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That’s a bummer..

User
Posted 04 Mar 2021 at 21:09

Well...

A short recap, middle of October 2020 was a bit of a ride, diagnosed with prostate cancer, PSA 22.1, eventually told after biopsy it was a G7(4+3). So I opted for a RALP on 23rd December after PSA being measured at 24.5.

Enjoyed the benefits of the catheter over Christmas and new year, and was pad free by the end of January (Mostly). I have been feeling well and despite the COVID screwing things up, I thought I have managed to get to grips with prostate cancer, with the hope it was all under “control”..

I had clinic review today and was told my PSA test taken on Monday was 0.81, and the histology was upgraded for the “sample” to a positive margin, Gleason score 9 (4+5)....

I have been referred to the Oncology team for further treatment. Not the best of news, I was hoping for a smiley face and 0.01 result; but it was not to be... :-(

Onwards to the next bit....

User
Posted 09 Mar 2021 at 10:42

You can expect a PET scan, and the state-of-the-art one and most accurate is a PET-PSMA scan using the Gallium-68 radioactive isotope as a tracer. You’ll probably not be offered that as they are quite rare, but you can always ask.

If they find any of the New York baseball team lurking around inside you, the radiologist (Dan Dare) will have a better idea where to aim his ray-gun to kill the buggers!

I was advised by two friends not to have a TRUS biopsy, as they did, as afterwards had to have a more accurate transperineal biopsy. I did and they sampled 42 cores. I still had cancer though.

I suppose it’s much of a muchness now your tumour has been removed what grade it was, and hopefully now it’s just a matter of clearing up any stragglers who may have wandered into the outfield or into the bleachers!

Best of luck, as ever.

Cheers, John.

Edited by member 09 Mar 2021 at 10:50  | Reason: Not specified

User
Posted 09 Mar 2021 at 20:44
Exercise can raise testosterone by building muscle - but not all exercise is the same. Some things like weightlifting can cause long term testosterone increases but other exercise causes only a short term boost. Either way, exercise is not going to increase testosterone enough to affect prostate cancer - if that was the case, every newly diagnosed man would immediately be banned from running, cycling or going to the gym. The opposite is true - oncologists and urologists will impress on men with prostate cancer the importance of keeping fit and regular exercise, regardless of their staging or treatment pathway.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Apr 2021 at 10:00
We were told by our local PCa expert/ receptionist that our first pre op psa had come back as 3. It's fine she said, perfectly normal, go away and forget about it. Well yes 3 isn't high at all for 62 so I can cut her a bit of slack but thank goodness the Dr. wasn't so blasé. Even at psa 3 he had a small but aggressive tumour. But we did ' go away and forget about it' and were extremely happy until we were brought crashing back down again, which was possibly worse.

I feel the same when telling men to go,for a test. You could,prompt their lives tumbling like dominoes but I feel probably more strongly, that you could have saved their lives. Ignorance can be bliss but this crappy thing needs to be tackled early on or else the war will never be won.

Good luck with your scan, I have my fingers crossed for you

LW

User
Posted 03 Apr 2021 at 15:25

Sorry about the post op PSA. Are you just on the bicalutamide alone for 3 months or is it simply precaution against tumour flare from say a decapeptyl injection? Either way I don't think there's much advantage to what time you take it. It takes about 30 hours to reach peak concentration of the active R- isomer after a single dose. The half-life is at least a week so it really takes a long while to reach steady state levels. I'm on 150 mg whilst waiting for surgery to start up again locally.  Started feeling tired and woolly headed after about a week and the hot flushes started after a month (mainly at night). I take mine with a 20 mg tamoxifen chaser at about 8 pm daily.

User
Posted 03 Apr 2021 at 16:59
50mg/day bicalutimide is a low dose: I doubt you'll have much, if any, in the way of side effects from it. When it's used as a primary HT the normal dose is 150 mg/day. I was on that for 18 months.

Best wishes,

Chris

User
Posted 05 Apr 2021 at 23:57
The bicalutimide isn't suppressing your testosterone - it just disguises it so that the prostate cancer cells can't find it. The decapeptyl will stop production of your testosterone immediately when you are given the first injection.

So bicalutimide & decapeptyl have quite different side effects because they do quite different jobs.

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

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User
Posted 04 Mar 2021 at 22:52

Sorry to hear that. That they got you treated so fast in the first place is impressive. I guess HT followed by RT will be next. Fingers crossed. 

Dave

User
Posted 05 Mar 2021 at 00:21
With a post-op PSA so high, I would be reluctant to agree to HT / RT until they can demonstrate that there are remnants of cancer in the prostate bed or nearby lymph nodes. Generally, a post-op PSA that starts low and then rises is indicative of stray cells being left behind whereas a PSA that never goes low in the first place is more indicative of mets (including possible micromets). If you were my brother or partner, I would want you to have a decent quality scan first to see if anything can be spotted.

Did you have a bone scan before the op?

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

User
Posted 05 Mar 2021 at 07:03
Make sure you read my profile too as agree with Lyn. My post op psa was 1.5 and moving rapidly. They found lymph nodes cancerous whilst doing the op so it had already spread. For the next 4 years they nagged at me to have RT but I wanted out of the system. Each scan I had showed no recurrence anywhere .... until recently .... now all in bones and higher lymph’s. BUT no recurrence anywhere down below , even with a positive margin ! Make sure you get sound advice and good luck

If life gives you lemons , then make lemonade

User
Posted 05 Mar 2021 at 07:50

Thanks for the support, feeling pretty low at present, had hoped for better news.

The op I was told was “difficult” , and the picture I think showed the seminal invasion was advancing, the biopsy classed it as a G7(4+3) but it I suppose is difficult to get accurate results by jabbing needles in, in the hope you get the bad stuff...

If aliens did that to sample to earth chances are they would think we were all good natured fish?

The first thing I had in October was a full body scan, and that was negative thankfully; I have been told I need a PET scan and another PSA test before I get to the Oncology team, but with Covid that may not happen before I get there, that is if it’s a short wait...

The “Good” news is that if I hadn’t had the op on 23rd Dec, I probably wouldn’t have had the op at all by now, as all ops including most cancer ops were cancelled from then to start of Feb, the backlog is now kicking in and everything is maxed out trying to clear it.

Was told one prostate op was done in all of Feb.

Also the two lymph node samples were negative😀

I thought the “Mets” were a New York baseball team before all this started....

Thanks for the advice, it’s on a line with what I was thinking, as the first consultations said that “ With a PSA that high we usually don’t operate”. Not sure what to look out for? Is this going to make me paranoid about any aches and pains? ☹️☹️

Edited by member 05 Mar 2021 at 07:54  | Reason: Not specified

User
Posted 05 Mar 2021 at 11:54

Sorry to read this Buzzy. As Lyn and Chris have said it is necessary to get scans to see where any remaining cancer might be. I had a Gadolinium enhanced MRI followed by a PET scan which picked up recurrences in the prostate bed plus seminal vesicle remnants so I had those blasted by radiotherapy alongside hormone therapy.

 

Edited by member 07 Mar 2021 at 15:06  | Reason: Grammar

Ido4

User
Posted 05 Mar 2021 at 14:12

Sorry to hear this. We fully understand the disappointment. 
My husband required adjuvant RT following his RALP however that was for a PSA of 0.2.

Best wishes.

User
Posted 06 Mar 2021 at 17:32
Hi,

the 0.81 PSA I suppose was expected following the discussion with the consultants who kept saying the op was “ Difficult “ which I suppose was code for “ Bugger we know we didn’t get it all”... I did get that vibe throughout....

Reducing the PSA generator ( Prostate) and reducing the PSA malignancy by about 98% has got to be a positive, but the thought that there are cells still generating, dividing and spreading within isn’t the best of thoughts. I wish I understood biology a bit better and paid more attention during frog dissection...

If I understand correctly there are good and bad PSA generating cells, the “ good” ones generate small amounts of PSA and should have been removed when the lump was out; the “ Bad “ cells producing high amounts may still remain in tissue that was not removed?

I just hope it’s the prostate bed and seminal vesticles tissue remaining rather that’s generating the PSA than a fill blown smorgasbord of travelling cells that have moved on after finding their host organ is no longer there...

I really hate biology as it doesn’t come with a manual and the possibility of a firmware upgrade! 😀

Buzzy

User
Posted 06 Mar 2021 at 18:01
You are correct that there are good and bad cells generating PSA. Once the prostate is removed, that takes away most of the production line for the good and the bad PSA but PSA (prostate specific antigen) is a misnomer in that it isn't prostate specific and tiny amounts (between 0.0001 and 0.09) can be produced in other parts of the body. Professional cyclists have notably higher PSA levels than other men but seem to be at no increased risk of prostate cancer. Women can have PSA - breast milk can contain measurable amounts, for example.

A post-op PSA of 0.81 indicates that whatever has been left behind is rather active - a few stray cells in the prostate bed would have to be working very hard to produce that much PSA.

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

User
Posted 06 Mar 2021 at 19:28
I must admit that I'm quite surprised that they did operate with a PSA of 22. I was in a somewhat similar position to you: my PSA on diagnosis was 31, and this was felt to be anomalously high for the G3+4 that the biopsy found. In my case RT was strongly recommended, and it was "wide beam" RT to irradiate not only the prostate but also the surrounding lymph nodes.

I'm sure that salvage RT will "zap" whatever was left behind.

Very best wishes,

Chris

User
Posted 07 Mar 2021 at 08:06
I and two friends all had surgery about the same time, two and a half years ago, and they both had biochemical recurrence like you, requiring adjuvant radiotherapy. We are all doing fine now.

Another friend was diagnosed last year and opted for RT. He messaged me recently to say he had had the “all clear”, so best of luck!

Cheers, John.

User
Posted 08 Mar 2021 at 23:44
Hi,

Thank you for the comments it helps 😀

The “Vibe” throughout this horrid experience has been how my measured levels of PSA were at the high end from the start, and the revision upwards of my grade to G9. (4+5) from G7(3+4) from histology review, and now a high 0.81 level post OP...

The question I have buzzing in my head is “At what rate do these things grow if it’s a nasty bugger?”, i.e did it change from a G7 to a G9 in less than 2 months? As the biopsy took 16 cores and only 11 were positive with a max score of G7. The biopsy seemed very thorough.

Can the cells “ Change gear” in terms of their reproductive rate, now the moderating impulse from the prostate has been removed? So in effect are they like other cells, in that they try to re-establish their “Organ tissue” where ever they happen to be; but without any “ Parent organ” telling them not to do stuff and go to sleep?

It’s all quite fascinating in a “Watch it on TV sort of way”, except I am the wrong side of the glass!

Buzzy

User
Posted 09 Mar 2021 at 00:22

Originally Posted by: Online Community Member
Hi,

The question I have buzzing in my head is “At what rate do these things grow if it’s a nasty bugger?”, i.e did it change from a G7 to a G9 in less than 2 months? As the biopsy took 16 cores and only 11 were positive with a max score of G7. The biopsy seemed very thorough.


Buzzy

Prostate cancer cells don't tend to start off as a G3 and then move up the scale through 4 and 5; a man diagnosed with a G3+4 will still have a G3+4 when he dies, although the 4s are more aggressive so it could switch round to a G4+3 eventually. Upgrading post-op is not because your cancer morphed in 2 months; it is because the biopsy only picked up a tiny bit of the cancer and once they got the full gland under a microscope they found rather more than they were expecting. 16 cores is not thorough, it is a microscopic look at what might be going on. 

 

The migrated cells don't need the mother ship to survive and replicate; as long as they have some testosterone to feed on they will settle quite happily wherever they can. Adenocarcinoma tends to like bone or the lymphatic system but there are other types of prostate cancer that are attracted to the lungs, other soft organs and / or the brain. I assume that yours was found to be an adenocarcinoma as you haven't said otherwise? 

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

User
Posted 09 Mar 2021 at 09:28
Hi Lyn,

Yes I think so was stated on biopsy results I think as adrenacarcenoma.

It may be a daft question, if you do “ Sports, + heavy lifting or otherwise Manly things” 😋 does that generate or use more testosterone?

So in effect aggressive pursuits could be feeding your enemy, so to speak? And is testosterone at “A level” for a particular person, or does it go up any down?

So is sitting on the sofa “safer” than boxing with respect to testosterone use by the body, by not feeding tumours?

My biology understanding is totally swamped by these events!

So I should expect next:-

A PET scan (Not for hidden cats!)

Another PSA test

Then what?

I have read about the STAMPEADE trial, anyone been involved?

http://www.stampedetrial.org/participants/about-stampede/

Buzzy

User
Posted 09 Mar 2021 at 10:42

You can expect a PET scan, and the state-of-the-art one and most accurate is a PET-PSMA scan using the Gallium-68 radioactive isotope as a tracer. You’ll probably not be offered that as they are quite rare, but you can always ask.

If they find any of the New York baseball team lurking around inside you, the radiologist (Dan Dare) will have a better idea where to aim his ray-gun to kill the buggers!

I was advised by two friends not to have a TRUS biopsy, as they did, as afterwards had to have a more accurate transperineal biopsy. I did and they sampled 42 cores. I still had cancer though.

I suppose it’s much of a muchness now your tumour has been removed what grade it was, and hopefully now it’s just a matter of clearing up any stragglers who may have wandered into the outfield or into the bleachers!

Best of luck, as ever.

Cheers, John.

Edited by member 09 Mar 2021 at 10:50  | Reason: Not specified

User
Posted 09 Mar 2021 at 14:29
No, it's testosterone which helps you do "manly things", not vice versa. Testosterone allows you to develop the muscles to lift heavy weights. Lifting heavy weights doesn't generate testosterone 😁.

Best wishes,

Chris

User
Posted 09 Mar 2021 at 16:58
Lifting heavy weights does boost testosterone.

In fact many forms of exercise can raise testosterone but lifting heavy weights more so

Bri

User
Posted 09 Mar 2021 at 17:20
If that is indeed the case, I stand corrected! Thank you 🙂.

Chris

User
Posted 09 Mar 2021 at 20:44
Exercise can raise testosterone by building muscle - but not all exercise is the same. Some things like weightlifting can cause long term testosterone increases but other exercise causes only a short term boost. Either way, exercise is not going to increase testosterone enough to affect prostate cancer - if that was the case, every newly diagnosed man would immediately be banned from running, cycling or going to the gym. The opposite is true - oncologists and urologists will impress on men with prostate cancer the importance of keeping fit and regular exercise, regardless of their staging or treatment pathway.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Mar 2021 at 22:33
Lyn,

Thanks for the clarification, the thought that you are hastening the growth of PC by increasing your own testosterone with exercise was bugging me a bit! Lockdown and working from home has been good, as while recovering we have been going for good walks, however going back to work is stopping this. Must rearrange my QOL!

The STAMPEDE trial sounded quite positive for early stage advanced PC, I am awaiting appointment for PET and Oncology referral and will ask about my options then.

The thought of “ Flash Gordon Death rays” being used to target any remaining PC traces isn’t my main concern, it’s what it does to other parts of my anatomy that get in the firing line. Side effects of treatment causing other things to go wrong is a major concern with all this.

Buzzy

User
Posted 10 Mar 2021 at 10:01
RT does have side-effects, but in the vast majority of men they are short-term. In my own case I had bladder irritation, and passing mucus from the rear end. Bladder irritation cleared up within a few weeks of the end of RT. Bowel issues were slower to clear up, but were vastly improved within 6 months and essentially gone after a year.

Best wishes,

Chris

User
Posted 19 Mar 2021 at 08:21

Well I am joining the “PC Long haulers club”...☹️☹️☹️☹️

We went to see oncology consultant on Monday, and again discovered things I never wanted to know about my willy and friends..

I am booked for a shiny PET scan and after that IF the results are “ OK”, I will be on 50mg Bicalumide for three months with 3 monthly injections of Decapeptyl , following that 6 and 1/2 weeks of radio therapy of the prostate bed.

I also found myself thinking “How on earth can anything to associated with Prostate Cancer be considered as “OK”?”, but here I am about to be injected with something that sounds like it’s extracted from a dinosaur, and having my innards zapped with high dose radiation and thinking “Thank god at least I am getting treatment!”. And weirdly looking forward to it....

The consequences of an uncontrolled exploration of my lymph system by a stage 4 Prostate Cancer are not something I want to contemplate, I am truly sorry for all of you that are having to manage that.☹️

For me it’s only been about six months of this cr@p, and if I am really honest I knew 12 months ago something was going on and I ignored it; and here I am with a final diagnosis of a G9(4+5)...

Bugger

I Forgot to mention the “ Gift of 40 micro- enemas” to help things along, never seen such a regimented way of ensuring you have Sh1te before your treatment!

Edited by member 19 Mar 2021 at 09:14  | Reason: Not specified

User
Posted 19 Mar 2021 at 11:20

Here’s hoping the combination of HT and radiotherapy will destroy any remaining cancer Buzzy. The micro enemas are a blast lol! I remember them well. 

Ido4

User
Posted 02 Apr 2021 at 00:26
Hi,

After about 6 attempts of re-scheduling it due to national (?) manufacturing failures I was told; I finally had my PSMA PET scan today😀

Hopefully this will give me and the Oncology department some info about if my PC is anywhere it shouldn’t be...Er not that it should be anywhere at all....

My post OP PSA was a depressing 0.81 and when I phoned my local surgery after another test following the first Oncology visit for the result, I was told in no uncertain terms by the highly qualified “Receptionist-prostate-cancer-specialist-wannabe-doctor” that “It is very good” and nothing to worry about, it’s well below normal....”

I politely explained that it wasn’t very good at all and could she give my the latest result as that was the last one.., she then told me “3.5”, which was a shock.... I later found out that this was totally wrong this is the normal range sited on the form she was reading.

It has however risen to 1.0 .☹️

I suggest if you can, and your surgery supports it, register for the electronic patient access system. That way you can read all your historical records and consultants letters sent to and from your surgery, and get your latest test results. Not all the information is accurate though I noted. It will allow you to bypass the local “ Receptionist firewall” and see what they look at when you ring them....

So tomorrow I start my Bicalutamide 50mg HT, not looking forward to it, but I understand why I have to have it.

Any suggestions please as to the best time of day to take it?

Breakfast first thing, or leave it till nighttime?

Are there any benefits of dosing yourself up overnight Vis during the day?

3 months of this then Zapp!

On another note... someone I know had a PSA test after I spoke to them about it last Nov following my diagnosis; they have now had a Gleason(3+3) diagnosis.

Not sure how to feel about that, equally good and bad feelings about it...feel like I have screwed up their life too!

I so F’ing hate this thing!

Buzzy

User
Posted 02 Apr 2021 at 10:00
We were told by our local PCa expert/ receptionist that our first pre op psa had come back as 3. It's fine she said, perfectly normal, go away and forget about it. Well yes 3 isn't high at all for 62 so I can cut her a bit of slack but thank goodness the Dr. wasn't so blasé. Even at psa 3 he had a small but aggressive tumour. But we did ' go away and forget about it' and were extremely happy until we were brought crashing back down again, which was possibly worse.

I feel the same when telling men to go,for a test. You could,prompt their lives tumbling like dominoes but I feel probably more strongly, that you could have saved their lives. Ignorance can be bliss but this crappy thing needs to be tackled early on or else the war will never be won.

Good luck with your scan, I have my fingers crossed for you

LW

User
Posted 03 Apr 2021 at 15:25

Sorry about the post op PSA. Are you just on the bicalutamide alone for 3 months or is it simply precaution against tumour flare from say a decapeptyl injection? Either way I don't think there's much advantage to what time you take it. It takes about 30 hours to reach peak concentration of the active R- isomer after a single dose. The half-life is at least a week so it really takes a long while to reach steady state levels. I'm on 150 mg whilst waiting for surgery to start up again locally.  Started feeling tired and woolly headed after about a week and the hot flushes started after a month (mainly at night). I take mine with a 20 mg tamoxifen chaser at about 8 pm daily.

User
Posted 03 Apr 2021 at 16:59
50mg/day bicalutimide is a low dose: I doubt you'll have much, if any, in the way of side effects from it. When it's used as a primary HT the normal dose is 150 mg/day. I was on that for 18 months.

Best wishes,

Chris

User
Posted 05 Apr 2021 at 23:38

Thanks,

I am due to start dinosaur extract injections in about a week or so (Decapeptyl); and hopefully will get some results from the scan shortly. I am taking the 50mg dose in the morning working on the assumption I can deal with any issues in daytime rather than at night?

Not good with chemistry bit, so unsure exactly what is going on with the drugs, apart from it is suppressing the testosterone in my system, to starve the remaining cells lurking within.

Buzzy

User
Posted 05 Apr 2021 at 23:57
The bicalutimide isn't suppressing your testosterone - it just disguises it so that the prostate cancer cells can't find it. The decapeptyl will stop production of your testosterone immediately when you are given the first injection.

So bicalutimide & decapeptyl have quite different side effects because they do quite different jobs.

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

 
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