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The not very secret Prostate Cancer Diary of Flygidz aged jolly nearly 60 Part 3 anyway

User
Posted 06 Apr 2023 at 13:43

Surprised to find that it's been over six months since my last entry. Frankly it's been six months I could have done without - First up Mrs Flygidz had her surgery to remove her benign tumour in early November. Sadly it dod not go well and she had a stroke during the procedure. She is making progress but it is long and slow....I've also discovered how many things she was doing around here - a s*** ton as it turns out!


As for me well that hasn't gone to plan either. Had my first post RP pow wow in mid November - it got rescheduled a couple of times. Unfortunately the blood test revealed that the magic undetectable PSA value was missed though pretty low. The initial histology confirmed the original diagnosis of Gleeson 4+3 and a T3a N0 (more of that later).  


At the time I was told fear not it may be just some residual we'll see what we get in January...(although the consultation was in November the blood sample was taken end of Oct). 


Meanwhile, on the continence front things continued to improve and by and large I only use pads as a safety net. There have been other changes on that front if I sink a few jars then it's wise to have a back up pad to hand - or drink fewer beers. 


On the erections front I'm still not in any kind of form but to be fair what will all the caring for my SS and housework stuff It hasn't been a priority...allied with the fact one side nerve bundle took a lot of punishment during the RP.


Of course against the background of Mrs Flygidz's recovery (she was released from hospital 10 days before Christmas) the holiday period came and went without us really noticing and before I knew it, it was time for the January bloods. More bad news PSA value still very low doubled. My case was then subject to a review the upshot of which was to hang fire on any further treatment decision until the result of the beginning of April test was known...but reading between the lines of the conversation with the Oncology Nurse at St Dicks it was fairly clear which way the wind was blowing.


Come to this week and the early April review - yup sort of as expected, the boil down is that the RP failed to do the job what's more they had further reviewed the histology and upgraded both the Gleeson and the T number to 9 and 4 respectively - made me think "how hard they look the first time?" The question is in part moot since it's about what's ahead - the immediate future is Salvage Nuking (with or without a side order of Hormones - that remains TBD) while they try and work out how significant the matastis is....


Health generally - I'm knackered much of the time but that may have more to do with working and the carer side of things than as symptom of illness - though notably even though knackered I don't sleep at all well, I haven't for months. I also have pain in the area of former bone breaks (I've had a few of those when I was young I was give to doing stupid things with bikes (motor and push), parachutes and so forth) but arguably they could be psychosomatic or a byproduct of fatigue...


To be honest the whole thing is getting a bit 'past it's sell by date". 


Couple of things I've noticed since diagnosis in July when you talk about PC you get the impression that people see it as rather 'common or garden' the Accrington Stanley of cancers if you will...paling into insignificance compared with rather more premier league varieties. That's not intended as a whinge more an observation. 

Edited by member 10 Aug 2023 at 08:21  | Reason: Not specified

User
Posted 12 Apr 2023 at 23:15

Fly, I had salvage RT without HT and was refused a PSMA scan. There was something in the bed because the PSA did drop for a while,but I have since had two recurrences and a second dose of SABR treatment has not eradicated the cancer. Like Peter I have advised people to have a scan before salvage RT, but mainly because I suffered some bladder damage from SRT. 


I posted a link to some research that suggested having SRT sooner rather than later gave better outcomes. I don't seem to understand the research papers.


Sorry to hear about your wife. 


Thanks Chris 

User
Posted 12 Apr 2023 at 23:46

I rooted out Chris's post and it basically says if you've one high risk factor it's better to have sRT before psa increases to 0.25.  


I also replied to Chris's post as that's where the paper is.

User
Posted 28 Apr 2023 at 10:49

Similar experience between NHS East Cheshire and NHS Stockport, now the Christie.


Have kept a file all thru this saga and upload copies of everything to Evergreen. Sick of delays whilst someone needs to request and receive data… its not the fault of the individual, but the systems are obsolete.

User
Posted 18 May 2023 at 14:21

Because my friend, nobody cares. You need to own it and chase every step of the way. And don’t expect that once you do get to a next step, that they will have all of your history or the relevant information. I barely get a three word response to emails to my Consultant, if he replies at all. As for the ‘Navigators’, forget it. Its depressing if you let it be. Chin up and strive on!

User
Posted 01 Jun 2023 at 18:36

Good stuff. Have my planning scan tomorrow, first session 11:30, 16th June. Daily microenema was news to me… but I guess being squeaky clean for a month won’t hurt.

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User
Posted 11 Apr 2023 at 23:01
My word you've been through the mill! Good luck with the next phase.

Sounds like you are doing pretty well with continence, and about average for EF. And I also got tired much more easily for a long time after surgery. Obviously very disappointing to find PSA still detectable and rising, it does sound like you need to face the new adventure of RT. Fingers crossed for you.

But having your wife's stroke on top of that must add a lot to tiredness and stress. I hope things are getting better on that score.
User
Posted 12 Apr 2023 at 18:42

Hi, 


It's surprising they re-did your psa and stage number.  It sounds a bit strange.


A better scan sounds like it might be needed.   A PSMA-PET scan, although it seems I'm obsessed with saying that to people.


You've certainly got a lot on and I hope your wife is recovering well. 


I'm a bit obsessed by numbers and would like to know all the psa readings and the dates they were done on.  It helps to give a feel of where you are.   It seems to me, and I'm no expert, that you're young enough, even if tired, to withstand some combination treatment which is stronger.   Although I read Chemo for PC isn't as onerous as for other types of cancer, but we're all different and it's easy to say.


I don't feel over impressed by your hospital and wonder if there is a better one not too far away, although that could be a difficult discussion and not one I'd relish.  I hope things work out for you both.


All the best,
Peter


 

User
Posted 12 Apr 2023 at 23:15

Fly, I had salvage RT without HT and was refused a PSMA scan. There was something in the bed because the PSA did drop for a while,but I have since had two recurrences and a second dose of SABR treatment has not eradicated the cancer. Like Peter I have advised people to have a scan before salvage RT, but mainly because I suffered some bladder damage from SRT. 


I posted a link to some research that suggested having SRT sooner rather than later gave better outcomes. I don't seem to understand the research papers.


Sorry to hear about your wife. 


Thanks Chris 

User
Posted 12 Apr 2023 at 23:46

I rooted out Chris's post and it basically says if you've one high risk factor it's better to have sRT before psa increases to 0.25.  


I also replied to Chris's post as that's where the paper is.

User
Posted 28 Apr 2023 at 10:37
Allrighty so had a chat with the oncology consultant yesterday and it's full steam ahead on the zapping plus hormones. The goal is to zap the bed, as well as lymph nodes and some other bits of the pelvis. The druggy bit should start fairly soon (as early as next week) with the injections (Zolodex) fairly quickly and zapping (33 sessions) before the end of May. Later Bisphonates may also come into play.

Picking up Peter's point I think the problem is the way the NHS is structured (I've seen it affecting the way my wife's treatment is going as well) We might assume that since we all have a unique NHS number that there is a central database from which any NHS facility can access results and data from any other Trust.

We'd be wrong as unbelievable as it might seem Inter Trust communications are poor. Now that would not be such a critical thing if all cases were managed within a trust but they aren't. In my case the Urology side (as well as testing and jabbing) is University Hospitals Sussex, the surgical element Royal Surrey Hospitals and oncology Portsmouth Hospitals University Trust...and none of them can access data directly from the other...They transmit only on a whim or request - example the I was talking to the OC about some test data relevant to what we were talking about and she said "ah they haven't sent me that...typical...- sigh - I'll have to get it from them there such a pain." As I say I've seen the same kind of thing earlier in my treatment as well as my wife's which is likewise Inter Trust. Communications wise it's something of an Omnishambles...

They speak of a "National" health Service...it isn't so...

My strong advice is invest in a wallet file get hard copies of every bit of test and other data you can and organise it so that at least one actor in the play has an awareness of what's going on...
User
Posted 28 Apr 2023 at 10:49

Similar experience between NHS East Cheshire and NHS Stockport, now the Christie.


Have kept a file all thru this saga and upload copies of everything to Evergreen. Sick of delays whilst someone needs to request and receive data… its not the fault of the individual, but the systems are obsolete.

User
Posted 18 May 2023 at 14:17

Today's irritation: Mindful that besides the whole C thing Like everyone else I have a number of other responsibilities I attempted to get a clear steer from the QA (local oncology nuking place) as to when I might expect my nuking to be (having been told two weeks ago - and a week after initial referral - that I'd get a schedule 'in the next week or two')...the critical part of the conversation (and it took a LONG time to get to this part) 

 



Me:....so you see I've got a lot of things to so juggle that's why it would be great to know when it's likely to get underway...



Her: We've got a backlog so I can't say you'll be sent a letter



Me: I understand that and I really don't care that much when it is going to be I'd just like some indication so that I can sort out my scheduling accordingly...



Her: Let me talk to my manager...



Her (some minutes later) It will be the end of June or the beginning of July....



Me: end June early July got it...



Her Unless.....



Me: unless what...



Her Unless it's sooner....



Me: I see, well that's helpful..(hangs up phone and screams) COCKWOMBLES!



 

And that my friends is another example of the systemic clusterf*** that is the NHS...If I went down to a car dealership and ordered a car...hell even before I ordered it I could be told probably to the, if not the day to the week when I could anticipate delivery...hell if I phoned up Bruno Even and said I'd like an H130 please he (or rather one of his minions) would bb able to tell me to the week in 2025 I could expect to have my new toy. So why is it that the that after three weeks from the press go I'm STILL no feckin' closer to finding out...

User
Posted 18 May 2023 at 14:21

Because my friend, nobody cares. You need to own it and chase every step of the way. And don’t expect that once you do get to a next step, that they will have all of your history or the relevant information. I barely get a three word response to emails to my Consultant, if he replies at all. As for the ‘Navigators’, forget it. Its depressing if you let it be. Chin up and strive on!

User
Posted 22 May 2023 at 13:05

Quite so Chippers (I'm so fully in mushroom mode I'd never even heard of 'navigators' and had to to look it up). You are, of course, absolutely right, one thing I found in the last year what with my issues and even more so those of my wife, there are those who talk a great game and those who actually will put their shoulders to the wheel - needless to say the former far out number the latter!

Edited by member 22 May 2023 at 13:16  | Reason: Not specified

User
Posted 01 Jun 2023 at 17:11
A little update: After a lot of badgering - including a snot o gram to the CEO of the Pompey University Hospital Trust as well as phoning up and generally making a nuisance of myself on Tuesday I was tipped the wink that kick off for the SRT phase would definitely be the last week of June/first week of July...then yesterday a phone call confirming planning scan etc on 12 June (followed up by the paperwork in the post today) yay! I say yay the dos and don't list is rather extensive (wot no whisky from now until the the treatment's over...harsh).
User
Posted 01 Jun 2023 at 18:36

Good stuff. Have my planning scan tomorrow, first session 11:30, 16th June. Daily microenema was news to me… but I guess being squeaky clean for a month won’t hurt.

User
Posted 02 Jun 2023 at 15:30
yep the daily micro enema that raised my eyebrows a bit!
User
Posted 02 Jun 2023 at 15:54

Didn't work today anyhow! And they could put a bit more creativity into the tattoos …

 
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