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User
Posted 18 Mar 2022 at 00:16

Just read through the whole post Bri, you’re doing amazing…hopefully you are feeling that too. I’m already dreading my husbands next PSA but really don’t want it to control our lives. Very difficult to switch off from PCa I find!

Although I’m sure no rise would be so much better, it does seem good news that these are just small rises and fingers crossed it will just settle at some point. Wishing you all the very best.

User
Posted 18 Mar 2022 at 00:19

Oh could I just ask Brian….when you had a previous rise you mentioned you were going to experiment with diet ie no red meat/dairy and reduce sugar etc….did you do that? I’m always saying to my husband how I think these things may help so interesting to hear other experiences. Thank you x

User
Posted 18 Mar 2022 at 09:36
Very worrying for you Bri. Especially for you ! But as said above still very small rises and will need to be psa 1 maybe before scanning. Good luck
User
Posted 18 Mar 2022 at 10:54
Hi Bri

It’s been awhile hope you are ok apart from the small rise.

All the best

Roy

User
Posted 18 Mar 2022 at 17:25

Bri , I just keep going and don't worry about it. 

Thanks Chris

User
Posted 18 Mar 2022 at 22:37

Hi Elaine I’m afraid I did t commit to it. If anything I went a bit in reverse ie my exercise dropped off due to injury and prob ate more sweet stuff than I should. I’m going to make more of an effort going forward though. 
Hope you are both as well as can be 

Bri x 

User
Posted 18 Mar 2022 at 22:39

Cheers Chris. Tbh I’m not really worrying. Obs would prefer it to stall but it is what it is. Hope you are ok mate

Bri

User
Posted 18 Mar 2022 at 22:41

Hey up Roy

Great to hear from you. Hope you are as good as can be. How’s your treatment working at the mo

Bri

User
Posted 18 Mar 2022 at 22:43

Cheers Chris

Hooe you are both well. Im kind of resigned to it. Tbf when first dx I did t think I’d see 60. But it’s 10 years this year since I was dx 

Bri 

User
Posted 18 Mar 2022 at 23:17

Originally Posted by: Online Community Member

Hi Elaine I’m afraid I did t commit to it. If anything I went a bit in reverse ie my exercise dropped off due to injury and prob ate more sweet stuff than I should. I’m going to make more of an effort going forward though. 
Hope you are both as well as can be 

Bri x 

Well it sounds like things are still going pretty steady even with eating some of the nicer things. I guess who knows whether it makes a difference? I was thinking maybe it could have been diet that was helping with just small PSA increases for you. Maybe I won’t tell rob off for eating a chocolate biscuit now 🤦🏻‍♀️🙄🤣

Hope you’re recovered from your injury now.

All the very best x

User
Posted 30 Jan 2023 at 14:17
Forgot to update. So last July my PSA went from 0.55 to 0.57

Just had todays consultation and it has risen to 0.69

Medics still not concerned as relatively small rises and still under 1. Had a lengthy conversation about PSMA Scans but medic says not in their protocol to do one at this stage unless there was rapid rise or it got to about 2. She said my next line of treatment would be HT but they would delay for as long as possible.

She seemed to acknowledge that a PSMA scan can pick up earlier but said as I am incurable there is no real benefit to me. I mentioned SABR and she said she does this. I mentioned paying private for a PSMA and she said it may give me some peace of mind. I said surely picking up something earlier would be beneficial but I seemed to get a non-committal response ie anything identified could not be cured as Sabr does not cure it helps to manage the cancer. So left a little confused whilst understanding they do not have a money tree. Also forgot to ask at what point chemo would be a positive’ eg before commencing HT 🤷🏻‍♂️

Any wise informed words appreciated.

Heres my PSA reading from 2018 onwards

May 18 - <0.01

Nov 18 - 0.08

Feb 19 - 0.12

May 19 - 0.12

Nov 19 - 0.14

Aug 20 - 0.17

Mar 21 - 0.31

Jul 21 - 0.37

Nov 21 - 0.44

Mar 22 - 0.55

Jul 22 - 0.57

Jan 23 - 0.69

User
Posted 30 Jan 2023 at 21:24
Brainssac did you have whole pelvis salvage therapy or just the prostate bed?

If it was just prostate bed you still have options for pelvic lymph nodes if that is where the cancer is.

I would seek a second opinion if I was in your position re the PSMA scan.

User
Posted 30 Jan 2023 at 21:36
Oh franci ...
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jan 2023 at 22:16
?? Just repeating what I have been told by 2 oncologists from different parts of the UK.

User
Posted 30 Jan 2023 at 22:18

Originally Posted by: Online Community Member
Brainssac did you have whole pelvis salvage therapy or just the prostate bed?

If it was just prostate bed you still have options for pelvic lymph nodes if that is where the cancer is.

I would seek a second opinion if I was in your position re the PSMA scan.

Francij thank you. I am not sure I could have further RT to or near the prostate bed. 
However I do need to consider how I can get a 2nd out of area 2nd opinion about the PMSA scan and possible subsequent treatment 

User
Posted 30 Jan 2023 at 22:19
User
Posted 30 Jan 2023 at 23:47
The onco actually does SABR but doesn't consider you suitable. It would perhaps be a different kettle of fish if she was one of these dinosaurs that just isn't aware of SABR or other modern approaches. I can see where the ambivalence comes from - an identified met is highly unlikely to be an orphan; CC has recently gone through all this, apparently unsuccessfully. I am not saying don't get a second opinion but don't set your expectations too high - your onco has done well by you this far.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Jan 2023 at 00:03

Lyn, you know of my onco,5 years ago he would not entertain PSMA or similar scans, two years ago he said we would wait until the PSA got to 10 before he would scan, 7 months ago at somewhere around 1.4 he decided a scan was a good idea. 

Thanks Chris.

User
Posted 31 Jan 2023 at 05:01
The jury is still out on CCs case IMHO. I guess if you are still healthy and HT free in 10 years you would be happy with that CC?

We may never know if treating your lymph node has helped but given you have had no serious toxicity from the treatment (unlike previously) it hasn't done any harm.

Get the second opinion brainsac if you can...

User
Posted 31 Jan 2023 at 07:57

Franci, hopefully the jury is still out, I don't seem to be able to find any personal experiences of the same treatment to compare with.

HT free for ten years would certainly be a bonus. 

Brian, something to consider about going for an out of area second opinion,  you need to know that oncologist favours PSMA type scans and local SABR treatment.

Thanks Chris 

User
Posted 31 Jan 2023 at 17:01
Good point franci - I stand corrected!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Aug 2023 at 22:19
Still waiting for my May appt 😡. Are others having missed appts? They are not even returning my calls when I leave a message. So frustrating particularly when they made the decision to see me every 4 months

Gggrrr

User
Posted 02 Aug 2023 at 01:09

Must be so frustrating for you, maybe try an email and a phone call every day and see how you get on. That is usually my approach if I’m waiting for answers.

Are you waiting for another PSA test at this appointment? If so would it be worth speaking to your GP to get your blood test done ‘in the community’ ?  I get Rob’s done like this and then I just send the results to his consultant or gp recently sent to oncology.

Really hope you get sorted soon 🤞🏼

User
Posted 02 Aug 2023 at 08:07
Thanks Elaine. I thought about asking my GP for a blood form to do the PSA but then i would probably find myself more frustrated if there was a significant change but could not get to speak to an oncologist

Bri

User
Posted 02 Aug 2023 at 23:32

Brian, when under the NHS I was fortunate that our oncology department had two oncology nurses who I could ring at anytime. Does your oncology department have any specialist nurses you could ring.

Thanks Chris 

User
Posted 03 Aug 2023 at 20:34
Hi Chris

I was never given the names of any speciality nurses at Weston Park. Think its time to contact PALs

User
Posted 18 Sep 2023 at 19:07

Managed to get my latest Oncol review albeit 4 months late. The PSA is now 0.81 so a rise but pretty much what I expected. So thats a rise of 0.12 in about 8 months
Discussed scans etc and further treatment. Oncol said in their Trust they offer scans when PSA reaches 2. Discussed how people I know had PMSA scans and treatment to identify PCa in areas like lymph nodes with lower PSA results. . The oncol said that this will only delay the start of HT rather than cure. I said I would want to delay the start of HT if possible. The outcome is that she will refer for a PMSA scan to see if they will accept it.
I know the chances of identifying anything with my PSA is low but seen others on here with lower or similar PSA’s who had PSMA scans that did detect rogue cancer cells.

Edited by member 18 Sep 2023 at 21:19  | Reason: Not specified

User
Posted 18 Sep 2023 at 19:26

Well I'm not in your position, but if I were I too would be in no hurry to start HT. If the PSMA scan were to show a small number of mets then presumably SABR would be a credible option, and if it shows more than a few then HT is presumably the only option.

Dave

User
Posted 18 Sep 2023 at 20:55

I presume so Dave. I am unsure whether I did the right thing asking for the PSMA scan now or if I should have waited until the PSA did reach 2. My thoughts where at 2 it may be HT as the scan might pick up quite a bit of PCa here and these. 

i guess my thinking is to hit it with RT if possible and as soon as  But then it may also mean starting HT sooner than I would want…….aarrgghh…what to do 🤷🏻‍♂️

Would welcome people’s thoughts

Cheers

Bri

Edited by member 18 Sep 2023 at 21:00  | Reason: Not specified

User
Posted 19 Sep 2023 at 00:12

Brian, the waiting time for PSMA scans is quite long in some areas, so your PSA may be slightly higher by the time you get a scan. 

Thanks Chris 

User
Posted 19 Sep 2023 at 07:16
A PSA of 0.8 should be easily visible to a PSMA PET provided it is one or 2 tumours and not 1000s of micromets.

Your doubling time is probably relevant here as it's > 2 years? Which is very slow and hence NOT indicative of micromets.

I think you are doing the right thing having a PSMA scan. If you have £2000 spare a private PSMA scan and a second opinion would not hurt.

User
Posted 19 Sep 2023 at 07:24
Also was your salvage RT whole pelvis or just prostate bed?
User
Posted 19 Sep 2023 at 21:33
Cheers Francij

Prostate bed I believe

Thanks

Brian

User
Posted 19 Sep 2023 at 22:52

Ok so that means you still have some room for further RT to your pelvis if the scan finds something...

User
Posted 20 Sep 2023 at 23:46

Hi,  it's surprising that they only do psma scans at psa of 2.  I've read that having treatment much earlier is more likely to be successful.  My hospital said they'd refer me to Oncology at 0.2 and a psma scan at 0 5.  They also said patients get private scans and they'll use them.

There are probabilities on line for what might be found at different psa levels.  A single lesion could be seen well before 0.5, much lower in some cases,  but the more it's divided the less probable it will be seen.  If you're paying yourself I'd be trying to get a scan now, although if the hospital refer you and you are confident they will then you could stay with them. You need to keep them on board I'd feel you know. I haven't read your profile as yet so hope there isn't some other factor   All the best Peter

User
Posted 21 Sep 2023 at 12:04

Hi

ive had RP&RT in 2013. The purpose of the PMSA scan is if there are only isolated cells they can be dealt with via saber treatment

cheers

Bri

Edited by member 21 Sep 2023 at 19:16  | Reason: Not specified

User
Posted 25 Sep 2023 at 20:16

Wow got a phone call today to book me in for a PMSA scan in October. That was quicker than I thought. 
At least we will know if there is anything obvious floating around and if so can hopefully deal with it

Bri 

User
Posted 25 Sep 2023 at 21:23

That's good news.

User
Posted 13 Nov 2023 at 11:45
Hi guys, just had PSMA results. There is a 4mm lesion in a pelvic lymph node. But also unsure about further activity in the pelvic bone. They want a MRI to see if the issues in the pelvis bone are mets. If they are then SABR is not possible. If they are not mets they will discuss Sabr treatment. Either way they said they do not want to start HT yet as my PSA is still relatively low. Any thoughts from those who have experienced similar. Cheers.
User
Posted 13 Nov 2023 at 20:39
Oh meant to say. The Trust I am under wont start HT until PSA reaches 10 unless it starts to rocket

Cheers

User
Posted 13 Nov 2023 at 23:30

A couple of years back my onco said we would wait until my PSA got to 2.4.or even 10, before starting HT. He then changed his mind and went down the SABR route.

Hope it's not in your bones.

Thanks Chris 

User
Posted 14 Nov 2023 at 12:00
Hi Brainissac. Assume you wouldn't be able to have your pelvis zapped because it has been previously??
User
Posted 15 Nov 2023 at 00:25
Chris, the wau she was speaking I suspect it has gone to the pelvic bona

Francij- I am not sure tbh. Will speak to her about that altho if there are more than 3 mets its a no go

Cheers guys

User
Posted 21 Nov 2023 at 20:54
Well had the MRI scan of the pelvis yesterday. Now the waiting game to see if there are pelvis bone mets to join the pelvic lymph node that has some PCa

One thing I forgot to mention following my PMSA scan is that although it identified spread to the lymph node there was nothing seen in the prostate bed so I presume RP and RT did the job but maybe too late

🤷🏻‍♂️

User
Posted 22 Nov 2023 at 01:10
Aww Bri - just catching up with all this - sorry :-( But fingers crossed for a single met & SABR x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Nov 2023 at 07:31

Brian, fingers crossed for you. 

Thanks Chris 

User
Posted 21 Dec 2023 at 13:00

The urology nurse has rung me today to let me know that the MRI could not see any mets on the pelvic bone and the suspicious areas are likely to be OA. This potentially means I  currently just have the one pelvic lymph node affected (that is visible). So maybe Sabr treatment will be an option. Got to speak to Oncologist in January but she did mention previously that Sabr to the pelvic region could be risky due to the previous RT

Anyone got any thoughts on this

Cheers Bri

Oh and Happy Christmas to all

Edited by member 21 Dec 2023 at 13:01  | Reason: Not specified

User
Posted 21 Dec 2023 at 16:46

Bri, I have had two lots of SABR to two separate pelvic tumors following salvage RT. They may not treat a tumor that is too close to certain organs.

Merry Christmas to you and your family.

Thanks Chris 

User
Posted 23 Dec 2023 at 17:55

Thanks Chris. Appt mid January so will find out there

Merry Christmas to you and yours

Bri 

 
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