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Towards further treatment

User
Posted 05 Nov 2014 at 20:33

As detailed in my profile, following diagnosis in 2007, I had RT in 2008 but since 2010 my PSA has increased gradually at each PSA test.  My consultant at the Marsden felt that with the lowish PSA figures it was possible that some cancer was still within the prostate and authorised an endorectal coil MRI scan, the result of which was given to me over the telephone in a conversation by one of his assistants today.  It would seem that another tumour of 8mm  is growing in the left base of my Prostate.  This was not shown on the MRI scan in 2007 and  is post RT.  It is believed that this may well account for my slowly rising PSA. Incidentally, I was told that following my HT/RT that my prostate is now smaller than it was when scanned in 2007.

I asked what my options were other than Prostatectomy (as at 78 I would prefer another option).  As I rather anticipated, I was told that I could be monitored for a time and then as PSA rose further be put back on HT, possibly intermittently. However, the possibility of HIFU was raised and as a proactive treatment believer, I said I wished to be considered for this and it was agreed I would be referred to the UK Professor whose name we know as the acknowledged expert but cannot say, to see if I am suitable.  I did ask about further RT of one sort or another and was told this was not a possibility (even for cyberknife, which I was told was generally given for cancer out of the capsule which I found surprising).  So it's a wait and see situation as I am aware there is a long wait unless one goes private.  My view is if this tumour may be  the problem, let's try to nail it and hopefully avoid or defer HT.

For anybody who may at some time have an endorectal coil MRI scan which helps provide a better picture, the procedure was no food for 4 hours prior to the scan which takes about 40 mins.  An injection was given in my arm to help relax muscles and having put some lubricant jelly in the rectum , this was followed by the probe which has a balloon attached to it which is inflated.  I was told that this would feel like I needed to pass a stool and  this was very much the case but I managed to avoid squeezing, fortunately. I found it not really painful if rather undignified!  At some point I believe contrast was injected into my arm. The scan was done on the more powerful 3 Tesla scanner for enhanced imaging.

 

Barry
User
Posted 09 Nov 2014 at 20:23

Thank you for post Lyn and your hope like me that I will get the chance of HIFU. I must say that when I had RT, I was prepared for it not working as with a T3A staging there was quite a possibility that the cancer had spread beyond the reach of the RT. But naively, I was not thinking that while there is still a prostate, even a radiated one, new tumours could grow in it even if the original ones had been successfully dealt with by RT. It seems to me that best chance of cure is RP+RT perhaps with HT too,despite more severe side effects, though this may not be the same for everyone. Then there are cases where either treatment may do the job. It's not surprising that for many men it's an agonising decision.

Glad John's PSA remains pretty stable.

Barry
User
Posted 28 Dec 2014 at 00:32

Just an update. I thought I would enquire of Professor 'E's' secretary when I might receive an answer to the Marsden's referral letter of 3rd December. The secretary was not there when I phoned about 10.15 am on 22nd December so I left a message. On 24th December I received a letter of appointment which showed it was produced at 10.52am on 22nd December just after I phoned! Big co-incidence? More likely extracted from numerous outstanding referrals following my prompting! There was not much in the appointment letter other the timing 2.30pm on 4th Feb and location but I am assuming that because I have been given an appointment, I have not from histology and recent scan been ruled out for HIFU. Will have to wait and see.

Edited by member 28 Dec 2014 at 00:35  | Reason: Not specified

Barry
User
Posted 09 Jan 2015 at 10:54

Hi again Barry (and t'other Barry !) ,

Have been lying low for a while, not least because I'd been having so many repeated problems trying to access the new system that I mainly gave up ! Appears to have been largely sorted now.... or still occasional issues ?

Sorry to hear that what had always sounded like your long term stability following initial treatment has now been disturbed, and you are once again facing potentially uncomfortable decisions. If complete eradication is the understandable goal, you do at least seem to have some good treatment options. Presume that HIFU is no longer unreasonably withheld - when I enquired some while back , referrals not even contemplated for 'complex' cases.

Look forward to seeing the ongoing story unfold, with all hopes of demonstrable success during 2015,

All very best for now / David

ps - Same to you too Barry L ..... and Happy New Year to Lyn also ...

'It couldn't possibly happen to me....'
User
Posted 29 Mar 2015 at 17:13

Hello Barry,

 

How did your scan(s) at UCLH go?

I am booked for a Choline scan next month there. All seems fairly straightforward and similar to a MRI scan that I have had previously but any tips/info would be welcome.

 

Best wishes,

Dave

Not "Why Me?" but "Why Not Me"?
User
Posted 30 Mar 2015 at 01:00

Hi Dave,

Good that you now have your Choline scan booked. I was due to have mine and a Bone scan on on 5th and 6th of March but had to postpone these as I had an unplanned but urgent operation on my leg at the time done in Devon. These scans have now been rearranged for 31st March and 1st April so I can stay overnight in a London hotel, thereby saving an additional journey between Devon and London. I will report back on or shortly after 2nd April. However, I was able to keep my original appointment for the MRI with normal contrast on 27th March, so overall the 3 scans should now be completed only a few days after what would originally have been the case.

Barry
User
Posted 02 Apr 2015 at 00:32

Hi Dave,

I did get my Choline PET scan at UCLH - eventually!

I reported for this Choline Scan early and in case there was any problem and suggest you do the same. Due to yet another administrative error, I was sent the wrong form to complete for this scan. They sent me two forms for a standard MRI scan rather than one for the much more detailed PET one they produced on my arrival for me to complete. But a more significant problem arose when it was found that the radioactive Choline which is produced off site by others was not to the required standard. A mother, (for her young daughter) and I were both told we could come another day or they would get a further batch made, though it would delay the scans considerably. We both opted for the latter which meant my appointment which was originally for 2pm didn't end until after 6pm. Just as well I had booked into a London hotel for the night as I was due to have a Bone Scan the next day. Apparently this is not the first time this problem has arisen so be aware of this possibility when making your travel arrangements.

I told the radiographer that I had read that Choline could be used with CT or MRI scanners but he said that for Prostate they considered the Magnetic one, which they refer to as MR to be better and this is what I had. He said the scanner is a special 3 Tesla machine by Siemens and cost about seven million pounds. It is presently the only one in the UK scanning patients although Guy's Hospital in London now have one in preparation. From a patient's point of view there are several differences between this an the usual MRI scanner. The patient is required to place his shoulders hard against a strong indentation in the platform and the head goes into the scanner first. Ear plugs are inserted and sound absorbers over these. But there is no music because the patient needs to hear and respond to breathing instructions. A number of times at specific points during the scan the patient is told to breath in deeply and exhale immediately and to not breath in again until told - only just managed to do this! Having had 11 or 12 MRI scans, of which several were on 3 Tesla machines, the most recent being on 27th March, I can say that this PET was much louder than anything I have experienced previously. There was one sequence where the platform was vibrating so much that it was as if a pneumatic drill was being used on it's underside and some of higher frequencies were quite uncomfortable. (Please let me know how you find this?) Incidentally, contrast was not added in my case though some have this.

You will have received maps and details of the Macmillan wing where the scanner is located. You can reach this by going through the main part of the hospital but there is a lot of dust from demolition work this way and I recommend you go round the outside of the main building using the map provided. (Mind the roads they are like race tracks but with vehicles and not least cyclists coming from all directions.)

You can't lock and remove the keys for lockers for your clothes although very few people are in this area so it's a good idea to leave your values with a companion in the general waiting area.

If you have time, the medically related cartoons in the main building which are reprints from over many years, are well worth a look. These are in a corridor that stretches along most of the front of the building where there is a refreshment s kiosk and cafe at the end.

Good luck with your scan!

Edited by member 02 Apr 2015 at 00:43  | Reason: Not specified

Barry
Show Most Thanked Posts
User
Posted 08 Nov 2014 at 21:52

How difficult it can be to know what is the best way forward to treat this disease! On diagnosis, I was told by the surgeon leading the MDT that he doubted he could remove all the cancer and suggested I have RT instead which I went along with. Now with new cancer growing in the prostate post RT, I could possibly have surgery if I found a surgeon prepared to do this but am disinclined to do so because the operation would be more difficult now and the risk of side effects much increased. Also, I am more frail now than 7 years ago but with the benefit of hindsight I wonder did I do the right thing?

I know it's difficult to compare situations but a friend of mine had the same PSA, Gleason and staging as me on diagnosis. He was given the same advice by the same surgeon as it happened but a year or so before my diagnosis. He opted for a radical prostatectomy but it did not remove all his cancer and he subsequently had HT followed by RT. He was severely affected by all this treatment and side effects for a considerable time, so much so that he said he wished he had not had the surgery and had just gone for RT in the first place. However, his PSA still remains virtually undetectable so perhaps he chose the better route?

So now it's that anxious wait all over again until I know whether I am suitable for HIFU.

Edited by member 08 Nov 2014 at 21:55  | Reason: Not specified

Barry
User
Posted 09 Nov 2014 at 00:25

Barry, you opted one way and now naturally wonder whether things could have turned out differently. John opted the other way and it is well known on here that he has mostly regretted having the op with all its attendant life changes. I think he would have regretted it even without the recurrence and subsequent HT/RT. Statistically, we know that outcomes are less great for anyone needing salvage treatments whichever way round the treatments were deployed.

I hope that you do get the chance of HIFU.

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

User
Posted 09 Nov 2014 at 20:23

Thank you for post Lyn and your hope like me that I will get the chance of HIFU. I must say that when I had RT, I was prepared for it not working as with a T3A staging there was quite a possibility that the cancer had spread beyond the reach of the RT. But naively, I was not thinking that while there is still a prostate, even a radiated one, new tumours could grow in it even if the original ones had been successfully dealt with by RT. It seems to me that best chance of cure is RP+RT perhaps with HT too,despite more severe side effects, though this may not be the same for everyone. Then there are cases where either treatment may do the job. It's not surprising that for many men it's an agonising decision.

Glad John's PSA remains pretty stable.

Barry
User
Posted 07 Dec 2014 at 19:14

Hi Barry,

Just seen this thread, I hope things improve for you.

 

Barry

User
Posted 08 Dec 2014 at 01:35

Hi Barry,

Thank you for your good wishes. I am disappointed by the admin at the Marsden. When I had my telephone consultation with a doctor at the Marsden on 5th November, the doctor said she would write a referral to Professor 'E' that same day. In fact this letter was only sent and copied to me on 3rd December! But worse still, some of the information detailed in this letter was incorrect! It said I had had a biochemical recurrence in 2008. Not the case at all. Then the Marsden letter stated "After the carbon ion therapy it (PSA) fell to 1.5 in January 2008. Nonsense, I didn't have the Particle IMRT until April/May/June of 2008 so the fall to 1.5 in January 2008 was solely attributable to HT (Zoladex). There were other minor inaccuracies. This is very annoying as the Marsden have been given accurate and detailed information about my histology.

In the circumstances, I have written directly to Professor 'E' correcting the wrong background information furnished by the Marsden and taking the opportunity to ask a few questions. I have copied this letter to the Marsden and hope they sort out my histology.
Incidentally, I wrote to the Marsden on 20th November asking about the promised referral letter but never received a reply.

It goes to show that the patient needs to check what is said is correct and is acted on in a timely way.

 

 

 

 

 

 

 

 

 

 

Edited by member 08 Dec 2014 at 01:36  | Reason: Not specified

Barry
User
Posted 08 Dec 2014 at 08:59

Hi Barry. Sorry you're having more problems.
As far as incorrect info is concerned we had similar when my John was referred for his Brachytherapy. The consultant we saw for that then types a letter to our GP which gave his PSA incorrectly.
We didn't feel in our case it was important enough to query since he had already agreed the procedure, but it did make us wonder how much incorrect info gets passed on.
Were I you regarding the referral letter I would be on to the consultant's secretary asking when it was done and where it is now. Sometimes these things get overlooked.
I'm sure that you have already tried that but just a though if you haven'.
All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 28 Dec 2014 at 00:32

Just an update. I thought I would enquire of Professor 'E's' secretary when I might receive an answer to the Marsden's referral letter of 3rd December. The secretary was not there when I phoned about 10.15 am on 22nd December so I left a message. On 24th December I received a letter of appointment which showed it was produced at 10.52am on 22nd December just after I phoned! Big co-incidence? More likely extracted from numerous outstanding referrals following my prompting! There was not much in the appointment letter other the timing 2.30pm on 4th Feb and location but I am assuming that because I have been given an appointment, I have not from histology and recent scan been ruled out for HIFU. Will have to wait and see.

Edited by member 28 Dec 2014 at 00:35  | Reason: Not specified

Barry
User
Posted 28 Dec 2014 at 09:09

Seems like your call prompted someone all the best for February Andy

User
Posted 28 Dec 2014 at 09:44
Its unfortunate that you had to chase them like you have Barry..here's hoping they can provide the HIFU and get it sorted

Bri

Edited by member 28 Dec 2014 at 09:48  | Reason: Not specified

User
Posted 09 Jan 2015 at 10:54

Hi again Barry (and t'other Barry !) ,

Have been lying low for a while, not least because I'd been having so many repeated problems trying to access the new system that I mainly gave up ! Appears to have been largely sorted now.... or still occasional issues ?

Sorry to hear that what had always sounded like your long term stability following initial treatment has now been disturbed, and you are once again facing potentially uncomfortable decisions. If complete eradication is the understandable goal, you do at least seem to have some good treatment options. Presume that HIFU is no longer unreasonably withheld - when I enquired some while back , referrals not even contemplated for 'complex' cases.

Look forward to seeing the ongoing story unfold, with all hopes of demonstrable success during 2015,

All very best for now / David

ps - Same to you too Barry L ..... and Happy New Year to Lyn also ...

'It couldn't possibly happen to me....'
User
Posted 09 Jan 2015 at 21:52

Hi David,

Thank you for your good wishes for my possible treatment with HIFU. I also wish you A Very Happy New Year. It's good to see you have found you way round the forum - I too found the transition difficult but they seem to have got almost all the bugs sorted now. After signing in I just go to 'Recent Conversations' and go to any topics where I feel I might contribute in a small way or at least empathise. This seems to work for me.

You don't mention your own situation which I assume remains much the same. Keep in touch.

Barry
User
Posted 29 Mar 2015 at 17:13

Hello Barry,

 

How did your scan(s) at UCLH go?

I am booked for a Choline scan next month there. All seems fairly straightforward and similar to a MRI scan that I have had previously but any tips/info would be welcome.

 

Best wishes,

Dave

Not "Why Me?" but "Why Not Me"?
User
Posted 30 Mar 2015 at 01:00

Hi Dave,

Good that you now have your Choline scan booked. I was due to have mine and a Bone scan on on 5th and 6th of March but had to postpone these as I had an unplanned but urgent operation on my leg at the time done in Devon. These scans have now been rearranged for 31st March and 1st April so I can stay overnight in a London hotel, thereby saving an additional journey between Devon and London. I will report back on or shortly after 2nd April. However, I was able to keep my original appointment for the MRI with normal contrast on 27th March, so overall the 3 scans should now be completed only a few days after what would originally have been the case.

Barry
User
Posted 02 Apr 2015 at 00:32

Hi Dave,

I did get my Choline PET scan at UCLH - eventually!

I reported for this Choline Scan early and in case there was any problem and suggest you do the same. Due to yet another administrative error, I was sent the wrong form to complete for this scan. They sent me two forms for a standard MRI scan rather than one for the much more detailed PET one they produced on my arrival for me to complete. But a more significant problem arose when it was found that the radioactive Choline which is produced off site by others was not to the required standard. A mother, (for her young daughter) and I were both told we could come another day or they would get a further batch made, though it would delay the scans considerably. We both opted for the latter which meant my appointment which was originally for 2pm didn't end until after 6pm. Just as well I had booked into a London hotel for the night as I was due to have a Bone Scan the next day. Apparently this is not the first time this problem has arisen so be aware of this possibility when making your travel arrangements.

I told the radiographer that I had read that Choline could be used with CT or MRI scanners but he said that for Prostate they considered the Magnetic one, which they refer to as MR to be better and this is what I had. He said the scanner is a special 3 Tesla machine by Siemens and cost about seven million pounds. It is presently the only one in the UK scanning patients although Guy's Hospital in London now have one in preparation. From a patient's point of view there are several differences between this an the usual MRI scanner. The patient is required to place his shoulders hard against a strong indentation in the platform and the head goes into the scanner first. Ear plugs are inserted and sound absorbers over these. But there is no music because the patient needs to hear and respond to breathing instructions. A number of times at specific points during the scan the patient is told to breath in deeply and exhale immediately and to not breath in again until told - only just managed to do this! Having had 11 or 12 MRI scans, of which several were on 3 Tesla machines, the most recent being on 27th March, I can say that this PET was much louder than anything I have experienced previously. There was one sequence where the platform was vibrating so much that it was as if a pneumatic drill was being used on it's underside and some of higher frequencies were quite uncomfortable. (Please let me know how you find this?) Incidentally, contrast was not added in my case though some have this.

You will have received maps and details of the Macmillan wing where the scanner is located. You can reach this by going through the main part of the hospital but there is a lot of dust from demolition work this way and I recommend you go round the outside of the main building using the map provided. (Mind the roads they are like race tracks but with vehicles and not least cyclists coming from all directions.)

You can't lock and remove the keys for lockers for your clothes although very few people are in this area so it's a good idea to leave your values with a companion in the general waiting area.

If you have time, the medically related cartoons in the main building which are reprints from over many years, are well worth a look. These are in a corridor that stretches along most of the front of the building where there is a refreshment s kiosk and cafe at the end.

Good luck with your scan!

Edited by member 02 Apr 2015 at 00:43  | Reason: Not specified

Barry
User
Posted 02 Apr 2015 at 02:07

Good Lord! Have you ever been a tour operator? Have they said when you are likely to get the results?

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

User
Posted 02 Apr 2015 at 11:12

Tour operator? No Lyn, lol but Dave did ask for hints/tips so I did my best!

Radiotherapists will not give an opinion on scans or give an indication when Consultant may respond. They would only say that the scans would be referred to the Consultant requesting them. If I have heard nothing in a couple of weeks I will send an email enquiry and will post an update when more is known.

Barry
User
Posted 03 Apr 2015 at 17:00

Hi, Barry,

Many thanks for that- I did give a thumbs up/thanks but that seems not to have taken- as I had a quick look at what you had written, before we set off for London early yesterday morning. I did find your info pretty useful and appreciate your taking the trouble.
Have just arrived back home - We too stayed overnight as I felt that the Thursday evening before Easter wasn't the time I wanted to join the 'Great Easter Getaway' especially in the light of the possibility that the appointment, like yours, was likely to be open ended.

Actually it still is 'open-ended' as it was cancelled!! Apparently the firm producing the choline. I thought it was actually Royal Marsden in Surrey, but according to the radiographer, there are two suppliers and one is (a bit) more reliable that the other. This coming Tuesday there is no supply either so more disappointment for some folk.

I now have another appointment towards the end of this month.

We stayed at the Holiday Inn Regents Park and were happy with that although it's an expense that I wouldn't want to fork out too often. It's only about ten/fifteen minutes walk from the MacMillan Centre on the other side of Tottenham Court Road.
It's only two minutes from the tube (Great Portland Street and slightly further from Warren Street) We actually used the number 205 bus instead of the tube. The 205 seems to serve a lot of the rail terminii from Paddington through Marylebone, Euston, St Pancras, Kings Cross and Liverpool Street and f course also stops outside UCLH. The seniors bus pass was useful!!

It's only five mins from Regents Park and we this morning we had a delightful walk in Regents Park nostalgic too as it was a favourite spot for my wife and me about thirty years ago. By the time I finally get to have my scan, the stunning rose gardens should be in full bloom!

UCLH was as you described, we saw the corridor of medical cartoons as we had lunch in the main hospital building restaurant/cafe. We also went up to the roof garden at the top of the Macmillan Centre, a tranquil oasis but little used.

I'm pleased to see the old UCLH building was still standing and looks like it's going to be preserved. I must have passed it many times when driving around that area as it was on a traffic circuit and it always seemed a non-descript Victorian building but I was able to get a good view this time and it really is an attractive building which seemed to me to have a gothic look. It's unfortunate that so often you only get to see how attractive some of the buildings are in London (and I'm sure elsewhere), are, is when the building next door is knocked down.

To their credit, they did try to contact us by phone but we have to leave early so missed the call. They did mention that they didn't have a mobile number for me but it would have been pointless, we were already in London before they were aware of a problem.

So we will see what happens next time. Once again, thanks for the info.

Not "Why Me?" but "Why Not Me"?
User
Posted 09 May 2015 at 21:25

Well things progress albeit very slowly and that is with prompts to UCLH from me. I thought after having 3 scans the next step would be biopsy but no, I was to have yet another scan. This time it was a full body MRI which I had on 5th May so over another month between this and previous scan. Apparently one of the things they hope to ascertain in the FORECAST study is whether this full body MRI scan can satisfactorily replace the bone, pelvic area MRI and the Pet Choline CT/MR scan. Another thing they are wanting to establish is whether in those men with spread outside the prostate, it would prove advantageous to still treat any cancer cells still in the prostate with HIFU or Cryotherapy plus HT to treat systemically. If there are no signs of spread HT will be not be given. It is a condition of the study that men must not have had HT in the last 6 months.

I am due to have a Perennial template biopsy on 15th May and have been told it will be about 2-3 weeks before everything is considered and I am informed. From what I have gleaned so far, it seems the only problem might be that the cancer in the Prostate may be too difficult to reach using HIFU or Cryotherapy. I will just have to wait and see.

It makes me realise how lucky I was with my treatment in Germany where everything was so efficiently and expeditiously organised by the 2 study nurses. No risk there of getting overlapping appointments for scans and long delays because they arranged everything for me, appointments, scans and transport (even finding me accommodation). Late in the day now but I rather wish I had gone to Germany for investigation and treatment. I would have it or been told I was unsuitable months ago!

Barry
User
Posted 09 May 2015 at 22:41

Barry

Just think how long it would have been without the prompts. The uncertainty that comes along with these continuing scans and awaiting diagnosis/treatment must be unbearable. I hope you can manage the situation without getting too stressed, and the feedback is positive - when you finally get it!

Paul

Stay Calm And Carry On.
User
Posted 10 May 2015 at 09:44

Hi Barry,

  Sorry to hear that your are having on=going problems with UCLH.

My second attempt succeeded, it was a relief to see the courier turn up with the (choline?) solution.

To answer your question in a previous post, I didn't notice the vibrations on the PET/MR although the variety of electronic noises was noticeable, some were like aircraft cockpit warning noises and others like the warning sounds issued when HGVs and dust-carts are backing up. 

  I couldn't quite understand the logic of breathing out and then holding the breath but no doubt there is a reason for it. Like you, I found the length of time holding my breath was a bit long but it got easier- I wonder if that was because I realised after the first one that eventually I would get told to breath again http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif.

I was surprised to have to wear a visor, whether that was to keep my head steady I don't know, I was unwilling to put it to a test. There was also some rectangular padded apron over my body- I've no idea what the purpose of that was.

My mistake was believing them when they said the results would be with my consultant in about 48 hours. Ten days after the scan, I turned up for a consultation - but of course no results !!  To be fair to UCLH, I don't know whether the problem lay with them or elsewhere.

I got on to UCLH who agreed to fax the results through to the consultant's secretary. By then of course it was too late. My suggestion that the consultant contact me about the results seems to have fallen on deaf ears.

I'm about to go on holiday so that'll  be another month before I get another consultation to hear the results. Who could have thought in mid January when the PET scan was (supposedly) ordered, that I would I would have to be concerned about being away in late-May, early June !

  Good luck with the template biopsy. 

Dave

Not "Why Me?" but "Why Not Me"?
User
Posted 10 May 2015 at 18:37
Barry

sorry you are having to chase everything down at UCHL just iaginne how hard this must be for those that do not have that same tenacity?!

The thought process of treating the primary source albeit not with surgery has always been something I wondered about so hearing your first hand experiences is really helpful for me to understand more about this disease and the myriad of options, treatments and ongoing developents. I am sure other men in a similar position to you, or those who may well be in years to come, will also be very interested in your updates.

Thankyou so much for taking the time to share your experiences with us.

Best wishes

xx

Mo

User
Posted 21 May 2015 at 23:52

Hi Dave,

Glad you got your scan at last and note you have also had long delays at UCLH. A belated thank you to Paul and Mo for your replies. Hopefully, you and a few others may be interested in my recent progress as follows:-
Things progress in fits and starts! On 15th May I had my template transperineal biopsy at UCLH. This was my experience but it does not follow that it will be the same for others. I made no prior preparation other than take some capsules to help soften stools and this worked well. These capsules were 'dioctyl 100 mg', with 2 taken in the morning and 2 in the evening, as was prescribed by my local hospital when I had an operation on my leg and I subsequently got my GP to prescribe them. Nothing of the kind was offered by UCLH and there was no enema.

Prior to the procedure, I struggled to put on some very tight stockings they provided. I don't know whether this is standard practice or was done because of the recent operation I had to remove pooled blood from my calf. Soon the Anaesthetist arrived immediately followed by the surgeon. The latter asked me if I knew what operation I was about to have and I was tempted to say “Don't you know either?” This was because my notification from the hospital just stated that I was to attend for my operation – no mention of what it was but I assumed it must be biopsy rather than HIFU. Anyway, I thought it best not to prevaricate as the guy was shortly to stick many needles into me, so gave the answer he was looking for. I asked about where in the prostate the main thrust (no pun intended) would be and a plan was produced which showed this. I asked if the site was too difficult to treat with HIFU whether Nanoknife would be a possibility. He said the trial they were conducting for Nanoknife was now closed and Nanoknife was not available in the UK. (This answers a question a forum member asked sometime ago). However, he thought they would be able to treat with HIFU which should do the job just as well and was better documented. He said I would not have a catheter.

When I came round I felt OK with no pain or sick feeling. I was told that after I had passed urine I could leave. Passing water caused a strong stinging sensation in the penis like getting soap in your eyes and this has persisted to a lessening extent for several days with every voiding but there has been no blood in the urine. Lying down or standing has been painless, though sitting down not so. I found it best to lower myself on to one cheek and then roll back and sideways with feet well forward in a slouch position. Before leaving, I looked back on the trolley and saw that blood and body fluid had not been entirely absorbed by my dressing and the absorbent material above the under sheet which was badly stained. This was of concern as I was to sleep in a hotel bed that night. I therefore asked for and was given two new sheets of absorbent material and a pair of the elasticated plastic pants of the type I put on before the biopsy. This was effective.

I was given a course of antibiotics and allowed to leave. However, there was concern about my having a long journey home and having to drive part of the way on the same day as having had anaesthetic. So by prior arrangement I was given a room overnight in the nearby 35 bedroom hotel which is part of UCLH. This is called the 'Cotton Rooms'. The modern, spacious and comfortable rooms are singles and doubles, so carers can also be in attendance as necessary. They are generally used by patients who are having ongoing treatment. There are cooking facilities with beverages permanently available in the dining room where full or continental breakfast is provided. There is a lounge and even a laundry room. The hotel is manned 24 hours a day and all of this is free! See video on this link:- https://www.uclh.nhs.uk/PANDV/PATIENTACCOMMODATION/Pages/TheCottonRooms.aspx

For anyone interested, this shows transperineal biopsy with comments on this and on imaging by leading clinicians :- http://www.nuadamedical.co.uk/prostatecancer/film-precision-prostate-diagnostics.htm

Yesterday, 20th May, I received a letter giving my post biopsy consultation appointment for 17th June at UCLH. I emailed Proffesor 'E's' secretary asking if this could be brought forward and conducted over the telephone as the biopsy and scans had all been done and I anticipated it would just be a matter of discussing the way forward and signing further consents that could be sent by surface mail. I took the opportunity to point out that on one UCLH web page they gave a 'Pledge' to treat within 18 weeks of receiving a referral to accord with the NHS Constitution. This meant I should have been treated by mid April. The excuse was that they were very busy and could not always meet this time-scale, (reminded me of David Cameron). Today I received an email reply agreeing to bring the consultation forward to 3rd June and over the phone which will save yet another visit to London. Result in this ongoing process!

Edited by member 22 May 2015 at 00:37  | Reason: Not specified

Barry
User
Posted 22 May 2015 at 05:30
Barry

At least now things are actually happening. An interesting account of your experience at UCLH .

2nd June I will be watching out for your post on the phone consult you have .

Best wishes

Xx

Mo

User
Posted 23 May 2015 at 14:48

Thanks Mo but progress is a struggle. I received a letter from UCLH 'Outpatients Team' this morning confirming the revised appointment date/time but they ask me to attend in person rather than being done over the telephone contrary to what Professor 'E's' secretary said in her Email. I will have to check back with them on Tuesday (Monday being a Bank Holiday). It really is like dealing with a call centre! Great hospital, cutting edge equipment and top clinicians but poor administration.

Barry
User
Posted 23 Jun 2015 at 01:55

Due to my previous experience of UCLH I was not expecting the diagnosis I was told would be given in a telephone appointment on 3rd June to be provided and so it turned out. I did receive a telephone call at the agreed time from a Clinical Nurse whose first words were "You've had a biopsy haven't you". It was obvious he knew little if anything about my case and was certainly not in a position to provide the diagnosis and consultation I was waiting for. I said that it was just as well I had not travelled all the way to London as originally asked to learn nothing! There followed a long silence and he said he would try to find out more and get would get back to me.

I few days later he did ring me back saying the MDT would be discussing my case on15th June but gave me a preliminary report on what had been found. This was essentially that there was a small area of 3+4 cancer in the left side of the Prostate and a suspicious Node to the right of the Prostate. He subsequently said in another call that the MDT had confirmed this was the case and had agreed to my being treated with HIFU with or without HT as I wished within the FORECAST trial. I asked that the operation take place asap and said I wanted to see how this would affect my PSA before considering HT. When I was first diagnosed in 2007 I had a suspicious Node but the MDT then thought that it might be just a fatty deposit. As my PSA some two years post RT/HT was 0.06 it seems unlikely that the node was producing PSA so I don't want to start HT now unless HIFU to the Prostate proves ineffective in reducing PSA to an acceptable level.

I have asked that UCLH put the full diagnosis in writing to my GP and copy it to me as there is a dearth of written feedback and so far I have been advising my GP verbally of what has been happening.

So all the hurdles have been cleared and it's now a question of waiting for the Op.

Edited by member 27 Jun 2015 at 01:03  | Reason: Not specified

Barry
User
Posted 23 Jun 2015 at 06:58

Glad you finally got a result (of sorts) Barry. (Did your clinical nurse speak English, that's another frustration when you finally get to speak to somebody but can't understand - or make yourself understood!)

These waiting around times can be so frustrating.

Our grandson has been under UCLH for the past five years for his cancer and brilliant though the results have been (for treatment which had to be trial and error since it was rare in children) it is so frustrating sometimes that expected results haven't materialised by appointment time or the consultant forgot to ask for a particular test, especially when the journey there takes over 2 hours by train

I wish you well with your HIFU
All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 27 Jun 2015 at 01:01

I bit of not so welcome news. I have been told subsequently that I have a suspicious node (as well as the cancer shown by MRI and Biopsy to be in in my prostate) and UCLH want to start me on HT for this. I was told this would be for a minimum of six months. HIFU to the Prostate will nevertheless go ahead but could be somewhat delayed.

My slowly rising PSA was only 1.9 when measured recently. Before I pushed for an MRI scan at the Marsden and a new tumour was seen, I was told HT would not be given until the PSA reached 10. This could have been quite awhile with a doubling time of about a year, giving the cancer more time to develop. But at least treatment is now to commence. There must be other men in a similar position to me whose cancer is developing but they are not being given an MRI, Biopsy or treatment because their PSA has not yet reached 10 which seems to be the figure some Oncologists are going by.

 

Edited by member 27 Jun 2015 at 01:04  | Reason: Not specified

Barry
User
Posted 03 Jul 2015 at 03:38

Had verbal confirmation yesterday that my HIFU salvage operation to treat cancer in my Prostate has been scheduled for 28th July. I am also due to go back on HT (after 7 years) to try to shrink a very suspicious node.

Barry
User
Posted 03 Jul 2015 at 08:22

I hope that the HIFU works for you Barry and that there are no major side effects from that and the HT.

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 03 Jul 2015 at 09:05
Barry

As always wishing you the best with your treatments I will be thinking of you.

Xx

Mo

User
Posted 03 Jul 2015 at 10:08

Good luck Barry

Bri

User
Posted 22 Jul 2015 at 08:29


Hi again Barry,

Just to say very best of luck for next week, and everything that follows.

Cheers / David

'It couldn't possibly happen to me....'
User
Posted 22 Jul 2015 at 18:13

Very Best wishes for the treatment Barry.

You have worked hard at researching options & I'm sure we all look forward to a successful outcome.

User
Posted 23 Jul 2015 at 01:14

Thank you for kind thoughts and good wishes on my forthcoming operation. It's been a long time coming with continuing admin problems and delays. I will report how this goes, maybe starting a new thread specifically on HIFU as this is not a treatment option about which we see much written and it may be of interest to some who may consider it as a possibility for themselves.

Barry
User
Posted 23 Jul 2015 at 09:54

Barry

I wish you well and echo Rob's comment. Starting a thread specifically for this way forward reads like a good idea to me.

My only advice is: check they have the right patient and check which part they intend to treat :)

Ray

User
Posted 23 Jul 2015 at 16:21

Hi Barry

I am sure you have researched HIFU and decided it is for you. Best wishes for your treatment and if you set up a thread afterwards I am sure it will be of interest to many.

Best regards

Alan

Edited by member 23 Jul 2015 at 21:09  | Reason: Not specified

User
Posted 23 Jul 2015 at 18:57

Good Luck Barry!

 

Looking forward to seeing your reports of a problem free procedure putting you on target for the best of outcomes.

A new thread about your HIFU would be a great idea.

 

All the very best to you and to Barbara.

We'll be thinking of you next week.

 

George

User
Posted 31 Jul 2015 at 11:15

Had my HIFU operation on 28th July and will start a new thread on 'HIFU, my experience'. I have been offered HT (Zoladex) to treat the highly suspicious iliac node but before starting this and once again experiencing the side effects HT can give, I have initiated enquiries on whether Nanoknife could be used to treat this node as an alternative to HT.

Barry
User
Posted 31 Jul 2015 at 11:23

Barry

Well done and look forward to your next thread

Ray

User
Posted 31 Jul 2015 at 12:20
Hi Barry

Well done. I like your style, keep hitting it where it hurts

Roy

User
Posted 31 Jul 2015 at 13:45
Barry

Great news thanks for sharing, more people are asking about HIFU so a new thread will make it easy for people to find.

Good luck in your research with alternative treatments to HT.

Xx

Mo

 
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