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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

If life gives you lemons , then make lemonade

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

If life gives you lemons , then make lemonade

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

If life gives you lemons , then make lemonade

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

If life gives you lemons , then make lemonade

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

User
Posted 05 Mar 2021 at 16:08
Sorry to hear that Bri, not the best result I guess. Try to enjoy the next few days ; I’m slowly learning that worrying changes absolutely nothing at all. Wait for that advice Tuesday. Good luck

If life gives you lemons , then make lemonade

User
Posted 05 Mar 2021 at 16:47
Cheers Chris. Not overly worrying. Trying to convince my self that even though this has jumped higher than I would have liked it’s taken 16 months to get to this point from 0.17. Just hope peaks and plateaus can be a common occurrence along the way

Hope you are ok

Bri

User
Posted 05 Mar 2021 at 17:50

Hi Bri

Nice to hear from you. Hope you are ok apart from the small rise.

Roy

User
Posted 05 Mar 2021 at 18:05
Hi Roy, so good to hear from you. Hope all’s as good as it can be at your end 👍
User
Posted 05 Mar 2021 at 18:35

Bri 

Nobody likes a rise, we both have a long way to go before any further action, stay positive. 

Thanks Chris

 

 

User
Posted 05 Mar 2021 at 19:13
Cheers Chris. Yep agree 👍
User
Posted 05 Mar 2021 at 20:17
Bngger- probably a mistake to get your test results in your birthday week x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Mar 2021 at 20:25
Needed to know so I could prepare any questions for the oncologist. Not that I’m sure what I should be asking at this stage 🤷🏻‍♂️
User
Posted 05 Mar 2021 at 20:27
Nor me - it will be a bit of a frustrating 'see you next year' moment perhaps?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Mar 2021 at 20:36
Probably see you around September first but no change re interventions....hopefully
User
Posted 05 Mar 2021 at 20:49
Anyway bit of an experiment over next 6 months...increase exercise, more cooked tomato dishes, reduce red meat and dairy, Pomi-T, reduce sugar intake. Certainly won’t hurt anything
User
Posted 05 Mar 2021 at 22:43
👍👍👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Mar 2021 at 12:37

Sorry to read about this rise Brian.  Hope the consultation provides some reassurance and a way forward. 

Ido4

User
Posted 09 Mar 2021 at 11:29
Had my tel Consultation with the oncologist. She agreed that the PSA had jumped a bit higher than expected and that it will likely to continue to rise slowly. Discussed scans and she said they would do bone and CT when the PSA reached 1-2.

I queried a PSMA scan and Oligometatastic PCa. She said that if a scan identified activity in a lymph node or previously untreated area they could use RT to treat it. She also said there is a more sensitive scan available in Leeds which is nearer than London (PSMA scan). But she said they would refer for PSMA after the normal CT scan. However she was adamant that the PSA is still to low. Agreed we would discuss further at the next appt. She asked if I’d rather now move to 3 or 4 monthly tests and appt. Decided a 4 monthly appt was probably the best way fwd.

interestingly she said while ever I was well and there was nothing on scans they would delay HT until the PSA got to about 30 as research has shown no benefit. However, they would start earlier if I wanted that

Could sense a different tone to the conversation which is a bit unnerving

User
Posted 09 Mar 2021 at 14:30
Oh well I guess the cancer is back Bri but still at a minute level somewhere ? Doesn’t look like my case of romping micromets. Sounds like her advice is solid re holding off treatment , and also holding off scans until psa is higher. Hopefully it will be a naughty node or something that can be target zapped. Good luck mate

If life gives you lemons , then make lemonade

User
Posted 10 Mar 2021 at 11:53

It seems sensible to hold off scans until PSA is a bit higher. Hoping if anything is found they can target it with RT. I totally understand how the change in tone and emphasis is unnerving. Take care Bri.

Ido4

User
Posted 10 Mar 2021 at 13:00

I am post RP and salvage RT but have had rising PSA (0.44 to 5.7 in 12 months). Pre-christmas Bone and CT scans clear but recent PSMA scan showed areas of concern in the prostate bed. I was told that as I previously had salvage RT in this area, no further RT (SABR was mentioned) could be done. Now resigned to HT with Bicalutamide and Prostap treatment path just started.  I think further RT really depends not just on what the scan finds but where. 

 

User
Posted 10 Mar 2021 at 20:35
Hi Andrew, sorry to hear your predicament. May I ask what your PCa details are eg how long ago did you have your treatments. What was your PSA following RP and RT

Thanks

Bri

User
Posted 10 Mar 2021 at 20:43
Hi Andrew just seen the above info on your profile

Cheers

Bri

 
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