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Post RP and SRT journey - October meanderings

hewhositsoncushions
Posts: 367
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: 367
Joined: Mar 2017

Been wondering - is 0.07 for a first post SRT result with TRT back to normal a typical number?

 

Cheers

Georges Calvez
Posts: 468
Joined: Sep 2018

Hi H,,

It is pretty good as the limit of detection for the two PSA assays that I have used were <0.05 ( Architect Abbott chemiluminescence CMIA ( serum ) and <0.03 Cobas Roche electrochemiluminescence ECLIA sandwich (serum plasma) so you are close to the limit of detection.
Sometimes it does bounce around a bit or take a long time to decline as the last cancer cells drop dead.
You just have to wait and see what it does next! Hopefully it will stay stable, fall below the limit of detection and stay there.

Best wishes,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Yea that is what I hoped.

Kind of makes up for the fact that I finally ran the MSK nomograms for what I think are my numbers.

I got 75% chance of no progression at 6 years on the post SRT one which is good and 5 / 18 / 34% chance of looking skyward on the 5 / 10 / 15 life expectancy one with a very dodgy guess on DT which is less good.

I have been feeling in a vacuum of late and felt it better to know the possible futures as my onco never discussed these with me.

One has to hope that these figures are old and there is another ten years of advancement to look forward to.

H

Georges Calvez
Posts: 468
Joined: Sep 2018

Hi H,

I am prepared to give you a 100 % chance of not dying from prostate cancer in five years, even if it went wild tomorrow it would be controllable with ADT for several years, it will take several years to metastase to your vital organs, etc at the quickest. No way, barring a wayward bus, etc, you will be here in five years.
Ten years, pretty much 95%, even if it goes mad in a few years time, we can still hold it back for a long while.
Fifteen years, the crystal ball is a bit misty, check back on that one in 2023 or there abouts, something else might get you first! :-)

Best wishes,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

I appreciate the comments. I'm overthinking at the moment and feeling sad for my family. I've seen what end of life stuff can do and I dread putting them through that. I suspect I'll make sure that does not become an issue at the right time.

Onwards and upwards!

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

Cushions,

PSA=0.07 is quite low.  Thresholds for remission after surgery or SRT are at the range of <0.05 ng/ml, but there is no typical values representing something after ADT. Our system never returns to the previous status because of the estrogens that now play a role in our hormonal system. Estrogens substituted the Testosterone in certain functions while we were on castration. Now, even with T back to higher levels there will be always a role plaied by the estrogens. You may check its levels too.

In fact, Estrogens patches are typically used to improve patients status when on ADT.

We never know what is reserved for us in the future. Now is time for celebration instead of worring.

Best,

VG

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Cheers

I am going through an introspective phase at the moment as the suprise at a good number has worn off and I am processing worst case scenarios as is my rather annoying way.

I definitely need to live in the moment!

H

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

'....I'm going through an introspective phase....'

It is not a phase; it is the perpetual hewho.  Be OK with who you are. We all love ya. You do the same.

max

Georges Calvez
Posts: 468
Joined: Sep 2018

Hi Cushions,

You just have to try and get over it.
Your numbers are good, you have a very good chance of putting prostate cancer behind you.
Spring is here in northern France and I saw a young lady with a shapely bottom in painted on jeans today and I was in instant randy mode despite twelve months of degarelix.
Off to tickle up the old girl!

Best wishes,

Georges

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

Send photos if available.

hewhositsoncushions
Posts: 367
Joined: Mar 2017

You are right - it is starting to affect my wife so I need to nut up and shut up.

I see you are suffering the effect of "Springtime in Paris" down your necck of the woods :)

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Just realised it has been four months since my last test and I have not heard from the hospital. Time to ring them up and nag them.

When I realised it was due, my anxiety levels rose from "too busy to think about it" to "oh **** here we go again"

Found the letter. Had buried it in a pile of paperwork. Freud would probably explain why.

Test due this coming week.

Georges Calvez
Posts: 468
Joined: Sep 2018

Jumpin' Jeroboams Batman,

I have mine next week as well, I can go in when I like so I have picked Tuesday morning with the results Tuesday evening.
I am doing PSA, blood glucose, cholesterol, etc all at the same time, I have to schedule a conference with Dr Pooh later in the week to stock up on pills! :-)

Best of luck,

Christopher Robin

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Cheers

I know a few people due in the next week or so. Lets hope we all pass muster.

I am channeling Pooh and Piglet right now rather then Eyore :)

P

Georges Calvez
Posts: 468
Joined: Sep 2018

Hi there,

I went and gave some blood to the local vampires this morning, one of the senior biochemists did mine so no bruising, etc, I have had some bad jobs before.
Results at 17:00 ce soir.
Dr Pooh is on her hollies so I went and got an advance of a month on the pills at the local pharmacy.
Rum at the ready!

I am with Tigger in spirit,

Georges

Georges Calvez
Posts: 468
Joined: Sep 2018

Says it all really, champagne tonight!

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Eh Bien!

Zut Alors!

Mon Dieu!

D'Accord!

You are still on HT yes?

Georges Calvez
Posts: 468
Joined: Sep 2018

But I am thinking of jumping at the end of September, which will be my 19th injection including the induction double, if I score another below the limit of dectection.
Tigger is against this but I want my life back.
If I do this then by the end of January I will be running on fumes as far as degarelix is concerned.
It is hard to say what will happen after that.
Anyway I am still below the limit of detectability when Eeyore had me down for the dreaded castrate resistant cancer to be going rampant by now.
Now for the Côtes du Rhone and a cuddle!

Best of luck with your own private battle,

Georges

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

Cushions,

Let us know your results. I hope they fit your expectations.

Georges,

It is awesome to have a PSA at less than 0.05 ng/ml. Let's hope for continuous similar levels after the Firmagon. I think that your chemical castration is now at its 18 months mile stone. This is a long period so I recommend you to check the functionality of those organs that involve the production of hormones for our systems to work well. The typhoid and the Adrenal glands have been replacing the testis to certain extent. The liver, pancreas and the kidneys in particular could have been affected. Checking the creatinine at 24 hours and an ionogram is good to understand how far Firmagon has affected you, apart from the great benefit in controlling PCa.

ADT in my case assume some responsibility in the CKD case development. I detected its effects from the periodical test results (lipids, image studies and symptoms) I am doing since 2000. Diet influences much any situation.

Best to you both.

VG

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Last result - 0.07

This one - 0.05

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

Cushions,

Is it the first PSA (0.07) post ADT?

I wonder the level of the Testosterone. You should get a value to certify if the result is not masked by the HT influence.

Best,

VG

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Hey Vasco

Last HT jab (triptorelin) was early August 2018

RT was last week of August to last week of October 2018

First review post RT was end of Feb 2019 - PSA - 0.07, Test 14

This PSA early July was 0.05

Next ttest in four months

Bear in mind my PSA prior to HT was way down around 7 due to crap lifestyle so the first post RT review was at twice my legacy Test level and the PSA has dropped twice with higher Test levels.

My feelings are rather complex at the moment but generally complex.

H

Georges Calvez
Posts: 468
Joined: Sep 2018

Hi Cushions,

What is the testing method and the limit of detection?
My test results used to be less than < 0.03 ng/L Cobas Roche, they have now moved to < 0.05 ng/L Architect Abbott because they have changed the machine and the limits of detection.
The results are still effectively zero as if I have any PSA it is below the limit of detection.
You have to be careful with PSA test results as even doctors manage to extract nonsense from them.

Best wishes,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Hi Georges

We are never told the mechanism and I never ask. I know it is the same mechanism each time which is the main thing.

It is not supersensitive I know that, i.e. it goes 0.00 not 0.000.

Supersensitive appears to haved a bad rep now due to the error margin and variation.

My post RP results were 0.05 consecutively (which they considered a "pass" until it rose)

I have been told that anything less than 0.1 is a "pass".

I will bank that :)

 

Georges Calvez
Posts: 468
Joined: Sep 2018

Hi Cushions,

I think they are using a test that is accurate down to < 0.05 mg/L, that is their 'zero'.
I am not aware of a test that does give a zero value, maybe it is possible to adjust the limit of detection so that is a zero on the machine?
The whole field of PSA testing is fraught with difficulty.
I am friendly with one of the biologists down the laboratory that does my tests and I used to work in the field so I can have a chat with him if I feel like it!
Hopefully you are in remission and will stay there now.

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

Such tiny difference could be equipment noise. The next test will provide you a more realistic understanding of the situation. Remember that recurrence after SRT is considered only after three consecutive increases in tests done at least 4 weeks apart. Values need to be significant, not tiny as yours above. 

I recall guys 10 years ago going bananas for tests done in ultrasensitive assays (0.xxx) of low increases  and restarting treatment even with PSAs less than 0.1

Earlier attacks after failed RP and SRT has no significant survival periods. The majority use thresholds of PSA=5.0 to start a therapy.

Surely I am not referring to your case but just to inform how you should reasoning when using the PSA to evaluate your stance. 0.07 has little significance in a patient after salvage therapy. Common successes are those where the PSA fluctuate and maintains a sort of plateau in long periods.

Can I suggest we take this timing for a Guinness.

VG

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Vasco

I wonder if you misread this history as you make it sound a little negative.

Last HT - Aug 18 - RT Start Aug 18 - RT end Oct 18 - PSA test 1 Feb 19 0.07 / T test Feb 19 14 - PSA test 2 July 19 0.05

My T is higher than it has even been, both tests in the "pass and low" range and decreasing.

As you say, there is an error margin but I am a damn sight happier with a drop at this stage than an increase!

I will bank it and take the Guiness as you suggest :)

Georges Calvez
Posts: 468
Joined: Sep 2018

Hi Cushions,

I knew what you were talking about, you have a rising testosterone level and a falling PSA, I suspect that it is now below the level of sensitivity of the assay.
So there you are, take a Guinness.
It was 29 C here this afternoon, still bloody hot; so the wife is on the rosé and I am on the 1664!

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

Yes Cushions, I am sorry.

I misread your post. I didn't read your answer and thought the result being the other way. Well, the goody is that we enjoyed the beer. Shall we go for another round?

Congratulations.

VG

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Well I never managed the celebration earlier in the week so I had a double celebration last night and feel it this morning :)

Vive la Vie!

hewhositsoncushions
Posts: 367
Joined: Mar 2017

0.9 Up from 0.5  months ago.

Damn. I was looking forward to retirement. Probably won't happen.

hewhositsoncushions
Posts: 367
Joined: Mar 2017

I can't remember my own name. I rang back to confirm and it was 0.05 to 0.09. She did say there was a chance assay errors were in ay so the onco directive is three month testing and action "when or if" it reaches 1.0.

Georges Calvez
Posts: 468
Joined: Sep 2018

Hi Hew,

I would not get too stressed by that, PSA testing at that level is full of errors, it is still less than O.1.
Can you ask for a retest or pay for one yourself?
You still have every chance of making retirement and beyond even if it does come back.
Prostate cancer is seldom a killer and when it does it takes a long time in the vast majority of cases.

Best wishes,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Hi Georges

I think a retest would be too stressful ?

I will stick with the advice and wait three months. As you say room for error. Just gotta stay positive. Hope you are ok!

Georges Calvez
Posts: 468
Joined: Sep 2018

Hi there,

I am fine.
It is pouring it down here like rain is going out of fashion.
I am now five weeks from my last Firmagon injection so nothing much has changed yet.
Next test for PSA towards late middle December, it should be less than the limit of detection again.

Best wishes,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Anyone know if psa bounce is a thing for srt or is it just primary rt?

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

For prime RT and SRT in those with the gland in place.

I wonder the reason of your question. PSA= 0.09 is low and not an alarming threshold in SRT patients of failed RP. Consider values above 1.0 Ng/ml as significative.

VG 

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Thanks Vasco

I'm under incredible stress at the moment (had to quit a toxic job with none to go to) and I'm well in catastrophising mode.

It was the fact that it went 0.07, 0.05 and then 0.09 nearing detectable that got me. So I've seen people in this boat on this forum and others in a similar situation and they recur. I guess what I forget is we only see the ones who do so on forums and the many that don't just get on with their lives.

Thanks for giving me an objective view.

H

 

Georges Calvez
Posts: 468
Joined: Sep 2018

Hi Hew,

Anxiety is the most common symptom of a diagnosis or treatment for prostate cancer and in most cases it is not justified.
Of the men who are treated for prostate cancer the vast majority will die of other causes.
If you think of us as penguins standing on an ice floe waiting to jump into the water where a leopard seal may be lurking to gobble us up, then you are well to the back of the crowd.
Even people like me who are high risk have a 98% chance of reaching five years and an excellent chance of making ten.
Off hand I cannot think of a cancer that is less likely to kill you.
Eight weeks to Christmas, time to start worrying about that!

Best wishes,

Georges

Josephg
Posts: 231
Joined: Jan 2013

Hi Hew,

I agree with Georges that to the extent that you can, try to focus on other aspects of your life, versus continued churning over your PSA scores.  I know, much easier said, than done.

Your PSA munbers are very low now, with small changes currently taking place, not even in a consistent direction.

If you let PCa consume your entire consciousness, then you will miss many both current and future opportunities available to you in life.  Further, if you are consumed, then it is likely that others around you will also be consumed, thus reducing everybody's quality of life.

Again, I know, easier said than done.  However, I can personally tell you from my own experiences that focusing on other aspects of daily life and relationships with friends and family will dramatically improve your overall outlook on life, as well as reduce your current churning about your PCa.

Joe

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Hi all

I expect to get slapped for being a wuss but I'm getting odd feelings under my left arm and although I cannot feel anything lumpy I do worry. Logical brain says referred IBS feelings but wuss brain says OMFG lymph nodes! I would be right in sticking with my logical brain at this stage. Amirite?

Yours

Captain Wuss

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

Cushions,

Survivors tend to connect feelings with the cancer. That is naturally not a wuss behavior. In any case, the sensation may be a cause of an infection in your chest. Even a cold could generate such feeling. Worries due to other affairs may play the trick too. Have you bought already the Christmas presents? I worry with that at the moment.

Best wishes for a happy season.

VG

 

Josephg
Posts: 231
Joined: Jan 2013

It is natural to have these feelings, Hew, as a PCa survivor.  However, it could be any number of benign natural causes.  It could be as simple as a blocked skin perspiration pore, or it could be inverse psoriasis, which I am currently battling.

If it will make you feel better, go consult with your primary care physician.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

hewho,

I've had advanced Lymphoma, and have studied the disease for a decade now.   Your suspicion that a sensation in your armpit may be PCa that has reached that location makes no sense at all.  I'll explain a bit.

There are two ways lymph nodes may contain cancer: Lymphoma itself, either Hodgkin's or non-Hodgkin's type, or an organ cancer that is metastatic, via the lymphatic system.   PCa enters the lymphatic system via the so-called sentinel nodes, which are the nodes adjacent to the gland in the pelvic region.  When this occurs, the most common point of delivery for metastasis are:  (1) bone marrow; (2) the lungs; and (3) other organs.    To my knowledge, lymph nodes containing PCa cells do not ordinarily enlarge, or become tumors themselves; this is equally true of any other cancer that has entered the nodes.  They lymophatic system is basically a secondary circulation system, and the cancerous cells escape later into various other organs, which constitutes metastatic disease.    This "flow" is almost always contiguous, so the possibility of an enlarged node being PCa is very close to totally impossible: in part because PCa simply does not enlarge nodes, and how distant it is from your pelvis, given your extremely low PSA readings.

The "other" way nodes may enlarge is via lymphoma.  This spread can be contiguous or non-contiguous, and may create massive tumors.  My biopsy tumor was the size of a golf ball, and the surgeon said I had many others of about that size throughout my chest area.  ANY organ cancer in the lymphatic system is NOT lymphoma, of any form.  It is the organ cancer going on a joy ride, and it might jump off somewhere, and it might not.  But it will not create huge (palpable) tumors elsewhere in the body.  Inflamation and autoimmune conditions can also temporarily enlarge nodes, which is a completely normal part of living life.

I traced through this to reassure you that whatever you are feeling is virtually impossible to be PCa having spread.   Actually, your microscopic PSA results by themselves very nearly confirm no metastasis.   So down some Ale and enjoy the holidays.   

As always, share any concerns with your doctor, since also as always, we writing here claim no credientals of any form,

max 

Georges Calvez
Posts: 468
Joined: Sep 2018

Hi Captain Wuss,

This is prostate cancer, not the invasion of the bodysnatchers!
It kind of creeps along with a rising PSA a long time before you find a metastase.
Christmas Eve next Tuesday, time to crack on with things, aaargh
So splice the mainbrace, pour yourself a rum, steady in the ranks there, etc!

Happy Christmas And A Healthy New Year!!!!,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Cheers guys

Feeling low as unemployed just before Xmas and too much time to think.

I shall look to Xmas cheer and ale to spice things up.

H

Steve1961
Posts: 301
Joined: Dec 2017

everyday I kick my self for not having sirgery done ..I think about it over and over ..every time I urinate because I can’t empty my bladder  rverytime I have a bowel movement because it’s never normal now ..every night when I take flomax ..I hate that  crap .the capsule smells disgusting I can’t imagine what’s it’s doing to me ..PSA bounce ..my PSA is at 2   15 months after treatment .only 2 .in February it will be 18 months ..I hope it’s down to below 1 ..if not they may do another MRI or biopsy to see what’s up..great ..I also have a muscle disease distal spinal muscular atrophy a form of MD ..it came on around 42 years old .NO calf muscles at all ....I also have a hernia starting up andcarpal tunnel in my left wrist real bad ..right one as well ..I feel like I should be taken out to pasture and shot ..it really sucks ..all I can think of is if I ever need HT it will. Do me in ..I have a physical job and at the end of the day I’m wiped ..I can barely get off the couch ..I just wish I could get more than 6 hours of aleeep a night but I can’t ..I wake up and atart thinking and worrying ..it sucks I just can’t help it ..it’s hereditary from my moms side ..anxiety depresssion ,,sucks bad ..I hope and pray I get undectable sooner than later that will be the only way I can find peace ..GOD BLESS ALL OF US ..I always pray it seems to help 

 

Georges Calvez
Posts: 468
Joined: Sep 2018

Hi Hew,

My post was a bit tongue in cheek, it happens to us all.
My PSA was and I hope still is effectively zero but I occasionally worry that something is going on when I get a twinge!

Happy Christmas,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Next test in a few weeks. Am suprisingly detached but I think I have buried it rather than lost the fear.

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

Smile

Yes, it may be the case.

Quem sera sera 

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