment, this arranged for Saturday AM and I am amazed at how fast things are moving, this has now been done! I have a consultants appointment on 22nd to discuss options.

The process has been moving quickly, and although I have been reading lots to answer my questions it is a lot to take onboard. Actual face to face contact (excluding masks) has been very limited which is unsettling, and I have to trust the judgement of the health professionals that are there to help me.

The consultant BAUS information is re-assuring, but I know more about my car mechanic than I do about anyone involved in this process. The Urology clinic seems to be a self contained marvel with some really nice and dedicated people working very hard on a high caseload; unfortunately reassuring in a really strange way if you think about it?

The NHS is pulling out all the stops it seems to get me through the system, for which I am very, very thankful for, (especially at the moment) but not being able to take anyone with me to consultations or being able to discuss what is going on without the inevitable pressure from the clock is getting stressful.

Bracia therapy would be a good option, but the impression from the specialist nurse I spoke to is “my cancer”, (there said it for the first time ☹️)  is probably not staying put? That means I am on the cusp of surgery not being an option, it depends on the CT results?

My preference is get the thing gone as soon as possible, as the “Magic” of radio therapy and precise chemical poisons fills me with dread, seen it in others and it is not nice.

Since the biopsy I think my symptoms have slightly improved, I wonder what proportion of my tumour was removed by jabbing needles in it? Slept all night without visiting plumbing outlets!

This is NEVER a club I wanted to join, but I really have been helped by reading others stories about their journeys through this cruddy part of life. THANK YOU all for sharing your experiences but I really wish none of us ever had to.

David

 

 

 

 

Edited by member 13 Dec 2020 at 10:42  | Reason: Not specified

User
Posted 19 Dec 2020 at 08:40

Well...
Went for CT scan last Saturday, and spoke to consultants P.A on Monday to say they should have results, I asked if I could have an appointment this week and not wait till 22nd. After a callback it was agreed that I could be fitted in to clinic on Friday 18th.

Clinic was busy, and I now know and understand the routine; watching people like myself walk in befuddled and bemused, get taken away and appear enrobed a while later. About 30 to 40 minutes later with a modified slow walk back into the dressing room and out shortly for tea and biscuits, with the same shocked expression that I think we all know.

The clinic is working hard and it seems efficiently and compassionately but there are too many people walking through the door, we must help the diagnostics and treatment of this horrid affliction.

After consultation it was explained that my issues are not suitable for any one treatment, and brachia therapy is not an option, Surgery has been recommended by the MDT as the issue is not confined to the capsule. After a discussion I have decided that as a date was made available for the 23rd I will have surgery and have a RP. There may not be the chance to spare the nerves due to the location of the parts of my “Infestation” by the cancer ☹️☹️☹️

The Christmas tree may well have something else hanging in it this year!

I first posted in the forum on 29th November and less than a month later I have made an informed decision VERY MUCH helped by the posts and posters on here, THANK YOU. The Prostate cancer UK website is a superb organ of information about the organ I think we all wish had never ever heard of?

For me how ever is just another step in dealing with this thing, catheters next, that is if the OP isn’t cancelled due to COVID....

Buzzy

 

 

Edited by member 19 Dec 2020 at 11:07  | Reason: Not specified

User
Posted 19 Dec 2020 at 13:54
Good luck on the 23rd. I don't think they are cancelling cancer ops, although things change area by area every day it seems. I know someone waiting for a kidney stone removal...it's been over a year :(

This will be a Christmas to,remember for sure.Take things easy after the op. Do as much as your body dictates. The catheter is a pain for sure and the bags are a nuisance but you get used to it and it's only for 10 days.

Start your pelvic floor exercises, if,you haven't already.

It will be over before you know it...well you'll sleep through the main event...and you will be back home in front of the telly. I wish I could say there will be something good to watch but if Christmas tv is anything like normal it will be dire.

User
Posted 19 Dec 2020 at 14:55

Best wishes for a smooth recovery. Hope it all goes well 🙏🏼🤞🏼

User
Posted 19 Dec 2020 at 20:49

I was diagnosed with T3a and Gleason 7 and had a prostatectomy in December 2016.  After the surgery, I was upgraded to T3b and Gleason 9.  My highest PSA before surgery was 7.9 but we seem to be in a fairly similar place apart from pre-op PSA.   I’ve needed radiotherapy and hormone therapy since.  PSA stable at <0.006.  I’ve no regrets.  If MDT is recommending surgery, based on my experience, I’d go for that.

User
Posted 19 Dec 2020 at 21:07
Good luck , and if they get it I hope you will be fine my friend. Meanwhile I feel I’m in tatters mentally and physically with everything else considered. But I’ve had a superb 5 1/2 yrs since surgery. There is light at the end of the tunnel if they sort it and then you help yourself after. Good luck ok

If life gives you lemons , then make lemonade

User
Posted 19 Dec 2020 at 21:54

Good luck for the 23rd. Hope all goes well.

Ido4

User
Posted 21 Dec 2020 at 00:12
Hi,

Thanks for the support, it is helping me; to those who have already been through this thank you. For without those threads I may have been more reticent to doing anything without more obvious signs. I still don’t have outward signs of the lurking inner troubles.

Still having “Is the right thing” thoughts though after reading the surgical permission form, not doing anything would be idiotic now I understand my situation. I am sad that anyone has to go through this.

At the beginning of October I had no idea I would be here, since then it’s been scary BUT the clear information here and personal stories have helped me immensely, thanks for the openness. In the last week I have discovered, a senior colleague had an RP 10yrs ago, another colleague is having a test, and yesterday I found out a relative is awaiting an MRI for a high PSA.

Pelvic floor exercises underway..

This year is one rolled up cluster of nastiness, and the last few months I have been wishing away the days to the next appointment; need to regrow the positivity!

Buzzy

User
Posted 21 Dec 2020 at 07:50

Good luck for the 23rd and I hope you have a smooth recovery. 

Kev. 

User
Posted 22 Dec 2020 at 18:28
Good luck tomorrow Buzzy👍
User
Posted 24 Dec 2020 at 20:39
Well that was a fun 48hrs...

The NHS when it works well, really works well, and yesterday it really did that for me; I am grateful for that and all the attention I received during my operation from all the professionals I met.

I had two very experienced consultants operating and they did the best job I could have asked for. I am now home after my procedure with a few more holes and a better understanding of the cancer and the process of its removal. The operation I was told was “Difficult” and I was in theatre for over 4hrs.

I now have the additional plumbing installation that I already hate and about 2 weeks to enjoy it.

I will not know if I need further treatment until my PSA level can be measured in a few weeks, but at least I am home for Christmas with my family and the instigating organ has been removed.

I wish that all the members of this online community have a good Christmas, and a PC free new year.

Buzzy

User
Posted 24 Dec 2020 at 22:07

Hi buzzy, happy Christmas, I guess. I'm impressed at how fast you have been treated, well done NHS. I don't know how much you intend drinking over Christmas, but I found the main advantage of the catheter and bag was not having to get up in the middle of the night for a pee. Every cloud has a silver lining. 

Dave

User
Posted 24 Dec 2020 at 22:19

Great to see you on the other side of your op. I hated the catheter but time flies and it'll soon be out. 

Have a great Christmas and smooth recovery. *raises glass*

Cheers, Kev.

User
Posted 24 Dec 2020 at 22:30
Best of luck Buzzy!

If life gives you lemons , then make lemonade

User
Posted 25 Dec 2020 at 15:41
Christmas Day,

What a weird day, spent most of it finding out how to manage the Catheter and how to wear it; “Cowboy” (Thigh) or “Secret agent” style ? (Shin) Also amazed at the bodies ability to produce mucus on demand...( Too much detail?) I can’t wait for it to be removed already!

Epiglottis is a mess due to surgery yesterday, permanently feeing it in my throat, Family being great despite my desire to nip at no notice to return dirigible quantities of CO2 and methane back to the atmosphere! No Farts are NOT trustworthy creatures at this stage.

Noticed some beverages appear same leaving as arriving in the body, must try more complex fluids like beer for scientific reasons.

Who would have thought a good Christmas present would be something someone else had taken away?

Buzzy

User
Posted 25 Dec 2020 at 16:30

I liked secret agent style. Go out for a walk in the park, notice the bag is near full, pretend you're tieing your shoe lace, surreptitiously open the valve, then off you walk. No looking for public toilets or sneaking into McDonald's. 

Dave

User
Posted 26 Dec 2020 at 11:43
Onwards and upwards Buzzy....

OH was secret agent as well, it's a bit more convenient. You will get into a routine with the catheter and time passes quite quickly and before you,know it, it's 'out' day. It's a good day.

Keep yourself moving as much as your body lets you. Walks round the garden turn into walks down the road and so on.

Take care

LW

User
Posted 26 Dec 2020 at 20:46

Originally Posted by: Online Community Member
Christmas Day,
What a weird day, spent most of it finding out how to manage the Catheter and how to wear it; “Cowboy” (Thigh) or “Secret agent” style ? (Shin) 

Secret agent style for the win...

https://youtu.be/VncH-WYbcS4 

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 28 Dec 2020 at 00:23
So much stuff to take in sometimes, the bit about catheters getting blocked by clots and passing blood after 4 days with no issues I had today....leg bag blocked and learned new plumbing skills...thank the laws of physics... as everything shut today it seems.

Sorted after a bit of panic but feeling better now gut swelling receding and changing to bruises.

I have a routine now that helps, there has to be a better design bag system!

Buzzy

User
Posted 28 Dec 2020 at 00:30

😀😀😀😀

That made me laugh thanks!

The straps are rubbish though and the bags I have have poorly designed valves, Wine bag...

Hmmmmm? That’s a thought?

Buzzy

 

User
Posted 28 Dec 2020 at 09:52

Originally Posted by: Online Community Member

😀😀😀😀

That made me laugh thanks!

The straps are rubbish though and the bags I have have poorly designed valves, Wine bag...

Hmmmmm? That’s a thought?

Buzzy

I have a few of the large overnight bags left that I offered to my son (med student) as wine containers. If they were allowed to have parties, I think it would be very funny to serve wine from one. 

With catheters, I think the most important thing is to keep it REALLY clean to avoid infection. I used the shower attachment, standing up in the bath. Made the mistake of trying soap once. (Something you only do once - it stung the urethra quite sharply.) My instructions said clean the catheter every time you have a bowel movement.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 28 Dec 2020 at 12:09

Unfortunately hospitals issue what they have got , not what is best. By the time most of you get it sorted the Catheter will be out. 

Thanks Chris

User
Posted 28 Dec 2020 at 23:36
Catheter hints and tips...In the morning I will not...

A) Leave leg bag valve open after decoupling night bag.

B) Don’t point coiled hose at face after the above.

C) Don’t squeeze full night bag when trying to tear off the drain tab over the loo.

D) Try not to drop coiled hose on floor after tearing off the drain tab.

Oh what fun!

Buzzy

User
Posted 29 Dec 2020 at 10:56

It’s a steep learning curve! 😅

Ido4

User
Posted 29 Dec 2020 at 13:57

Wishing you a smooth recovery Buzzy. Was my husband’s 5 month post op ‘anniversary’ on Sunday.

User
Posted 30 Dec 2020 at 13:14
One week post surgery and feeing a bit more normal, pain killers much reduced now but odd twinges from places I haven’t had aches from before. Have modified catheter straps so they work now with old belt, whoever designed this abomination didn’t have to use it I suspect and didn’t understand gravity?

Is there a good primer on post-op PSA please?

From what I understand, “Zero isn’t Zero”, it depends on where you are in the country how it is measured and how remission is defined?

Some Cancer cells produce more PSA than others...?

So one residual cell site of a high PSA form may produce more PSA than 100’s of cells in many locations of a different type of Cancer cell? So one patient may trigger further treatment with a single site in the prostate bed, where another may have a wider issue with more sites?

A PSA of 0.1 is a statistical inevitability with measurements of any scale, it is effectively a measurement of uncertainty and not any form of accurate measurement in any system ( ie it’s generally in the uncertainty/noise of the equipment you are using) True one NHS trust can tell you you have a PSA of 0.01 ng/ml and not 0.1 but the treatment threshold is the same? 0.1ng/ml?

The high sensitivity measurements stated by some appear of dubious value it seems and give no better information, other than it’s going up towards the point where you will need treatment; another patient won’t know until their PSA is 0.2. Not very good is it?

Is PSA a good enough measurement post OP to define a treatment threshold, and is there any other way of detecting residual prostate cancer cells ?

Buzzy

User
Posted 30 Dec 2020 at 15:42

Thanks to all for the moral support it has really helped me not feel that I am on my own with this F’ing thing.

Have a Good new year.

Buzzy

 

User
Posted 30 Dec 2020 at 17:26

Hi Buzzy,

I haven't seen a good primer on PSA - it can be quite complicated.

“Zero isn’t Zero” - there are two aspects of this, the lowest that any test can measure, and that there are other sources of PSA in the body, albeit tiny, be even women have measurable PSA levels on the most sensitive tests. You'll see references to "undetectable" but I consider this term useless, because what's detectable on one tester won't be on another using a different model or assay, so undetectable has no uniform meaning. Each tester/assay has a minimum value it can measure. Some common ones are:
0.1
0.01
0.003
If you are below the minimum for that tester/assay combination, you will be given <0.1, <0.01, or <0.003 (for the three examples above).

The lab at my local hospital measures down to 0.01.
The lab at my radiotherapy hospital measures down to 0.1, but that's not good enough for prostatectomy patients and their samples have to be sent to one of the central London hospitals which does down to 0.003 although 0.01 is regarded as good enough in this case.
Another hospital linked with a support group I run does prostatectomy patients down to 0.003, and all others down to 0.1.

Different cancer cell mutations produce different amounts of excess PSA. You might get a rough idea in your case from what your initial PSA at diagnosis was, and the extent of the cancer. If you've had prostate cancer a long time, you will probably have multiple different mutations among the cancer cells, and their PSA levels may be different. About 15% of prostate cancers don't produce any extra PSA, and those can be more difficult to pick up in the early stages.

What tends to be more useful is to look at the rate of change of PSA than the absolute numbers, when monitoring for progression. You're looking for stable numbers, rather than increasing numbers, but to be low is good too.

For protatectomy, ideally your surgeon will want you to be well below 0.1. Three consecutive increases above 0.1 or hitting 0.2 are the usual triggers for further investigation, although the investigation doesn't necessarily happen at that point - often they need higher levels to initiate some types of investigation.

However, this isn't driven entirely by PSA. Histology factors in too. Sometimes they will know from the histology they left some behind, and if this is cancerous and aggressive, they may initiate further treatment sooner. Sometimes some prostate cells are left which are not thought to be cancerous (nerve sparing can do this), and these will give a higher background PSA level, but that is expected to remain stable and not increase.

The high accuracy PSA measurements can cause patient anxiety when the least significant digit bounces around, but an oncologist will understand this. These can be very useful when working out things like doubling times. One prostatectomy patient I spoke with who was being incorrectly given the low accuracy ones when his PSA was rising meant they couldn't immediately work out his double rate, which would normally have been important in selecting followup treatment. This was regarded as a medical mistake.

PSA is a much better tool for monitoring treatments than it is for initial diagnosis. It was indeed originally used for this, before anyone started using it for initial screening.

Wishing you the best result and all the best for 2021.

User
Posted 30 Dec 2020 at 19:01

Originally Posted by: Online Community Member
The lab at my radiotherapy hospital measures down to 0.1, but that's not good enough for prostatectomy patients and their samples have to be sent to one of the central London hospitals which does down to 0.003 although 0.01 is regarded as good enough in this case.

 

I am not sure whether it is just the way this bit has been worded but I disagree a little with what you have written here Andy. Who says that 0.1 isn't good enough? The decision was made at the national uro-oncology conference about three years ago that ultra-sensitive PSA testing was unreliable and that testing to 2dp or less was not recommended. As a result, a significant proportion of hospitals around the country changed their policy - including in the area where I live, a teaching hospital and one of the leading uro-oncology centres in the country. Spire and Nuffield in our area have also  withdrawn PSA testing to more than 1 dp. This means that for 8 of the nearly 11 years, John was getting his PSA reading to 2 or 3 places but for the last couple of years has only been able to get a 0.1 / <0.1 / 0.11 result. 

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

User
Posted 30 Dec 2020 at 19:04

Buzzy 

My post op letter said if my PSA broke the threshold of 0.1 I would be referred back to the consultant. This just meant I came back under the radar and PSA tests remained at three month intervals. The trigger for treatment options is generally 0.2 which can be considered to be BCR. Salvage treatment for me started at around 0.27. Your post op histology will also have a bearing on your post op outlook.  My hospital tests down to at least 0.03 and my consultant automatically retests any post op figure above 0.09. 

Having a more sensitive test meant I knew where I was heading at an early stage, and recurrence was not a surprise.

I visited the Christie in Manchester for some follow up treatment and only got one decimal point results. I would be interested to know what sensitivity post surgery patients get. A consultant there said he preferred a two decimal point test.

Stay positive, next hurdle will be your TWOC.

Thanks Chris

 

 

User
Posted 30 Dec 2020 at 20:16

Originally Posted by: Online Community Member
I am not sure whether it is just the way this bit has been worded but I disagree a little with what you have written here Andy. Who says that 0.1 isn't good enough?

All the consultants I work with (mostly urologists), plus my own oncologist.

If you don't have 2dp, you can't detect 3 consecutive rises between 0.1 and 0.2, one of the main criteria for biochemical recurrence.

The case of someone I was counseling, who went 0.1 to 0.2. The consultants couldn't tell if he'd gone
0.10
0.15
0.20
or
0.18
0.19
0.20

These two would have different treatment paths. It was immediately admitted he'd been accidentally given the wrong PSA tests for someone who'd had a prostatectomy (given the establishment had both available).

2dp is not required for radiotherapy patients.

Edited by member 30 Dec 2020 at 20:17  | Reason: Not specified

User
Posted 30 Dec 2020 at 20:24

I think this is just a simple misunderstanding then - there is no concern about the reliability of 2 decimal place readings above 0.1 - only below 0.1 has been discredited.

 

Above 0.1, two dp may also be useful for anyone on AS and is pretty important to anyone that has had salvage RT and is holding their breath. I rarely seen it used above 10 but Stan's PSA results were recorded as 17.8, 18.5, 22.5, etc while he was supposedly on AS (the only bit they did right, as it turned out 😥) 

Edited by member 30 Dec 2020 at 20:41  | Reason: Not specified

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

User
Posted 30 Dec 2020 at 23:10

Hi All, thank you.

In engineering even on logarithmic scales 0.1 “anything” is pretty meaningless as a measurement other than an indication, as measurement error and calibration errors in equipment are round up or down according to the manufacturer preference and user error. So 0.1 +/- 0.05 could actually be 0.51 rounded up or 0.149 rounded down.

Two patients to 1dp would both be presented as 0.1 by most labs as no change and still not trigger more treatment. None of the measurements presented anywhere state the measurement tolerance? +/- ? And reference to what level that is NOT zero?

As Andy points out it’s the trend that is important, and if this is the case than this needs to be a LOG scale measurement not a simple linear scale?

But If it’s the doubling of PSA that is important then a rise of 0.1 is important but if the previous level was 0.05 and the next as 0.1; how is anyone supposed to discern this has doubled if the measurement accuracy presented is 0.1 +/- 0.1 ? The same for goes for 0.1/0.2..

Using an engineering analogy by the time this moves to 0.2 from 0.01 (absolute) this is a log increase of over 12dB and has doubled four times before detection.

( Simply :- a doubling is 3dB on a scientific logarithmic scale widely used in science, there are various scales but all have a reference value that deliberately is NOT zero) A far more sensitive way of expressing meaningful doubling rates etc.

So from what very little I understand... is....

Because no one has a better measurement of post operative Cancer status, the PSA level is being used.

As a result the PSA measurement may actually be unable to actually detect single incremental changes or trends because it is unknown what anyone’s “Safe non threatening Background” PSA level is, and that it may naturally vary?

Because some Labs think they can measure PSA to 3dp they make the number important and not the relation to the previous measurement?

This infers some treatments are given that maybe unnecessary, and others are delayed due to measurement of an absolute number, with no available patient reference level(?) Rather than a trend that is obscured because not everyone is using the same scale or measurement accuracy/assay?

So if you have one instance of some slow growing PC cells producing lots of PSA you may get further treatment, before someone with multiple instances of low PSA emitting PC clusters and be in more need.

Is there no better way!?

On another topic how do you know PC has spread to your bones?

Buzzy

 

 

Edited by member 30 Dec 2020 at 23:16  | Reason: Not specified

User
Posted 30 Dec 2020 at 23:46
Sort of, except doubling time is also only reliable above 0.1. What can't be predicted pre-op is how much 'healthy' PSA your body will produce without a prostate.

John's PSA post op was 0.033, then 0.06 then 0.08 so it was obvious which way it was going (although there was then a drop back to 0.06) but we didn't go for salvage RT until there had been 3 rises above 0.1

Oncos and uros should have a good grasp of the tolerance range at their local lab and allow for this in their deliberations. For example, it is well known among medics in our area that the Harrogate infirmary lab tests higher than the Leeds THT lab; we have tested that out and the difference was 0.32 and 0.30 (one blood sample, two labs). John also had two blood samples drawn 1/2 hour apart tested at the same lab with two different results (0.1 and 0.086).

Oncos shouldn't take only PSA into account although my observation from here is that uros do rather too often (and not in a good way - some seem a bit too reluctant to acknowledge that the op may have been unsuccessful IMO) - there is also a wealth of data in the post-OP pathology to take into account. So Ulsterman had a post-OP PSA of 0.03 but poor pathology - he was referred for scans which identified active cancer in a lymph node. It was the pathology that made the PSA number significant.

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

User
Posted 30 Dec 2020 at 23:49
"This infers some treatments are given that maybe unnecessary, and others are delayed due to measurement of an absolute number, with no available patient reference level(?) Rather than a trend that is obscured because not everyone is using the same scale or measurement accuracy/assay?"

Unlikely because the universal threshold is still 0.2 OR three successive rises above 0.1 OR evidence of biochemical recurrence (from a PET scan, etc)

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

 
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