Towards further treatment

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

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 21 May 2015 at 23:37  | Reason: Not specified

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.

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

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.

Hi again Barry,

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

Cheers / David

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.

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 20:09  | Reason: Not specified

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.