I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

12>

One step nearer Salvage Treatment

User
Posted 11 Feb 2015 at 22:21

As some may recall, I was referred by the Marsden to check whether I was a suitable candidate for HIFU.  The consultation was last week at University College London Hospital (UCLH) or (UCL) as it is sometimes abbreviated. I was told that I met the criteria  for the 'FORECAST' Study ( FOcal RECurrent Assessment and Salvage Treatment), provided they were satisfied that the cancer was localised.  To check this I have to have yet another MRI scan, a PET Choline scan and a bone scan. If these tests are OK, I will have either HIFU or Cryotherapy depending on precisely where the new cancer is located and be one of the 177 men  to be recruited  on this 'multi-centre trial evaluating a novel imaging based complex diagnostic and therapeutic pathway intervention for men who fail radiotherapy for prostate cancer.'


I asked why I needed another MRI scan as I had only recently had an endorectal coil MRI scan at the Marsden. I was told UCL did not do these and preferred their own MRI scans which were 'the best in Europe'. I asked why this this was so when some other hospitals like the Marsden had 3 Tesla machines and competent radiologists. I was told that the difference 'was in the sequencing'. Hype or fact I don't know but good to have confidence in what you provide!


The Choline PET scan and MRI have been booked for two dates in March - lucky in this respect as apparently they only do 2 Choline scans a week, the product needing  to be used immediately after being made as it degrades very quickly.


I asked about the timescale from consultation to treatment and was told approx 16 weeks. 


Fingers crossed, scan results mean I will be accepted into the study. 

Barry
User
Posted 12 Feb 2015 at 09:52

Good luck Barry - keep us up to date.


dl

User
Posted 12 Feb 2015 at 12:12
Barry, brilliant news that you are being assessed for this trial, I will make lots of wishes for all the tests to go well so that you can undergo this leading edge treatment.
xx
Mo
User
Posted 12 Feb 2015 at 20:57

Fingers crossed that the scans are negative and you can start your treatment

Bri

User
Posted 13 Feb 2015 at 23:55

Thanks to those who have wished me good luck on being accepted into the trial. I will update position in due course as others may find themselves in a similar position to me. The basic details of the information about the study is prefaced by saying that up to one third of men who have radiotherapy for prostate cancer can develop recurrence within 8 years. (This is very much in line with what Rob said elsewhere when he gave the guide figure of 30% I seem to recall.) If this salvage treatment proves successful over the medium to long term, as it is hoped, this may prove a preferable treatment to salvage surgery which not many surgeons will do after RT because it makes an already intricate operation more difficult due to scar tissue and charring of the prostate. Also,I was told that surgery after RT results in about 80% of men being incontinent, something I would not want to risk. HIFU or Cryotherapy though not always without complications, therefore seems to me to be worth a shot rather than have surgery or opt for Active Surveillance/HT. Of course, if the cancer has spread AS would be considered with HT as a systemic treatment with perhaps chemo etc., at some stage in need.

Edited by member 13 Feb 2015 at 23:57  | Reason: Not specified

Barry
User
Posted 14 Feb 2015 at 01:34

Great news - I do hope it goes well

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Feb 2015 at 10:32

Barry, mobile issues on here have delayed my congratulations on you achieving what you wanted. Hope all goes well in the future.

Ray

User
Posted 14 Feb 2015 at 11:00

Sounds very interesting Barry, hope it all goes well


Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 15 Feb 2015 at 14:49

Following this with interest as you know Barry.


So sending Best wishes for great results.


You have given much time & sensible advice here & I'd think it is time for Lady Good Fortune to smile upon you as a reward http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User
Posted 15 Feb 2015 at 15:38

Have you been away on holiday Rob?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Feb 2015 at 17:53
Great news Barry.

Roy
User
Posted 17 Feb 2015 at 22:19

Alas no holiday Lyn. Other priorities.


And a website here which freezes up after reading through a few threads.......

User
Posted 18 Feb 2015 at 01:12

Hi Barry,

I am just recovering from salvage HDR brachytherapy which I had last week.

It has taken over a year since it was first mooted, firstly my own Onco and Radiology consultants at Norwich wanted to run a full set of scans on me, to satisfy themselves that my PCa first diagnosed back in 2007 was still confined to the gland etc.

They then referred me to Prof Hoskins at Mount Vernon for the HDR, and of course he wanted to do his own set of scans to make sure everything was fine.

That identified cysts in my kidneys and thyroid gland, so I was referred back to Norwich to have these checked out.

Then it was back to Mount Vernon for a template biopsy before Christmas and the treatment last week.

I know in a sense it is frustrating to have these delays with repetitive scans, but I take satisfaction from the fact that they have given me a thorough structural survey, finding such trivia as benign cysts on my thyroid gland, so my vital components must all be in good order?

:)
Dave

User
Posted 18 Feb 2015 at 01:21
Hi Dave

I also have a cyst on my thyroid gland, must be common or we were separated at birth.

Roy
User
Posted 18 Feb 2015 at 07:28

I have just had a full set of scans and cameras in dark places - although the problem is not resolved, I am secretly overjoyed that my chest x-ray was clear and I can carry on smoking with impunity

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Feb 2015 at 08:26
Good to see you guys chatting on here again. Dave K sounds like you have had all sorts of tests discoveries and now Brachy too hope that settles down quickly for you I will post on your technical conversation when I can get to my more sophisticated gadget!
Lyn hmmmm bad Lyn that sounds a bit like me rejoicing when my 6 monthly rheumatology check not only tells me I am still in full clinical remission taking humira, but better still my liver and kidneys are fully functional so I can drink with that same sense of impunity! Hope you get answers to your own investigation very soon.
Meanwhile I am still wishing Barry all the very best for the upcoming trial.
Xx
Mo
User
Posted 18 Feb 2015 at 12:14

Hi Dave,
Your post prompted me to read through your bio. You certainly have been on a roller-coaster, at times giving rise to optimism only to be dashed and other complications found. So let's hope the Brachy salvage treatment works for you. I suppose you were able to have it because you did not already have the fullest normal dose of External Beam RT? Certainly Brachy was not offered to me, perhaps because my External Beam dose already exceeded the standard UK dose. It's good that salvage treatments are being tried, albeit in some cases but perhaps not yours, only in a trial, athough of course we have to accept the possibility of further side effects.

Barry
User
Posted 10 Mar 2015 at 22:42

Recently had a disappointment myself. Had to cancel scans booked for UCLH, a few days back, cancel railways tickets and London Hotel reservation. Also, was unable to drive Barbara to attend her sister's funeral. This was all down to my right leg. Long story short, what originally was just thought to be pseudogout in knee (in addition to normal gout in toe), the calf began to swell considerably and consultant though it was either an infection or DVT. Well after MRI and other tests, they inclined to the latter view and were concerned that a blood clot might travel to my chest/heart. A massive blood clot was removed from my calf and I have a scar of about 9 inches (though another scar at my time of life does not worry me). So I have been on blood thinners and IV antibiotics and antiinflammatories. Just returned home by ambulance from Hospital this evening.


So it looks like my London scans will be delayed for at least 4 weeks or more depending how quickly I progress and UCLH and give me new appointments. Hope this will not affect my chances of being on the study and that the delay will not allow my cancer to progress.

Edited by member 10 Mar 2015 at 22:43  | Reason: Not specified

Barry
User
Posted 10 Mar 2015 at 22:57

Originally Posted by: Online Community Member


I have just had a full set of scans and cameras in dark places - although the problem is not resolved, I am secretly overjoyed that my chest x-ray was clear and I can carry on smoking with impunity



 


NOOOOOOOO!  you know you should not you muppet carcinogenic fume inhaling muppet, you.  :-)


 


dave

User
Posted 10 Mar 2015 at 23:18
Barry
omg when stuff happens with you it really does a DVT ,surgery and still you sound so cheerful. If you are not accepted on that trial it will be a travesty.

I hope you are well on the way to a full recovery from this latest setback

xx
Mo
 
Forum Jump  
12>
©2025 Prostate Cancer UK