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User
Posted 22 Apr 2020 at 10:18

Should I be worried..

DX in Jan 2016....T3-4N0M0...told at the time still in capsule but heading to the bladder.

Onco started me on Zoledex every 3 months, offered 6 cycles of chemo and 37 sessions of Radiotherapy and to stay on HT for 2 years after RT...

In Oct 2018 psa was 0.03....

in April 2019 psa was 0.05                                               testosterone had not started to recover

In Oct 2019 psa was 0.172         bit of a big jump......................Testosterone   9.5 so coming up

In Apr 2020 psa is 0.57      quite a big jump I'm thinking...............Testosterone now up to 13.5

Should I be worried by the big jump in PSA value and how quickly it's going up....I know I have to 2.03 with the psa before we know its back.....

Or should I be thinking it's back....or could the rise so quickly be because of my Testosterone rising as well?

Your thought son this would be greatly appreciated .

Shaun

 

User
Posted 22 Apr 2020 at 12:09

It's really good you have the testosterone levels too, most people don't during the recovery period after hormone therapy, but it's really useful to explain what's going on.

It is expected that PSA will rise as testosterone recovers. You still have a prostate, and it will still work to some degree after radiotherapy as testosterone takes the breaks off, so this is completely expected.

Your testosterone is now within the normal range, although it could still double in value, depending what your normal level is. PSA won't follow that linearly, but even if it doubles (which would not be surprising), you are still well below your safe limit.

From the information you've given, you look fine, and on the expected path.

User
Posted 22 Apr 2020 at 15:20
Hi Shaun, did you ask to come off HT or did your Onco recommend that you come off after the two years?
User
Posted 22 Apr 2020 at 15:48

Hi JasperM....I was only put on it for two years as I was on curative treatment 

User
Posted 22 Apr 2020 at 16:50
Don't Know whether your PSA tests are being monitored by your Oncologist but if your PSA test which seems to be due in Oct shows escalation, I would ask your Oncologist's opinion.

I think the addition of your Gleason scores in your Bio must have been done by Diane Abbott!

Barry
User
Posted 06 Oct 2020 at 19:56
I can see why you would be concerned although it could still stabilise - but why are you seeing the urologist rather than the oncologist?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2021 at 10:57
You evidently have recurrence, so I would seek advice from my oncologist about my cancer, and limit discussion with my urologist to the subject of my waterworks.

Best of luck.

Cheers, John.

User
Posted 18 Jan 2021 at 11:33
I don't think there is much you can ask or do at this point Shaun - the oncologist has clearly stated that she will not see you again until your PSA reaches 4 so there is little point your urologist trying to refer you back or arrange scans himself.

You don't definitely have a recurrence at this point.

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

User
Posted 07 Apr 2021 at 11:22

Got my latest PSA result this morning.....( my 6 monthly test ) it's now 4.1.

Urologist sent me for an MRI scan 3 weeks ago......spoke with one of his doctors yesterday who said the scan showed " Changes in the prostate ".........so it is going to be reviewed by the MDT in a week or two.

Have got my doctor to refer me back to the Oncologist, she tells me that my oncologist will be part of the MDT, so just got to wait now........

 

Will she have complete body and bones scans done?

Shaun

 

User
Posted 07 Apr 2021 at 12:43
I think if the oncologist doesn't suggest a full set of scans, you should ask why not?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Apr 2021 at 13:35

Originally Posted by: Online Community Member
I think if the oncologist doesn't suggest a full set of scans, you should ask why not?

Agree. You should ask for a PSMA PET scan. They really need to know exactly where the cancer is before going for more treatment. Ideally, do this before starting hormone therapy, as the hormone therapy reduces the sensitivity of the scan. There may still be some curative treatment options if they know exactly where it is.

User
Posted 07 Apr 2021 at 13:53
Unlikely - unless your mum got breast cancer when she was in her 30s / early 40s and you were diagnosed in your 40s or younger.

Trials are not necessarily relevant to you until you know what is going on - is it purely a recurrence in your prostate, or a new prostate cancer that has developed in the healthy bit of prostate that was left after your first RT or has the cancer metastasised? You won't know until you have scans.

Let's see what plan the MDT comes up with.

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

User
Posted 26 Apr 2021 at 15:03
The difficulty with prostate removal after RT is that it will be non nerve sparing and therefore ED will be an almost certainty - incontinence is also much more likely. Depending on how much radiation you had to the pelvic area, targeted RT or focal therapy to the recurrence might be possible. If the active cancer is elsewhere in your body, RT to the mets may also be possible.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Apr 2021 at 20:30
T4 means that it had already broken through the outer skin of the prostate and into the surrounding tissue - that isn't the same as being metastatic, which means it has spread to bones, soft organs or lymphatic system.

Good luck with trying to see a surgeon about salvage RP but please do be cautious - don't agree to salvage surgery unless / until it is confirmed by detailed scans that the recurrence is within the prostate. If it has spread to other organs or extensively within the pelvis (as is likely with a T4), removing the prostate is going to cause a whole lot of discomfort & potential side effects for no gain.

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

User
Posted 19 Jun 2021 at 15:17
Unfortunately, there is a lack of back up, so if something goes wrong in producing the tracer they have to cancel. It happened to me and I travelled to London from Devon before receiving notification it was cancelled. I did ask about this and was told all the facilities offering this in London would be affected. Hopefully, the situation may be better in London now with more reciprical arrangements but as the nuclear tracer has only a short half life, it could not be got to Liverpool frm London in time and those doing the PSMA scan are pretty few and far between, particularly outside greater London.

Hope you get the scan done as rescheduled.

Barry
User
Posted 26 Jul 2021 at 19:04
Just to add, many men don't have any side effects from targeted RT to bone mets except a reduction in pain.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jul 2021 at 18:19

They will be hoping that the SABR kills the mets so it is a curative pathway. As CJ says, there may be other mets that are just not showing on scans yet so the chance of remission is quite slim but they are chucking their best at it. 

Edited by member 27 Jul 2021 at 18:21  | Reason: Not specified

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

User
Posted 27 Jul 2021 at 18:58

Thanks Lynn…… s it usual for it to take 2-3 months to do the treatment ( that’s if the MDT ) give the go ahead…… when I saw the oncologist , she only had the report, she said she needed to see the scans to see that the 3 mets were suitable for the treatment …….

 

Chris thanks for your reply as well

User
Posted 28 Jul 2021 at 17:17
Hopefully the treatment will successfully treat those 3 areas.
Barry
User
Posted 28 Jul 2021 at 20:04

Hi Chris, apology not needed pal….. we all have had different journeys and I read all and look for inspiration in everything and am very grateful when people take the time to reply.

shaun

User
Posted 28 Jul 2021 at 20:38

Originally Posted by: Online Community Member

Hi Chris, apology not needed pal….. we all have had different journeys and I read all and look for inspiration in everything and am very grateful when people take the time to reply.

shaun

Yoh Chris, I was about to reply saying there going to play "whack-a-mole" with Shaun's tumours. 

Seriously Shaun it is good news and hopefully they can at least keep the cancer at bay for a few years, or possibly cure you. 

Dave

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User
Posted 22 Apr 2020 at 12:09

It's really good you have the testosterone levels too, most people don't during the recovery period after hormone therapy, but it's really useful to explain what's going on.

It is expected that PSA will rise as testosterone recovers. You still have a prostate, and it will still work to some degree after radiotherapy as testosterone takes the breaks off, so this is completely expected.

Your testosterone is now within the normal range, although it could still double in value, depending what your normal level is. PSA won't follow that linearly, but even if it doubles (which would not be surprising), you are still well below your safe limit.

From the information you've given, you look fine, and on the expected path.

User
Posted 22 Apr 2020 at 15:20
Hi Shaun, did you ask to come off HT or did your Onco recommend that you come off after the two years?
User
Posted 22 Apr 2020 at 15:48

Hi JasperM....I was only put on it for two years as I was on curative treatment 

User
Posted 22 Apr 2020 at 16:50
Don't Know whether your PSA tests are being monitored by your Oncologist but if your PSA test which seems to be due in Oct shows escalation, I would ask your Oncologist's opinion.

I think the addition of your Gleason scores in your Bio must have been done by Diane Abbott!

Barry
User
Posted 06 Oct 2020 at 14:48

Well my PSA have gone up twice since my last post in April when it was 0.57.

In July it was 0.91

Yesterday Oct...1.5

I know it can get to 2.03 and be ok but should I be concerned about the speed with which is rising....my next PSA will be in Jan when I again see the Urologist.

The PSA in July was done as the Urologist had wanted to see me 3 months after the July PSA, but then cancelled the appointment till Jan 2021

Am I right to be concerned or is there still a chance it won't hit 2.03

Shaun

 

 

User
Posted 06 Oct 2020 at 19:56
I can see why you would be concerned although it could still stabilise - but why are you seeing the urologist rather than the oncologist?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Oct 2020 at 07:49

Hi Lynne, I am seeing the Urologist because I kept getting prostate infections and my Dr referred me there.

Not had one for quite a few months now though.

The Oncologist discharged me when I got to the end of the Zolodex injections ( two years after Radiotherapy ) saying that I did not need to see her again unless my PSA went over 4 .

 

Shaun

User
Posted 18 Jan 2021 at 10:20

Morning all.

Just been for my latest PSA test.....by my calculations the way it has been going up every 6 months it will be somewhere just over 2.5.....

2.03 is my cut off point......

I have an appointment with the Urologist  ( been under him as I keep getting prostate infections )

what questions should i be asking?

Will he send me for scans if my PSA has gone where I think?

My Oncologist discharged me in October 2018.....saying she would not see me again unless my PSA got to 4.

Your thoughts are welcomed.....

My mind is in overdrive with worry at the min.

Shaun 

User
Posted 18 Jan 2021 at 10:57
You evidently have recurrence, so I would seek advice from my oncologist about my cancer, and limit discussion with my urologist to the subject of my waterworks.

Best of luck.

Cheers, John.

User
Posted 18 Jan 2021 at 11:06

First, you need to get your prostate infections sorted out, as your PSA readings are meaningless if you have a prostate infection, or even a UTI.

Can you explain what the symptoms of the prostate infection are, and what tests and treatments you've had for it? Not all urologists are any good with prostatitis.

If PSA is still above your cut off point 6 or more weeks after prostate infection has been cleared, then you need some further investigation.

User
Posted 18 Jan 2021 at 11:33
I don't think there is much you can ask or do at this point Shaun - the oncologist has clearly stated that she will not see you again until your PSA reaches 4 so there is little point your urologist trying to refer you back or arrange scans himself.

You don't definitely have a recurrence at this point.

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

User
Posted 19 Jan 2021 at 10:37

Hi Andy.

I first got diagnosed with prostate infection soon after my biopsy.....

I started with a dull ache in the groin area with what felt like a burning sensation going down the inside of my thighs...my own Dr diagnosed a groin strain, my mcmillan nurse said she did not know what it could be, I rang the specialist nurses on here and she said go back to the Dr , say you have spoken to me and that we suspect you have prostate infection and told me which antibiotics to ask for.......did this and it cleared up several weeks later.....as it kept happening my Dr sent me to the Urologist.

As my orgasms were totally dry, he said he could not test for it but to continue taking antibiotics as and when it flares up.

I have an appointment with him next Monday...had my psa test the other day.......with yet another episode..

 

Shaun

User
Posted 21 Jan 2021 at 16:18

Got my PSA result today before I have a telephone consultation with the oncologist on Monday.

PSA now 2.4.....my cut off is 2.03.

Testosterone still going up...was about 13 at last test...it's now gone up to 19

Still got a bit of prostate infection.

Let's see what the Urologist says Monday

 

Shaun

User
Posted 26 Jan 2021 at 10:13

Spoke to the urologist yesterday......

He is changing the antibiotics that my GP has me on....got to try these for 2 weeks,

if that clears it up, have psa retested 4 weeks after that.....

The thing that kinda worries me is that he is talking about starting intermittent HT...

I asked about scan and he replied that he did not think it would show up at  that score.

as previously stated I can go back to the Onco when it hits 4....by my thinking that will be at my April 6 monthly test so I will get a referral back to her.....had/have a lot of faith in her.

 

Shaun

User
Posted 26 Jan 2021 at 11:05

I would definitely push for a scan before more treatment, to see if there's anything outside the prostate. If you still have a prostate, it is difficult to know at what point a scan might show something. For a PSMA PET scan, you ideally want 0.5 more than your prostate is producing, but you don't know how much is coming from your prostate, so there's guesswork involved.

While you have a UTI or prostate infection, your PSA results are meaningless.

User
Posted 06 Feb 2021 at 10:20

Just got a copy of the letter that the Urologist sent to my Dr following my phone consultation.......

just saying PSA is at 2.4 and that he is not sure if that is because of a prostate infection, and that he is treating it with 2 wks of antibiotics and a follow up PSA 4 wks after that.......

pretty much what I already know.......

at the end of his letter he writes......." Interestingly his testosterone levels has come back to normal "...

 

Is there any reason that that would mentioned in that way?

Testosterone is now 19

 

Shaun

User
Posted 10 Mar 2021 at 13:39

Hi all.

Just got my latest PSA result.....3.7.

It has risen from 2.4   7weeks ago.

7 weeks ago, as I had symptoms of prostate infection, the urologist put me on a fortnight of antibiotics and told me to get a retest done 4 weeks after I finished them.

Unfortunately i have had to go back to the Dr ( my GP ) twice for more antibiotics as the infection only seemed to clear up for a few day at the end of each course...........I still have the symptoms of an infection.

 

Could the fact that it looks like I am still fighting a prostate infection be the reason that my PSA has gone up to 3.7?

My Oncologist said when she discharged me that I could go back to her if it gets to 4......should I get my GP to refer me back......the way it is going up, my PSA will be over 4 in   4 wks,

or do I see what the Urologist has in mind re the infection?

 

Shaun

I have my next PSA booked in 4 wks, this is one of my 6 monthly checks   

User
Posted 07 Apr 2021 at 11:22

Got my latest PSA result this morning.....( my 6 monthly test ) it's now 4.1.

Urologist sent me for an MRI scan 3 weeks ago......spoke with one of his doctors yesterday who said the scan showed " Changes in the prostate ".........so it is going to be reviewed by the MDT in a week or two.

Have got my doctor to refer me back to the Oncologist, she tells me that my oncologist will be part of the MDT, so just got to wait now........

 

Will she have complete body and bones scans done?

Shaun

 

User
Posted 07 Apr 2021 at 12:43
I think if the oncologist doesn't suggest a full set of scans, you should ask why not?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Apr 2021 at 13:08

Thanks Lynne.

Do you think it would be worth asking about being tested for BRCA....my mum died from breast cancer....i did ask at the beginning 5 years ago, but the Macmillan nurse said no point as my mum wasn't here to test as well?

Are there any trials for recurrent PCa that you know of?

 

Shaun

User
Posted 07 Apr 2021 at 13:35

Originally Posted by: Online Community Member
I think if the oncologist doesn't suggest a full set of scans, you should ask why not?

Agree. You should ask for a PSMA PET scan. They really need to know exactly where the cancer is before going for more treatment. Ideally, do this before starting hormone therapy, as the hormone therapy reduces the sensitivity of the scan. There may still be some curative treatment options if they know exactly where it is.

User
Posted 07 Apr 2021 at 13:53
Unlikely - unless your mum got breast cancer when she was in her 30s / early 40s and you were diagnosed in your 40s or younger.

Trials are not necessarily relevant to you until you know what is going on - is it purely a recurrence in your prostate, or a new prostate cancer that has developed in the healthy bit of prostate that was left after your first RT or has the cancer metastasised? You won't know until you have scans.

Let's see what plan the MDT comes up with.

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

User
Posted 26 Apr 2021 at 10:32

Just spoke to the Oncologist ( first time in nearly 3 years ).

The MRI scan that the Urologist sent me for is not conclusive that it is cancer but from my PSA....latest was 4.1

3 weeks ago, she says the cancer is back.

She is referring me to Liverpool for a PSMA PET scan....

She says it can take two to three months to get the scan.....we asked about paying private ( about £2500 ) but she said waiting till it is offered on the NHS will not make any great difference....

So it's back to the waiting game.

If it is back in the prostate, I'm sure I have read about a trial on here where it comes back after first line RT, having the prostate removed........Does anyone have any info as to where this is being done?

 

Shaun 

User
Posted 26 Apr 2021 at 15:03
The difficulty with prostate removal after RT is that it will be non nerve sparing and therefore ED will be an almost certainty - incontinence is also much more likely. Depending on how much radiation you had to the pelvic area, targeted RT or focal therapy to the recurrence might be possible. If the active cancer is elsewhere in your body, RT to the mets may also be possible.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Apr 2021 at 10:05

Thanks for your reply Lyn..........do you think it would be worth paying for the scan privately to speed things up or just wait as the Onco has said till it comes on the NHS......my worry is that in 2-3 months my psa will most likely be over 8 by the way it is rising?

 

Shaun

User
Posted 30 Apr 2021 at 18:21

I got a copy of the Oncologists referral letter for my PSMA scan at the Royal Liverpool hospital.

I rang to enquire about going private as my onco thought the waiting time was 2-3 months, but was told that they do not do private and that the waiting list is 4-6 weeks and not 2-3 months so i feel a bit easier about waiting.

Letter says that I have had an MRI scan but it was unclear if it showed prostate infection or as the onco described it, Local recurrence........

She said at diagnosis , I was T4 N0 M0........the T4 surprised me as I always thought I'd been told T3. I thought T4 was when it had spread?

So it's back to the waiting.

At the minute i am 3 weeks into a 4 week course of antibiotics for what we think was another prostate infection.......has been almost gone for the last fortnight, but now the symptoms are back.

 

Shaun

User
Posted 30 Apr 2021 at 20:30
T4 means that it had already broken through the outer skin of the prostate and into the surrounding tissue - that isn't the same as being metastatic, which means it has spread to bones, soft organs or lymphatic system.

Good luck with trying to see a surgeon about salvage RP but please do be cautious - don't agree to salvage surgery unless / until it is confirmed by detailed scans that the recurrence is within the prostate. If it has spread to other organs or extensively within the pelvis (as is likely with a T4), removing the prostate is going to cause a whole lot of discomfort & potential side effects for no gain.

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

User
Posted 30 Apr 2021 at 21:15

Thank you Lyn

User
Posted 19 Jun 2021 at 08:49

Set off for my PSMA scan in Liverpool on Thursday afternoon, was on the M62 when we got a call from the hospital to tell us they had to cancel the scan as the PSMA had failed........felt like a kick in the stomach but these things happen.

Got a new appointment for in 3 weeks......fingers crossed that one goes ahead.

 

Shaun

User
Posted 19 Jun 2021 at 15:17
Unfortunately, there is a lack of back up, so if something goes wrong in producing the tracer they have to cancel. It happened to me and I travelled to London from Devon before receiving notification it was cancelled. I did ask about this and was told all the facilities offering this in London would be affected. Hopefully, the situation may be better in London now with more reciprical arrangements but as the nuclear tracer has only a short half life, it could not be got to Liverpool frm London in time and those doing the PSMA scan are pretty few and far between, particularly outside greater London.

Hope you get the scan done as rescheduled.

Barry
User
Posted 26 Jul 2021 at 17:00

Hi all.

Got to see the oncologist today.

The PSMA scan shows that PCa is not back in the prostate area......

It is however in a rib ( left 9th ), T4 vertebra and right Ilium......

The Oncologist is going to discuss at the next MDT ( next Wednesday ) the possibility of radiotherapy to these three areas,

As they have only just started doing this treatment at Preston she says I may have to go to the Christie's in Manchester for the treatment to the T4 vertebra..........I'll go anywhere to give it a try....

She also said it could take 2-3 months to sort the treatment.

PSA risen to 6.4 from 4.1  15 weeks ago.......that's a slight slow down on the rate that it has been going up.......

Has anyone else had this treatment and if so how did it go and how are you doing....

Shaun

 

User
Posted 26 Jul 2021 at 17:27
Hi Shaun I had 3 lots of spot RT. Two to spinal areas and one to right ribs. I can only have 3 more in the future if needed. That’s because although the RT zaps the cancer , it also zaps your heart , lungs , trachea , stomach etc. Any tissue that it passed through. At Southampton it’s a day case walk-in centre as long as you’ve been forwarded for it lol. You turn up at 8am and leave at 4pm.

My side effects were quite bad with swallowing problems , sore throat , breathing difficulties etc but they passed in about 6 weeks. The actual treatment ( after a planning scan and permanent tattoos ) takes about 10 minutes and is quiet and painless. The effects come later. Good luck and best wishes

User
Posted 26 Jul 2021 at 18:31

Thanks Chris

User
Posted 26 Jul 2021 at 19:04
Just to add, many men don't have any side effects from targeted RT to bone mets except a reduction in pain.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jul 2021 at 15:53

Am I correct in thinking I am now incurable even if the do SABR to the 3 areas?

User
Posted 27 Jul 2021 at 18:10
Lyn is the resident expert , but I’d say if you have 3 distant bone mets then yes you are now incurable I’m sorry to say. Yes the RT can knock the relevant tumours back and give you time , but very likely more will pop up as time continues. I guess like myself you will now be on HT for the rest of your life or with ‘ holidays ‘ if you react well to it. Good luck
User
Posted 27 Jul 2021 at 18:19

They will be hoping that the SABR kills the mets so it is a curative pathway. As CJ says, there may be other mets that are just not showing on scans yet so the chance of remission is quite slim but they are chucking their best at it. 

Edited by member 27 Jul 2021 at 18:21  | Reason: Not specified

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

User
Posted 27 Jul 2021 at 18:45

Originally Posted by: Online Community Member

Am I correct in thinking I am now incurable even if the do SABR to the 3 areas?

That's a difficult question to answer because your cancer has travelled and may show up elsewhere even if the 3 areas you mention are successfully treated, but how long might this take? It is likely that if further spots occur you will need these to be treated systemically as there is a limit to how much RT you can be given.  There are some other treatments like Lu 177 and other possibilities being developed, the success of which needs to be established. Such treatments may further extend your life but depending how well these work if and when specifically required and administered for you, one cannot say.  I would not think of it in terms of being incurable but the remission you may have following appropriate treatment.   

Barry
User
Posted 27 Jul 2021 at 18:58

Thanks Lynn…… s it usual for it to take 2-3 months to do the treatment ( that’s if the MDT ) give the go ahead…… when I saw the oncologist , she only had the report, she said she needed to see the scans to see that the 3 mets were suitable for the treatment …….

 

Chris thanks for your reply as well

User
Posted 27 Jul 2021 at 20:40

Thanks Barry

User
Posted 28 Jul 2021 at 16:47

Oncologist rang today after the MDT to say they are going to do SABR to the three areas of spread ……. Only saw my oncologist on Monday….. have a lot of confidence in her. 😃

shaun

User
Posted 28 Jul 2021 at 17:17
Hopefully the treatment will successfully treat those 3 areas.
Barry
User
Posted 28 Jul 2021 at 18:33
Hi Shaun , reading back I’d like to apologise for maybe the insensitivity of my previous posts - I guess I’ve been on the treadmill too long …..

SABR is way different to what I had. It is guided precisely and can ‘ stop ‘ at the tumour with less passing through. My mets were so numerous that I had calculated EBRT which can be anything from a postage stamp to a large envelope , but it passes through your body damaging healthy tissue as well. Hopefully this will be a great fix for you and you are lucky to get it. That’s why it is taking a while for the appointments I guess. And as Lyn says , potentially a curative path. Sorry for my ignorance 👍 and good luck ahead

User
Posted 28 Jul 2021 at 20:04

Hi Chris, apology not needed pal….. we all have had different journeys and I read all and look for inspiration in everything and am very grateful when people take the time to reply.

shaun

User
Posted 28 Jul 2021 at 20:38

Originally Posted by: Online Community Member

Hi Chris, apology not needed pal….. we all have had different journeys and I read all and look for inspiration in everything and am very grateful when people take the time to reply.

shaun

Yoh Chris, I was about to reply saying there going to play "whack-a-mole" with Shaun's tumours. 

Seriously Shaun it is good news and hopefully they can at least keep the cancer at bay for a few years, or possibly cure you. 

Dave

User
Posted 18 Aug 2021 at 18:24

Well, my oncologist has sent mr to Preston for SABR treatment on my rib and hip and referred me to Christies's for my T4 as Preston have only just started doing SABR and are not set up to deal with the spine yet.

Christie's has put it on hold till they get an MRI of my whole spine......That's being done next Monday, 23rd Aug.

Preston have phoned this evening to say they will start my treatment to the rib and hip on the 13th of Sept.....

my PSA went past my cut off of 2.03 in Jan, my oncologist said to go back to her when my PSA went over 4...that was 7th April.......my last PSA 3 weeks ago was 6.7.....

When my treatment starts it will 8 months since we knew it was back......

Feel really worried that it will already have spread to other areas.

 

Shaun

 

User
Posted 18 Aug 2021 at 19:28

I'm glad things are now all in place. Yes it is a worry that it may have spread, we just have to live with uncertainty.

Dave

User
Posted 11 Nov 2021 at 10:06

SABR now complete, PSA at the start 8.5 and as soon as finished 9.2…… rate of rise has slowed down….Oncologist wants another PSA in 10 weeks…

Anyone know how long before my PSA starts to go down if treatment has been successful and how low should it go….my nadir was 0.03

shaun

User
Posted 11 Nov 2021 at 11:00
Hi Shaun,

Because of the way RT works on cancer cells, it is a slow process and reliable assessment can take a few monyhs to establish so not suprised your Oncologist has suggested initial period of 10 weeks for next PSA test but subequent PSA tests will also be needed to see how well treatment has worked.

I assume you also had the spinal met treated that was being done elsewhere.

Are you currently having HT as that can have a marked effect on PSA readings?

Barry
 
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