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PSMA scan for PSA of 0.023?

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User
Posted 04 Jan 2018 at 19:15
Prostatectomy in December 2016 - T3bN0M0 Gleason 9 Positive margins. Age 46.

January 2017 - PSA 0.014 January 2018 PSA 0.023

Oncologist looking to start salvage radiotherapy. She said she wanted a scan to see if it would give a more complete picture. She said I can definitely have another Choline PET scan but said a PSMA scan had a better chance of picking things up. She said she had never had a PSMA scan approved by the NHS but was going to ask again.

Is my PSA too low for a PSMA scan to be truly worthwhile? Her view was a choline PET scan might not pick anything up and that there was a greater chance of detecting something with a PSMA scan. But no guarantees.

If the NHS won't fund it, I might consider doing it privately. Where in the UK can I get it done privately and does anyone know the total cost? What about Germany?

Ulsterman
User
Posted 26 Oct 2020 at 10:46

I’ve been reflecting this morning.  It was in late October 2016 that I became a member of this forum.  So, I’ve been with you lot for 4 years now.  Where has the time gone?  Happily, my cancer is in remission or may even be gone.  My son is now at university, although his hall of residence has just been put on lockdown.  Just back from a weekend to Grimsby where my daughter is on placement at a local hospital training to be a doctor (she checked first, I was allowed to visit).


 


so, 4 years on, things are fine.  Thank you all for sharing your knowledge, your love and care.  I would not have wanted to make this Cancer journey without this forum or without the PCUK specialist nurses.

User
Posted 17 Feb 2021 at 10:56

Four and a bit years since my prostatectomy.  Two and a half since salvage radiotherapy.  One and a half since finishing bicalutimide.  Another PSA test result today.   Still less than 0.006.  Another test in 12 months.  


The doctors have done a good job on me.


Penile implant surgery indefinitely delayed owing to Covid - 19.  I’ll keep you all updated.


Thanks for all the support over the years.  Much love to all as we continue this battle.


 


 

User
Posted 04 Jan 2018 at 19:42

I have had two PSMA PET Scans, both carried out privately at the London Clinic.

Best wishes

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 16 Nov 2018 at 00:37

Two years ago, on 8th November 2016, my PCa was confirmed.  Today, I’m writing to you all from Antarctica.  It was always a dream of mine to get here.  I don’t know what the future holds, but today is a good day.  The scenery is stunning.  I’m happy.


Ulsterman

User
Posted 25 Feb 2019 at 14:31

8 months post salvage radiotherapy and I am still <0.006.  I'm happy.  I'm still on HT until August.  I don't like bicalutimide - my body hair has fallen out, I've put on a bit of weight and I am more tired and less fit than I ought to be.  That said, I'm alive.  I'll finish Bicalutimide in August and then we'll really start to see what's going on.  But good news for now.


Ulsterman

User
Posted 22 May 2020 at 17:26

Three more months have passed and my latest PSA is <0.006.  Great news.


I asked my oncologist if I was in remission.  I was told that remission is one of two things - we know there are cancer cells there, they’re doing nothing at the moment so we don’t need to treat now, but we will do in the future - or, we strongly suspect there are cancer cells there but can’t detect them at the moment but do believe you’ll need future treatment.


He told me I was either in remission but there was a good chance of a ‘cure’ but made it very clear they wouldn’t consider using that word for ten years.  He told me that after everything I’d been through, I was in the best possible place.  I tend to agree.  My urologist and oncologist have done miraculously well so far.


One other piece of news - I’ve been approved for the penile implant.  Waiting list times will have changed because of Covid 19, but at least I’m approved.  My local hospital doesn’t do the operation, I’ll be off to UCLH, which I’m very happy about.


Ulsterman

User
Posted 03 Feb 2023 at 05:20

I did post separately but thought I should keep this thread up to date.  Another year has passed and I'm still <0.006.

User
Posted 04 Jan 2018 at 19:15
Prostatectomy in December 2016 - T3bN0M0 Gleason 9 Positive margins. Age 46.

January 2017 - PSA 0.014 January 2018 PSA 0.023

Oncologist looking to start salvage radiotherapy. She said she wanted a scan to see if it would give a more complete picture. She said I can definitely have another Choline PET scan but said a PSMA scan had a better chance of picking things up. She said she had never had a PSMA scan approved by the NHS but was going to ask again.

Is my PSA too low for a PSMA scan to be truly worthwhile? Her view was a choline PET scan might not pick anything up and that there was a greater chance of detecting something with a PSMA scan. But no guarantees.

If the NHS won't fund it, I might consider doing it privately. Where in the UK can I get it done privately and does anyone know the total cost? What about Germany?

Ulsterman
User
Posted 04 Jan 2018 at 22:01

It is possible that from what your oncologist is suggesting, that your individual circumstances suggest that a 68 Gallium PSMA scan might reveal cancer in your case notwithstanding your lowish PSA. From what I have read a more usual starting point is 0.05 for this scan for patients with similar situations to yours but due to rarity and lack of experience of the scan oncologists are very much on a learning curve of just what it can show.

As regards the cost of this scan privately, as I reported on another thread in November last, having enquired of UCLH, the figure they gave was £2,200. The Royal Marsden quoted £3,700 plus a fee for their interpreting if required. There are a number of facilities who could do the scan in Europe and prices will vary. £3,000 would not be far out for Germany. A member located in Australia on another forum said the scan could be had in Melbourn Australia for Aus$800 and for a little more or less in other parts of Australia. So, for the price of this scan in Europe you could have it, including the air fare and a few days in the sun! If you think the OZ figure is wrong, read this :- https://www.huffingtonpost.com/larry-diller/fly-to-australia-for-to-s_b_12807018.html

Barry
User
Posted 06 Jan 2018 at 23:19

We could all go - John has a 7 seater car x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 Feb 2018 at 07:50

Yes I am odd. It’s always been said. I think the data PCUK sent me says it cannot “ pick up “ on 8% of subjects. I always knew I’d be good at something :-)

User
Posted 21 Feb 2018 at 13:56
I'm off to the Lake District for a few days, but Gambia is still on the radar screen, along with an awful lot of other places.

Ulsterman
User
Posted 22 Feb 2018 at 09:57
Chris

They will blast the whole prostate bed and the lymph nodes. I don't know if this is the standard treatment, but my oncologist does 32 days of radiotherapy to the prostate bed, or 37 if she wants to go further up the prostate bed to include lymph nodes. She doesn't like doing the 37 day treatment unless she knows for certain it is needed as there are more risks of later complications, I think in the bladder. At my January appointment, I told her I wanted the 37 days regardless and she said she would consider it. Now we have the evidence it is needed. Without the PSMA scan though, I might have had the 32 day treatment and left the cancer in the lymph nodes totally untouched. She said there's no way the Choline scan would have picked things up. Hope that all makes sense.

I had a few lymph nodes removed during surgery and so, inevitably, am wondering why they didn't remove these two. Maybe that's not standard practice. I'm not blaming my urologist, but just wonder what would have happened if he had removed them.

I'm so sorry they haven't found where your cancer is hiding and I hope the March scans finally find out what is going on.

Ulsterman

User
Posted 10 Mar 2018 at 11:31
Bill - I'm on bicalutimide for six months and don't see the oncologist again until late July, so I'll cross the GP/oncologist bridge then if I have to. I have been prescribed 20mg per week. TBH, I don't want man boobs if I can avoid them so I don't care. I suppose the question would be how soon one stops using tamoxifen once the bicalutimide stops.

Chris - once again, this forum has empwered the patient!

Ulsterman
User
Posted 23 Nov 2018 at 20:25
As we have said previously, the NHS is neither well funded nor well organized. and is insufficiently staffed. I,like many here could illustrate this from our own experiences. However, this does not address the aspect I raised as to why the costs of PSMA scans is so high in the UK compared to Australia for private patients and not only in Australia. Is the supplier asking too much or are the treating hospitals doing thee same? Perhaps a bit of both is applicable. Sometimes it's a question of supply and demand. On an American forum I sometimes visit a patient asked of a hospital why they charged so much more than other hospitals for a particular scan. He got a short but honest answer which was "because we can".
Barry
User
Posted 12 Aug 2019 at 18:21
Best wishes mate. I’m beyond worrying now and spend little time thinking about it these days until right before and after scans. Funny ain’t it but I’m approaching 9 months without a psa test and it was 83 back then. All I’m thinking about is my cruise in 3 weeks and our next date night , work and living. Total acceptance of my situation. But watch this space when they find something .......
still very glad I’ve kept off all treatment tbh
User
Posted 12 Aug 2019 at 22:42

Thanks, everyone, for your best wishes


Chris - I hope your cruise is brilliant 


Kayaker Bill - I’ll keep everyone informed on how things go, post-bicalutimide - I’ve had nearly every side effect of the treatment and desperately hope to see an improvement in quality of life once I stop it

User
Posted 26 May 2020 at 11:00

Stacey - so sorry to see that your husband has to have salvage radiotherapy.  I felt cheated having to have it in my late 40s and he is so much younger than me.  I wish him well.  

User
Posted 12 Aug 2020 at 07:29

I am feeling healthy and not as tired as I was, but that might be because of not working as much during lockdown

User
Posted 13 Dec 2020 at 14:48

Still on the waiting list.  Have a viewing appointment on 8th January to see the devices and choose which one I want.  Don’t know how long after that I’ll have to wait.

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User
Posted 04 Jan 2018 at 19:42

I have had two PSMA PET Scans, both carried out privately at the London Clinic.

Best wishes

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 04 Jan 2018 at 19:56

Bear in mind that CJ has had fancy scans at a much higher PSA than yours without any success. Having said that, if I thought I could get J an FACBC I would pay.


I posted this in January 2017 on another thread


************************************************************************************************************************************


Posted Sunday, January 22, 2017 11:56:42 PM
It isn't a straightforward issue though, is it ChrisJ, and presumably the reason you are unlikely to be referred is that it is still in trial stage. Like John with the FACBC tracer, it seems you might not meet the narrow trial criteria :-(


 


This is a useful perspective from 'those that know'


http://www.birminghamprostateclinic.co.uk/prostate/assessments/pet-scans-for-prostate-cancer/


 


For anyone interested, this is the report on FACBC which has had great results in Italy and is now being trialled at a small number of hospitals in England (but again, with very narrow criteria)


http://www.europeanurology.com/article/S0302-2838(13)00905-6/fulltext/the-new-promise-of-facbc-position-emission-tomography-computed-tomography-in-the-localization-of-disease-relapse-after-radical-treatment-for-prostate-cancer-are-we-turning-to-the-right-radiotracer



*************************************************************************************************************************************


 

Edited by member 04 Jan 2018 at 19:58  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Jan 2018 at 19:58

Rough costs seem to be £1800 for choline PET scan in UK, and about £6000 for a Gallium 68 in Europe.


This thread has some useful discussion on the strengths / limitations of the different new tracers coming along


http://community.prostatecanceruk.org/posts/t12371-Psma-testing#post154275


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Jan 2018 at 22:01

It is possible that from what your oncologist is suggesting, that your individual circumstances suggest that a 68 Gallium PSMA scan might reveal cancer in your case notwithstanding your lowish PSA. From what I have read a more usual starting point is 0.05 for this scan for patients with similar situations to yours but due to rarity and lack of experience of the scan oncologists are very much on a learning curve of just what it can show.

As regards the cost of this scan privately, as I reported on another thread in November last, having enquired of UCLH, the figure they gave was £2,200. The Royal Marsden quoted £3,700 plus a fee for their interpreting if required. There are a number of facilities who could do the scan in Europe and prices will vary. £3,000 would not be far out for Germany. A member located in Australia on another forum said the scan could be had in Melbourn Australia for Aus$800 and for a little more or less in other parts of Australia. So, for the price of this scan in Europe you could have it, including the air fare and a few days in the sun! If you think the OZ figure is wrong, read this :- https://www.huffingtonpost.com/larry-diller/fly-to-australia-for-to-s_b_12807018.html

Barry
User
Posted 04 Jan 2018 at 22:05

Hi mate
We all know I’m a bit weird but I wouldn’t even be dreaming of RT at 0.023. That measurement could have moved just because you sneezed the night before. The ideal psa for cholinePET is 3 or more. I showed nothing at psa approx 2.2.
PSMA PET is regarded as being far more accurate at much lower psa values, however at pda 2.7 it revealed zero spread as well — not even the known positive margins on my bladder neck. I stamped my feet and got the PSMA free on the NHS at UCLH. I was told privately it would be £1800 but not sure about follow up costs etc.
I don’t really know what to say as it is your cancer and your fears and logic. You need to know that salvage RT is only 50% successful and you are mikes away from the normal 0.2 start recommendation. I know you value QOL like myself and it’s a tough decision. But given your stats I wouldn’t even think of paying. On the NHS then why not ?? Remember every scan is giving you radiation poisoning in one form or another , and RT at 46 can increase the likelihood of later cancers in bowel and bladder. All my best my friend

User
Posted 04 Jan 2018 at 22:09

My C/pet/ct  scan showed nothing at 1.50


but at 3.1 it showed three mets


 

User
Posted 04 Jan 2018 at 22:28
My choline F18 PET scan showed cancer (moderate uptake) in seminal vesicle remnants and subtle uptake on the Prostate bed(which was already picked up by a Gadolinium enhanced MRI). My PSA was 0.7 on 30/11/16 and was increasing fast so would be above that on 21/12/16 when I had the scan.
Best wishes, Ian.

Ido4

User
Posted 05 Jan 2018 at 20:21

So, rightly or wrongly, I'm proceeding with a PSMA scan.  If the NHS won't pay, I will.  It may show nothing up, but my understanding is it has a better chance of picking something up than even the choline PET scan.  If anything, I may be contributing to the advancement of medical science.


On Dave's recommendation, I phoned The London Clinic today and they said they can do in at the end of January for £2588.  I prefer Old Barry's link to Australia, but I'd never be allowed the time off work.


Now Lyn, that FACBC tracer - is there anywhere we can get it?  I'm tempted!


And CJ - without you I would never have known about Invicorp 25 or PSMA scans - so thank you.


I'll keep you all posted.


And I still don't understand the graphs from the other post!!!!


Ulsterman

User
Posted 05 Jan 2018 at 20:51

I would seriously do more research before paying privately for a PSMA at such a tiny tiny value. Yes I got one on the NHS , and that was partly because I was the first from Southampton General , but only on the grounds my PSA was rapidly rising and approaching 3 again. They won’t even give me another one now my psa is 12. Seriously your choice but I’d at least wait to see if your psa rises again in 3 months time. Personally I had 6 f**k -ups with PET scans with the tracer reliability and I’m not sure we’ve got that right in the UK yet. Best wishes whatever you choose , but choose wisely

User
Posted 05 Jan 2018 at 20:59

“About the FALCON Trial

The FALCON trial, “Fluciclovine (18F) PET/CT in biochemicAL reCurrence Of prostate caNcer (FALCON),” is an open-label multi-center study in the U.K. designed to assess the clinical utility of fluciclovine (18F) PET imaging in the management of patients with prostate cancer with biochemical recurrence after initial treatment. The primary endpoint is to evaluate the clinical impact of fluciclovine (18F) in affecting treatment decision and is assessed by comparing records of the patient’s treatment plan after a fluciclovine (18F) PET scan with the treatment plan prior to the scan. Secondary endpoints include evaluation of the effect of treatment change in patients with positive fluciclovine (18F) PET imaging findings who had a treatment change involving radical salvage therapy; diagnostic performance; PSA threshold; safety assessment and comparison with choline PET (if performed).

The FALCON trial is jointly funded by Innovate UK and Blue Earth Diagnostics and is being conducted at six leading institutions in the UK: Oxford University Hospitals NHS Foundation Trust, University College London, Kings College London, The Royal Marsden NHS Foundation Trust, The Leeds Teaching Hospitals NHS Trust, Mount Vernon Cancer Centre and Greater Glasgow Health Board. Additional information about the FALCON trial is available at: www.clinicaltrials.gov (NCT02578940).”

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Jan 2018 at 21:10

Forget that - I built you up only to crush you! Recruitment is closed already :-(


https://www.clinicaltrials.gov/ct2/results?term=Scan&cond=Prostate+Cancer&cntry=GB&city=Leeds&dist=50



From what I can remember, John didn’t meet the criteria because his PSA was too low so you probably wouldn’t have got on it anyway. But as I said, if I could pay for it, I would .... our Mr B was very excited about the results it has had in Italy.

Edited by member 05 Jan 2018 at 21:11  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Jan 2018 at 21:29

Lyn


Can we not go to Italy and have it done?  Surely between the two of us we could find a way??!!


Ulsterman

User
Posted 05 Jan 2018 at 21:50

Best proposition I have had in a long time :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Jan 2018 at 21:50

It would have to wait until a school holiday though :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Jan 2018 at 01:47

Because of advances in scans it is difficult to ascertain which is the best one for a particular man's situation. It may well be that scan A reveals more than scan B with low PSA and micro mets whereas scan B shows better say within the Prostate or elsewhere. Then there is the matter of finding where you can get the scan. Often these advanced scans are only available within a trial so you have to meet the criteria of the trial. Some you can have done at varying cost as a private patient but with a referral from your GP who probably knows less than you do about scans! This is another promising possibility for some but at an early stage as yet. https://www.kcl.ac.uk/newsevents/news/newsrecords/2017/10-October/Promising-new-prostate-cancer-test-developed.aspx

As it happens, I have an appointment with my GP next week with a view to being referred back to the Royal Marsden in the hope that they will give me the 68 Gallium PSMA scan within the NHS. Should they not be prepared to do so, I will check whether UCLH will do the scan privately as they will not do so within the NHS. Other options would be Germany or Australia but my wife is now dependent on me and no longer really up to long distance travel.

Incidentally, my original RT treating hospital in Heidelberg suggested in my situation that I had the 68 Gallium PSMA test if my PSA reached 0.7 and it is already 0.99 (at last test). If the scan showed cancer they held out the possibility of further RT/HT.

I am most interested in how you get on at the London Clinic, this could be yet another option for me. Decisions decisions!

Barry
User
Posted 06 Jan 2018 at 09:13

I’d ask to come too , but I think I’d be in the way 😁😁
I might get stroppy again though and ask for an 18F PET. We can but try !

User
Posted 06 Jan 2018 at 23:19

We could all go - John has a 7 seater car x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Jan 2018 at 15:02
To keep you updated. Miraculously, my NHS trust said it would refer me for the PSMA scan and pay for it. After a month of waiting, and a bit of chasing from me, they told me they just couldn't get it organised quickly at any of the NHS centres which can do it.


I told them to stop trying. The London Clinic will do it next Wednesday.


Ulsterman

Edited by member 31 Jan 2018 at 19:17  | Reason: Not specified

User
Posted 31 Jan 2018 at 21:43

That’s amazing news - fingers crossed it gets you the answers you want

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Jan 2018 at 22:56

I am sure many of us will be interested in learning how it works out for you.

Barry
User
Posted 01 Feb 2018 at 07:42

Well no-one more interested than me. I really have my doubts about this as you know. Not the scan technology but the seemingly terrible difficulty getting the tracer produced right at exactly the right time. I’ve had two PET scans but four last minute cancellations. My psa was 3 for the PSMA PET scan and it didn’t even pick up my known margins at the bladder neck .... work that one out. I’ve just been given my dates mid March for two more scans. My psa will be 24. They would not offer PET , but merely Bone and full body CT. He reckons that will be enough GULP
Best luck my friend

User
Posted 01 Feb 2018 at 16:37
I could have had a choline pet scan or try for this PSMA scan. It's funny, though. Either way, I don't win. If the scan is clear, there's always the doubt that it missed something. If it finds something, that's hardly brilliant news. Nonetheless, I've made the decision to proceed. Maybe I'll be making a small contribution to medical science.

Ulsterman
User
Posted 01 Feb 2018 at 18:11
Good luck Ulsterman,

My experience of the PSMA Pet scan at the London Clinic is that they are very efficient and professional. You will be in good hands.

Regards

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 01 Feb 2018 at 21:57
Dave

Glad you told me about the London Clinic - my oncologist hasn't ever referred anyone there before.

Ulsterman
User
Posted 01 Feb 2018 at 22:23

Chris,


The quality of the tracer for the Choline scan is very hit or miss. It is produced on a cyclotron elsewhere and delivered in double quick time to the treating hospital as it has a very short half life. As was the experience of some other members, the first batch delivered for me did not meet the standard required and a further batch had to be made.  The ligand for the 68 Gallium PSMA scan can be produced with a generator and hopefully will result in fewer rejections for unsatisfactory quality.  Hope Ulsterman does not have a problem with his scan.

Edited by member 02 Feb 2018 at 03:26  | Reason: Not specified

Barry
User
Posted 01 Feb 2018 at 23:32

Thanks Barry. I know you are ultimately much more well informed than I , but the PSMA was cancelled twice also due to “ production reasons “ which cost me significantly in transport and hotels ( but I’m not complaining ) !!! I wouldn’t put it past 3 failures for a company to supply a tracer that wasn’t quite perfect to keep their status. You know the score in any business. If you can’t provide the goods .... I’ve seen far too many failures. Yes I may have very micro mets but it’s taken me six attempts to get two PETS which were both undetailed to such an extent that they won’t give me another at PSA 24 post op. That surely shows lack of faith in Southampton NHS of this technology ?? Scan fine — but tracer very unreliable ?

User
Posted 02 Feb 2018 at 00:28

The flip side of that is that some men present initially with PSA of 4 or 6 or 10 or whatever and the tumour areas show up on a normal run-of-the-mill scan so it could be your cancer that is odd rather than the tracer being faulty?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 Feb 2018 at 07:50

Yes I am odd. It’s always been said. I think the data PCUK sent me says it cannot “ pick up “ on 8% of subjects. I always knew I’d be good at something :-)

User
Posted 07 Feb 2018 at 20:30
Had my Ga68 PSMA scan today at the London Clinic - thanks Dave for the recommendation. It cost me £2588. The reports will be with my oncologist on Friday. I'll keep you all posted.

Ulsterman
User
Posted 07 Feb 2018 at 21:54

Good news and no c**k-ups ! As you say you’re not sure what a good result is. But I hope it’s a negative as ideally that’s what you want. I can’t imagine what it may see at psa 0.02 , but you never know. Everyone’s PCa is different as you know by now. But not sure you should have had to pay for it - prob because psa was so low ?? Anyway here is hoping you get the answers you need

User
Posted 08 Feb 2018 at 08:14
Chris - the NHS was willing to pay but just couldn't get it organised quickly enough so I decided not to wait and go private. I was the first from my nhs hospital to be offered the scan on the NHS - because I'm young and high risk

Ulsterman
User
Posted 08 Feb 2018 at 08:31
Originally Posted by: Online Community Member
Had my Ga68 PSMA scan today at the London Clinic - thanks Dave for the recommendation. It cost me £2588. The reports will be with my oncologist on Friday. I'll keep you all posted.

Ulsterman


Ulsterman,

I am delighted you were able to have the scan. In my case it picked up pin pricks of cancer cells which were unfortunately in places they should not have been and hence the aggressive treatment regimes that have followed for me in trying to flush them out. I do hope they pick up everything for you, it will be such a head start for you and your Onco to have in your armoury.

On a lighter note, I hope you didn't fall in the trap of tipping the doorman at The London Clinic. On many occasions he is decked out in all his regalia and it is difficult to sometimes remember you are at a hospital and not a hotel.

All my very best wishes to you

Dave

Edited by member 08 Feb 2018 at 08:40  | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 08 Feb 2018 at 12:47

Dave


The doorman and reception staff all did put me in mind of hotel concierges.  After paying as much as I did, I wasn't minded to tip anyone!  Call me miserable.


Ulsterman

User
Posted 21 Feb 2018 at 12:14
Well, it worked and I didn't waste my money

With a PSA of 0.023, the PSMA scan picked up cancerous cells in two ymph nodes further up the prostate bed. It picked nothing up on the prostate bed itself and nothing in the bones.

The plan of action? I start bicalutimide today for six months and will have 37 sessions of radiotherapy.

Quite worried about the bicalutimide. Don't want boobs!

Off to pick up my prescription.

Ulsterman

Edited by member 21 Feb 2018 at 12:18  | Reason: Not specified

User
Posted 21 Feb 2018 at 12:56

Well in the world of poor outcomes that is a bloody marvellous outcome. So pleased for you that you have a plan and that there is a really good chance of the plan working.



You will make it to Gambia yet :-)

Edited by member 21 Feb 2018 at 12:57  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Feb 2018 at 13:56
I'm off to the Lake District for a few days, but Gambia is still on the radar screen, along with an awful lot of other places.

Ulsterman
User
Posted 21 Feb 2018 at 15:01

Picking up cells with a PSA of 0.023 is amazing. I'm sure you would rather not be in this position but as Lyn has said there is a real chance to deal with this successfully now.


Hope it all goes well and you enjoy the Lake District plus many more holidays elsewhere.


 


Ian

Ido4

User
Posted 21 Feb 2018 at 17:53

Well worth getting the PSMA scan which has helped a decision on your further treatment but as Chris said not suitable for all men and in all situations. It was specifically designed for PCa and should provide a more definitive result than the Choline one which, as in my case resulted in different interpretation. According to an Australian Professor, they are going over to the PSMA scan now for PCa, which is becoming available at a number of centres in Australia as I posted elsewhere. He said they abandoned the Choline one after only about 6 months but it is still being used in the UK.

Barry
User
Posted 21 Feb 2018 at 18:46
I'm delighted that they found the pin pricks of cancer cells for you.

I told you the London Clinic were good, they really are at the top of their game there.

My Oncologist has repeatedly told me that without these new high powered scanners they are blind to knowing where the cancer really has spread to until it is too late in some cases.

I am one to talk as my numbers are not the best by some way, but at least the Chemo is keeping some degree of control on it (infusion number 14 yesterday with 2 more to go in this session to bring it up 16 infusions)

My very best wishes for a full recovery Ulsterman.

Regards

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 21 Feb 2018 at 21:31

Wow I’m glad you’ve not wasted the money and have a plan ahead. Even though it’s just 2 lymph nodes are they going to blast the whole area ? Was targeted therapy offered or advised ? I’m simply baffled mate. Where the Hell is my cancer ?? My psa expected at roughly 20 now. Well we will soon find out as I have a full body CT and Bone scans end of March. Hopefully it’s all a mistake and I’m actually fine. I’m living , loving , working ..........
Best wishes as ever from our camp

User
Posted 22 Feb 2018 at 09:57
Chris

They will blast the whole prostate bed and the lymph nodes. I don't know if this is the standard treatment, but my oncologist does 32 days of radiotherapy to the prostate bed, or 37 if she wants to go further up the prostate bed to include lymph nodes. She doesn't like doing the 37 day treatment unless she knows for certain it is needed as there are more risks of later complications, I think in the bladder. At my January appointment, I told her I wanted the 37 days regardless and she said she would consider it. Now we have the evidence it is needed. Without the PSMA scan though, I might have had the 32 day treatment and left the cancer in the lymph nodes totally untouched. She said there's no way the Choline scan would have picked things up. Hope that all makes sense.

I had a few lymph nodes removed during surgery and so, inevitably, am wondering why they didn't remove these two. Maybe that's not standard practice. I'm not blaming my urologist, but just wonder what would have happened if he had removed them.

I'm so sorry they haven't found where your cancer is hiding and I hope the March scans finally find out what is going on.

Ulsterman

User
Posted 22 Feb 2018 at 10:37

Not all urogists routinely remove lymph nodes but when they Do, they tend to only remove the ones immediately next to the prostate.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Feb 2018 at 17:37
Originally Posted by: Online Community Member


The plan of action? I start bicalutimide today for six months and will have 37 sessions of radiotherapy.

Quite worried about the bicalutimide. Don't want boobs!

Off to pick up my prescription.

Ulsterman


You should consider asking the Onco for Tamoxifen to try and counter the man boob growth/pain

Not certain to work by all accounts but for me it’s worth the try as I started getting growth and pains fairly quickly
User
Posted 22 Feb 2018 at 21:26
She said no to tamoxifen and nearly took the head off my shoulders for suggesting a burst of radiotherapy to my breasts. I was taken aback as I have a really good relationship with both my oncologist and urologist, and some members of the forum have commented that I seem to have treatment more like a private patient than an NHS one. But on the radiotherapy to the breast, I was spoken to sternly. It shut me up, and, believe me, that isn't easy to do.

I'll see if I can get round my GP for tamoxifen.

Hope things are going a bit better for you, Kayaker Bill.

Ulsterman
User
Posted 22 Feb 2018 at 21:30

It's odd isn't it that so many men get it but some oncos just refuse outright. I wonder if there are additional risks that they know and we don't? I shall ask Mr B when we next see him.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Feb 2018 at 21:31

My surgeon said he could remove all the lymph nodes as well as everything else. But one guarantee he could make was that he could not put them back. He said full removal of lymph nodes could lead to mobility problems as the legs could swell.

So he just took a smallish sample and removed 15

Bri

User
Posted 22 Feb 2018 at 23:28
Originally Posted by: Online Community Member

It's odd isn't it that so many men get it but some oncos just refuse outright. I wonder if there are additional risks that they know and we don't? I shall ask Mr B when we next see him.



My Onco seemed reluctant and more worried about risk of DVT rather than anything cancer related

But she did prescribe 10mg weekly and will put up to 20mg next week when I’ve recovered fully from my chest infection
User
Posted 23 Feb 2018 at 07:26

Yes , as I’ve said from the very start , it still seems wherever you are in the country you may be treated differently despite having an identical PCa and scores !! I had to fight and fight for Cialis !! But Tamoxifen 20mg offered on a plate. Offered RT but it was a no no no to 20 sessions instead of 35.
I was dry almost immediately after surgery and it was stated I was fifth in a row after Mr X had performed on me. Let’s hope his technique is widely shared around the country.
I guess also Walter that some Oncos hate the fact that we have informed ourselves via this site and google etc.

User
Posted 23 Feb 2018 at 10:35
Chris

Do you take tamoxifen 20mg weekly or daily? I'm going to ask my gp.

My daughter who is training to be a doctor told me that doctors have a name for well-informed internet-searching patients. My oncologist laughed when I said that to her and said I definitely didn't fall into that camp and that she enjoyed our consultations! But there is no way on God's earth she is going to blast my breasts as a precaution!

Ulsterman
 
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