A rise on this test

User

Posted 26 Nov 2019 at 18:57

Brill xxx

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

User

Posted 26 Nov 2019 at 19:52

Fantastic news mate

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 26 Nov 2019 at 19:59

Bri

A drop would have been better but not a big rise. Relax and forget it for a few months.

Thanks Chris and Dawn

User

Posted 28 Jan 2020 at 15:22

Just seen oncologist to discuss the PSA from the end of November (0.14). They are not concerned and said they won’t start scans until the PSA reaches 1 (is that reasonable?). They said that could be some years away based upon current doubling time.

I meant to ask if it was worth considering a PMSA scan at this point. I’m thinking about treatment with RT for any possible mets it may identify. Do I contact them regarding this or wait for my next appt in July

Cheers

Bri

Edited by member 28 Jan 2020 at 15:22 | Reason: Not specified

User

Posted 28 Jan 2020 at 17:15

Recommended psa level for Choline PET is 3. Recommended psa for the newer PSMA PET is 1.

Ulsterman had a PSMA at a really low psa and it showed stuff up. Depends if you have £3k to spare to jump the queue. Why not just wait. I think they mostly give good advice but obviously are bound by funds also. Good luck

User

Posted 21 Feb 2020 at 14:53

OH at work, with my consent, requested a letter/report from my oncologist. I’ve just received a copy that I have mixed feelings about. In the letter the oncol states that the prognosis for biochemical recurrence with a slowly rising PSA is excellent. She states that cohort studies suggest only a third of men in this situation will develop distant mets within a 6-year follow up.
Whilst that sounds like relatively good news. Why don’t they share that info with their patients when we meet. I have never been told that at any point.
At my last appt they mentioned doubling time but also informed me it could take off at any point. Also in the letter there is no empathy at all shown towards the angst having a cancer dx can cause

Edited by member 21 Feb 2020 at 15:14 | Reason: Not specified

User

Posted 21 Feb 2020 at 16:35

Hi Bri

Well , you know my stats all too well. Some people can have very advanced disease with relatively low psa , whereas people like myself have always expressed very high psa but with only moderate progression. In June I will be 5 yrs post op and my psa hasn’t been tested in a good while but is estimated at over 300.

My Onco yesterday explained that cancer can become very unpredictable at any time , but even in my case if I continue to do nothing at all I may have another 2 yrs before I get bad symptoms.

I believe you are still in a very (good ) position with loads of options ahead and really no need to jump to decisions. I know we are all different and yet we are all worriers in different ways. I believe you’re going to live a really long time yet - but I’m not an Onco lol. Just try and enjoy every day. I’ve booked a holiday already based on another 6 months treatment free

User

Posted 21 Feb 2020 at 18:55

I told you that it was too early to be describing yourself as incurable - the onco letter might beggar up your application for ill health retirement but I am happy that I will still be moaning at you for at least the next 6 years and then many more 👍

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

User

Posted 22 Feb 2020 at 09:10

Lynn your inbox is full. Tried to message you re your post.

Bri

User

Posted 22 Feb 2020 at 10:13

I am just not taling PMs Bri - have you still got my email address?

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

User

Posted 22 Feb 2020 at 20:06

Originally Posted by: Online Community Member

I am just not taling PMs Bri - have you still got my email address?

not sure I ever had it Lyn

User

Posted 12 Aug 2020 at 17:36

So I decided to have my PSA test. The last one was the end of November. It was 0.14 at that point. Today’s reading is 0.17 so not that much of a rise in approx 9 months. I’m unsure about doubling times but believe this has to be a good doubling time. Phone consultation later this month but suspect NFA for now and retest in 6 months

User

Posted 12 Aug 2020 at 18:24

All sounding good Bri considering. It’s as scary for everyone and just as important to each person , but still very low so try to see it as that. Possibly something you will die with but not of as they say. Sounds flippant but many truths in a slow growing cancer in middle age. Stay well friend. Doing good

User

Posted 12 Aug 2020 at 18:39

So obviously this is not great news as the PSA has risen but it is great news in that your doubling time is just over 3 years and has slowed in the last 18 months.

Whatever you are doing, keep doing it!

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

User

Posted 12 Aug 2020 at 19:23

Cheers guys. Hopefully be some years before any further treatment

Bri

User

Posted 13 Aug 2020 at 10:12

Sorry to see your PSA is rising Bri, it’s always very unsettling and stressful. But as Lyn and Chris have said the doubling time is long so that is reassuring. Stay well and strong.

Ido4

User

Posted 19 Aug 2020 at 16:54

Had telephone consult with the Oncologist yesterday. As suspected NFA for now but will look at scans including, in her words, more technical ones when the PSA reaches 1. She suspects it will be a couple of years before that point as my doubling time is around 20 months.

Funny thing is she talked about the psychological impact a dx can have. Pity she didn’t share those views with my OH dept when they wrote to her.

Anyway time to try and forget it for 6 months

Bri

User

Posted 19 Aug 2020 at 21:14

That’s a must Bri. Easy to say forget about it. Very difficult. But I reckon you can get 70% there mate. I’m in a very S**t condition now quite suddenly , but still watching tv with cheese and biscuits and red wine ! Lovely. Enjoy those 2 years and there will be oodles more

User

Posted 20 Aug 2020 at 09:53

Cheers Chris. Glad you can still enjoy the simple pleasures in life at this time. Hoping some resolved way fwd is agreed so you can enjoy the cheese and red wine for many years to come

Bri

User

Posted 05 Mar 2021 at 15:43

So just had my latest PSA test result. Not great as it has come back at 0.31. Quite a rise on the last one in August which was 0.17. I guess the doubling time of about 18 months as now gone up the swanny ☹️

Tel consultation next Tuesday

Bri

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