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Has RT Failed

User
Posted 06 January 2015 11:14:25(UTC)
Hi

I have just checked my latest results online and the PSA has risen yet again to 0.63. I finished Salvage RT 6 months ago with a score of 0.05, 3 months later it was 0.2 and now 3 months after that it is now 0.63, giving me a doubling time of 1.8 months so do I take it that RT has failed me. I find it hard to interpret the figures due to the hormones I took (Casodex 150) for six months prior to and including RT and what effects it has had on the numbers, I assume the Casodex would have been out of my system at the 3 months check, if so then the figures now are a true reflection on what is going on, and I am destined to just trying to control rather than cure. I know that RT can keep working for approx 2 years but to me the outlook seems gloomy and I dread going back on the hormones, but I will if it keeps me alive. I will be seeing my Oncologist on Thursday and need to have my questions/game plan in place, so if anyone can let me have their thoughts it would be welcome, as at the moment I can't seem to get my head around it all and am finding it hard to process. I have always had a plan of action uptil now but now I am in uncharted waters and feeling out of my depth so any info good or bad may get my thought processes back on track

Thank you

Roy
User
Posted 06 January 2015 12:18:12(UTC)

Hi Roy,

Sorry to hear about your latest PSA rise, My thoughts about HT are exactly the same as yours, not fun !!

I had a little dig around and found the below  , hope you find it helpful, it was published May last year.

Si

 

 

"As usual, we are confronted with a new contradiction. It has been believed that earl hormone therapy (ADT) in men with a biochemical recurrence (PSA only) would benefit from immediate ADT. A study released from the Harvard School of Public Health contradicts this assumption, but the study lacks follow up beyond 10 years.

They evaluated 2,012 men whose prostate cancer relapsed, those who delayed hormone treatment were no more likely to die over five and 10 years than those who started therapy immediately. “For both groups and both outcomes, the survival is very similar,” said Xabier Garcia-Alben, an epidemiologist at Harvard and a study author. The researchers used a 14,000-patient database from the University of California at San Francisco that tracks men with prostate cancer to assess the benefits of therapy.

The results were released yesterday and the actual data will be available for review at the up-coming American Society of Clinical Oncologists (ASCO) meeting.

In the study, 85.1 percent of men who started treatment immediately survived over five years, compared with 87.2 percent who delayed therapy. Over 10 years, 71.6 percent of men in both groups were alive. These numbers do not reflect a statistical difference.

William Oh, M.D. from Mount Sinai Hospital in New York said, “What this suggests is we probably pull the trigger on androgen deprivation therapy a little too soon,” Oh said in a telephone interview. “Nobody’s ever shown that starting right away makes any difference. The sooner you start it, the longer they’re on this therapy.”

I hope that the study will continue so that we can get a better understanding of an even longer time period. Prostate cancer takes many years to kill a man and the data from 15 and even 20 years might tell a different story"

 

Don't deny the diagnosis; try to defy the verdict
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Posted 27 July 2017 14:18:02(UTC)

And yet I got Enzo before having to have chemo but they won't give it to you until after chemo! As the cousins say, "go figure".

Docetaxel. If I hadn't contracted pneumonia I'd say it was well worth doing.

However, I did get pneumonia and the last 11 weeks have been the worst of my life.

If last November I'd have known what was going to happen then would I have gone ahead with it? Probably not, but this would have meant a shorter life span.

If I recover from the effects of pneumonia in the next few weeks then I'll probably have a different view.

Bottom line is, respect days 8 to 15 in each cycle when you are likely to be neutropenic and do your utmost to avoid any infection.

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User
Posted 06 January 2015 11:51:44(UTC)

Hi Roy,

My approach would be (i) to hear what the oncologist has got to say - he is the expert  (ii) have up my sleeve a request for a further sensitive scan - Choline-PET / MRI (I think you had one of these before) (iii) the merits of additional therapy e.g. cryotherapy if some of the blighters are still there. I would even go so far as doing a little bit of research beforehand re. places that offer it.

Flexi

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User
Posted 06 January 2015 11:51:44(UTC)

Hi Roy,

My approach would be (i) to hear what the oncologist has got to say - he is the expert  (ii) have up my sleeve a request for a further sensitive scan - Choline-PET / MRI (I think you had one of these before) (iii) the merits of additional therapy e.g. cryotherapy if some of the blighters are still there. I would even go so far as doing a little bit of research beforehand re. places that offer it.

Flexi

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User
Posted 06 January 2015 12:18:12(UTC)

Hi Roy,

Sorry to hear about your latest PSA rise, My thoughts about HT are exactly the same as yours, not fun !!

I had a little dig around and found the below  , hope you find it helpful, it was published May last year.

Si

 

 

"As usual, we are confronted with a new contradiction. It has been believed that earl hormone therapy (ADT) in men with a biochemical recurrence (PSA only) would benefit from immediate ADT. A study released from the Harvard School of Public Health contradicts this assumption, but the study lacks follow up beyond 10 years.

They evaluated 2,012 men whose prostate cancer relapsed, those who delayed hormone treatment were no more likely to die over five and 10 years than those who started therapy immediately. “For both groups and both outcomes, the survival is very similar,” said Xabier Garcia-Alben, an epidemiologist at Harvard and a study author. The researchers used a 14,000-patient database from the University of California at San Francisco that tracks men with prostate cancer to assess the benefits of therapy.

The results were released yesterday and the actual data will be available for review at the up-coming American Society of Clinical Oncologists (ASCO) meeting.

In the study, 85.1 percent of men who started treatment immediately survived over five years, compared with 87.2 percent who delayed therapy. Over 10 years, 71.6 percent of men in both groups were alive. These numbers do not reflect a statistical difference.

William Oh, M.D. from Mount Sinai Hospital in New York said, “What this suggests is we probably pull the trigger on androgen deprivation therapy a little too soon,” Oh said in a telephone interview. “Nobody’s ever shown that starting right away makes any difference. The sooner you start it, the longer they’re on this therapy.”

I hope that the study will continue so that we can get a better understanding of an even longer time period. Prostate cancer takes many years to kill a man and the data from 15 and even 20 years might tell a different story"

 

Don't deny the diagnosis; try to defy the verdict
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User
Posted 06 January 2015 13:52:24(UTC)

Roy

Sorry to read of your PSA increase.

A post difficult to respond to but I have to type how I see your situation..

My thoughts on PET and all scans remain the same – certainly some can identity cells which others may not so they have in some instances a high value. However I can’t see how any scan can pick up cells already mutated but not yet at the mutation level that will show on scans. Thus I don’t see it that RT failed as such just some cells out of RT range were just at the early stages of mutations so couldn’t be picked up.

On a brighter note you take the view HT is control rather than cure – certainly a valid point. Against that is the thought HT can indeed kill cells off particularly at their early stages.

I guess I’m trying to say you could continue to have scans and find some way to see a particular hot spot off in the hope that’s it or accept that either now or at some point in the future longer term HT might be your best longer term control or even cure option?

Not the best of news so hopefully your consultant will have a better way forward.

Good luck

Ray

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User
Posted 06 January 2015 18:25:33(UTC)

Hi Roy,

 

Not the figure we hoped for as you have thrown everything at this & not held back on any treatments. With your R/T I would be asking the consultant why the psa actually went so low to begin with ( after the treatment ) . And does this guide the next step ? ( i.e. does this suggest that you hit all the right places in knocking psa down or not = still localised ?)

The choice of pursuing another scan to pinpoint a problem area must be with you of course but I'm one for using such facilities until proven to be unhelpful. I guess much will depend on your consultant & how adventurous they are.

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User
Posted 06 January 2015 22:42:49(UTC)
Hi Guys

Thanks for the replies.

Hi Flexi, as you say wait for the Oncologist, and be prepared I wouldn't rule out another PET/CT scan,as for Cryotherapy I have asked in the past if this was a possibility as I know it has been trailed in China I think but the Oncologist said that It would possibly cause to much damage to the bladder and bowel.

Hi Si firstly congrats on the latest PSA and I hope the mets stick to their part of the bargain. Thanks for the info, I have seen this before somewhere and it does seem to suggest that it maybe safe in some cases to defer the dreaded hormones, so I am not adverse to fronting it out for a few more months, or thinking outside of the box as long as I can see the logic behind it, so may do some blue sky thinking. The problem with me is that I will not admit defeat as I am one stubborn so and so.

Hi Ray I agree that at very low levels the scans we have at present are not able to pinpoint spread but until they are improved we have to work with what we have got. On that note whilst I was researching I have seen what maybe an improvement in the way RP is carried out, as we know we have to rely on the skill of the surgeon to remove what he thinks is all the Cancer, but it's not always possible as we know, so a trial is being carried out in the UK which uses the Choline agent which is used in the PEt/CT scan which will then show the surgeon where the Cancer is, while the patient is on the table so he can remove it, I know this is a simplistic view but you get the gist. I have long pondered whether hormones actually provide a cure or put the cancer into hibernation, or even just suppress the PSA produced.

Hi Rob, just like you these a questions are ones I would like answers to, I was told the RT would be targeting the areas shown on my PET/CT scan but it's down to the guy that inputs the figures, I wish I could have been there and made sure. It was IGRT so it should have been accurate if it was planned right, I think the Casodex caused a false reading of 0.05 so I am working on the figure prior to the hormones of 2.7 and now 0.63, as the doubling time seems to have been constant throughout my journey. I know my Oncologist was one of the people that set up the Stampede trial, so I am hoping he is willing to push the boundaries a bit.

Thanks again it means a lot

Roy

User
Posted 08 January 2015 20:10:19(UTC)
Hi

Had my consultation with my Oncologist today, who is of the opinion that the rise in PSA is more than likely not coming from the prostate bed, bladder etc, but from somewhere else, but I remain to be convinced. The plan is to front it out for three more months without hormones, by which time the PSA should be in the region of 1.8
If my calculations are correct, then have a Choline PET/CT Scan to pinpoint the spread and go from there.

Roy
User
Posted 08 January 2015 20:38:03(UTC)

Hi Roy, thinking back to past members whose radical and salvage treatments had failed, I think the PSA reaching 2.0 tended to be the trigger point for discussing the commencement of long term or intermittent HT. Not so long ago there was quite a discussion on here when the onco had told Bri that HT wouldn't be introduced unless the PSA hit 20. My dad is currently around 1.6 and is reluctant to accept defeat until it reaches 10 although, who knows, my nerve might not hold out that long and I am impressed by the stories of people like George & TopGun whose use of hormone holidays seem to work well.

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


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User
Posted 09 January 2015 20:02:38(UTC)
Hi Lyn

I must admit to being concerned as to whether the RT has failed for me, it may be failed logic but the doubling time has been pretty consistent when I have been off HT,
so I would have expected a decrease in the doubling time if the RT had worked. The Onco believes the RT will have worked and the PSA is coming from somewhere else but as I said I am not convinced, so it's a waiting game. Anyone got a view on my thought, am I just looking on the dark side.

Thanks

Roy
User
Posted 09 January 2015 20:23:01(UTC)

Hi Roy,

I think in your case you have to follow - at least three consecutive rises before action is taken. Also with your more unusual treatment of R/T I don't know if any R/T - psa bounce would be relevant or not.

The psa figure of when to introduce HT should really be based on the Gleason score as much as the actual figure I seem to recall. Higher grade = earlier intervention. But whether the diagnosis Gleason score was and is still accurate is of course another quandary. I certainly believe waiting until 10 to be too high for all but the lowest grades & even then ........

 

So yes, waiting game.

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User
Posted 10 January 2015 00:57:11(UTC)

Sorry Roy, I just assumed the onco had accepted that your treatment had failed. My understanding was that with no prostate, anything over 0.2 was confirmation that PCa cells are active somewhere. I think if you get another rise and the specialist still doesn't think it is a problem you should consider getting a second opinion.

Rob, normally I would agree with you about waiting to 10 but Dad is 78 and very busy so he has made a decision that HT is not a place he wants to go. He of course will be slightly swayed by how Stan approached his disease.

Also, we are hearing more now about hospitals using 20 as the trigger for commencing long term HT once radical treatments have failed although I presume there will be some financial motive there to muddy the waters.

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


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User
Posted 10 January 2015 10:04:51(UTC)

Hi Roy,

We each need to follow our own path on this journey of so many twists and turns. You still have the cure fight in you, hopefully that will go a long way in helping you achieve it.

I wish you well on your chosen way forward.

Good luck

Ray

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User
Posted 14 April 2015 10:16:18(UTC)
Hi Guys

Just seen my latest PSA score online, it's risen now to 2.1 which I had already calculated as the doubling time seems to be consistent at 1.8 months so will see my Onco on Thursday to plan the next step which I assume will be a PET/CT scan to locate the area concerned. The thing that concerns me is that at my last appointment, my Onco was adamant the RT would have been successful in the area that was targeted so where is it hiding? And why is the doubling time so consistent if the initial cancer has been treated successfully, I just can't help but think the IGRT may have missed the target, but I suppose the scan will answer that. Just like anyone on here every ache and pain is associated with PCA in our minds but I try not to assume things until I get proof.

I must admit it is difficult to remain positive with results like this and inside I am screaming, but put a brave face on for the sake of others close to me as they get upset if I say what I am thinking, so I can only be open with people on the forum who know what we are all going through at times like these.

So if anyone has any ideas or comments, or questions I should be asking feel free to post.

Roy
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User
Posted 14 April 2015 19:06:24(UTC)

Hi Roy sorry to hear of a continuing rise. Your approach to this has been unwavering and you've thrown everything at it so far. I'm hoping you will maintain that same resolve to continue the 'fight'.

I don't really have any advise apart from discussing all the possible treatment options with your oncologist. Are there any trials available where you may be able to access the latest treatment combinations.

Either way I'm thinking of you but sure you will rise to this challenge.

Let us know how you go on on Thursday

Bri

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User
Posted 14 April 2015 20:30:06(UTC)

Hi Roy,

Like Bri I can't offer any advice but I just wanted you to know that I am reading your posts and thinking of you. Good luck for Thurs.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 15 April 2015 07:27:11(UTC)
Thank you Bri and Julie for your encouragement it means a lot to know people are reading our posts and thinking of us, it's hard to know as now there is no reference to the number of people accessing the post as there was on the old forum.

Thanks

Roy
User
Posted 15 April 2015 08:33:22(UTC)

Hi Roy,

Just wanted to add my support for you too.  You're in my prayers that everything will be sorted for you soon.

Steve

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User
Posted 16 April 2015 19:25:19(UTC)
Hi

I saw my Onco today and the plan is to have a PET/CT scan and take it from there, so not much to report. One thing he did mention which I questioned was when to intervene with the hormones, his opinion was to leave them out of the equation for as long as possible, but with a cancer acting quite agressively I am not so sure, but that's a discussion for another day when the results are in.

Thanks

Roy
User
Posted 16 April 2015 22:42:09(UTC)

Hi Roy,

The important thing is to try to establish where the cancer cells are as your Onco plans to try to ascertain. This may prove very difficult even with better scans than a CT/PET scan (an MR PET Choline or 68 Gallium are better). If the cancer is found to have spread it is likely that HT may be given sooner or later. However, if the cancer is seen to be sufficiently contained, it may be possible to have another salvage treatment. Although I still have a prostate, albeit a radiated one, I am in a similar situation in as much as I am waiting the results of scans to determine whether I have HT to deal with the cancer systemically or yet another different salvage treatment to the greater prostate area.

Barry
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User
Posted 22 April 2015 17:30:10(UTC)
Hi Guys

Just received a call from the QMC to tell me the Choline PET/CT scan is to take place next Wednesday 29th, so not long to wait.

Roy
User
Posted 22 April 2015 21:03:37(UTC)

Hi Roy,

At last a date for your new scan , I have everything crossed for you. I agree that with the old forum we could see how many people were reading our posts and now we have no idea .  

At least you know that I am reading. 

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 22 April 2015 22:34:13(UTC)
Thanks Julie

Nice to know people like you are here for me and others on the forum, I was please the scan has been arranged so quickly ie within 2.weeks. Time to find out where the little b****r is hiding lol.

Roy
User
Posted 22 April 2015 22:51:38(UTC)

Good luck Roy :-)

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


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User
Posted 07 May 2015 09:12:35(UTC)
Hi

Well finally had my Choline PET/CT scan yesterday as the one scheduled for last week was cancelled at the last minute due to the scanner breaking down. The procedure was straight forward and took nearly 3 hours from start to finish.

Compared to the one I had in Munich it was totally different as all I had to have this time was the infusion of the choline, wait an hour and go through the scanner twice, so no being joined up to high pressure lines or contrast gel being forced where the sun doesn't shine etc etc so quite uneventful really.

So now it's a waiting game to see where the spread is. I am imagining it spreading to every area I have a ache or pain in, Like the bones, abdomen etc but no use guessing I will have to wait and see and will update as soon as I know.

Roy
User
Posted 07 May 2015 20:50:45(UTC)

Roy I'm hoping the results are not as bad as you are anticipating. Easy for me to say but we know how easy it is to put every ache and pain down to the PCa.

Let us know how you get on mate

Bri

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User
Posted 07 May 2015 21:09:18(UTC)
Roy I will be hoping all your aches are insignificant and that any spread is minimal.
Best wishes
Xx
Mo
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User
Posted 07 May 2015 21:50:28(UTC)

Hi Roy,

Well at last the scan is done and know for the wait for results life never gets any easier does it. The waiting always seems to take forever . I certainly know what you mean about every ache and pain being attributed to the pca. On the outside I look calm and incontrol underneath the water I am paddling like a very manik duck every time Trevor sneezes..

Funny how the voice of reason is so easily drowned out by the voice panik.  

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 18 June 2015 18:54:11(UTC)
Hi

Well the results from the Choline PET/CT scan are in. First the good news, it seems that the RT I had has taken care of the spread to the bladder/prostate bed area as there was no indication on the scan that it is still active.

Now for the bad news, there was uptake of the Choline in the right pelvic bone near to the sacrum area, which was my worse nightmare scenario. At the moment it is only small, about 8mm in size, and looking back at the previous scans it was there over a year ago but was not active at the time, but has now decided to wake up and make its existence known.so the question is what do I do about it?, what options are open to me?. At first the Oncologist seemed to be heading in the direction of hormones only to control it, until I questioned whether it could be treated by RT to eradicate it rather than just relying on hormones alone, to which he agreed so I am to have a MRI scan to pinpoint it more precisely and see if it can be reached by RT or Cyberknfe.

So if anyone has any suggestions as to treatments etc I can look into then feel free.

Thanks

Roy
User
Posted 18 June 2015 19:31:54(UTC)

Hi Roy,

A bit of a mixed bag, a question for Jamie on Saturday i think. i have copied below some of his interests.

 

Along with colleagues, he has developed, and implemented Image Guided Intensity Modulated Radiotherapy (IG-IMRT) with Volumetric Modulated Arc Therapy (VMAT) for Prostate cancer, as well as using Tomotherapy to treat Rectal cancer. Research interests include SiR Spheres, for which he is the Principal Investigator in Nottingham, and drug development

Si

Don't deny the diagnosis; try to defy the verdict
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User
Posted 18 June 2015 19:53:39(UTC)

Sorry to hear this latest development Roy...but it sounds like there are still options to try and get shut

Keep kicking it's ass mate

Bri

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User
Posted 18 June 2015 20:02:52(UTC)
Thanks Si

It would be good to get Jamie's take on it, but I am unable to be there, but if you get chance to ask him it would be great. Hope you all have a great time.

Thanks Bri, another battle to fight, the WAR is not over.

Thanks again

Roy
User
Posted 18 June 2015 20:02:52(UTC)

Hope they can get it sorted, Roy,

steve

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User
Posted 18 June 2015 20:50:46(UTC)

Sorry we will not be seeing you Roy, i will print off your post and get Jamie's take on it.

All the best

Si

 

 

 

Don't deny the diagnosis; try to defy the verdict
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User
Posted 18 June 2015 22:42:36(UTC)
Roy
sorry you are not going to be at Leicester, I will scribe for Jamie's reply to your question.
xx
Mo
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User
Posted 19 June 2015 09:21:01(UTC)
Hi

Just checked my blood test online which was taken yesterday and it gone up from 2.1 in April to 4.6 so a doubling time of 1.9 months so it pretty consistent in its aggressiveness, so the sooner I get this sorted the better.

Question ? Does the PSA increase relative to the size of the cancer ie if the PSA doubles, does the size of the cancer double ?

I have seen that Oligometastastic can be treated with curative intent by RT, so this video may be of interest to some.

www.youtube.com/watch?v=NkqizmvqJPo


Roy
User
Posted 19 June 2015 11:40:24(UTC)
Roy
I have always said your research and knowledge is top drawer. I have just sat and watched the video 30 mins of amazing information, incredible scan pictures and a very clever and pioneering man. It really does give enormous hope to anyone with access to a choline pet scanner and a brave and forthright oncologist.
I found the video a bit frightening as well as enlightening, it all sounded so very straight forward and made me think whay have we not seen so much more progress in treataing even advanced forms of PCa to give men a chance of remission.
I guess this is all a bit too much for the budgets and constraints of the NHS though.

I suspect this video and its content may form a big topic of coversation at MOS this weekend.
It is probably the first thing I have seen that talks about treating advanced disease that also provides a heads up for those who are doing great at the moment but may get progression in times to come.

It seems to suggest the answer to your question is yes the level of PSA has a direct relation to the amount of spread. Especially if you look at the case of the 40 year old with a PSA of 25000 .

Thankyou so much for sharing this

wish you could have been at Leicester
xx
Mo
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Posted 19 June 2015 14:21:09(UTC)

I belive its more complex than a direct relation.

Two reasons of which I've no doubts there are many more:

1)PSA could all be coming from the tumour or from that and spread elsewhere.

2) Many different types of PCa so in general terms and my understanding is: as the tumour develops the centre of it has more aggressive cells. Initially they will produce more PSA but as they become more aggressive will not increase PSA and or even produce less.

As regards a possible way forward: RT to zap site of known spread and HT to hopefully kill of any dormant cells elsewhere.

Good luck

Ray

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Posted 19 June 2015 15:02:35(UTC)

Hi Roy L,

 I finally received the results of my PET scan this week. Not bad for one that was (allegedly) requested in January and took place in March!

 

  Like yours, mine was a good news/bad news result.

It appears that the bed of the prostate is clear (I have had both RP and RT)

However, one lymph node was (I think the term the urologist used ) 'glowing' indicating the presence of PCa. This, I was told is likely to be the source of my PSA of 0.7

He did reel off a name but it went in one ear and out of the other but apparently it's by the junction of the main body artery and the leg artery.

The urologist said that a removal by him would be difficult with no guarantee that the correct node would be removed.

I am being referred to a oncologist to see whether RT would be feasible.

Best wishes,

Dave

 

Not "Why Me?" but "Why Not Me"?
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Posted 19 June 2015 20:30:18(UTC)
Thanks everyone

Mo I am pleased you enjoyed the video, it just goes to show not everything is lost if the Oncologist is open minded and willing to push the envelope. I think you hit the nail on the head, money or the lack of it drives most things in this world unfortunately, if I was willing to pay I could have this done and dusted in a month, but hey ho.

Ray thanks for the info. As you say this disease is more complex and logic doesn't always come into it. The reason for the question was that as I am not at the moment on hormones, if I front it out with the rapid doubling time my cancer is showing, will the scan I have be out of date in relation to the area used to plan the zapping if the time frame is extensive, but I would assume there would be some sort of margin added to prempt this.

Hi Dave pleased to hear the PET/CT scan has finally produced answers for you in that it has identified the spread and can now be sorted, I assume the surgeon is worried that he may give you lymphodema due to where it is situated. It's a pity this type of scan is not available from the start for everyone instead of assumptions and statistics.

Thank you all

Roy
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Posted 20 June 2015 07:43:02(UTC)

Hi Roy
We often get asked will x time before treatment matter. The reply is most often no as growth in tumour will be minimal. However at G8 and above HT is normally given to hold matters steady (except some going for RP). That's how I see you: at high risk of spread so HT to hold matters steady. It's the gamble again - have I PCa cells elsewhere ? If yes HT if no hold back.

Will they allow for any tumour spread - there is circa 6 weeks between planning and having RT so I guess that's the time scale they allow for?

Good luck

Ray

User
Posted 21 June 2015 12:26:39(UTC)
Roy

your 2 part question was asked of our wonderful guest Onco yesterday, is there a direct relation between increasing PSA and size of tumours ...simple answer NO .

Can an isolated and identified met be treated by RT or cyber knife ..yes although if the recurrence is in the same place where RT has been used previously there can be some risks involved.

So quite good news it would seem.

Best wishes
xx
Mo
User
Posted 21 June 2015 18:23:54(UTC)
Thanks Mo

I really appreciate the questions being asked on my behalf and of course the reply from the Onco who I assume was J.

As time goes by, the options open to me become less and less, so it's good to know this could be an option for me with the possibility of durable remission. Do you know if anyone past or present on the forum have undergone RT to the bone as a curative and not a palliative treatment, and if so what was the outcome.

Thank you

Roy
User
Posted 21 June 2015 19:24:02(UTC)
Roy
I don't knoww of anyone personally, but J was quick to say Yes to your question about using RT curatively to small individual recurrence mets. So I have to assume he has either done this himself or he has seen reported cases of it.

Of course you have to remember he is not giving specific advice he cannot do that without seeing all the information so this was a generic answer.

Best wishes
xx
Mo
User
Posted 21 June 2015 22:04:50(UTC)

He said it was possible but only if there was a strong case for believing that the hotspot was singular and isolated. He quickly followed it up by saying that there is no point if there is a possibility that other clusters exist but are too small to see. He also said that it is only possible if the area to be irradiated is not next to an area that has had RT previously (ie only done if the rays are not going to be touching on a previously irradiated prostate bed etc)

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


User
Posted 22 June 2015 18:39:48(UTC)

Hi Roy,

Sorry to hear about the PSA rise, I found your link fascinating so thanks for that.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 June 2015 06:42:08(UTC)

Originally Posted by: Online Community Member


.... It's a pity this type of scan is not available from the start for everyone instead of assumptions and statistics.


Roy

 

 Hi Roy,

I feel I can relate to that.

When my PSA rise after RP continued, the urologist referred me to the oncologist, with a view to salvage RT, stating that; "I'll leave it up to (oncologist) to decide whether to give you a scan beforehand"

At the time, I didn't think too much of it, cobblers sticking to their lasts and all that. But on reflection, I'm not so sure.

If it was a case of 'Should I or shouldn't I send him for a scan?" I would think that the reasonable action would have to have proceeded with a scan - especially as I was going private so there should have been no financial down-side for them.

On the other hand, my RT treatment was NHS, was the decision not to scan beforehand (apart from normal pre-RT checks) made on financial grounds?

In the event, I had my RT and my PSA didn't change. I now wonder, based on my recent scan which showed no PCa on the prostate bed, whether my RP was successful and in fact my prostate bed was clear of PCa because of the previous operation and that the PSA result was coming from the 'glowing' lymph node.

Of course it can only ever be guesswork, but was not only the RT on my prostate bed unnecessary but having had it, does it now disqualify me for RT on the node?

It's not something I dwell upon too much, what's done is done. And as I say, only guesswork but I mention it because I believe all info on experiences may benefit by being shared.

Dave

Not "Why Me?" but "Why Not Me"?
Thanked 1 time
User
Posted 23 June 2015 11:42:06(UTC)
Hi

Thanks Lyn for the additional info from J. The point regarding only treating it if it is singular surprises me, as I believe that in other countries upto 5 areas are able to be treated and in this country upto 3 areas can be treated although there are not many even willing to do that, but I suppose like everything else it comes down to resources etc. I do think some Oncologists are too quick in following the palliative path and follow the NICE guidelines, rather than go for a durable remission.

Thanks. Julie I am pleased you found the video informative as I hope other people find it helpful.

Hi Dave I share your concern regarding treatments undertaken without definitive proof of where the cancer is situated, surely this cannot be of benefit to the patient and the NHS budget. Was your Treatment IMRT and only focused on the prostate bed or was the treatment area more wide spread to catch any theoretical spread elsewhere in the abdomen, as the more focused approach would have been better for future RT. I do hope your lymph node treatment is successful and you can then put this all behind you, so please keep us informed.

Thank you all

Roy
User
Posted 23 June 2015 11:46:19(UTC)

Hi Roy,

I had this discussion with Jamie a long time ago, and with the right equipment he would go after 4 sites. unfortunately i had a lot more than that.

I wish you all the best going forward, i love people that try something just a little bit different.

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 23 June 2015 12:53:29(UTC)

John's salvage RT was to prostate bed and bottom of bladder as spread to bladder had been apparent when they opened him up for the RP. The surgeon had ended up removing the bottom part of his bladder and doing a re-design. It therefore seemed reasonable to include in salvage RT as the most likely site of recurrence.

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


User
Posted 02 July 2015 16:40:01(UTC)

Originally Posted by: Online Community Member



Hi Dave I share your concern regarding treatments undertaken without definitive proof of where the cancer is situated, surely this cannot be of benefit to the patient and the NHS budget. Was your Treatment IMRT and only focused on the prostate bed or was the treatment area more wide spread to catch any theoretical spread elsewhere in the abdomen, as the more focused approach would have been better for future RT. I do hope your lymph node treatment is successful and you can then put this all behind you, so please keep us informed.

Thank you all

Roy

Hi Roy,

   Thanks for that, the short answer to your question is 'I don't know'. I would suspect it was focused only on the prostate bed. I had hoped at the time to get some idea of the 'footprint' but it wasn't easy and I was unsuccessful.

Getting information on my RT was like getting blood from a stone - I might just has well been asking the Onco for the name of his tailor!

My reason for finding out, apart from natural curiosity, was that the Urologist and the RT man seemed to be on a different wave-length. Prior to my salvage RT the Uro man stated that he was asking the RT man to concentrate a higher dosage on one side of the prostate bed as that had the higher Gleason score.

 However, when I asked for details of my treatment, all I was told was that "It's 2 gy times 33 = 66 gy" It was even written down of a piece of paper for me!!

  The talk amongst the Prostate Men in the waiting room was that there was one senior radiographer taking (among others) the weekly progress meetings, who was really informative and would demonstrate with the scanning and x-ray images, what was going on. The guys were clearly aware that he was the exception and weren't too impressed with the others who were either senior radiographers or a MacMillan nurse.

 Unfortunately, I got the others on my progress meetings and they took the form of one-way interrogations- "Any bleeding?, any soreness? That's good, see you next time"

 I broached the subject again, trying to ascertain whether the Urologist's recommendations had been followed only to get the following response.

   "Well, urologists do what they do, and radiologists do what they do"   I took that to be a no.

 Shortly I am to see an oncologist (the same one). As the Urologist didn't have sight of the imaging or the scan results (and thus wasting a consultation), and just (by default) a faxed report of the scan for the next consultation, I was keen on ensuring that on the next appointment, the onco would have the scan imaging  available to him by  accessing it in advance from UCLH

So I phoned the man's secretary who said, "Oh he probably won't need it for this consultation, but maybe later"

I would have thought the "He might" might have been a more prudent approach than "probably not"

Picking up on my unease at that, she sort of relented but that may have been in order to humour me.

So we will have to wait and see.

 Dave

Not "Why Me?" but "Why Not Me"?
 
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