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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

User
Posted 11 Mar 2015 at 01:48

So sorry to hear this Barry and also sad for Barbara to have lost her sister who I presume was of no age to go? I do hope that you are due some luck now - keep on rolling, my friend x

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

User
Posted 11 Mar 2015 at 09:30

Barry

Sorry to read of the sad news for you both. As always it reads you’re not going to let go of your aims easily so good luck with that and well done on keeping positive.

Ray

User
Posted 11 Mar 2015 at 11:03

Hi Barry,

 

    May I ask what sort of response times you are getting from UCLH ?

The reason I ask is that I was (apparently!) referred to there by my consultant 3 weeks ago for a PET/MR  scan and have heard nothing. 

This is on top of a previous 4 week delay when my consultant (or his secretary) failed to send off a previous referral for a PET/CT scan to another hospital. 

  It seems that this time the referral was sent to a UCLH prostate consultant rather than directly to the PET/MR people but my efforts to inquire about this from UCLH by email and phone have been unsuccessful; although I got a good response from the PET/MR people, they were unable to help.

  I'm quite prepared for an actual appointment to take as long as it takes; it's that lack of any indication that anything is happening is troubling. 

 Obviously I need to take it up with my consultant but I don't want to seem to be over-reacting or lacking patience but I have a feeling that if I do nothing, nothing will happen. The fact that I am self-funding makes it even more annoying, I can be more tolerant of the NHS.

Hence me trying to establish whether such delays are commonplace or not.

Thanks,

Dave

Not "Why Me?" but "Why Not Me"?
User
Posted 11 Mar 2015 at 18:19

I wish to thank those who have sent their good wishes concerning recent developments which has resulted in my having to cancel appointments at UCLH and which prevented me driving Barbara to a very difficult crematorium to reach by public transport.

Dave:- My understanding of the reputation of UCLH for diagnosis and treatment is excellent - top equipment and some brilliant consultants. However, from my experience I believe their administration is pretty chaotic and this appears to have been the experience of others also. For example, I was given appointments for two scans that should be done on different days but these were for the same day, and at overlapping times! No overarching coordination. Sending out same details of these same scans two or more times also experienced by me and others and there are other examples I could give.

I don't know which way is best for you to get your appointment. After waiting a few weeks for an initial appointment after referral, I left a recorded message for the secretary of the Professor who was running the trial I was hoping to go on and much to my surprise on her/his return an appointment was made which I received through the mail within 2 days. (I mentioned this in another conversation - see my post on 28th December http://community.prostatecanceruk.org/posts/t10294-Towards-further-treatment#post123301
When I had my initial appointment, I was given forms to take to those who organised imaging and they told me they would be in touch. I think appointments for these scans were of the order of 3 weeks  for 2 of the scans and 7 weeks for the last MRI scan. Your route to the imaging apartment is likely different. There are other hospitals that do PET CT scans and you might get one done more quickly elsewhere unless your consultant is wanting you to have a special Choline one which is not widely available. UCLH only do two a week I was told. Also sometimes you refer to MR and in other places CT which I believe to be different scans and waiting times may differ between these.

 

Edited by member 11 Mar 2015 at 18:42  | Reason: Not specified

Barry
User
Posted 11 Mar 2015 at 20:36

Dave, on the basis that you are paying for this service, I would question whether you are getting value for money. It would be interesting to know whether you would actually have received a better service on the NHS and I have a deep suspicion of consultants happy to take your money but not too concerned with providing excellent after-care. Our consultants have both been worth the money but there have been horror stories on here from others.

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

User
Posted 11 Mar 2015 at 21:16

Hello Barry,

 Thanks for your helpful response.

Sorry about the confusion between PET/MR and PET/CT, I should have clarified it more.

The original referral was supposed to be for a PET/CT scan. However when I discovered after a month that nothing had been done about arranging this (as the consultant confirmed, although he didn't confirm it was a mistake) I then had time to search around and found that a PET/MR was probably more appropriate so I then requested that he refer me to UCLH for it.

Somewhat confusingly, my consultant said that he would let the UCLH man decide whether I should have a  PET/MR or a PET/CT which rather defeats the object of going to UCLH as I could have a PET/CT  a bit more locally .

 Why he didn't just refer me for the scan on this second attempt but referred me (seemingly unsuccessfully so far) to a consultant at UCLH I don't know. If anything, a post scan consultation would have seemed more logical. A pre-scan consultation will be an additional expense and a journey to London (with possibly an overnight stay)

 I'm going to chase it up tomorrow and we will see what happens.

 

Dave

 

Edited by member 11 Mar 2015 at 21:24  | Reason: Not specified

Not "Why Me?" but "Why Not Me"?
User
Posted 11 Mar 2015 at 22:19

Hello Lyn,

Thanks for your response.

I am normally an advocate of NHS, I went down the private route almost by accident, I've been a member of Benenden which fund an initial consultation plus a test or two.

However, once the decision for RP had been taken, I was quite happy to go down the NHS route so I asked the onco about the difference between private and NHS; as either would be carried out at the local NHS Hospital.

His reply was to the effect; "NHS you might have to wait 8 weeks for the operation, I can do it in about 3, secondly, if you go NHS, the operation may not be actually done by me but I may be overseeing a registrar".

Given that info, it wasn't a difficult choice to make, not many of us, I suspect, would knowingly or willingly submit to the operation being carried out by a trainee !

As you indicate, there are downsides in my experience of going private; the lack of documentation- I was amazed at all the detail that were on folk's profiles here, I was having to scour my memory or latterly, get him to repeat the various numbers in order for me to jot them down.

Secondly is the lack of back-up, no one to ring up, like the support team in NHS hospitals.

Thirdly, where Private and NHS have intersected in my treatment, for example with RT, I got the distinct impression that both parties were not singing from the same hymn sheet as one might reasonably expect.

Once I get the scan out of the way, I shall change to NHS- any further treatment is likely to be very expensive.

Not "Why Me?" but "Why Not Me"?
User
Posted 10 Jul 2015 at 00:00
I'm Laurence and just joined the forum. I was initially diagnosed with prostate cancer in 2009, PSA 21, Gleason 4+3, clinical stage T2. I chose radiotherapy as my wife was terminally ill with osepheagal cancer and I couldn't bear the thought of being in hospital. 2012 PSA started rising to 15+ and had further radiotherapy as cancer had spilled over into lymph nodes.

Just found out that PSA is rising again - from 2.1 last June to 2.6 now - and am now discussing possible salvage surgery with good folk at Marsden. I've recently started a new relationship and have been told that surgery, which is only option, is only successful in 30% of cases but will definitely mean no more erections and high risk of urinary incontinence plus possible risk of damage to rectum during surgery.

I am 63 and this is not the kind of retirement that my new partner and I were thinking of ! Options appear to be to have surgery and suffer decreased quality of life with two thirds likelihood of being where I am but worse (I couldn't bear to put anyone in the carers situation that I was in) : or thinking Sod to, I'll try HT and hope I'm lucky to continue as I am for a bit longer.

Any body got any experience of long term HT, using incontinence bags/ pads long term, using penis injections or pellets ( I've been told that after surgery Viagra and such would not work for me ) ?

User
Posted 10 Jul 2015 at 01:17

Yes, the side effects of surgery are much more likely if you have had radiotherapy first and the chance of removing the whole gland is very small which is probably why they are not offering you nerve sparing.

There are many posts on here about incontinence and impotence, pads and injections which you will mostly find in the 'Living with cancer' or 'Treatment - side effects' sections. However, you will get many more replies if you start your own thread - just copy & paste what you have written here into a new conversation.

Edited by member 10 Jul 2015 at 01:18  | Reason: Not specified

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

User
Posted 10 Jul 2015 at 01:42

Hi Laurence,

Welcome to the forum, though sorry for the reason that brings you here.

You and I are in a similar position except I have only one suspicious node and it appears you have several both of us having failed RT. The Marsden found a new tumour in my Prostate and agreed to refer me to UCLH for possible HIFU (High Intensity Focused Ultrasound). This they have agreed to do but they also found a suspicious node which they propose to treat with HT. I did ask about removing this node surgically but was told this would almost be comparable to removing the prostate and I was asked if I was prepared for an 80% risk of incontinence. RT fries the Prostate making what is already an intricate surgical procedure considerably more difficult, so much so that many surgeons will not do it. The chance of saving nerve bundles is virtually nil so no natural erections can be expected. No doubt other forum members will let you know how they coped with incontinence etc, etc.post surgery, although there may not be more than the one member we know of who had surgery after RT as a salvage treatment. Of course mens' priorities differ as does how they consider the risks and potential downsides v possible gains.

It is not clear whether you had HT previously and if so for how long but there are a number of possible side effects which vary from one man to another. These may include lack of energy and premature tiredness, joint aches, weight gain, sore and enlarged nipples and breasts and lack of libido. Men are given HT for a fixed time, sometimes intermittently or for as long as deemed necessary which could be until it no longer works.

I have decided to have HIFU to treat my Postate and only HT if I can't have the node treated another way. Actually, I am looking into the possibility of having Nanoknife to treat the Node but might have to go abroad for this if it is an option. (Nanoknife electrically charges the cancer through electrodes).)

Barry
User
Posted 10 Jul 2015 at 10:16
Thanks for the quick response. It's all a bit weird. So far I've been very lucky. Two lots of radiotherapy with HT before and a bit after with hardly any side effects, no symptoms from the disease and then meeting a new partner and having a great sex life after thinking that had ended when my wife died in2009. The worst part of the whole business is visiting the Marsden which I still find incredibly distressing as it constantly brings back awful memories of going there with my wife.

As it's been so straightforward for me so far,I find the idea of choosing something which will definitely alter my life so difficult to think about.

Anyway will now look round all the other posts on the forum as you advise. Spoke to my contact nurse today. I'm scheduled for MRI and biopsy under full anaesthetic before meeting consultant again 11August. She says despite PSA results and CT scan results, it's still possible that next tests may show cancer is already outside prostate and prostate surgery is irrelevant. you live and learn !

User
Posted 10 Jul 2015 at 11:36

Hello Laurence and welcome from me too.

Can't help with your problems as have no experience but I do know you will get help and support from the members on here.

It must be very hard for you to a) having lost your wife to cancer in 2009 for you to have to attend the same hospital,

and b) to be far enough forward post loss of your wife to feel comfortable enough to start a new relationship, and then get Prostate Cancer with life changing treatment options. I feel for you

There are lots of wives and partners on here supporting our men and I hope that your new love will be there for you too

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 19 Jul 2015 at 17:53
Does HIFU have abetter chance of doing less damage ie better than 80% risk of incontinence ?
User
Posted 20 Jul 2015 at 00:56

Laurence,

As intimated in my post of 10th July, I was told by UCLH that after RT the risk of incontinence by having subsequent surgery was 80%. No figure was given for incontinence following HIFU as a salvage treatment after RT but the way it was put to me suggested it would be a much lower risk. However, with HIFU there is is a very small risk of a Fistula and some men have reported that urine becomes temporarily blocked by debris and this sometimes requires medical intervention. HIFU can be repeated if necessary. It's too soon for long term side effects to have been assessed. Not all facilities offer HIFU if cancer has escaped the Prostate and been found elsewhere.

Barry
 
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