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User
Posted 28 Apr 2022 at 15:14

Good luck.  I just re-read your profile it's quite a story.  All the best, Peter

User
Posted 28 Apr 2022 at 19:06
Chris and Chris, you haven't defeated it but you keep it sieged. Stay strong!!

Best wishes.

Lola

User
Posted 17 May 2022 at 19:12

 Latest PSA now up to 1.4 and based on my spreadsheet rising faster in the last few months than in previous years. I had a meeting today with the oncologist's registrar and my trials nurse. The recent CT and bone scan that are part of the trial do not show anything. The consultant radiologist told me recently that the  threshold for a PSMA scan had been dropped from 0.5 to 0.3 due to better results being obtained, i assume that applied to our hospital. 

A PSMA pet is now being organised. Does anyone know what is the minimum and maximum number of areas that can be treated if anything is found.

The data for the world wide vaccine trial is now being processed and should be reported by late May or early June. As i have said before I suspect I was on the placebo.

 

Glad to see Lyn is back.

 

Thanks Chris

 
User
Posted 17 May 2022 at 19:39

I think like everything else, it varies between oncos / hospitals. John was told by Mr B that he could have SABR if one or two hotspots were identified, others seem to be told that 3 is the max. Then there was that guy who posted that he has had a number of spots zapped, plus had a rib and a vertebra removed and I think a leg bone? I wonder if he is still alive?

Edited by member 17 May 2022 at 21:48  | Reason: typo

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

User
Posted 17 May 2022 at 19:54
Maybe this can help you?

https://ascopubs.org/doi/full/10.1200/edbk_239041

Best,

Lola

User
Posted 17 May 2022 at 22:04

I'll add something: I've read that having five spots or less is considered "oligometastasy" and can be treated, but as Lynn said above, I guess it depends on the doctor, hospital, patient, location of the spots and criteria in general.

 

User
Posted 17 May 2022 at 22:16

Lola, thanks for the info, lots there to digest and understand, but I did gleen some information from it.

Lyn , I had it in my head it was a maximum of three. What threw me was a comment from the trial nurse after the oncologist left, that if there was only one spot found, that would not be treated with RT.

Thanks Chris

Edited by member 17 May 2022 at 22:18  | Reason: Not specified

User
Posted 23 May 2022 at 12:52

I recently received an email from one of my GPs that said a PSA of 0.99 was normal. I previously was told be a clinician that 0.3 was not biochemical recurrence. Another GP asked why I was having a PSA test if I didn't have a prostate. The receptionist sent me an email that said any PSA between 0.& 4 was acceptable.

Can anyone point me in the direction of a NHS document that defines BCR after surgery and follow up salvage RT. 

I have an appointment with one of the senior GPs in a few days time and would like her to educate her staff. I may escalate this to a higher level.

Thanks Chris

User
Posted 23 May 2022 at 14:02

So sorry I can't help you as I don't think my hub's report in Spain is any good in this case.

I encourage you to go as far as "impossible" and I am confident you'll finally get to be properly treated, as you deserve and are entitled to. Apparently you happen to have come across an insensible group of professionals, but I know that, luckily, NHS works pretty well. 

Looking forward to some good news from you soon.

Best,

Lola.

User
User
Posted 23 May 2022 at 14:20

Unfortunately Chris's issues are widespread in the NHS...

 

User
Posted 23 May 2022 at 14:33

I'm afraid everywhere there is a lot going on. 

At least, Chris has now a formal evidence that he's being mistreated and can fight with a strong argument.

User
Posted 23 May 2022 at 16:37

Francij1, thanks for the link, because we live with prostate cancer hopefully we understand what it all means. I do however see lots of guys on another forum telling post prostatectomy guys that thier PSA is great, even when it is above 0.2. 

Thanks Chris.

 

User
Posted 23 May 2022 at 16:46

Lola, thanks for the reply, fortunately because of forums like this I/ we am aware of what is a good and not so good result for ourselves. Alot is being done to make men aware of getting tested and treated. I wonder how many men will die of prostate cancer because the follow up care is lacking.

Thanks Chris

User
Posted 23 May 2022 at 23:29

You're right, Chris. And what is more, I'm afraid physicians sometimes focus on statistics, budget, live expectancy or social economy, on the scientific argument that PC growth is slow, or under the statement that "many men die WITH PC, not BECAUSE OF PC. I mean statistics are insensitive given the fact that figures happen to be persons: you, my husband, whoever...

When Paco was operated, five years ago, everything was right. The uro said "no concern as long as PSA is below 0.4 . This is the way we work." Nevertheless, we kept getting as much knowledge as possible on sites like this. Over time his PSA rose to 0.19 and then 0.33 . At that very moment, the uro who was currently following my hub's evolution referred him to onco. A PSMA TAC showed two spots.

In a few hours, Tuesday May 24 he's receiving the first IMRT sesión, apparently heading to cure. 

A bit nervous right now, I can't go to sleep.

 

User
Posted 23 May 2022 at 23:45

Lola, hope the treatment is successful for Paco.

Thanks Chris

User
Posted 29 May 2022 at 20:15

☹️

Looks like the vaccine trial I was on has failed to meet expectations. Not sure if I was on the placebo or the drug. I do get to find out later. 

Thanks Chris 

User
Posted 29 May 2022 at 20:28

So sorry, Chris. You were looking forward to taking this trial, but heaven knows what the outcome would have been. On the other hand, as you say, your ignore whether you were in the blind or not. This given, now I wish you were included on the placebo🤷‍♀️Do not get frustrated. 

XX Lola

 

Edited by member 29 May 2022 at 21:51  | Reason: Wrong word

User
Posted 29 May 2022 at 22:38

Sorry to hear this Chris. Hope you get to find out soon and hope they can get a further treatment plan sorted for you x

User
Posted 29 May 2022 at 23:35
I think this is no great shock to you as you already suspected that you were either on the placebo or that the vaccine was not working for you? Disappointing for the trial team though and for future patients 😕
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 May 2022 at 08:44
Any news on the PSMA scan yet?
User
Posted 30 May 2022 at 15:48

Francij, I will be chasing that this morning when I speak to the trials nurse,we have health insurance so will be talking to them today as well.

 

Added.

 

PSMA will be around the end of June , if I go down the private route it would be at the same facility but slightly later. There is a backlog due to production problems with the injection material.

 

 

 

Thanks Chris

User
Posted 30 May 2022 at 16:45

This video on Oligometastasis  has been shown on this forum several times previously but may be of interst to newer members. The 68 gallium PSMA scan is now generally regarded as superior to the Choline one referred to here but otherwise this is very interesting when past the preliminaries. https://www.youtube.com/watch?v=60P98QLWf70

 

Edited by member 30 May 2022 at 21:27  | Reason: to highlight link

Barry
User
Posted 30 May 2022 at 21:22

Barry, thanks for that, well worth the watch, the follow on video is quite good and explains the different tracers? 

Thanks Chris 

User
Posted 31 May 2022 at 10:52

Originally Posted by: Online Community Member

 The consultant radiologist told me recently that the  threshold for a PSMA scan had been dropped from 0.5 to 0.3 due to better results being obtained, i assume that applied to our hospital. 

 

Thanks Chris

 

Hi Chris

that is news as I've been told they wouldnt consider a PMSA before the PSA hit at least 1. What Trust are you under as i will  mention this to my oncologist next month

Hope you are well

Bri 

User
Posted 31 May 2022 at 11:22
Hospitals can make their judgements at the point of testing and could be influenced by how individuals present. There is going to be a better chance of finding tumours as PSA increases. My RT treating hospital in Heidelberg, who in conjunction with the dkfz initiated the 68 Gallium PSMA scan, suggested 0.70 to me but we know there have been cases where tumours have been detected below this, so it seems an abitrary figure. It is quite an expensive scan and not widely available, so if paid for privately you could likely have it when PSA was lower, whereas if provided on the NHS some hospitals/consultants may well set the bar higher.
Barry
User
Posted 31 May 2022 at 11:43
That's the case of OH. Not even the insurance did pay for the PSMA, but we did it out of pocket. At 0.3 PSA two spots were clearly shown; therefore he is now on IMRT.

Apparently it's the contrast injection that makes it so expensive. In addition, the product isn't always available for delivery. OH waited a few days until he was called.

User
Posted 31 May 2022 at 13:20

Bri, under Nottinghamshire, they do have their own scanner at our Hospital. My my Onco was talking 2, 4 or even 8 before a scan.I had already decided to ask for a change of oncologist. As it happened his registrar saw me and they had agreed to do the scan at 1.4.

Hope you are keeping well.

Thanks Chris 

 

User
Posted 31 May 2022 at 22:11

Originally Posted by: Online Community Member
Hospitals can make their judgements at the point of testing and could be influenced by how individuals present. There is going to be a better chance of finding tumours as PSA increases. My RT treating hospital in Heidelberg, who in conjunction with the dkfz initiated the 68 Gallium PSMA scan, suggested 0.70 to me but we know there have been cases where tumours have been detected below this, so it seems an abitrary figure. It is quite an expensive scan and not widely available, so if paid for privately you could likely have it when PSA was lower, whereas if provided on the NHS some hospitals/consultants may well set the bar higher.

Barry how do you arrange a private scan in   Heidelberg a d have you any idea of a ball park figure cost. 
cheers

Bri

User
Posted 08 Jun 2022 at 18:21

Hi guys, having a nightmare with a private dentist which as come about because of a change of ownership and contract dispute. I have spoke to Denplan and following their advice. I am facing a possible £4-5k  to get my teeth back into shape. As you probably know getting an NHS dentist is not easy. 111 will refer in an emergency but not for routine, as far as I am aware.

Has anyone managed to get NHS treatment and referral because of having cancer and who did you contact. In between treatments so not sure how it works.

Thanks Chris 

User
Posted 08 Jun 2022 at 22:33
Why so much??
User
Posted 08 Jun 2022 at 22:47

6 root canal fillings at £650 each ,plus £80 for an assessment , an extraction and a few normal fillings.

My dentist says he normally charges £750 for a root canal.

Thanks Chris 

User
Posted 09 Jun 2022 at 04:22
I'm with Denplan and it's always been pain free financially, why won't they pay??

No idea re NHS my old NHS dentist just disappeared one day, went private for £20 a month which includes the hygienist. I have had a crown, an extraction and a couple of fillings in the 5 years I have been there.

User
Posted 09 Jun 2022 at 06:41

Originally Posted by: Online Community Member
I'm with Denplan and it's always been pain free financially, why won't they pay??

No idea re NHS my old NHS dentist just disappeared one day, went private for £20 a month which includes the hygienist. I have had a crown, an extraction and a couple of fillings in the 5 years I have been there.

Wait till you have a dispute, you will soon be told your contract is between you and the dentist. 

Do you have a contract that lists what is and isn't included. 

Thanks Chris 

User
Posted 09 Jun 2022 at 21:47
My wife’s dentist drives a Maserati. Not being flippant mate I’m sorry. I packed in Denplan when I thought I was going to be dead in a year. But my dentist kept me on and has done work very reasonably.

Even when I was with Denplan and needed a root canal it still involved significant cost for lab fees etc

User
Posted 10 Jun 2022 at 22:41
If you are having root treatment of back molar teeth you will normally need a crown as well to protect it from breaking. Thats probably where the lab bill comes from when you had root treatment. otherwise root treatment doesn't have a lab bill.

If you have been paying in to denplan then routine treatment like fillings/extractions/ root treat treatment should be covered. For crowns/dentures you only pay the laboratory cost.

Chris unless you have complex treatment or complex medical history which cannot be managed in general practice, then you are unlikely to be referred to a nhs dental hosptial.

User
Posted 11 Jun 2022 at 11:12

Peanuts,  thanks for the reply, my dentist and the company I pay my fees to, are saying root canal fillings are not covered by the plan. In four separate documents it says root canal work is included. If you Google the fee company it keeps says ,if you need root canal treatment rest assured, it is covered. I can see this finishing up in a legal battle, the last thing you need with a third recurrence.

The charge is purely root canal work, there is a bridge attached to the root canal tooth which is now at risk of becoming detached. Despite three requests for an urgent appointment they have been ignored. The company I pay the fees to say I must go through the dentists complaints before they get involved. Following a letter handed in on Thursday, I did get a phone call yesterday, it all gets a bit complicated but I have an appointment for reassessment by another dentist within the practice on Thursday. 

I did get in touch with Maggies and they basically said there are no shortcuts to an NHS dentist for non urgent care. 

Just to add to the fun my neighbour had a root canal filling done without charge and he is on the same care plan as me,not the same dentist.

Just to note, those of us on dentist  maintenance packages, we have probably not had our normal treatment and cleans etc during covid and I suspect many of us have teeth that will be in a worse state than they were pre COVID. Dentists will be reassessing the condition of a patient's teeth and downgrading the oral health score and charging a higher fee.

Glad my dentist isn't a urologist.

Thanks Chris 

Edited by member 11 Jun 2022 at 11:14  | Reason: Spelling

User
Posted 11 Jun 2022 at 11:30
Hi Chris, I am with Denplan and had a root canal a couple of years ago - wasn't charged any extra for it. Our dentist has continued to see us both (in a full hazmat suit) for routine checks ever since they were allowed to reopen in summer 2020
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jun 2022 at 13:03
I’m with denplan and am not charged any extra ,but they do offer different plans that only offer checkups but not major dental

work so maybe you are on one of those plans . I pay £31 a month .

Hope this helps

Debby

User
Posted 11 Jun 2022 at 14:20

Debby, definitely care + supplementary insurance, around a similar price to yourself.

Thanks Chris 

 

User
Posted 11 Jun 2022 at 20:01
Hi Chris

Just had a quick look at the dentist section on Denplans website and it seems like root canal treatment may be optional and at the discretion of the original dentist that signed you up. If that was the case then they should have told you that root treatment is excluded and priced accordingly. Do you have any of the original documents from when you signed up. You should have a strong case.

Root treatment can be technically challenging and time consuming. The dentist may not feel confident doing it and/or feel that it is not economically worth while, so denplan gives them this options to opt out. But it should be clearly stated.

(cut and paste from denplan dentist section)

What does Denplan Care include?

Dental check-ups (as clinically necessary)

Dental hygiene visits (as clinically necessary)

Dental x-rays

Necessary fillings

Necessary extractions

Periodontal treatment

Preventive dental advice and therapy

Crowns, dentures and bridgework (excluding lab fees)

Root canal treatment (optional)

What’s not included with Denplan Care?

Lab fees / prescriptions

Any treatments you've excluded from your patients' plan contract

good luck and hope that helps

User
Posted 11 Jun 2022 at 20:56

Peanuts, thanks for the info, that is what I have already been told by Denplan and I have told them root canal work was included in the original plan, I then get the reply your contract is between you and your dentist. I then point out that the contract also states they will intervene in the case of a dispute, they reply yes but only after you go through the dentists complaints procedure, grrrr.

The dentist who sold the business used to use the dentist who has bought the business to do the root canal work. I still have the original contract that says it may include root canal work, the "excluded treatment" box on the contract is blank, attached to the contract is a list of charges and against root canal treatment it says "included" ,lab fees etc is show as "chargeable". 

My wife had a root canal filling prior to this dentist taking over and was not charged for the root work. 

I was given a list of treatment requirements by the original dentist that makes no mention of charges, why would it they were included. That work would now be charged at £2250.

They are now trying to say I did not have the work done in a timely manner so I have to pay for the work. What actually happened was the dentist who did the examination and was to do the work kept fiddling with his mask and at one point took the mask of to refit it, these were the flimsy blue masks and it was in the height of COVID. I asked if I could be treated by my original dentist provided it did not have an adverse effect on my dental health, this was agreed but the original dentist was ill, never returned to the practice and then sold the business. Fortunately I also have an email trail of that correspondence which I will present to them on Monday, they don't have access to the original managers email.

We were told on transfer of ownership that the practice would carry on as normal and we did not need to do anything. I am now trying to establish how the change of ownership affects the term of the contract.

Thanks Chris.

 

 

 

User
Posted 12 Jun 2022 at 04:53

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Hospitals can make their judgements at the point of testing and could be influenced by how individuals present. There is going to be a better chance of finding tumours as PSA increases. My RT treating hospital in Heidelberg, who in conjunction with the dkfz initiated the 68 Gallium PSMA scan, suggested 0.70 to me but we know there have been cases where tumours have been detected below this, so it seems an abitrary figure. It is quite an expensive scan and not widely available, so if paid for privately you could likely have it when PSA was lower, whereas if provided on the NHS some hospitals/consultants may well set the bar higher.

Barry how do you arrange a private scan in   Heidelberg a d have you any idea of a ball park figure cost.

Bri

Edited by member 12 Jun 2022 at 05:15  | Reason: Not specified

Barry
User
Posted 12 Jun 2022 at 05:06

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Hospitals can make their judgements at the point of testing and could be influenced by how individuals present. There is going to be a better chance of finding tumours as PSA increases. My RT treating hospital in Heidelberg, who in conjunction with the dkfz initiated the 68 Gallium PSMA scan, suggested 0.70 to me but we know there have been cases where tumours have been detected below this, so it seems an abitrary figure. It is quite an expensive scan and not widely available, so if paid for privately you could likely have it when PSA was lower, whereas if provided on the NHS some hospitals/consultants may well set the bar higher.

Barry how do you arrange a private scan in   Heidelberg a d have you any idea of a ball park figure cost. 
cheers

Bri

Old Barry Posted: 12 Jun 2022 at 04:53 Originally Posted by: Brianissac Originally Posted by: Old Barry Hospitals can make their judgements at the point of testing and could be influenced by how individuals present. There is going to be a better chance of finding tumours as PSA increases. My RT treating hospital in Heidelberg, who in conjunction with the dkfz initiated the 68 Gallium PSMA scan, suggested 0.70 to me but we know there have been cases where tumours have been detected below this, so it seems an abitrary figure. It is quite an expensive scan and not widely available, so if paid for privately you could likely have it when PSA was lower, whereas if provided on the NHS some hospitals/consultants may well set the bar higher. Barry how do you arrange a private scan in Heidelberg a d have you any idea of a ball park figure cost. cheers Bri 

Hi Bri, Sorry, I have only just seen your question having read back part of this thread. To answer your question specifically, I don't know how somebody would get the 68 Gallium scan in Heidelberg. without asking referral requirements. Furthermore, I don't think this is of any great advantage now as the scan can be done in the UK. It was only when I asked their opinion (as a previous patient in Heidelberg), on a Choline scan done in the UK with divided opinion, that they suggested I either have the PSMA scan done there privately or in the UK, where it was just being introduced, when my PSA reached 0.70. I had to get a Consultant rather than my GP to refer me for the scan and the Royal Marsden kindly obliged. I opted for the scan to be done at the Paul Strickland Scanner Centre where the going rate was about £2,600 at the time and they got a consultant from Mount Vernon Hospital to give an opinion on it. Since then, some UK Hospitals have referred men to the few UK hospitals/facilities that do the scan and on the NHS. I am not aware whether you still have to be referred by a Consultant but this should be easy to ascertain. I will just add that in my case, the PSMA scan led to me being given a second HIFU rather than just be treated with HT which is what UCLH were proposing on the basis of their interpretation of the Choline scan they had given me. So for me it was a treatment changer. Barry

It's gone green - don't know how that happened!

Edited by member 12 Jun 2022 at 05:39  | Reason: Not specified

Barry
User
Posted 16 Jun 2022 at 08:53

Hi , just checking my appointment for my PSMA F18 scan for tomorrow and noticed it say "half body scan" . Is that normal? Most images I see show a full body.

Thanks Chris 

 

User
Posted 16 Jun 2022 at 09:17
When I had mine they did an intense scan in the middle bit and a quicker scan everywhere else..
User
Posted 16 Jun 2022 at 10:07
I’m sure it will be fine ! Normally head or neck to the groin and hips ! Good luck
User
Posted 16 Jun 2022 at 10:20

Thanks guys , panic over , the scan department has just called back, it is top of the skull to mid thigh. More like a top 2/3, rather than half. Lovely member of staff, friendly and helpful.

Thanks Chris 

User
Posted 16 Jun 2022 at 10:26

 

Good luck, Chris. I'm sure it'll be fine, you'll see. Moreover, in case st came out, so many new an varied treatments are available these days. In We are bound to keep sharing our fears, sorrows and joy here for good.👍

User
Posted 17 Jun 2022 at 12:45

Scan cancelled, injection problems, not a total surprise. Rebooked for two weeks today.

Thanks Chris 

 

 
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