Towards further treatment

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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

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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 16:13

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 00:00

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 01 Apr 2015 at 23:32

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 01 Apr 2015 at 23:43 | Reason: Not specified

Barry

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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

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

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 !) ,

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 16:13

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 00:00

Hi Dave,

Barry

User

Posted 01 Apr 2015 at 23:32

Hi Dave,

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

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.

Good luck with your scan!

Edited by member 01 Apr 2015 at 23:43 | Reason: Not specified

Barry

User

Posted 02 Apr 2015 at 01:07

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 10:12

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 16:00

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 20:25

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 21:41

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.

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