Forgot to say that FACBC has already been trialled in Italy which is where they concluded that it was a better option than choline. Small scale project from the look of it but if interested, search for Nanni et al
I also have another new word - oligometastatic prostate cancer. This apparently means that the cancer has spread but there are only a couple of met sites. It is being used to describe the (currently hypothetical) intermediate state between curable PCa and incurable PCa; for instance where the very few mets could be treated by surgery, targeted RT, nanoknife or whatever. Manwith and Roy, perhaps this makes you both oligorchs?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Lyn
Glad you have a plan in place. The FACBC scan looks really promising, I didn't know they use it over here maybe we are catching up at last. I think the key to these scans is the scan itself, as I have just found out with my case, let me explain, the Choline PET/CT scan picked up a single spot of spread to my right pelvic bone of 8mm and the plan was to zap that area, but during my planning I had an MRI scan which was more detailed than a standard MRI, this picked up an additional area of spread to the left pelvic bone of 5mm that wasn't picked up on the CT scan,why? Well the CT scan takes images in 3mm slices and dependent where the scan lines fall may only hit the target once and be easily missed but the MRI I had scanned every millimetre so scanned the Spread 5 times and was seen clearly. By the way if it helps your research I have a simple cyst on my right adrenal gland and have always questioned if it was relevant to my case.
The term Oligometastes I believe translates to Few Metastases and is used to signify different amounts of spread in different country's, I think it's 3 over here and 5 in America. Anyway off to bed now as I have my final 10gys later today.
All the best
Roy
Edited by member 25 Nov 2015 at 01:09
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Hi Lyn,
Hope you are wrong about bacon and mince pies as I have the former a couple of times a week and perhaps up to a dozen of the latter a week now they are available in in the shops. I am being closely monitored which includes regular PSA tests and at no time have I been warned that eating these things, or any other foods for that matter, will affect PSA but it's food for though to play on words.
It is very interesting that John is to have a newish type of scan termed FACBC (must research this). Had I known about it earlier yesterday, I would have asked my consultant, who checked on me, about it. (Not suggesting you were slow to post, just that it was a lost opportunity). He did confirm though that the PSMA scan is now available in certain situations at UCLH. These new advanced scans show Oligometastatic prostate cancer better, though finely spread cancer cells can still be missed. As regards the term Oligometastastatic prostate cancer, perhaps you did not read the link which Roy found and I subsequently repeated on a very pertinent lecture given on this subject, so I will give it again. I very much take the point made by Dr K that the longer cancer cells that have escaped the prostate remain untreated, the greater the risk becomes of these mutating and spreading, thereby in time making it more difficult to kill them with any one treatment. https://www.youtube.com/watch?v=NkqizmvqJPo
I, and I am sure everybody here wishes it goes well for John.
Edited by member 25 Nov 2015 at 10:38
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Barry |
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All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
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As you say Lyn not the best of days but not totally unexpected I suspect. I keep a close eye on J's progress having had a similar dx.
The plan sounds good....and good to hear about the FACBC scan up here in the north.
Keep us updated with your research...if PSA rise can be associated with stress I need to consider meditation or something ;-)
Hope you can both switch off and enjoy a good Xmas...pity you are not going to London I could have bought you a pot of tea
Bri x
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Hi Lyn just to wish you both the best for scan and re-test.
I obviously read all this with interest having suffered bipolar , panic , anxiety agoraphobia etc. And the fact I have 2 half inch lumps on an adrenal ( re-scan next month ). Also interest re the Choline PET I had. Did they get it wrong ? It took 3 attempts remember and each time was due to tracer production or delivery etc. Apparently it's VERY unstable. I forgot to say they only pick up cancer clusters greater than 7 to 8 mm also.
We are quite upset they are saying I'm probably advanced due to my PSAs , yet are still throwing RT at me out of guesswork. That's why I put it off tbh. Not angry or upset but confused. And then Uro says I'm curable. I can feel a lunch-time drinking session coming on with a bacon baguette but will have garlic stuffed olives tonight to negate it all. I wish you were running my case gal :-)).
All the very best
Chris
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Lynn though not unexpected still a shock.
On the plus side J has got you .Reading posts you have written the research you have done they have definitely picked on the wrong person.
We know you have had better days but J will know you will leave no stone unturned no question unanswered
We hope everything goes well for you both
Everyone on here will be thinking of you and hoping the same
Edited by member 25 Nov 2015 at 10:05
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Lyn
Not the best day for you or John. Thank goodness your medical team sound very on the ball. Of course your devotion and dedication to researching anything to do with this rotten disease is amazing.
I think diet sometimes does help for some people but I also think if you enjoy a bacon butty now and then, well that is part of the QOL balance.
The anxiety raising PSA has some merit, I know it does effect other blood results so why not? I guess the biggest trauma will be resolving the issue that is causing the anxiety. So much easier said that done, I do hope John can get it sorted somehow.
All my best wishes and lots of hugs
Xx
Mo
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Best wishes and good luck to you both. Diesel.x
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Sorry to hear of your news.
Sending best wishes you both. J is very fortunate indeed to have you as a wife.
Thank you for all the support you give to the forum - this is very much appreciated.
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Sorry to hear this news Lyn but it sounds as if you and your team are well onto it. I doubt the connection with bacon butties (wiping the grease from my face as I guiltily imbibe in the same) you have to enjoy life! I like the sound of the new scans. I have heard about the the treatment on a small number of mets which does sound interesting. Hope all goes well for you and John!
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Hi,
Just wanted you send you my best wishes and hope that everything turns out ok for John.
I've had a PSA rise before and it does make you feel quite nervous. My next test is tomorrow so I will feel uneasy until I get the results on Tuesday.
Steve
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quote from lynn
I also have another new word - oligometastatic prostate cancer. Manwith and Roy, perhaps this makes you both oligorchs?
perhaps they could call it Ollie mets not be confused with Ollie murs
joking aside here is to everything being ok
regards
nidge
Edited by member 26 Nov 2015 at 05:55
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run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
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Lynn you know far more than I ever will about this rubbish disease so there is no advice I can give on what is best but I can give you and all your family my hopes and prayers that between you and the quacks you come to the best way ahead.
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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L & J
Sorry to hear the result was not good news. I am quite a few years behind J treatment wise but know how you must be feeling. I put my latest small rise down to the surgery, but I hope you are right about the stress effect, I was very stressed about the outcome of the op.
All the very best for the future.
Thanks Chris
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Hi Lyn,glad you have had some good news at last,i went for my first post op PSA yesterday 5 weeks after RAP,i get my results next Thursday when i see the surgeon.Its all in "The lap of the Gods"so to speak.Everyone on here is in the same situation though.Would you be able to explain briefly how low a reading would be to be viewed as acceptable&what i might expect him to say.Daft question to ask you really.This next 7 days waiting will be interesting.Best wishes.Polarbear2.
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I second what irun has said.
I would love to give you advice as you have given me, but I just don't have it to give.
I can however give you both my heartfelt best wishes and feel quite sure of a positive outcome.
Don't forget, today is the tomorrow you worried about yesterday.
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Originally Posted by: Online Community MemberHi Lyn,glad you have had some good news at last,i went for my first post op PSA yesterday 5 weeks after RAP,i get my results next Thursday when i see the surgeon.Its all in "The lap of the Gods"so to speak.Everyone on here is in the same situation though.Would you be able to explain briefly how low a reading would be to be viewed as acceptable&what i might expect him to say.Daft question to ask you really.This next 7 days waiting will be interesting.Best wishes.Polarbear2.
Hi Polarbear,
I think you have misread my post - it wasn't the worst news ever but definitely not good news :-(
I think that when you go to your appointment, the ideal will be that you are told:
- your PSA is less than 0.1
- you had no positive margins
- the Gleason score hasn't changed loads (it is okay if the Gleason changes a little bit)
- the surgeon gives you a prescription for Cialis or refers you to an ED clinic
- he doesn't think you need any extra treatment
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks everyone.
John has had a couple of days of being a bit sad and scared and then, true to form, has wiped the entire conversation from his consciousness. If I could bottle his capacity to do this, i would make a mint.
I have read every research paper I can find - frustratingly, not one study has concluded that stress can raise PSA and most have found the opposite. It seems there is no known link.
Damn
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Lyn,thankyou for your reply,the points you have outlined&im sorry i misinterpreted your earlier post.I must read more carefully before blundering in.
Best wishes.
PB2.
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Hi Lyn
Sorry for my post too which seemed insensitive on re read :-0 I was very interested in the Adrenal fatigue and scan details. I don't know what to say as you're the " doctor " , but it isn't 0.1 yet and could still be a variety of things / factors other than PCa as you well know. I just hope he is coping as I know what daily flight fight is like , and that xmas goes by smoothly before those tests.
Wishes x
Edited by member 27 Nov 2015 at 07:30
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Back today from our week's break so catching up with everyone's posts.
Sorry that you've had more upsets. Perhaps John's way of dealing with it all is the best way, certainly once the initial shock and disappointment are past. Less stress that as for him. Not for you, of course !!
We can't control the winds - but we can adjust our sails |
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A letter arrived from the onco on Christmas Eve - we are called to see him on Jan 12th which is earlier than expected so either a) he has a place on the new scanning trial or b) they have at last found the details of Stan's cancer and there is something notable about it.
I had mentioned (again) at the November appointment that Stan had died with extensive mets and a PSA of 1.2 but that we still didn't have a response from his onco about whether it was definitely adenocarcinoma - maybe the oncos and uros are finally communicating with each other?
If it is the trial, let's hope the findings are brilliant and the tracing agent is quickly made available in all regions - happy 2016 to you all x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Lynn, Happy new year to you and John, and all the men and their loved ones on this forum, Best wishes Diesel x.
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Here's hoping it's about the scan Lyn. Probably is ! Either way it's info that you need and no-one else can process it like you. I wish you were my tag partner !
All the best
Chris
Ps. Your inbox is full
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Hope it gets sorted out to your satisfaction.
Happy New Year to you and yours too.
and yes Chris, Lyn fighting our corners for us would be ideal. I wish you'd been with me in the GP surgery a few weeks ago.
I could have done with you then to fight my corner
We can't control the winds - but we can adjust our sails |
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Hi there Lyn
I have been thinking about you and reading with some amusement your antics over Christmas with your family!! I was also looking at all the flooding on the news and hoping that you and yours would all be safe.
Whichever outcome it has to be news you need to know. The never resolved mystery but one which when answered, may give you even more insight and foresight. Information that you can then absorb and use to guide and support others on this forum as you do so magnificently. Or possibly acceptance to the new trial for John which would really be welcome news.
Be sure to let us know either way.
all my very best wishes
xxx
Mo
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Love and loveliness coming your way for 2016 .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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We have decided to delay the appointment with onco for a week and squeeze in a quick trip to Gambia (going tomorrow) - I was just a little bit anxious to do the trip asap in case there was new information or a change in John's status that would require me to notify the travel insurer.
Appointment with Mr B is now the 19th Jan, cases are packed and it is 34 degrees in Kotu :-)
Edited by member 09 Jan 2016 at 09:10
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hang on a minute I would like some 34 degrees
Have a lovely time
Si
Don't deny the diagnosis; try to defy the verdict |
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Hi lyn
Have a fabulous holiday and a well deserved break, am very jealous!! ;-))
Lesley x
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Lyn,
Have a great break. I spent a few days in the Gambia mainly in Bathurst (since renamed Banjul) many years ago on business. At that time there were only a few tourists and one could walk about safely without being pestered by vendors. My daughter went more recently after more hotels had been built and tourism increased vastly. She was advised to stay within the parts of the beach flanked by security guards. Incidentally, she took Lariam as a prophylactic for Malaria and had severe long lasting effects from it.
Barry |
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Wow Lyn, don't blame you and what you don't know can't hurt you. Hope you and John have a wonderful break
Lots of love
Allison xxx
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Seize the moment Lyn
have a terrific time, never been to the Gambia but very keen to hear all about it from you.
all the very best special Lady
xx
Mo
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Hi Lyn. Good decision. Hope you have a great time. I like the way you keep everything in perspective. I become panicked when any results tests, appointments are due and let it monopolise all my time and energy. Quite possibly ours may be a similar journey to John's although we are earlier down the track and Erwell is quite a bit older . I can only learn and take comfort from others. Cheers Georgina
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Gambia was superb, we know the place well and have managed to get there every year since John was diagnosed. It is a different holiday to our others; generally we go on holiday to be very insular and spend all outer time together but in Gambia, John spends days trekking through the undergrowth bird-watching with our favourite guide while I combine poolside reading with a bit of work-related research. Bliss on all counts.
Back now and we have onco Tuesday and a small op for me on Weds - and a website to design for the birdwatching guide.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Sounds heaven Lyn. So glad you had a lovely time and relaxation. Count Elaine and I in on any birdwatching stuff. We love twitching at an amateur level.
Good luck Tues
Good luck Weds
Good luck !
Chris
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Glad you had a good holiday.
Good luck to both of you for Tuesday and Wednesday.
Keen (but generally useless) birdwatchers here too
We can't control the winds - but we can adjust our sails |
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Lyn
welcome back we missed you!
My brother is the big birdwatcher in our family, I must admit I really enjoy the bird observations I get to do in France when cycling with him and my SIL. I can't really call it watching as I dont actually go out looking specifically they just seem to happen along. I do get very happy when I actually see and identify one correctly though!
Good luck to both John and yourself with your appointments.
xx
Mo
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Welcome home, Lyn.
Glad you had a nice trip.
I hope the appointments go well for you both this week.
Steve x
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It turns out the appointment was a mistake, the onco doesn't want to see John until the end of February so it was a wasted journey. Very disappointing news while we were there though - John will not qualify for the trial as the criteria are a PSA of 0.2 or above after RP with adjuvant RT. Salvage RT does not qualify.
So new plan offered - PSA test in Feb, choline PET scan and then decide what to do next.
The other thing he mentioned was that the Leeds hospitals are getting new lab machines this year so PSA tests may be a bit all over the place for a while - good to get some baseline tests in first. Also that a patient under him and Liverpool gets a much lower reading in Liverpool than at Leeds .... the differential being significant enough that they nearly put him back on treatment thinking that he had had a sharp rise :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Just goes to show ....... as is often communicated on here , that interpreting such tiny figures can actually lead to unnecessary treatment and mental turmoil. Also Lyn did you get detail on the CholinePET as has been discussed by members ? It's a very rare offering as you told me , but why is one area saying it is ineffective below PSA 3 and then another offering it at a PSA <0.1 ??
In fact I'm becoming astounded how different health areas treat identical cases in such different ways , with alternative meds , treatment times , doses etc etc. It's all actually a bit voodoo isn't it.
Anyway obviously you are going to bite their arm off !!
Best wishes
Chris
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Wo back up just a minute, so Gambia and now home duly noted so is the next trip Liverpool ? Seriously you are going to have every man rushing to Liverpool for there next PSA test.
Got to go apparently the train line . Com is doing offers on a Beatles tour. 😀
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Lyn
how annoying, wasted journeys, unnecessary worry and being told that John can't get on the trial. Not any of the news you wanted I am sure you will process that information and just move on you both always seem to have that "bounce back" capability.
I am looking forward to John posting some of his Gambia birdies on FB too....please?
Hope to see you both soon
xxx
Mo
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Lyn
Some definitive info on Choline PET. I heard you like a good read.
It was published on the PCUK Facebook page
http://molecular-cancer.biomedcentral.com/articles/10.1186/s12943-015-0481-3
Edited by member 22 Jan 2016 at 08:08
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Thanks Chris - I didn't even know PCUK had a FB page!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Elaine showed me ! A whole page with many many members not on the forum. And she put me on an American prostate cancer Facebook group also. To be honest I don't like it because everyone just seems to want to help themselves and not reply. The feed is so quick you lose your posts etc. I know this forum isn't private , but it's far more enclosed than the public PCUK Facebook site. The American site is full of people sending prayers ( which is fine but not my cup of tea ). In fact I've realised this little forum is just fine on its own
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I agree Chris. Suits me fine even though I live in Australia. I relate to you folk a lot better than Americans and I have not had much success in finding Australian groups. Georgina
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Georgina there is a facebook page which I found a while ago for a friend Prostate Cancer Foundation of Australia.
You've probably already seen it but just in case you haven't. I did just check it out and it is a facebook page
We can't control the winds - but we can adjust our sails |
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Hi Georgina,
Though not a Facebook page there is an excellent site founded by an Australian, the late Terry Herbert. It is called YANA (You Are Not Alone Now). I strongly recommend it and although it has become international, think it likely that it could be instrumental and putting you in touch with a local support group. http://www.yananow.org
Edited by member 23 Jan 2016 at 16:01
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Barry |