I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

My 3 men contd

User
Posted 18 Dec 2018 at 10:10

Good news Lyn so pleased for you both,I have my six monthly blood test tomorrow for next oncology meeting in January.


Have a great Christmas and New year and thanks for all your support in my early days.


John.

User
Posted 18 Dec 2018 at 21:54

Brilliant news on the psa Lyn so happy  for you but gps and prostate are as far apart (Hold on to your T ) as Tits and Kippers .πŸ˜‚


Yes its me 


Julie xxx

NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Feb 2019 at 13:54
Went with dad to see Mr P last night; his PSA is now 1.2 and the doubling time has increased from 4 years to 2 years to 21 months. According to Mr P, it will be about 10 years before the remaining cancer cells (which he is confident are in the prostate bed and have probably been there for the entire 19 years since RP) start to cause a problem. On that basis, we have agreed that there is no need to start HT until/unless the doubling time reaches 6 months - I asked about PSA thresholds of 5 / 10 / 20 but he felt very strongly that these are arbitrary numbers and it is the doubling time that should determine when to intervene. He also suggested that if/when Dad does go onto HT, he should go with intermittent approach which will knock it back in phases while allowing dad to stay as active as he currently is.

We talked about scans to confirm that the stray cells are actually in the prostate bed. He said that MRI is notoriously unreliable below PSA of 10 and although Dad could have a PET scan (choline or FACBC) he would have to pay privately - we agreed it was rather pointless since he won't have treatment yet even if the cluster is identified.

We discussed the fact that it is now 19 years since the op, and that dad was one of his first nerve-sparing patients; Mr P mentioned that his first nerve-sparing patients were 24 years ago and some are still here to tell the tale. Isn't that fab!

Finally, we had a chat about the PSA test and John's recent rise to over 0.1 and then back down again. He told us not to take it too seriously unless it becomes consistent - that at the cancer centre they have done some research on PSA which included testing women. The average PSA result for the women tested was 0.06 (and before Bollinge asks, it seems that these women are unlikely to have just had an orgasm). It seems this had played a part in the ending of the ultra-sensitive test.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Feb 2019 at 16:41
Hi Lynn

that sounds like good news for your dad.


regards barbara x
User
Posted 21 Feb 2019 at 17:23

L


Sounds like a thorough consultation and a good plan.


Thanks Chris


 

User
Posted 21 Feb 2019 at 19:13

Very thorough consultation, Mr P sounds very good.


It might be worth thinking about an MRI with enhancement.


I had a gadolinium enhanced MRI with a recurrent psa of 0.7 and it picked up cancer cells on the prostate bed. That wasn't a 3T machine before anyone asks!


I also had a coil pack placed on my abdomen to enhance the images which seems to be standard for pelvic MRI where I am.


It's great your dad is still pretty much ok 19 years from the operation and is still very active.


Ian


 

Ido4

User
Posted 21 Feb 2019 at 23:44
Great news for your dad and some very relevant questions that potentially relate to me at the moment. Very useful

Thanks

Bri
User
Posted 22 Feb 2019 at 05:45

Reckon Mr P knows he’s met his match in you, Lyn. However, he also seems like a top guy who treats his patients with the respect they deserve. A sound prognosis and much needed good news.

User
Posted 22 Feb 2019 at 07:36

Wow 19 years post op, that is wonderful to read.  Sounds like your Dad is in good hands, not just with Mr P, but with you to Lynn.  Long may it continue.


Michaela

User
Posted 22 Feb 2019 at 09:15
Great update Lyn thank you.

User
Posted 22 Feb 2019 at 10:00

Originally Posted by: Online Community Member
at the cancer centre they have done some research on PSA which included testing women. The average PSA result for the women tested was 0.06 (and before Bollinge asks, it seems that these women are unlikely to have just had an orgasm). It seems this had played a part in the ending of the ultra-sensitive test.


πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚

User
Posted 22 Feb 2019 at 15:31

He's in good hands with you accompanying him.  What you've written supports what you often say. That he's over psa 1 with cells in the prostate bed and not having treatment is re-assuring to others.  As well as the intermittent and velocity statements and MRI unreliable with psa under 10. In some ways it softens my own view that I want to know my actual psa but it hasn't knocked it off court.  Very good consultation. 

User
Posted 23 Feb 2019 at 23:38

Such a good uodate Lyn, no doubt that this is great information for many readers here too.


lots of love


Devonmaid xxx

User
Posted 26 Feb 2019 at 20:37

Hi Lynne


Been a wee while since I wrote. 


Good news on your dad, long may it continue. 


Cheers


Sandy

User
Posted 27 Feb 2019 at 10:55

Hi Lynn,


Great News long may it continue.


John.


 


 


 


 

User
Posted 28 Mar 2019 at 12:50
Great news Lynn.
We too have been to see Mr P this week. I only wish my patient could be a bit more pragmatic about his results.
User
Posted 28 Mar 2019 at 20:36
Did he tell you about their research testing women's PSA?

What was his score this week?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 May 2019 at 19:33
Wine for John and a nice cup of tea for me .... May 2019 PSA result is in and we have regained the < symbol :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 May 2019 at 19:50

πŸ‘fantastic news 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 May 2019 at 20:25

That's so good to hear Lyn. Tony's PSA due in next couple of weeks once we get back from the Cotswolds so squeaky bum time again.


 

User
Posted 17 May 2019 at 20:31
John was more nervous this time and put off getting the results for nearly a week! Good luck with yours, Peggles.

Julie, lovely to see you posting ... how are you doing?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 May 2019 at 20:53
Nice one!
Roger
User
Posted 17 May 2019 at 20:55

Lyn


Good to hear. 


Thanks Chris

User
Posted 17 May 2019 at 22:31
Brilliant news Lyn
User
Posted 17 May 2019 at 22:54

Great news

User
Posted 18 May 2019 at 00:35
Very pleased for you and yours,
Barry
User
Posted 18 May 2019 at 06:26
That’s good to hear Lyn. Like the new photo!
Betty
User
Posted 18 May 2019 at 06:50
Well done Matron!

Cheers, John.
User
Posted 18 May 2019 at 07:17
That's good news all the best to you and your family..Geoff
User
Posted 18 May 2019 at 09:27
It’s such a relief to get good news , love the new photo .
Best wishes
Debby
User
Posted 18 May 2019 at 09:32
Good news hope it continues

Cheers
Bill
User
Posted 18 May 2019 at 10:03

That’s great news.

Ido4

User
Posted 18 May 2019 at 10:48

Very good news! 
Enjoy the cuppa πŸ™‚

User
Posted 18 May 2019 at 13:59
Nice one, keep the very good news going.

Ray
User
Posted 18 May 2019 at 15:32

Very happy for you all Lyn.

User
Posted 19 May 2019 at 01:12
Great news Lynne. Very pleased

Clare
User
Posted 19 May 2019 at 02:42

πŸ’•πŸ’•πŸ’•

Ten. YES BLOODY 10 years since DX!!


I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 19 May 2019 at 12:15
Great news....please please let me follow a similar path πŸ˜‰
User
Posted 19 May 2019 at 14:10

Wonderful news Lyn, really chuffed for you both x

User
Posted 07 Aug 2019 at 21:29
John did the Prudential Ride London on Sunday for PCUK. Along the way, other riders raising money for the same charity chatted to him, shared their stories, etc. One guy, riding alongside him somewhere in Surrey, asked whether J had "had any problems down there yourself?" John explained that he had indeed. The other rider then embarked on a very open conversation about ED, incontinence, pumps and his wife's relief that "all that business is over with." Only wearing a 'man of men' shirt would you ever have conversations like that with a stranger on a bike πŸ˜‚

I was at the finish line on the Mall to cheer him and other friends on, and was struck by how many PCUK riders there were; someone said there were over 600! In comparison, our brain tumour charity had 15 riders. An email from PCUK yesterday stated that the riders on Sunday have already raised in excess of Β£210,000 with more still to be paid in - isn't that amazing!

In other news, Dad's PSA has dropped to 0.95 which is completely in line with his progression rate over the last 3 years so it seems the January 19 result was a glitch. Happy days :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Aug 2019 at 23:56

Your reference to the men conversations is spot on.


At the various support groups I go to, and on a Prostate Peddlers cycle ride, men have conversations of an unbelievably personal nature which just don't happen anywhere else as far as I know (except possibly here), things like semen consistency, what orgasms feel like after treatment, etc. I've got very used to it. Actually, I have to be careful not to accidentally drop down to this very personal level of information when I'm not in the company of PCa patients - I slipped up once early on and realised I'd embarrassed someone with too much information.


The other place that's great for this is the radiotherapy waiting room. Probably half the people in there are PCa patients, but there are also breast, bowel, bladder, cervical, and every type of palliative cancer patients, and the conversations are just beyond this world. A week back, a conversation about who'd wet themselves on the table morphed into what type of incontinence pants we're each using, and then into where the men's ones are found (usually in the Feminine Products section of a shop). The waiting rooms have the aircon temp set low, which I'm sure is for all the men sitting out their hot flushes, but the women are usually freezing in there. Fantastic conversations between the men and women comparing menopause and HT side effects, tamoxifen side effects, etc. I've only got one RT session left, and I'm really going to miss the waiting rooms.

Edited by member 07 Aug 2019 at 23:58  | Reason: Not specified

User
Posted 08 Aug 2019 at 16:48

Great amount raised. Well done to all.


 

Ido4

User
Posted 08 Aug 2019 at 17:23
Yes Andy I remember having a detailed conversation in the RT waiting room about the timing and consistency of poos with a lovely guy I'd never met before or since.
User
Posted 08 Aug 2019 at 21:44

Likewise I remember a man telling me he got caught short in the woods walking his dog. He described how he poo’d In a dog poop bag!

Ido4

User
Posted 09 Aug 2019 at 01:35
Well done, PCa is now getting more of the support it deserves which is good for so many. Unfortunately, this is not the case with a number of less numerous and more rare cancers which in some cases can develop more quickly/severely.
Barry
User
Posted 14 Nov 2019 at 20:17
Feeling a bit shocked today. Dad's hiking buddy's grandson has been diagnosed with advanced PCa at the age of 26. Presumably there will be some genetic testing.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Nov 2019 at 20:24

So scary Lyn when most people believe pca to be an old mans disease . 


BFN 


Julie XXX

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Nov 2019 at 20:41

Hi Lyne


So sorry to hear that, totally unbelievable to read that someone so young being diagnosed with it.


Sandy

User
Posted 14 Nov 2019 at 20:52

Lyn


Not good to hear. On another forum I belong to a 22 year old girl was moaning that urology is always full of old men, sadly not always the case.


Thanks Chris

User
Posted 14 Nov 2019 at 21:27
God that’s awful and worrying.

Hope he gets all the best treatment possible

Bri
 
Forum Jump  
©2019 Prostate Cancer UK