Background.
Some of you folks will recall that following failed RT, I had salvage HIFU in 2015 at UCLH. This seems to have dealt with the intended tumour but there is another in a different position within the Prostate which UCLH subsequently wanted to treat only with HT because they were convinced that an Iliac Lymph Node was also affected and systemic treatment was the way to go. However, I obtained opinions from three other hospitals, all of whom were unconvinced that the uptake in a Choline PET scan and the shape and size of the Node was indicative of it being cancerous. I was not going to start HT, with all the potential side effects that this can induce unless cancer in this node was certain. I therefore asked UCLH whether they would do a more definitive PSMA scan, (also recommended by two of the three other hospitals). After months of ignoring my request and my involving PALS, they said they would not give a PSMA scan and furthermore they would not treat me with further focal therapy even if it was not in the contentious node. I subsequently had the PSMA scan done privately at yet another center and was told it showed only cancer within the Prostate and none outside. I sent the scans to the Royal Marsden who had referred me for treatment at UCLH previously and they recommended I ask UCLH whether they would treat me with further focal therapy to deal with the small tumour which was producing the PSA. I sent a request to UCLH along with the PSMA scan and a copy of the letter from the Marsden. After a month without reply I sent UCLH a chaser but no reply. In fact I still have not received a direct reply even now. However, I did enlist the help of PALS at UCLH who intervened on my behalf and shortly thereafter I received a telephone appointment from a Dr who said they would give me an MRI scan which would show the cancer in the Prostate more accurately.
So I rang the Imaging Department and said I assumed the MRI would be on a 3Tesla scanner as was previously the case when I had HIFU at UCLH but was told it would only be on a 1.5 scanner and this would be adequate for the purpose!! I wrote back to UCLH and copied this to the Marsden expressing surprise and concern that when trying to pin point a tumour with great accuracy for possible HIFU, the better definition 3Tesla scanner was not to be used. In the end I just had the scan yesterday (Sunday!) and have been given a follow up appointment for 11th September. I will be wanting to know for certain whether they will give me further focal treatment or if I will have to have the treatment done privately, somewhere, something I could have had done several months ago.
There are two lessons to be learnt from the forgoing, firstly that even top doctors opinion is not always right and secondly, keep pushing even if you have to involve PALS.
I took the opportunity whilst at UCLH to peep through the hoardings at the close by and extensive building under construction for the new Proton Beam Cyclotron which has been received from Germany. It is planned to be open by 2020 but there is still a considerable amount of work to be done and I think this date may be a little optimistic. Whilst I am sure staff will be fully trained to operate it when ready, there must be a doubt about how well the administration will cope. A number of people have recorded poor experience with UCLH admin in the past on this forum including me. On one occasion I was given appointments for two scans, in different buildings at overlapping times and to cap it all these two scans should not be done on the same day - just one of several examples.
https://www.uclh.nhs.uk/News/Pages/90tonnecancerfightingcyclotronarrivesinLondon.aspx
The introduction of the Cyclotrons at the Christie in Manchester and in London will benefit patients with certain types of cancer but unlikely those with PCa unless a few with PCa are treated in a small trial to answer more definitively how Proton Beam compares with various forms of radiation. Unfortunately, we are years behind other countries in installing Hadron therapy machines and the Cyclotrons are only capable of delivering Proton Beam whilst some other countries have gone further and installed Synchotrons which can deliver ions including Carbons Ions that pack a far greater punch than Protons. But that's the British way - too little and late!
Edited by member 20 Aug 2018 at 11:05
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Barry |
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Your tenacity is laudable Barry. I hope you can get the HIFU on the NHS and soon.
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If you’d sat back and relied on the NHS to organise your treatment you probably wouldn’t be much “older”!
I have had two referrals to oncologists following my RP biopsy results. The one from my GP marked “urgent” three weeks ago was ‘never received’ at the hospital and has had to be FAXED! again.
The other referral letter from my surgeon to a different oncology department, dictated in my presence three weeks ago, (with a note to his secretary for me to be copied in) has yet to arrive! I’ve still got a FAX, so if they send me the letter I could deliver it to the hospital in person.
I would still like to think I am cured as my PSA is undetectable, but it would be good to discuss the post-op histology with a Consultant Oncologist or two, sooner, rather than later.
User
I briefly misread your post and thought I saw the great news that they are introducing hardon therapy machines in London and Manchester......😂😂😂😂😂
User
Now there would be waiting list for that!!!!
User
These two are Proton Bean cyclotrons which are classified as Hadron machines John. Think of the so called 'Large Hadron Collider' using Protons to clash on a vast scale for experimentation but here on a small scale for firing Protons into tumours. In Germany , Japan and some other countries they use larger and more energy hungry machines still classified as Hadrons but capable of producing other ions as well as as Protons. Here is the one at Heidelberg which was inaugurated in 2009. Unlike the small 90 ton machines being provided in London and Manchester, just the gantry of of the Heidelberg unit weighs some 660 tons. It requires the equivalent power of a town of 10,000 people and a staff including medical and maintenance people of about about 70. As inevitably is the way, the next center of it's kind which was built in Pavia Italy, was slightly smaller. I suppose the capital and ongoing cost of building such a large unit in the UK, together with adequate space and power requirements was a step too far. https://www.youtube.com/watch?v=LeApaY7ctMo
Barry |
User
Many thanks for the update. I will look into it.
Is there any news about a hard-on therapy machine in the future, or will I have to make do with a pump? 😉
User
Barry, reciprocating prosthetic penis technology has advanced considerably since your visit to Scotland Yard. Was it a wind-up gramophone running at 78 rpm? They say that some preferred an electricity-powered, slower, longer (fore?)play at 33 rpm! Thus 78 rpm became obsolete.
You could check out the state of the art device known as a Sybian. Look it up! They do a male version too.
Cheers, John.
Edited by member 20 Aug 2018 at 21:20
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User
John, I could but will not encourage you further - diversion over!
Barry |
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Well back to the more serious stuff!
I had the MRI at UCLH and this Tuesday had a telephone appointment (not the in person in London as they advised in error). This scan was said to be because they wanted to make a more accurate assessment than displayed in the PSMA scan I provided them with. In view of the need for greater clarity, they wanted an MRII but I expected it to be on a 3Tesla scanner and again asked the radiographer about this before the scan started and was told a 3 Tesla scan had not been requested. No surprise to me then when told there was little difference between the MRI scans I had over 2 years ago and this latest one. which was not too clear. But because of this they want me to again send the PSMA scan which I previously provided - the one where they previously thought it needed further assessment with MRI, so I am going round in circles! I always seem to get to speak with a different doctor and get the impression that they might just know the latest event but have no knowledge of my histology and it's relevance.
I asked if I could send the PSMA scan to somebody else this time as the registrar It was previously sent to ignored my letters and it was only when I involved PALS that I was given an appointment. It was suggested that I send the scan this time to the top man's secretary and I rang her to tell her it was coming under a covering letter. It really is hard work dealing with UCLH! I am beginning to wish I had had the scans and any further treatment privately in Germany where I know everything is quick and well organized and would have been done months ago.
Anyway, on a more positive note, UCLH are going to give me a template biopsy in 2-3 weeks apparently. It is then for them to say whether they consider the cancer warrants treatment. If they say specific treatment is not necessary I will say (again) that HT is not necessary then and seek another opinion because my PSA increases slightly at every 3 monthly test. More wait and see!
Barry |
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You’re certainly getting the run around Barry. It’s good you are proactive and persistent. I hope the template biopsy gives a clear direction on whether further treatment is needed or not.
Ian
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Thank you Ian.
UCLH medically have a lot of skills and run or participate in many trials. It is annoying that whether from overload, poor organisation or whatever, so many errors and inconsistencies are experienced. This is not just my experience but there have been others on here who have had this also. I remember one forum member said he had put in a written complaint.
I will update this thread when the biopsy has been done and the result is given.
Barry |
User
I bet they talk about you in the staff room, Barry - not many 82 year olds would be this persistent! You are ore or less the same age as my dad and yet you are at opposite ends of the scale in terms of approach.
I hope you get what you are hoping for x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Takes all kinds I guess. As you have noted, I don't give up easily. In fact my Mother used to say I was like a dog with a bone - just would't let go! Also, I learnt during my working life that if I was polite but persistent and didn't go too OTT, many would give way just to get me off their backs! The meek might inherit another world but they sure don't inherit this one.
Hope staff have something more interesting than me to talk about in their free time Lyn, although I expect some patients are sometimes discussed. Yes, 82 now but still a long way to match my Dad who lived to 98 and could well have lived longer if properly diagnosed and treated and my Mother who lived to 101.
It is important that I try to outlive a family member for whom I am a carer, another reason for being around for a few more years.
Barry |
User
Good for you Barry I sincerely hope you get to at least 101 however as none of us live forever I personally would not like my husband to be using up all his time and energy putting himself through more tests and treatments at 80+ given the toll they take mentally as well as physically . But it's your life and you must do what you feel comfortable with. Good luck with your fothcoming biopsy.
Ann
User
You are as old as you feel Barry - keep at them it's the only way. My mum who has a serious heart condition had her hip replaced at 85 - best thing she ever did 3 years on..