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Post RP and SRT journey - oh joy

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Hi all

I thought I would start a fresh thread as things have changed dramatically.

My PSA has rised to 0.24 and I have now started HT (casodex with two three monthly injections of Triptorelin).

Back story.

PSA rose to 4.0 early last year.

Biopsy suggested G7 (4+3).

RP surgery (bilateral nerve sparing) confirmed the Gleason with staging marked as T2c, with 3% of organ marked as tumour.

PSA rose to 0.17 at the end of Feb and 0.24 at end of March. Total 7 months

Aww crap.

Saw the onco on Tuesday.

Quite direct, told me straight out I was going on HT (6 months) and RT (months 4 and 5).

Flatly refused to discuss PSADT / nomograms / outcomes / forecasts on the grounds that "every case is different". Basically "we will treat you and respond / react / change treatment according to your blood tests as and when". Told me no scans as it would be too small to detect and could never tell if local of spread. I worry that he is pessimistic but won't let on because my records note my anxiety.

Got given all the info about side effects which I already knew.

Basically I feel on a conveyor belt now.

Unfortunately I am a high functioning pessimist at the moment so I have written myself off given the early (ish) relapse and the (relatively short) PSADT.

I need someone to shout at me and tell me to stop being a worrier and get on with it.

Cushions

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Sqeaky bum time again.

Gave blood on Monday - results next Tuesday.

Been an awful stressful year with COVID, losing my mum and unemployment. Hope I at least get good numbers!

Josephg
Posts: 296
Joined: Jan 2013

I wish you the best of low numbers, Hew.

The same goes for me, as I have both a blood draw and a PET scan this coming Monday.  I hope that my PSA number is low, and that the PET scan actually finds something that can be attacked and killed.

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Cross fingers for both os us for this and for all you guys over there in this current crazy time.

Georges Calvez
Posts: 542
Joined: Sep 2018

Hello you two*,

Don't worry Hew, you will be fine.
Your recurrence was not serious and it was treated very early so the likelihood is that it is all gone.
I have developed a short term attitude to life, I just get on with it from day to day.
With my initial diagnosis I could be very ill, on extended ADT or even dead by now but I am not.
So happy days and pour the gin and tonic.
Current bad news is that the wife has started drinking my beer and the cat was licking the top of the bottle last night.
The good news is that we are moving to the country, I am hoping that the cat will transfer some of its toilet activities from the litter box to the garden.
I am planning on a good plot of perennials with bare earth in between that she can use for cat relief and add some fertiliser as well.

Best wishes,

Georges

* I have never heard anyone use this is outside The Archers where it is a frequent script device

VascodaGama's picture
VascodaGama
Posts: 3388
Joined: Nov 2010

Sorry to hear about the lost of your mum. I hope you get a PSA result that pleases you. In any case, the PSA never maintains exactly the same level if the result is above the assay's LLD. It may fluctuate with no particular meaning in tests done in short term intervals. You would need three constant increases to get a meaning.

Let's be careful with the Covid issue. Yesterday there were more than 10,000 positive cases confirmed in Portugal (a record) where testing is done in lower numbers. UK also reports a high number of newer daily cases. Let's protect our homes from possible invasion by the virus.

Best,

VGama

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Hi chaps

It's been hard to have the devil maycare attitude as I have had a lot happen to me in 2020 but I am trying take it one day at a time. The hardest thing is not having a job during a recession and pandemic and feeling like like I am leeching off my wonderful wife who has her job. That plus I hate the career and industry I am in with a passion. I think I may become a street sweeper just to keep away from paperwork and pressure.

Sadly I am off the booze although I may break that rule on the 20th Innocent

Stay safe!

Georges Calvez
Posts: 542
Joined: Sep 2018

Hi Hew,

Things can get a bit grim round here as well.
I try not to think about the long term prospects for myself. I had a pretty serious but very localised cancer. I may be cured but the balance of probabilities must be that I will have a recurrence. There may be long term effects from the surgery and radiation that may range from incontinence to all sorts of nasties.
So these are all things to keep in the dark hole of my mind.
My wife is not as fit as me, before I was ill I found looking after everything quite easy, now I have the after effects of my own illness to support as well.
On the brighter side we have a rate of 40 cases of COVID-19 per 100,000 people every seven days in our area, this compares well with the rate for all of France which is around 280 cases per 100,000 every seven days, needless to say there are black spots in the low thousands.
But the French are rolling out the vaccination program at a snail's pace of thousands per week, they have no sense of urgency at all, and the rate of COVID-19 is climbing slowly but inexorably with the idiots that supposedly govern the place resigned to a third lockdown with all that will entail.
Bloody amphibians; they think they are scientists and statesmen like Dalton and Napoleon when in reality they are drunken scribblers like Rabelais or worse.

Happy New Year,

Georges

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Feb 2019: 0.07

Jul 2019: 0.05

Nov 2019: 0.09

Feb 2020: 0.09

May 2020: 0.05

August 2020: 0.06

Jan 2021: 0.07

Next check 4 months, new machine coming in with undetectable < 0.025 instead of < 0.04.

Slightly unsettled.

Georges Calvez
Posts: 542
Joined: Sep 2018

Hi Hew,

I would not sweat myself about that, really it is not doing anything for the moment, it is probably machine rattle.
Give the wife a cuddle and try not to think about it.
PSA results are machine and analysis technique dependent, so it may change a little for good or ill with the next analysis.

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3388
Joined: Nov 2010

Cushions, 

Congratulations on the continuous remission.  I believe the result gave you some peace of mind.

Let's celebrate it.

VG Tongue Out

 

Old Salt
Posts: 820
Joined: Aug 2014

that those PSA data are just noisy and do not signify a trend.

Time to relax...

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Thanks folks. Was rather ill before Xmas and my confidence took a hell of a hit. I shall proceed as if I had a pair :)

hewhositsoncushions
Posts: 398
Joined: Mar 2017

My nurse was fine with a longer test gap but offered four months as I am a wuss. Do you think six months is safe as a test gap now?

Georges Calvez
Posts: 542
Joined: Sep 2018

Hi Cushions,

I would go with what you are comfortable with.
If it does not do anything in three months or four months then it will not do anything more in six months or twelve months.
It could recur but it is fairly unlikely, the chance of recurrence is something we all have to live with.
Watching it more intently will not make it not recur or vice versa.
Make yourself a nice cup of tea, light a candle, count your blessings.

Best wishes,

Georges

GeorgeG
Posts: 152
Joined: May 2017

I agree, such small variations on such small numbers don’t mean much. Your numbers and trend look good, I wish I had them. That said, I am happy for you. I know how hard it is but try to relax and celebrate days with no confirmed bad news. In the beginning you think that the hardest part is to master all the choices and research and maybe it is but eventually you realize that the biggest challenge is ignoring the “what if’s” and to enjoy all of the many good days. Generally speaking, PC is slow growing and treatable. Most of us have many years or even decades. If a man lives to be 85 he has a very high chance of dying with but not of PC. Many people live a Very long time with cancer, with modern testing and imaging many more of us know about it. The trick is to learn to make peace with it and ignore it if there is no bad news today. I always stretch my testing out to the limit that my doctor advises because it helps keep me relaxed and enjoying my good days.

 

None of us ever knows for sure what tomorrow brings but what we do know is that for now we get to carry on and if we can manage our fear of what could happen then we can enjoy it.

 

George

 

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Thanks George. I am mr Worry as you all know :)

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Next PSA test is due in three weeks as per the four month window I kind of fell into with the nurse. I'm right up to myh mecl in life at the moment and cannot be doing with the stress of the test so I am goinjg to ask to punt it to July which takes it to the 6 months which they originally offered in January.

 

Onwards and upwards.

Georges Calvez
Posts: 542
Joined: Sep 2018

Hi Hew,

I think I know how you feel, we are packing up to move, so the whole flat is full of boxes.
We are stuck in lock down, so it is like endless French Sundays with only a few shops open, not much traffic, etc.
Time off from packing is spent on local walks or watching TV.
Cattifluff is unaware of what is about to happen as she snoozes in the sun in her favourite window.
Next Tuesday, if all goes to plan, she will be plonked in her cat carrier and shipped off to a house, the evening should see her looking out over her garden.
There is an excellent chance that your tests are going to be OK and you are long term remission / cured.
I am still trying to adapt to the thought that I am on the other side, I am in remission and will probably live a long time, maybe another decade or two.
From that point of view I am one of the lucky ones, but at the same time I have to adapt to the new me, I have paid a price for the treatment.
We all have to try and look on the bright side, even though sometimes it seems pretty effectively hidden.
I am hoping for a good summer, no tests on the horizon until October.

Onwards and upwards,

Georges

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Good luck with the move. Hope it goes well!

The nurse was very pleased I asked for six monthly and has made the change, having confirmed there is no medical reason not to. I made it clear it was part of my sorting my head out and getting on with life.

Onwards and upwards to a good summer for all of us!

H

Georges Calvez
Posts: 542
Joined: Sep 2018

Hi Hew,

Good for you, I see that the dreaded COVID-19 is on the downturn in the UK so maybe you will snag a few pints in a beer garden, etc.
It is as dry as a dry thing here, blowing a gale and cold, but I have snagged a few bottles of Pimms for EUR 10 per bottle and when the summer arrives it will be Pimms on the terrace in the sun with baguette and tapenade faite maison.
We bought a rotary clothes line today, washing machine arrives tomorrow, fixed line internet instead of the current 4G fix Wednesday
Life must go on!

Best wishes for a good summer because you deserve it!,

Georges

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Hope life under global warming is treating you well.

Hopefully if nothing else, the rude awakening the leavers are getting right now over Brexit is causing you as much hiliarity as it is me.

Blood draw on Monday and call the week after. Beers either way once done.

Georges Calvez
Posts: 542
Joined: Sep 2018

Hi Cushions,

I have good and less good days.
Physically I have pretty much recovered, but it has affected me in terms of my spirit of optimism.
It is two months since we moved out of the apartment and into the house, there is still a lot of boxes around, we have an amazing amount of stuff and this has to be found homes.
We some serious furniture to buy to stow it all away.
The garden is pretty big, about 600 square metres and grassed over, it would be too kind to call it lawn.
At the moment it is getting mowed, but its days are numbered.
Cattifluff has gone from being an apartment cat, eat sleep, repeat, to having a garden to hunt in, cat neighbours to chase off, etc, a massive change at fifteen years of age!
Summer so far has been cool and rainy, unlike parts of the south of France, which are gripped by another drought.
Brittany is like a warmer version of Wales but with fewer sheep!
I reckon that your results will be good, you have a very good chance that there was only a small amount of localised spread and the radiation and ADT have finished it off.
Best of luck, but it is the can, so no worries!

Best wishes,

Georges

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Me too. My depression and and anxiety is a running battle. It is mostly that that causes my pessmisitic thinking. It is something I just have to endure. No one who has not had cancer can every understand the black dog it causes, however much they say they do.

It sounds to me like your garden is ripe for turning into a vegetable plot. It will attract birds which your cat can hunt :)

Weather here has been alternating between blazing sun and heavy, muggy rainstorms. Global warming proceeds as predicted, sadly. At least we are not in thge US or Canada.

We shall have to see what the next week or so brings. Hope for the best, ignore the rest :)

H

Bill91101
Posts: 77
Joined: Apr 2009

Georges, Glad the cat is adjusting to the new life! We’ve got two cats who only show up for meals. I think they’d really like being indoors in the air-conditioned house instead of outside in the Southern California heat wave. When I try suggesting it to them, they run away. Bill

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Our  next door's cat has adopted our garden to get away from the toddlers running happy rampage round his. It has put me in mind to get a cat again.

I am thinking of asking my nurses next week to just say "< 0.1" or "You are rubber ducked, sunshine" to get over my fear of the ups and downs of decimal places.

VascodaGama's picture
VascodaGama
Posts: 3388
Joined: Nov 2010

Yes, you are going to receive an "undetectable" report. In any case you may recall that 4 years ago you were close to the 4.0 mark and asymptomatic. 

I  am eager to celebrate again your results. After all I am allowed into a pub with my vaccine certificate. 

Best

VG

Georges Calvez
Posts: 542
Joined: Sep 2018

Hi there,

Your PSA is dancing around .07, which is close to the limit of detection of the old machine, it is also declining slightly.
It will be interesting to see if the new machine hands in the same results, PSA testing is notoriously dependent on analytical methods, standards and machines.
As long as it stays thereabouts I would not worry.
There is a lot worse stuff going on!
One of the neighbours came round tonight, she was having problems with her mobile phone, she had her pussy and a small dog in tow, both of them were spat and hissed at by mademoiselle, so much for the entente cordiale!
Cattifluff is a mate in a furry onesie; she cuddles up in the evening, walks round the garden with us, has chatty miaows, does turbo purrs if I scratch behind her ears, etc.
On the downside, she is fiercely territorial and will attack other cats, small dogs, foxes, etc that stray on her turf, she also kills anything small and killable if she finds it.
Bastille Day, Mercredi, get the vin in!

Best wishes,

Georges

Bill91101
Posts: 77
Joined: Apr 2009

PSA jitters on this end, too.
I’m getting a PSA blood draw done tomorrow. I’ve been on Lupron for the last six months. Even though I’ve had decent success with hormone treatments, I’m still worried about this blood test result. Somethings never change. I have allowed myself to be fairly trusting in the numbers (if they’re good). I’m thinking if I get a bad result this time around, I’ll be less accepting. I really like my urologist, but I’m we’ll see how the conversation goes if I balk at a ‘bad’ PSA number and decide to wait a month or two and get a second draw before going back on Lupron.
The Lupron Experience has been mixed for me. Worse than with Degarelix, Vanta or Zoldex. I felt lousy around the third month in: hot flashes, nausea and pain over a couple of weeks’ time. Slept okay. Not a lot of trouble since.
We had a problem with rats about a dozen years ago. The local housing market crashed about that time, and people left their homes and (too often) their cats behind. We (well, my wife and kids) were keeping an eye on about a dozen cats at one point. But (!) no rats.
The ranks of cats have thinned out since.
Reading the discussions on this site helps me enormously with coping.
Bill

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Feb 2019: 0.07

Jul 2019: 0.05

Nov 2019: 0.09

Feb 2020: 0.09

May 2020: 0.05

August 2020: 0.06

Jan 2021: 0.07

July 2021: <0.03 undetectable with new ulrasensitive assay - tests six monthly going forward

Thak you for keeping me on the straight and narrow.

Josephg
Posts: 296
Joined: Jan 2013

Great news Hew!

I will toast your great numbers tonight with a glass of red wine.

I wish you continued success on your PCa journey.

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Cheers Joseph.

I have to be up early so I will save my celebration for later in the week.

My profound relief is only matched by suprise at such a large drop into ulra sensitive undetectable.

One banks the successes and moves on.

Georges Calvez
Posts: 542
Joined: Sep 2018

Hi Hew,

I think you can give yourself a pat on the back and a wee dram of whatever you fancy for that.
It looks like you are in durable long term remission, a couple more like that and it will be really definite.

Best wishes,

Georges

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Hey Georges

I will certainly be doing that this weekend :)

I think you are right - such a drop was unprecedented and unexpected. I am going to work bloody hard to change my thinking to the positive outcome. I have six months to do so :)

Hope all is well where you are.

H

Bill91101
Posts: 77
Joined: Apr 2009

Good news, H
Glad to see the drop in PSA. I had to reread your results several times and thought ‘hey, that’s pretty good!’
Bill

hewhositsoncushions
Posts: 398
Joined: Mar 2017

It threw me as well. It was a huge drop and totally unexpected as I pessimistically expecting it to creep up.

Had my celebration last night and am feeling it now :)

VascodaGama's picture
VascodaGama
Posts: 3388
Joined: Nov 2010

I do not recall if we celebrated with Bitter last time but it doesn’t matter. I will pop-up one of my favorites red wine "Esporão" (world's best) and raise my glass to your success. 

Congratulations 

VG

hewhositsoncushions
Posts: 398
Joined: Mar 2017

It never rains.

A friend of mine spotted a small bump on my lip and said she is having a similar one removed as it may be a Basal Cell Carcinoma.

I now how the joys of getting a face to face appointment in our maxed out NHS.

Ding, ding, round 2, I hope not :(

Georges Calvez
Posts: 542
Joined: Sep 2018

Hi Hew,

I hoped that you were out of the woods and heading off into the sunlit uplands.
Hopefully you will have a good and quick experience with the NHS.
Things have been moving along in good and bad ways here, I will have to do an update soon.
PSA test on the 22nd of the month.
30 C today, cat was hiding indoors during the afternoon, she is now sprawled out under her favourite bush watching the sun go down, we are drinking Pimms and fizzy wine cocktails, barbecue later.
Thunderstorms, rain, etc later in the week.

Best wishes,

Georges

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Well I am seeing the GP face to face tomorrow. I had a clearing call today and sent in a photo. He reckons it is not BCC but tomorrow will confirm.

Since you have not had the test yet, I am hoping that the bad ways do not include your PCa status.

It is hot here and we are due rain soon - the elusive thunderstorms never arrive though :(

hewhositsoncushions
Posts: 398
Joined: Mar 2017

Turns out to be a venous lake. Unsightly but harmless. phew.

Georges Calvez
Posts: 542
Joined: Sep 2018

Hi Hew,

I scan read that as venomous lake, shades of Doom, 'arrgh no, he has fallen into the venomous lake!'
But no, you are OK to carry on tootling onwards.
I am OK, it is getting on for two years since my last shot of modified monkey glands, so I am feeling not bad.
All in all I am a bit creakier, but I am four years older, so it is to be expected.
My life is OK but maybe a bit boring; shopping, cooking, gardening, feed the birds, care for the wife and cat, etc.
Maybe I am suffering from middle class, middle-aged weltschmerz?

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3388
Joined: Nov 2010

Good to know that you are clean from BBC worries but I am surprised with the UK's NHS in attending you so early. Here it takes at least eight months to get an appointment with a specialist in the local NHS for a wartlike sore or skin related issue that could be cancerous. Covid19 has drained some of the personal from those medic departments (including all GPs) that have to deal now with those guys in quarantine. What used to be accepted as "next week"  it turned to be "next month". My GP introduced in the NHS system my request for a cataracts treatment 5 months ago but I am still waiting for a call from an ophthalmologist.

The problem is that the NHS services will deteriorate in the future. Portugal ranks third in the world with the highest percentage of graying population, heavily affecting the sources in the health sector. Apart from the local population, many retirees from other countries come to live here for the warmth and long sunshine periods.

Enjoy the results. 

VG

hewhositsoncushions
Posts: 398
Joined: Mar 2017

@george - hehe - that would confuse the GP! I envu you the boredom. We are both getting stressed about me not working. I have to find something my social anxiety will cope with. Even though we have savings, it is the reassurance of having a job.

 

@Vasco - luckily there was a GP with experience actingas locum to the surgery. He did a visual exam with the torchy lensy thing and was certain it was a venous lake. Usual caveat of "if it changes, come back". I think they are trying to triage such things at the surgery to avoid loading the hospitals.

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