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Unsuitable for RT! Plan B needed..

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User
Posted 01 Nov 2021 at 19:45

Hi All,


 After 18 months of HT ( Prostap, which failed,  then Zoladex) trying to get a reluctant PSA down to a decent level, my oncologist gave the green light to prep me up for the start of RT. 


However, 4 scans later and despite numerous manipulations, we have not been able to get a satisfactory sighting shot: there are too many loops of bowel in the firing line for him to be willing to sign off a treatment plan. 


I have a meeting with him next week to discuss options, but I imagine he is going to refer me back to surgery. ( With an enlarged prostate, T2C NoMo,  I was not a natural candidate for cryo, brachy  or HIFU).


That wasn't my first choice, so it's a tad disappointing, especially after burning so much elapsed time, and I am back to doing my research over again.


It occurs to me that , with no backstop of salvage RT to mop up any close to the edge or stray bits of cancer, any surgery is likely to be more explicitly 'on the safe side', and less inclined to be nerve sparing. Am I being overly apprehensive?


And , after such a lengthy period on HT, should I be looking for an updated MRI to have a fresh look at the lay of the land in there?

User
Posted 08 Nov 2021 at 14:11

HDR is a preferred treatment for higher risk men, although it can be used for lower risk too. High risk men have a risk of having micro-mets (mets too small to find on scans) outside the prostate, so the combination of HDR and EBRT works well to give the prostate a boost (it's called HDR Boost), together with a lower dose to zap any micro-mets outside the prostate.

HDR alone (or with hormone therapy) is unlikely to see off micro-mets outside the prostate, so it's more suitable where the risk of micro-mets is lower. This is probably what your radio-oncologist will be weighing up. HDR alone (or with hormone therapy) is always given as at least 2 fractions, usually about 2 weeks apart.

User
Posted 03 Nov 2021 at 15:22
I had had no problem getting a second opinion from the top PCa oncology guy at the Royal Marsden, even if it involved a day trip from Coventry to Surrey.

Cheers, John.
User
Posted 08 Nov 2021 at 16:24
It seems to me that your logic is very good.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Nov 2021 at 18:18

I'd add The Prostate Brachytherapy Centre at Royal Surrey County Hospital in Guildford to the list. That is where I went (on the NHS) and I understand that they are one of, if not the, leading centre in Europe.


www.prostatebrachytherapycentre.com

Edited by member 21 Nov 2021 at 19:25  | Reason: Correct spelling in link

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User
Posted 02 Nov 2021 at 08:57

It would be useful if you set up a biography, but looking back through all your posts, I don't see why you wouldn't be a candidate for brachytherapy.


Unless your hospital does brachytherapy (or offers it via a tertiary centre), I would not take their judgement of your suitability for it too seriously, and ask for a referral to somewhere that specialises in it.


Also, given your special situation of not being able to have external beam radiotherapy, it might be worth asking for a PSMA PET scan first, to double check there's nothing outside the prostate yet, although I don't know if your PSA is now too low for it to be useful.


Indeed, as you are a special case, it may be worth being referred to a specialist radiation oncology centre which can consider all the different radiotherapy treatments. It might be they can find a suitable treatment plan with something like SABR/SBRT/Cyberknife, which a district general hospital is unlikely to be able to do.

Edited by member 02 Nov 2021 at 08:59  | Reason: Not specified

User
Posted 02 Nov 2021 at 11:34
Hi Andy,
good advice- many thanks. I need to go right back to the beginning in terms of options I guess.
At the beginning I was told that the prostate was on the large side for Brachy, but after 18 months of HT it should be a good deal smaller now
User
Posted 02 Nov 2021 at 13:28
After so long on HT, a scan may not be a reliable tool. like Andy, I think it is worth you asking for a referral to a specialist uro-oncology centre for a second opinion, if the hospital you are currently under is not one.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 Nov 2021 at 20:18
Thank you Lyn- greatly appreciated.
User
Posted 03 Nov 2021 at 10:48

I’d be tempted to seek review by the UCLH (London)urology team if that’s practical.

User
Posted 03 Nov 2021 at 11:21
Thanks for the tip.
I have been building a short list for a referral- the Christie, Royal Marsden and I will now add UCLH to it. If you don't ask, you don't get!
User
Posted 03 Nov 2021 at 15:22
I had had no problem getting a second opinion from the top PCa oncology guy at the Royal Marsden, even if it involved a day trip from Coventry to Surrey.

Cheers, John.
User
Posted 08 Nov 2021 at 10:40

Just a quick follow up if I may while I am prepping up for my consultation with the oncologist tomorrow.


HDR BRachy is usually described as a two-prong treatment ie brachy followed by conventional EBRT. Obviously in my case, EBRT is ruled out, so the question is whether HDR is suitable as a monotreatment ( if we discount HT for the moment). Does anyone know what the criteria might be? Christies refer to it being suitable in a small number of cases, but not what the entry criteria are.


And does LDR brachy have the same characteristics?


As always, grateful for any observations,


 


 

User
Posted 08 Nov 2021 at 14:11

HDR is a preferred treatment for higher risk men, although it can be used for lower risk too. High risk men have a risk of having micro-mets (mets too small to find on scans) outside the prostate, so the combination of HDR and EBRT works well to give the prostate a boost (it's called HDR Boost), together with a lower dose to zap any micro-mets outside the prostate.

HDR alone (or with hormone therapy) is unlikely to see off micro-mets outside the prostate, so it's more suitable where the risk of micro-mets is lower. This is probably what your radio-oncologist will be weighing up. HDR alone (or with hormone therapy) is always given as at least 2 fractions, usually about 2 weeks apart.

User
Posted 08 Nov 2021 at 15:08

Thanks for that, Andy.


So,


 for decision making purposes :


- either there are, or there are not, micro mets;


- we don't and can't, know which statement is true, since they would not necessarily show up on a scan (as an aside, for any quantum physicists out there, this seems like quite a nice example of the Schrodinger's cat problem ;)


- if there are micro mets, then without the boost of of EBRT, neither HDR nor LDR brachy, or surgery, will be fully effective and I will probably at some point- when they grow big enough to reveal themselves - be on a full-time regime of meds of one sort or another;


- so for current purposes I should assume there are no micro mets, and choose accordingly ( back on the old 'pick the least-worst option in terms of side effects' game).


Any obvious holes in the logic? 


 

User
Posted 08 Nov 2021 at 16:24
It seems to me that your logic is very good.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Nov 2021 at 21:11
Great post olefogey :-)
User
Posted 08 Nov 2021 at 22:18

Agree, good logic.


I don't know what your diagnosis is though, and hence what the chance of micro-mets might be, and if you should therefore try and access a specialist centre instead.

Edited by member 08 Nov 2021 at 22:20  | Reason: Not specified

User
Posted 10 Nov 2021 at 21:41

Many thanks to you all for your thoughts .


My visit to Oncoman confirmed that he has reached the end of the road with conventional EBRT ( courtesy of an an errant bit of bowel loop). 


 We have agreed that there should be another  MRI scan to see the latest position and to gauge prostate volume ( 100 cc at last count, so potentially well outside the normal Brachy limit of 60 ish). If all is well, a referral then to a specialist centre for a second opinion and to see what bigger and better machines might be able to offer.


In reality however, it looks like the the axeman cometh....


But then he threw in a curve ball: lower dosage  EBRT. I'd not come across this before. The idea is straightforward enough- find the Goldilocks spot between low collateral damage and sufficiently effective treatment. Nice concept.


But that seems quite a problematical proposition:  how do the radiographers judge the right level;  and how do I judge the level of risk/ reward? The flip side to the 'Goldilocks' view is the 'worst of both worlds' scenario- a fried bowel and a cancer which is  bruised  but still on its feet. Both seem equally valid views , and it seems  to be an area where there is not much hard data to guide the way. 


When they said PCa was hard I didn't realise that they meant you needed a passing acquaintance with quantum states and probability theory.....

User
Posted 10 Nov 2021 at 22:32
olefogey, have you had a PSMA Pet scan yet, as suggested by Andy62? This seems to be the best and maybe only, way to pick up stray micro-mets and detail of the prostate tumour. Equally, his suggestion of checking things out with a specialist radio oncology clinic looks very apt.

Onwards to the "specialist centre" and I hope they can come up with something a little more definite for you to base your decisions on.
User
Posted 10 Nov 2021 at 22:45

Got a PSA test under way to see if there might be something to show up on a PET scan... 

User
Posted 11 Nov 2021 at 11:20
It seems that the reason why normal EBRT is ruled out is because of damage to your bowel. I wonder whether in your case Proton Beam might be an alternative as the dose can be made to unload where required and pass through the bowel with almost no damage to it, unlike EBRT. Hitherto, men have have to pay privately for this treatment but with the ability to treat with Proton Beam at the Christy in Manchester now, you might be treated as a special case. In your situation I would at least try for a referral there.
Barry
User
Posted 11 Nov 2021 at 20:53

Hi Barry, 


thank you for that. The Christy is my target for a referral 👍

User
Posted 19 Nov 2021 at 18:18

I'd add The Prostate Brachytherapy Centre at Royal Surrey County Hospital in Guildford to the list. That is where I went (on the NHS) and I understand that they are one of, if not the, leading centre in Europe.


www.prostatebrachytherapycentre.com

Edited by member 21 Nov 2021 at 19:25  | Reason: Correct spelling in link

 
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