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Post RP and SRT journey - August 2020 update

User
Posted 29 Jan 2020 at 12:37
I’m literally EXHAUSTED with stress having to wait till 19th Feb for scan results to confirm advanced cancer to spine and lymph’s. I’ve been a right mess yet physically fine. I desperately don’t want to go on HT forever more

If life gives you lemons , then make lemonade
User
Posted 29 Jan 2020 at 17:00

The testing and waiting on results takes its toll. Fingers crossed for you PP and everyone else too.


Chris J, I feel for you, waiting is hell.

Ido4

User
Posted 09 Feb 2020 at 13:27
Stress levels have been very very high this week (eye twitches driving me mad) and had three day virus as well. Still no job. Life generally uphill on all counts with no end in sight (unless you count dying early). Suddently switched from stress and anxiety to feeling really really REALLY angry today. Test results tomorrow. Luckily the anger is keeping me from feeling sad.

Just needed to rant :(
User
Posted 09 Feb 2020 at 13:35
No problem mate. Rant away. Just try and contain the anger lol. I’m in the same boat. Scan results have been 4 weeks due to Xmas backlog. So I find out Feb 19th whether I am advanced with spine and tissue mets and on the downward slide towards the unknown. I just keep working and smiling and painting but I’m all fu**ed up inside tbh. Good luck

If life gives you lemons , then make lemonade
User
Posted 09 Feb 2020 at 15:12

Rant anytime you like. Sorry you’re feeling this way. 

Ido4

User
Posted 09 Feb 2020 at 19:14

Feel sure that when results of various tests approach, we all become a trifle tense as to what the outcome will be. It’s only natural so stop beating yourself up. I see my urologist tomorrow for my latest PSA result, and even though I attempt to disguise my concern with a smile, inside I am bubbling away like crazy. Truly hope your result(s) are positive for you.

User
Posted 09 Feb 2020 at 19:22
Thanks guys. I blew off a lot of steam and am feeling more steady now.
User
Posted 09 Feb 2020 at 20:28

Pete


Was expecting to get my result Friday, but not come through. Got telecon with one of the onco nurses on Wednesday, unusually had a bit of anxiety this time.


Finger's crossed for both of us.


Thanks Chris

User
Posted 10 Feb 2020 at 06:41

Good luck Chris. Keep Us posted

User
Posted 11 Feb 2020 at 11:56
0.09 - "very stable" the nurse said. Next test in three months.

Pheeeewwww!!!

Time for celebratory glass.

Thanks for all the kind words and may all your results be good!
User
Posted 11 Feb 2020 at 12:38

I’ll have a celebratory glass with you, too. Cheers! - because my PSA reading was considered undetectable when I saw my Urologist yesterday. We limp from one hospital visit to another so when we get good news it’s the best feeling one can have. Well done and best of luck to all the other guys who have test results to face soon.

User
Posted 11 Feb 2020 at 13:13

Glug glug 🥃 


That was for you and me 😂


Well done!


And good luck to everyone else!

Edited by member 11 Feb 2020 at 13:17  | Reason: Not specified

User
Posted 11 Feb 2020 at 13:58

Good result. Celebratory glass well deserved!

User
Posted 11 Feb 2020 at 14:11
I’ll have a hangover by teatime 😈😈😈😈
User
Posted 11 Feb 2020 at 14:37

Great result! Had my first post-op bloods today. Didn’t drink enough water so slow coming out 🤷🏼‍♂️🥴😂 Result Thursday so a bottle in the cooler either way 😛

User
Posted 11 Feb 2020 at 15:09
Great news mate. I don’t need any encouragement to raise a toast to you lol

If life gives you lemons , then make lemonade
User
Posted 11 Feb 2020 at 16:19

Fantastic news. So pleased for you. Cheers!

Ido4

User
Posted 11 Feb 2020 at 16:25

Pete


Great news, hope it continues.


Thanks Chris

User
Posted 11 Feb 2020 at 17:58
Yayyy
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 May 2020 at 11:06
Bloods today and call on Tuesday. What with the lockdown, family being stressed and my own negative self talk I’m in a bit of a dark place worrying about it rising and my life being cut short. Way too much time to think 😰
User
Posted 07 May 2020 at 12:18

Fingers crossed for a good result Pete.


Ange 

User
Posted 07 May 2020 at 13:57
Hope results good Pete. Mine were really bad but expected. My psa is so high now I never ever worry about it lol. I concentrate on all the other bloods to see if my organs and bones are ok , and make my decisions based on that. I’ve been in very very dark places too , and recently my excellent lady councillor of two years has decided to pack in totally which has caused me a real panic tbh. My call from Onco is on 15th and he is very on board with my decisions as is my GP. I’m hoping he won’t push me for HT and instead give me another 3 months for double scans and review.

If life gives you lemons , then make lemonade
User
Posted 12 May 2020 at 10:59

Hi all


Latest results: 0.05


History


Feb 2019: 0.07
Jul 2019: 0.05
Nov 2019: 0.09
Feb 2020: 0.09
April 2020: 0.05 Errata May


Nurse was pleased but seemed surprised at this large turn around. We both agreed it’s trend not numbers that counts but this looks good to bank.

Edited by member 18 Aug 2020 at 12:43  | Reason: Not specified

User
Posted 12 May 2020 at 11:17
Maybe you are just going to be like John with a naturally high benign PSA - nearly 8 years post SRT his PSA has ranged from 0.08 to 0.11 and then settled again at <0.1.

We did start to notice a pattern; the PSA is usually highest in August which immediately follows our month in France cycling, drinking red wine (him, not me) and cooking a lot of red meat on the BBQ (also him, not me). It would have been interesting to test this out again this Summer although in the current situation, we may not get the chance 😢
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 May 2020 at 12:54

Pete


Great news, bet she was glad to be the bearer of good news. 


Thanks Chris

User
Posted 12 May 2020 at 13:15

Great news to hear another good result for you Pete.


Ange

User
Posted 12 May 2020 at 15:53
Hi, Pete,

If you lived in the West Midlands near me all your results would have come back as <0.1, “undetectable”, which might have saved you some anguish.

Not saying an additional decimal place is right or wrong, but it saves me worrying, as my PSA is undetectable too.

Stay alert! Control the virus!

Cheers, John.
User
Posted 12 May 2020 at 16:31
Hi all

@Lynn - I think my great white whale is stress. I've worked hard to bring that under control. Why not replicate your holiday with exercise bikes and a BBQ in the garden!

@Chris and Spaniel - cheers!

@Bollinge - yes I do worry a lot about the numbers. I asked about sensitivity and they go down to 0.04 as measured and then >0.04. So I am effectively two points off of undectetable within undetectable :)

As my wife and son both said, time to stop moping and start living :)
User
Posted 12 May 2020 at 21:42

Fantastic news. Definitely time to start living. So pleased for you and your family.

Ido4

User
Posted 12 May 2020 at 23:20
Great news 👍
User
Posted 12 May 2020 at 23:32
Great stuff
User
Posted 18 Aug 2020 at 12:46
Feb 2019: 0.07

Jul 2019: 0.05

Nov 2019: 0.09

Feb 2020: 0.09

May 2020: 0.05

August 2020: 0.06

Have been told this is well within margin of error and can be considered stable. Was offered six monthly testing but said would think about it so three months for now.

What do you good people think about going to six months?
User
Posted 18 Aug 2020 at 13:11
Others may disagree but personally, I would stick with 3 monthly for at least another couple of years. John is 8 years past SRT and still has the 3 monthly test because it hovers just below or above 0.1.

I suppose the adjunct to that would be if the PSA test makes you very anxious in which case it might be better to only be anxious twice a year!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Aug 2020 at 13:17

That looks a really nice set of results. My treatment was HDR, EBRT, ADT and I'm only just coming off HT. My onco said "six months check, no point in stressing people out every three months". I don't think my PSA Test results will be very meaningful when you allow for RT/PSA bounce, coming off ADT . So it will probably take a year before my PSA settles down and three month checks would be all over the place at the moment.


Of course yours is more stable and any increase would be more meaningful as you have no prostate. If having tests less often means less anxiety go for six months, if your going to be anxious all the time because you think your PSA may be creeping up and no one is watching then three months.


 

Dave

User
Posted 18 Aug 2020 at 13:19
Hi Lynn

Thanks.

That is exactly the balancing act we talked about. I decided on three months because my gut led me there. This time I was only visibly stressed for two days as opposed to two weeks pre test. I think I’m either getting more used to it or more used to the fact that mortality is a lottery. I’ll need to work even harder not to show my fears as it does bother my wife and I can’t have that.

Still, 0.06 is at the very least not a bad result at this point in time, would you agree?
User
Posted 18 Aug 2020 at 13:28

Cheers Dave


I’m banking every three months as a free meal ticket as I get them 😂😂


The nurse said they do not do anything until a mans post SRT PSA goes above 0.2 but as you suggest, knowledge is power.


I’m getting more used to PSA anxiety and in many ways when I get the anger and fears in check it helps me understand my life and death journey a bit more. I’m not saying I relish a bumpy end but it gives me more of an appreciation of my own and others journey. Given I wrote a thesis on existential counselling for cancer patients it’s an ironic “eat your own dog food” thing going on here 😂😂

Edited by member 18 Aug 2020 at 13:29  | Reason: Not specified

User
Posted 18 Aug 2020 at 16:58

Great result. I would stick with three monthly for now.


Very pleased for you.

Ido4

User
Posted 18 Aug 2020 at 20:09
Hopefully it will only be one day panic next timw and zero days the next time after that 😂😂
User
Posted 18 Aug 2020 at 20:43

Great result. Have mine next week so kinda understand where your mindset is. I looked into getting a PCR machine for home but obtaining the test materials and bloods the tough bit 👀🤪


TG

User
Posted 18 Aug 2020 at 22:14

😂😂 You sound like you were planning to set up a crime lab like Abbie in NCIS 😂😂

User
Posted 18 Aug 2020 at 22:47

Not far off. This happens when you unleash the inner engineer 🤖🤓😜

User
Posted 18 Aug 2020 at 23:03

Great results Pete.  So pleased for you.


Ange

User
Posted 19 Aug 2020 at 11:57
Good news. Re interval I rationalise it by deciding what I would do if it went up and what impact another 3 / 6 months would have on the decision.

I have grown to enjoy blissful ignorance safe in the knowledge that 6 months delay won't make a blind bit of difference to my outcome at this stage of the game.

Same logic has made me swap to standard test, why worry about those .00's if it's not going to change my treatment plan or outcome.
User
Posted 19 Aug 2020 at 12:40

Pete 


Great result, you know our Angels will do what we want, I am now on four month testing and the result by text the next day or sooner if available.


Thanks Chris

User
Posted 19 Aug 2020 at 15:42
Thanks folks

I have a little hangover today but am now back in the saddle aiming to get on with my life :)
User
Posted 19 Aug 2020 at 15:46
Lynn

Someone on my other forum suggested four months as a compromise. What are your thoughts on that?

P
User
Posted 19 Aug 2020 at 15:50
good news on your results, think its whatever you think is best that matters or as you say 4 months and then maybe gradually increase to 6.


Barbara x
User
Posted 19 Aug 2020 at 15:52
Cheers Barbara

I am mainly thinking of my wife as I get a bit withdrawn leading up to test time and three times a year means one less grumpy old me period :)
User
Posted 19 Aug 2020 at 21:47

Glad it was a good result.


When the nurse said I was going on annual my first thought was no, perhaps 9 months.  She then added I could go anytime and ring her for the result if I got worried which sounded reasonable.   It's 7 months now and at the moment have no thought of going.

User
Posted 20 Aug 2020 at 00:59
3 months or 4 months or never, only you can decide what suits you..
 
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