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User
Posted 01 Feb 2019 at 21:40

Hi everyone  Im just looking for some advice please  My Dad had a radical robotic prostatectomy in October of last year. After watchful waiting for 18 months.

He was told initially that he had a PSA of 12 and a gleason of 7 (3+4) but just before June 2018 his MRI he had prior to his template biopsy showed the cancer had started to break out of the prostate capsule. As he was told the cancer was not agressive he waited for his Operation until after his planned holiday. All went well with the surgery the consultant saw no need to take any lymph nodes for testing. Dad regained control of his bladder the day the catheter was removed. At his post op check in December we were floored with the news that his PSA was 8.9 and some of the cancer was a gleason 4+3 not 3+4 as he was informed previosly after his template biopsy. He also had a positive right margin. The consultant suggested he needed an urgent ?PSMA Scan but we were told there was a 4 week wait. Dad was told he would be seen in clinic approx two weeks after the scan. It is now February and he is still waiting for the scan!! He has been fobbed off for weeks with the department saying there was a backlog of patients to get through.

Eventually after contacting PALS we have been informed that the scanner is not operational at the moment due to inspectors finding fault. They aren't due to re inspect for another 4 weeks. This will take my Dad to being 19 weeks post op with no firm confirmation of where the cancer is or any care plan/treatment in place. Has anyone else ever experienced anything like this? will this wait have some impact on his prognosis? His PSA was checked by the GP two weeks ago and it is now 12. 

On a positive note he is feeling well in himself health wise, but, his mental health is suffering with all the uncertainty . 

sorry for the long post and thanks for taking the time to read it.

Suzi  

Edited by member 04 Feb 2019 at 22:09  | Reason: Not specified

User
Posted 03 Feb 2019 at 17:04

Originally Posted by: Online Community Member

 I will decline from any further posting although I do think you are not crediting the new folk using the site with the intelligence to take all the information offered and make their own minds up

Peggles - don't stop posting. We all react to posts in different ways and as you rightly point out, it is the range of views that ensures balance. If only a few people responded, the forum would quickly develop an unconscious bias. That's the main reason I refuse to engage with the private message function. 

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

User
Posted 03 Feb 2019 at 11:38
We do have quite a few men here that have had adjuvant or salvage RT without hormone treatment and it isn’t ideal to get someone onto HT before they have at least tried to pinpoint where the active cancer cells are (because the hormones could reduce the tumours and give a misleading result).

However, in this case there has been such a delay that perhaps the most important thing is to do something. I think you are being a bit harsh Bri because you are already stressing about a micro-rise and whether the onco should act ... if you had a PSA that had risen to 8.9 and then 12 and no one was doing anything, you would be beside yourself with anxiety and (I suspect) demanding every scan and hormone available.

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

User
Posted 03 Feb 2019 at 14:41
Hi Suzi

It was my oncologist who said they would not start HT until my PSA hit the 20’s. I had asked after having Adjuvant RT. The reason she gave was to avoid the toxicity for as long as possible. As I have said above if I have a recurrence and I am given this same advice I will question the decision. If I don’t get a satisfactory answer I will seek a 2nd opinion.

I apologise for the above “spat” but I was just pointing out how important it can be to query decisions others are making about our health

Take care

Bri

User
Posted 01 Feb 2019 at 22:28
How awful for you all.

I think I would scrap the idea of a PSMA scan and press for a normal one at whichever is the nearest with an operational machine. PSMA is still a niche product and very unreliable in terms of being available - but there are a number of alternative scans that he could be having.

I don't understand why they haven't banged him straight onto HT - did the surgeon actually refer him to an oncologist or is the surgeon trying to handle everything? If dad hasn't seen an onco yet, that is the most important thing to sort out first.

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

User
Posted 01 Feb 2019 at 23:30

They probably haven’t started HT as they probably don’t want it to mask anything ie so they can see if there is anything on the scan. But the waiting and delays are appalling. I think you are justified in complaining. But as Lyn says seeing an oncologist is probably the next step

Good luck

Bri 

Edited by member 01 Feb 2019 at 23:31  | Reason: Not specified

User
Posted 02 Feb 2019 at 00:14
It isn’t for the surgeon to decide whether or not he wants to involve an onco. Surgeons deal with surgery, oncologists deal with all other cancer treatments.

I would be a little bit cynical or cautious about what this surgeon is saying; it sounds like he may have an ego :-( The PSMA scan is exciting because it can pick up tiny clusters of cancer cells in men with biochemical recurrence at very low PSA levels, but that doesn’t seem to apply to your dad whose PSA is alarmingly high for a man that has just had his prostate removed. I am only guessing but the first thing to check would be his bones (unless he has already had a bone scan?) and then to go for a choline PET scan. My worry would be that the surgeon is just excited about using a new toy - but the new toy is useless if you have to wait for it.

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

User
Posted 02 Feb 2019 at 03:08
Hi Suzi,

I am also surprised that Dad's case has not been handed over to an oncologist because it seems to me that the surgeon has played his part and his interest is now mainly academic unless he considers going back in and removing lymph nodes for example..

Clearly, either the surgeon or oncologist would benefit from good quality scans in order to direct treatment more precisely but the wait for a PSMA scan has to be set against detail that could be obtained from a lesser but more quickly and readily available scan..

Unless the situation has changed radically in the last few months, I believe there are only about 6 centres in the UK doing PSMA and all of these are in the London area. Consultant's now know about this with the result that not only do those scanners serve their local area but men are being referred from all over the country, and the latter mostly as paying patients. The problem is compounded when there is a problem where the shared generator for the tracer breaks down (as happened in my case) so that all the London Hospitals were affected until the machine was fixed. So another reason for backlog and delay. With the Choline scan where the hospitals have to by in the tracer there has also been problems as a number of us have experienced and this too can lead to delays.

The going rate for a PSMA scan privately is about £2600 and a patient needs to be referred by a Consultant, not just a GP. Dad, (or you), could ring round to check costs and waiting times as a possibility, as your present surgeon could refer and 'call over' the scan. The Choline scan I believe is less expensive and available at rather more hospitals and further afield.

I would seek an urgent appointment with an Oncologist,

Barry
User
Posted 02 Feb 2019 at 11:35

A PSMA scan also covers bones and it has been postulated that when more widely available it may in due course make the separate bone scan less used. Don't know where your hospital is but interested to learn. My PSMA was done at The Paul Strickland Scanner Centre which is a separate entity within the grounds of Mount Vernon Hospital. See here for image :- https://www.stricklandscanner.org.uk/about-us/news-and-views/archive/psma

Mp MRI is available at many hospitals so I don't think that is what your surgeon can be talking about.

Edited by member 02 Feb 2019 at 11:55  | Reason: To hightight link

Barry
User
Posted 02 Feb 2019 at 12:01
The PET-PSMA scan at the Paul Strickland charity for £2600 mentioned by Barry above uses a Gallium 68 isotope tracer. I believe they do a Choline scan which is not as accurate for somewhat less, and which is more widely available on the NHS.

They offer G-68 scans on the NHS at the Royal Marsden in London and Surrey, but only if you live in its catchment area. Postcode lottery again.

The point of these scans is to pinpoint any metastases so that they can be more accurately treated with targeted radiotherapy, rather than blasting the whole area willy-nilly.

Cheers, John.

User
Posted 02 Feb 2019 at 13:13

One further thing I should mention is that one or neither of the Choline or PSMA scans work for a small number of men generally said to be 5-8%. In the case of PSMA scan it is because their PSMA does not express sufficiently. One of our members 'Chris', found this out having had both scans. PCa with so many variants and stages with sometimes differing reactions and treatment responses by individuals, adds to the problem of clinicians to do what is best for patients.

Perhaps the one referred to here http://www.southportreporter.com/756/mobile/Page-18.shtml

I wonder whether they have purchased their own 'generator' to produce the tracer or buy it in from fairly close by.  Either way it's another for the list.

Edited by member 02 Feb 2019 at 13:36  | Reason: Not specified

Barry
User
Posted 02 Feb 2019 at 16:27
As I said before, the PSMA scan is at its best in cases where the PSA shows that some cancer has been left behind but the number is still very low and other scanning tracers would not be sensitive enough. The purpose is to confirm that the cancer is in an area that can be irradiated. With post-op numbers like your dad has, a plain old simple bone scan may show quickly and easily that RT is not appropriate. With a PSA rising as fast as your dad's, the cancer is active and the sooner he is on HT the better.

The PSMA capacity is really new so the medics are bound to be excited about trying it out but that should not be at your dad's expense.

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

User
Posted 02 Feb 2019 at 21:28

I don't know what your dad's Urologist is thinking of. As others have said your dad now needs an Oncologist on his case. I just think it's awful that so many of us have to fight our loved one's corner for them. It's good that he has you looking out for him.

Stay calm and don't let them fob you off with further delays on Monday. I would even go so far as to demand the HT starts immediately. You don't need to wait for scans to be arranged first.

Good luck

Ann

User
Posted 03 Feb 2019 at 06:36
Hi Suzi1,.

I can't see any PSA history in your profile? Is it really still 8.9 6 months post op?? That would be a massive + margin so it's more likely to be systemic spread.

You really need to ask what benefit your dad will get having the psma scan and if it will help him achieve a durable remission. Time for a second opinion with an oncologist?

User
Posted 03 Feb 2019 at 10:23

Interesting link to the Southport Reporter Barry.

Is Suzi's father near Liverpool.  She's got some good advice on here,  it's surprising a surgeon can make appointments post op on such equipment although if you had to wait for an oncologist appointment to be told the same thing you might not be too happy about that either.

I recall reading someone elses comment that their Onco said they wouldn't start hormones till psa reached 20.  In theory you could probably have a bone scan within a couple of days, it's a hard call, the phone call is a good thing. All the best, keep us in touch. Peter

 

 

User
Posted 03 Feb 2019 at 12:12

 

Originally Posted by: Online Community Member
. I think you are being a bit harsh Bri because you are already stressing about a micro-rise and whether the onco should act ... if you had a PSA that had risen to 8.9 and then 12 and no one was doing anything, you would be beside yourself with anxiety and (I suspect) demanding every scan and hormone available.

I cant see how i was being harsh. I think that the medics decisions and actions or lack of should be questioned which is all i was saying. I would ask why hadnt HT been started. They may give a valid reason and they may not. If I was not happy with an answer I would seek a 2nd opinion. I think its a tad irresponsible to advise someone to demand medical intervention when we have no idea what the rationale is. 

Im not sure what this has to do with my personal situation and for the record I’m not stressed about it and certainly dont think or expect the oncol to act. I've already said i expect another test in 3 months. I would not insist on treatment if it was not offered but i would seriously question every decision as i have always done. I may ask for scans but who wouldn't. You have figured me out wrong on this occasion Lyn 

Bri

Edited by member 03 Feb 2019 at 12:14  | Reason: Not specified

User
Posted 03 Feb 2019 at 12:20

Quote:
Brianissac;21120

People should think before posting some of the non expert, well intended, advise they are giving

Bri

Don't worry Brian I will decline from any further posting although I do think you are not crediting the new folk using the site with the intelligence to take all the information offered and make their own minds up about how to go forward. I thought that was the purpose of a forum and not to shoot people down in flames the moment you disagree with a post.

Anyway as I will not be indulging in any further comments so feel free to continue to give your sage advice.


Suzi . I wish your dad and your family all the best following your call tomorrow and hope you can get his treatment underway as soon as possible.

Best regards

Ann

Edited by moderator 11 Feb 2019 at 00:43  | Reason: Not specified

User
Posted 03 Feb 2019 at 12:46

My onco elected not to give me HT prior or concurrent with SRT because he felt the increased toxicity that HT can cause would have an effect on my existing stricture and further planned surgery. On reoccurrence my PSA only rose to around 0.27 and it was assumed to be in the prostate bed.

Thanks Chris

Edited by moderator 11 Feb 2019 at 00:43  | Reason: Not specified

User
Posted 03 Feb 2019 at 12:51

Dear Suzi

Please ignore this little spat, it happens sometimes amongst people who are stressed, me included (I’ve had my moments). Wishing you a successful call tomorrow and a good outcome.

Love Devonmaid xxxx

User
Posted 03 Feb 2019 at 16:56
There is a difference between taking action when there is evidence of active cancer post-op and moving onto permanent HT when there is recurrence post-salvage treatment and there are no more curative options.

NICE defines 0.2 as the point at which adjuvant or salvage treatment should commence in post-op recurrence.

For men that have had surgery and RT, some oncos would delay permanent HT until 5 or 10 - Bri's onco and one other on here have stated 20 ( in their soecific cases). This is because HT has a limited life span so the earlier it starts, the sooner it will stop working.

The 5, 10 or 20 benchmark is not relevant to your dad.

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

User
Posted 03 Feb 2019 at 18:26

Originally Posted by: Online Community Member
There is a difference between taking action when there is evidence of active cancer post-op and moving onto permanent HT when there is recurrence post-salvage treatment and there are no more curative options.

NICE defines 0.2 as the point at which adjuvant or salvage treatment should commence in post-op recurrence.

For men that have had surgery and RT, some oncos would delay permanent HT until 5 or 10 - Bri's onco and one other on here have stated 20 ( in their soecific cases). This is because HT has a limited life span so the earlier it starts, the sooner it will stop working.

The 5, 10 or 20 benchmark is not relevant to your dad.

I agree but I stand by my earlier post that telling people to demand treatment is not helpful 

Bri

User
Posted 04 Feb 2019 at 18:16

Thank you everyone for all your advice and support. 

Before I could call today the hospital contacted Dad with an appointment for tomorrow for a scan. He didn't say what he was having but it takes quite a few hours all in. 

I will keep you all updated with his journey.

Lots of Love and positive thoughts to you all

Suzi xx

User
Posted 04 Feb 2019 at 19:03

Yes it's good how they ring out of the blue. I was asked to attend one appointment within 2hrs but I definitely wasn't complaining, and my scans and pre-op had only a couple of days notice.

Perhaps they've been reading this thread.

All the best Peter

Edited by member 04 Feb 2019 at 19:11  | Reason: Other thoughts

Show Most Thanked Posts
User
Posted 01 Feb 2019 at 22:28
How awful for you all.

I think I would scrap the idea of a PSMA scan and press for a normal one at whichever is the nearest with an operational machine. PSMA is still a niche product and very unreliable in terms of being available - but there are a number of alternative scans that he could be having.

I don't understand why they haven't banged him straight onto HT - did the surgeon actually refer him to an oncologist or is the surgeon trying to handle everything? If dad hasn't seen an onco yet, that is the most important thing to sort out first.

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

User
Posted 01 Feb 2019 at 23:21

Thank you so much for your reply. 

We have no idea if he wants to refer to an onco. He did say that maybe it could be around the prostate bed and that salvage radiation may be an option, he did also mention HT if mets. Said he would decide the way forward after the scan. I spoke today with a nurse and asked for Dad to have the usual scans to be told the scanner they want to use is very specific and much better than the usual, (ironically its out of use). I said he should be referred elsewhere if they are adamant he is to have it.  To be honest we weren’t expecting the news as he said it will be cut out and put in the bin and gone! 

Im feeling a formal complaint is needed. 

Suzi 

User
Posted 01 Feb 2019 at 23:30

They probably haven’t started HT as they probably don’t want it to mask anything ie so they can see if there is anything on the scan. But the waiting and delays are appalling. I think you are justified in complaining. But as Lyn says seeing an oncologist is probably the next step

Good luck

Bri 

Edited by member 01 Feb 2019 at 23:31  | Reason: Not specified

User
Posted 01 Feb 2019 at 23:52

Thanks Bri 

I will contact the hospital again on Monday and ask why he hasn’t been referred to an onco  

I will keep this post updated  

Take Care 

Suzi

User
Posted 02 Feb 2019 at 00:14
It isn’t for the surgeon to decide whether or not he wants to involve an onco. Surgeons deal with surgery, oncologists deal with all other cancer treatments.

I would be a little bit cynical or cautious about what this surgeon is saying; it sounds like he may have an ego :-( The PSMA scan is exciting because it can pick up tiny clusters of cancer cells in men with biochemical recurrence at very low PSA levels, but that doesn’t seem to apply to your dad whose PSA is alarmingly high for a man that has just had his prostate removed. I am only guessing but the first thing to check would be his bones (unless he has already had a bone scan?) and then to go for a choline PET scan. My worry would be that the surgeon is just excited about using a new toy - but the new toy is useless if you have to wait for it.

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

User
Posted 02 Feb 2019 at 00:30

I think you may be right about the ego and playing with a new toy!! 

I feel so sorry for my Dad, Im sure he thinks he is as he says 'done for' 😢😢

User
Posted 02 Feb 2019 at 03:08
Hi Suzi,

I am also surprised that Dad's case has not been handed over to an oncologist because it seems to me that the surgeon has played his part and his interest is now mainly academic unless he considers going back in and removing lymph nodes for example..

Clearly, either the surgeon or oncologist would benefit from good quality scans in order to direct treatment more precisely but the wait for a PSMA scan has to be set against detail that could be obtained from a lesser but more quickly and readily available scan..

Unless the situation has changed radically in the last few months, I believe there are only about 6 centres in the UK doing PSMA and all of these are in the London area. Consultant's now know about this with the result that not only do those scanners serve their local area but men are being referred from all over the country, and the latter mostly as paying patients. The problem is compounded when there is a problem where the shared generator for the tracer breaks down (as happened in my case) so that all the London Hospitals were affected until the machine was fixed. So another reason for backlog and delay. With the Choline scan where the hospitals have to by in the tracer there has also been problems as a number of us have experienced and this too can lead to delays.

The going rate for a PSMA scan privately is about £2600 and a patient needs to be referred by a Consultant, not just a GP. Dad, (or you), could ring round to check costs and waiting times as a possibility, as your present surgeon could refer and 'call over' the scan. The Choline scan I believe is less expensive and available at rather more hospitals and further afield.

I would seek an urgent appointment with an Oncologist,

Barry
User
Posted 02 Feb 2019 at 10:09

Thank you Barry. Im wondering if he hasn't been referred to the onc until scan results are in? Seems pretty common practice to do refer tho, Im starting to get even more annoyed and concerned with the sitation now. 

Is the PSMA scanner the one that also includes a bone scan at the same time? 

 

Im wondering if Im getting confused about which scan he is to have. Could it be an MP MRI? 

The consultant was ’delighted’ to offer the scan to Dad saying it was the only one of it's kind in our area and not even the regional cancer hospital has one! 

Dad had offered to pay privatley before we knew it had been shut down for safety reasons, and was told 'you will be seen soon it would be a-shame to waste your money' 

Take Care 

Suzi

Edited by member 02 Feb 2019 at 10:16  | Reason: Not specified

User
Posted 02 Feb 2019 at 11:35

A PSMA scan also covers bones and it has been postulated that when more widely available it may in due course make the separate bone scan less used. Don't know where your hospital is but interested to learn. My PSMA was done at The Paul Strickland Scanner Centre which is a separate entity within the grounds of Mount Vernon Hospital. See here for image :- https://www.stricklandscanner.org.uk/about-us/news-and-views/archive/psma

Mp MRI is available at many hospitals so I don't think that is what your surgeon can be talking about.

Edited by member 02 Feb 2019 at 11:55  | Reason: To hightight link

Barry
User
Posted 02 Feb 2019 at 12:01
The PET-PSMA scan at the Paul Strickland charity for £2600 mentioned by Barry above uses a Gallium 68 isotope tracer. I believe they do a Choline scan which is not as accurate for somewhat less, and which is more widely available on the NHS.

They offer G-68 scans on the NHS at the Royal Marsden in London and Surrey, but only if you live in its catchment area. Postcode lottery again.

The point of these scans is to pinpoint any metastases so that they can be more accurately treated with targeted radiotherapy, rather than blasting the whole area willy-nilly.

Cheers, John.

User
Posted 02 Feb 2019 at 13:03

Thanks Barry 

It must be the PSMA Scan then. Dad is being treated in Liverpool  

 

User
Posted 02 Feb 2019 at 13:06

Thanks for your info John. Everyone has been very helpful.

I think first thing Monday I will be speaking to the hospital and maybe seeking advice from Dad’s GP.

Take Care

Suzi  

User
Posted 02 Feb 2019 at 13:13

One further thing I should mention is that one or neither of the Choline or PSMA scans work for a small number of men generally said to be 5-8%. In the case of PSMA scan it is because their PSMA does not express sufficiently. One of our members 'Chris', found this out having had both scans. PCa with so many variants and stages with sometimes differing reactions and treatment responses by individuals, adds to the problem of clinicians to do what is best for patients.

Perhaps the one referred to here http://www.southportreporter.com/756/mobile/Page-18.shtml

I wonder whether they have purchased their own 'generator' to produce the tracer or buy it in from fairly close by.  Either way it's another for the list.

Edited by member 02 Feb 2019 at 13:36  | Reason: Not specified

Barry
User
Posted 02 Feb 2019 at 15:54

Yes Barry its for sure the PSMA. Interesting to learn it may still not discover anything. I dont want to say too much on here as I would hate to be speaking out of turn. We have been told tho that this scan will not be available for at least 4 more weeks until the inspectors have been back in.

you have been very helpful thank you so much  

User
Posted 02 Feb 2019 at 16:27
As I said before, the PSMA scan is at its best in cases where the PSA shows that some cancer has been left behind but the number is still very low and other scanning tracers would not be sensitive enough. The purpose is to confirm that the cancer is in an area that can be irradiated. With post-op numbers like your dad has, a plain old simple bone scan may show quickly and easily that RT is not appropriate. With a PSA rising as fast as your dad's, the cancer is active and the sooner he is on HT the better.

The PSMA capacity is really new so the medics are bound to be excited about trying it out but that should not be at your dad's expense.

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

User
Posted 02 Feb 2019 at 17:31

Thank you Lyn for your honest and frank post,  I totally agree with you.

The consultant is aware that Dad’s PSA is rising and Im very concerned he hasn’t put a plan in action  

I have a lot to say when I ring on Monday. 

I think I have just wanted reassurance that Im not just acting as a concerned Daughter, and that I have valid points. 

My Dad is my world I only want for him what he deserves. 

Suzi

User
Posted 02 Feb 2019 at 21:28

I don't know what your dad's Urologist is thinking of. As others have said your dad now needs an Oncologist on his case. I just think it's awful that so many of us have to fight our loved one's corner for them. It's good that he has you looking out for him.

Stay calm and don't let them fob you off with further delays on Monday. I would even go so far as to demand the HT starts immediately. You don't need to wait for scans to be arranged first.

Good luck

Ann

User
Posted 03 Feb 2019 at 06:36
Hi Suzi1,.

I can't see any PSA history in your profile? Is it really still 8.9 6 months post op?? That would be a massive + margin so it's more likely to be systemic spread.

You really need to ask what benefit your dad will get having the psma scan and if it will help him achieve a durable remission. Time for a second opinion with an oncologist?

User
Posted 03 Feb 2019 at 09:30

Thank you Ann 

I have been given some fantastic advice from you all. 

I wont be getting angry on Monday (even though I am furious hurt and feel my Dad had massively been let down) but I will be insistent. 

Twice now he has been told someone would phone him back the same day and twice no one has. Its a common courtesy to telephone a patient back even if there is no news if you have told them you will do so. 

Take Care 

Suzi 

User
Posted 03 Feb 2019 at 09:37

Originally Posted by: Online Community Member

I don't know what your dad's Urologist is thinking of. As others have said your dad now needs an Oncologist on his case. I just think it's awful that so many of us have to fight our loved one's corner for them. It's good that he has you looking out for him.

Stay calm and don't let them fob you off with further delays on Monday. I would even go so far as to demand the HT starts immediately. You don't need to wait for scans to be arranged first.

Good luck

Ann

 

I think it may be better to query why HT has not started rather than advising someone to demand they start it. We dont  know all the history and there may be a valid reason why they havent started it. Do you really know they dont have to wait for scans to be arranged first?

Bri 

User
Posted 03 Feb 2019 at 09:46

Francij1 

Thank you for your response 

Dads PSA was actually 8.9 8 weeks post op. 10 at 10 weeks and 12 at 12 weeks 😢

Obviously it is active and we are concerned  

He was diagnosed in 2016 with a PSA of 12 and it stayed at 12 until his operation

He only had a PSA test due to Doctors ruling out other health issues which have since resolved. He had no symptoms to indicate any problems with his prostate and still didn’t upto the day of his surgery. 

Suzi 

User
Posted 03 Feb 2019 at 10:23

Interesting link to the Southport Reporter Barry.

Is Suzi's father near Liverpool.  She's got some good advice on here,  it's surprising a surgeon can make appointments post op on such equipment although if you had to wait for an oncologist appointment to be told the same thing you might not be too happy about that either.

I recall reading someone elses comment that their Onco said they wouldn't start hormones till psa reached 20.  In theory you could probably have a bone scan within a couple of days, it's a hard call, the phone call is a good thing. All the best, keep us in touch. Peter

 

 

User
Posted 03 Feb 2019 at 10:27

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

 

 

I think it may be better to query why HT has not started rather than advising someone to demand they start it. We dont  know all the history and there may be a valid reason why they havent started it. Do you really know they dont have to wait for scans to be arranged first?

Bri 

Hi Brian, . I have not seen anyone on here not go down the HT Route where their cancer has  recurred ( or more often not been contained excepting men who refuse it for their own reasons)

Lyn has said the sooner he is on it the better but you don't criticize  her. To me it at least seems to me to be a good holding option on the cancer whilst they are dilly dallying with Suzi's dad's treatment.  Please feel free to explain what you think are the valid reasons for not giving HT whilst he waits for scans.

Yes maybe to use the word " demand " is a bit strong but I get passionate when I feel people are being short changed. I am probably best just leaving the advice to the few experts on here like you Brian rather than engaging in a game of one upmanship.

User
Posted 03 Feb 2019 at 11:38
We do have quite a few men here that have had adjuvant or salvage RT without hormone treatment and it isn’t ideal to get someone onto HT before they have at least tried to pinpoint where the active cancer cells are (because the hormones could reduce the tumours and give a misleading result).

However, in this case there has been such a delay that perhaps the most important thing is to do something. I think you are being a bit harsh Bri because you are already stressing about a micro-rise and whether the onco should act ... if you had a PSA that had risen to 8.9 and then 12 and no one was doing anything, you would be beside yourself with anxiety and (I suspect) demanding every scan and hormone available.

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

User
Posted 03 Feb 2019 at 11:56

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

 

 

I think it may be better to query why HT has not started rather than advising someone to demand they start it. We dont  know all the history and there may be a valid reason why they havent started it. Do you really know they dont have to wait for scans to be arranged first?

Bri 

Hi Brian, . I have not seen anyone on here not go down the HT Route where their cancer has  recurred ( or more often not been contained excepting men who refuse it for their own reasons)

Lyn has said the sooner he is on it the better but you don't criticize  her. To me it at least seems to me to be a good holding option on the cancer whilst they are dilly dallying with Suzi's dad's treatment.  Please feel free to explain what you think are the valid reasons for not giving HT whilst he waits for scans.

Yes maybe to use the word " demand " is a bit strong but I get passionate when I feel people are being short changed. I am probably best just leaving the advice to the few experts on here like you Brian rather than engaging in a game of one upmanship.

 

but thats exactly my point.We are not experts at all. As i said we dont know the full history. I never said i knew there are valid reasons, if you read my post properly you will see i said there may be valid reasons... but that is something only the medics will know which is why i said it may be better to query this. Oh and im not playing a game of one upmanship I just think people should think before posting some of the non expert, well intended, advise they are giving 

Bri

Edited by member 03 Feb 2019 at 11:58  | Reason: Not specified

User
Posted 03 Feb 2019 at 12:12

 

Originally Posted by: Online Community Member
. I think you are being a bit harsh Bri because you are already stressing about a micro-rise and whether the onco should act ... if you had a PSA that had risen to 8.9 and then 12 and no one was doing anything, you would be beside yourself with anxiety and (I suspect) demanding every scan and hormone available.

I cant see how i was being harsh. I think that the medics decisions and actions or lack of should be questioned which is all i was saying. I would ask why hadnt HT been started. They may give a valid reason and they may not. If I was not happy with an answer I would seek a 2nd opinion. I think its a tad irresponsible to advise someone to demand medical intervention when we have no idea what the rationale is. 

Im not sure what this has to do with my personal situation and for the record I’m not stressed about it and certainly dont think or expect the oncol to act. I've already said i expect another test in 3 months. I would not insist on treatment if it was not offered but i would seriously question every decision as i have always done. I may ask for scans but who wouldn't. You have figured me out wrong on this occasion Lyn 

Bri

Edited by member 03 Feb 2019 at 12:14  | Reason: Not specified

User
Posted 03 Feb 2019 at 12:20

Quote:
Brianissac;21120

People should think before posting some of the non expert, well intended, advise they are giving

Bri

Don't worry Brian I will decline from any further posting although I do think you are not crediting the new folk using the site with the intelligence to take all the information offered and make their own minds up about how to go forward. I thought that was the purpose of a forum and not to shoot people down in flames the moment you disagree with a post.

Anyway as I will not be indulging in any further comments so feel free to continue to give your sage advice.


Suzi . I wish your dad and your family all the best following your call tomorrow and hope you can get his treatment underway as soon as possible.

Best regards

Ann

Edited by moderator 11 Feb 2019 at 00:43  | Reason: Not specified

User
Posted 03 Feb 2019 at 12:46

My onco elected not to give me HT prior or concurrent with SRT because he felt the increased toxicity that HT can cause would have an effect on my existing stricture and further planned surgery. On reoccurrence my PSA only rose to around 0.27 and it was assumed to be in the prostate bed.

Thanks Chris

Edited by moderator 11 Feb 2019 at 00:43  | Reason: Not specified

User
Posted 03 Feb 2019 at 12:51

Dear Suzi

Please ignore this little spat, it happens sometimes amongst people who are stressed, me included (I’ve had my moments). Wishing you a successful call tomorrow and a good outcome.

Love Devonmaid xxxx

User
Posted 03 Feb 2019 at 13:36

Hi Peter 

Yes we are near Liverpool and Dad is being treated there.

I think my main concern in all of this is that the consultant mentioned Salvage RT a possibility but obviously wanted scans before hand. We are concerned if it has become unsalvageable now.

He was very excited to offer the new PSMA scan and said it would pick up micro mets as Dad's PSA was above 8. He was very shocked that Dads PSA was even detectable as his scans prior showed it had reached the prostate wall but there were no signs of any spread. Dad asked if he could go on his planned holiday before the op or if it was best to cancel. He was told 'go on your holiday it has taken years to get to this size' Dad asked again if it would be ok and was told 'go and enjoy your holiday, when you come back we will get you in put it in the bin and its gone' We totally understand he isn't a magician and cant predict the future, but, we were totally floored when he told us it was a more aggressive than first thought. 

We are worrying as the PSA level is rising every two weeks, prior to his op it was fluctuating between 10 & 12 for 18 months.

Interesting to read about not starting HT until PSA reaches 20.

I just feel Dad has been left hanging in all of this and isn't getting any straight answers.

Take Care, I will keep you all posted.

Thank God for this community

Suzi  

User
Posted 03 Feb 2019 at 14:41
Hi Suzi

It was my oncologist who said they would not start HT until my PSA hit the 20’s. I had asked after having Adjuvant RT. The reason she gave was to avoid the toxicity for as long as possible. As I have said above if I have a recurrence and I am given this same advice I will question the decision. If I don’t get a satisfactory answer I will seek a 2nd opinion.

I apologise for the above “spat” but I was just pointing out how important it can be to query decisions others are making about our health

Take care

Bri

User
Posted 03 Feb 2019 at 16:56
There is a difference between taking action when there is evidence of active cancer post-op and moving onto permanent HT when there is recurrence post-salvage treatment and there are no more curative options.

NICE defines 0.2 as the point at which adjuvant or salvage treatment should commence in post-op recurrence.

For men that have had surgery and RT, some oncos would delay permanent HT until 5 or 10 - Bri's onco and one other on here have stated 20 ( in their soecific cases). This is because HT has a limited life span so the earlier it starts, the sooner it will stop working.

The 5, 10 or 20 benchmark is not relevant to your dad.

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

User
Posted 03 Feb 2019 at 17:04

Originally Posted by: Online Community Member

 I will decline from any further posting although I do think you are not crediting the new folk using the site with the intelligence to take all the information offered and make their own minds up

Peggles - don't stop posting. We all react to posts in different ways and as you rightly point out, it is the range of views that ensures balance. If only a few people responded, the forum would quickly develop an unconscious bias. That's the main reason I refuse to engage with the private message function. 

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

User
Posted 03 Feb 2019 at 18:26

Originally Posted by: Online Community Member
There is a difference between taking action when there is evidence of active cancer post-op and moving onto permanent HT when there is recurrence post-salvage treatment and there are no more curative options.

NICE defines 0.2 as the point at which adjuvant or salvage treatment should commence in post-op recurrence.

For men that have had surgery and RT, some oncos would delay permanent HT until 5 or 10 - Bri's onco and one other on here have stated 20 ( in their soecific cases). This is because HT has a limited life span so the earlier it starts, the sooner it will stop working.

The 5, 10 or 20 benchmark is not relevant to your dad.

I agree but I stand by my earlier post that telling people to demand treatment is not helpful 

Bri

User
Posted 04 Feb 2019 at 18:16

Thank you everyone for all your advice and support. 

Before I could call today the hospital contacted Dad with an appointment for tomorrow for a scan. He didn't say what he was having but it takes quite a few hours all in. 

I will keep you all updated with his journey.

Lots of Love and positive thoughts to you all

Suzi xx

User
Posted 04 Feb 2019 at 19:03

Yes it's good how they ring out of the blue. I was asked to attend one appointment within 2hrs but I definitely wasn't complaining, and my scans and pre-op had only a couple of days notice.

Perhaps they've been reading this thread.

All the best Peter

Edited by member 04 Feb 2019 at 19:11  | Reason: Other thoughts

User
Posted 04 Feb 2019 at 19:57

It seems crazy to say I’m pleased to hear this, but I am! 

good luck

Love Devonmaid xxx

User
Posted 04 Feb 2019 at 22:00

Thank you Devonmaid. I know exactly what you mean.

At least now Dad can get some answers and know exactly what he is dealing with.

He said the not knowing is making him ill, otherwise he feels very well in himself.

Suzi xxx

 
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