Has RT Failed

Has RT Failed

User

Posted 22 Apr 2015 at 22:03

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. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 22 Apr 2015 at 23:34

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 Apr 2015 at 23:51

Good luck Roy :-)

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

User

Posted 07 May 2015 at 10:12

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

Edited by member 07 May 2015 at 17:02 | Reason: Not specified

User

Posted 07 May 2015 at 21:50

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

User

Posted 07 May 2015 at 22:09

Roy I will be hoping all your aches are insignificant and that any spread is minimal.

Best wishes

User

Posted 07 May 2015 at 22:50

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.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif.

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

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 18 Jun 2015 at 19:54

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 Jun 2015 at 20:31

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

Don't deny the diagnosis; try to defy the verdict

User

Posted 18 Jun 2015 at 20:53

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

User

Posted 18 Jun 2015 at 21:02

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 Jun 2015 at 21:02

Hope they can get it sorted, Roy,

steve

User

Posted 18 Jun 2015 at 21:50

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

All the best

Don't deny the diagnosis; try to defy the verdict

User

Posted 18 Jun 2015 at 23:42

Roy

sorry you are not going to be at Leicester, I will scribe for Jamie's reply to your question.

User

Posted 19 Jun 2015 at 10:21

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 Jun 2015 at 12:40

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

User

Posted 19 Jun 2015 at 15:21

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

User

Posted 19 Jun 2015 at 16:02

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"?

User

Posted 19 Jun 2015 at 21:30

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

User

Posted 20 Jun 2015 at 08:43

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

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