Different opinions from 2 Hospitals=Dilemma

Hmmm. Some deep thinking going to have to take place for you there Barry.

I wouldn't even know where to start on advice and even my thoughts are muddled so goodness know what yours must be like.

Both of those hospitals have fantastic reputations.

Right - now if the Marsden accept that it is suspicious but not cancerous what is the alternative. Are they saying it could be something relatively "mild" and if so and it is treated with the HT, that it will have no effect on it at all and they'll only know it was cancerous if the HT shrinks it?

What effect will the HT have on the rest of your cancer (or your body) apart from the usual unpleasant side effects. Will it help with the recurrent cancer in the prostate?

If you can afford the 68 Gallium PET scan that would then help with a future decision wouldn't it? If it is superior and likely to give a more accurate picture of what is happening, would that not be the best way forward.

At least having had the scan you will know where you stand. You could show the results to both British hospitals, especially the Marsden, if the scan shows that there is something definitely there which needs to be treated ASAP.

Financially perhaps it will be a huge strain and the thought of 3 years HT must be daunting.

Stating the obvious now Barry, sorry.

I hope somebody else will come along and give their input as I can't weigh up those pros and cons for you, never having had any of that treatment.

I wish you well with the decision and I'll be thinking of you.

Best Wishes

Sandra

Hi Barry very hard when you have two differing options for treatment . After reading your post a couple of times I would go to the German clinic and have the scan if I could afford to as this would give you a third opinion and may let you decide better which way to go and I would prefer to react rather than waiting to see if my psa did rise as you said this could move/ mutate elsewhere. all the best Andy

Excellent point Roy. I'm stuck in this mess too. I've had the Choline PET which was clear , yet they say it was prob too early at PSA 2.2 , and they still believe my reading and rate of climb show spread / mets after a radical prostatectomy. However they giving me HT and RT in the new year hoping that it hasn't spread , despite RT being useless if it HAS spread. Sleepless nights !!
Best wishes Barry

Hi Folks,

Firstly, I would like to thank those who posted support and thoughts. I can now update following a meeting with Dr P at the Marsden on 23rd September and another with my GP last Friday.

I was led to believe that the Marsden initially were unconvinced that the iliac node was cancerous based on my PSA histology and with a pre HIFU figure of 1.99 and post HIFU figure of 0.42. Their opinion was not changed after seeing my scans and their advice was still not to start HT but to have another PSA test in four months. (I am due for a PSA test before then to meet the criteria of the UCLH HIFU study). I have decided not to start HT meanwhile, as this can mask how successful the HIFU has been and/or whether the node is causing a rise. The meeting I had at the Marsden though cordial was a strange one. After having said he remembered me from when we last met in 2008, the next words from Dr P were “what can we do for you?” I said there had been correspondence between Dr (now Professor H, at the Marsden, UCLH and me which I had copied to both hospitals and I had sent Professor H my scans and was hoping they would provide more aggressive treatment for my node . UCLH were only proposing HT. I had reverted to the Marsden because they referred me to UCLH for HIFU and actually wrote to UCLH saying they had received no feedback from them, so were clearly showing a continuing interest in monitoring me. It was then that Dr P told me that they had seen my scans and were unconvinced that that the node was cancerous, so no treatment offered by them. Furthermore, I was told that my treatment was down to my treating hospital, now UCLH and that if in due course my PSA was to rise I could get my GP to refer me back to the Marsden. In other words, contrary to what they previously wrote, they are not interested in monitoring me. This change in attitude may have been brought about because UCLH told the Marsden it would require careful cooperation if I was a patient of both hospitals. A letter to the Marsden copied to me said as much.

My GP agreed with me that because of the different opinions of the two hospitals on whether the single suspect node is cancerous, further opinions should be sought and he would be happy to support me by referrals.

I will follow up the preliminary inquiry I made with Heidelberg University Hospital where I had my RT in 2008 by sending them a disc of my scans and histology and will ask whether they consider the node cancerous and consider it should be treated and if so what treatment they would offer. I will also ask whether the 68 Gallium Pet scan they can do would help the determination. I have my doubts, as this test is perhaps better at finding minuscule numbers of cancer cells , whereas UCLH believe the node glowing with the uptake of Choline indicates cancer. But a better scan might find more metastasis!!

I have a tenuous connection with the QE in Birmingham, since I had a second opinion from an expert on radiation there in 2007 or 2008. However, the Professor is no longer there and although he took some notes at the time, he saw me somewhat unofficially in his lunch break as he had moved from prostates to heads by then and there may not be anything on record. Nevertheless, the QE has an excellent reputation and some advanced equipment. They are also running a trial with SABR which our member Roy is on. I will therefore send a disc of my scans and histology to them for an opinion and for possible treatment if they are prepared to become involved.

I find the treatment at QE excellent and would recommend them to anyone. As we are not allowed to name specific people and can only use initials my Urologist is Mr

D and my Oncologist is Dr E-M, they also practice at the Priory and charge approx £200-£250 and it is only a mile away from the QE, which may be an option initially as this will allow them to spend more time going through the scans etc,after which if appropriate you could be referred to the QE for treatment.

All the best

Roy

Barry

Thanks for the update. Frustrating, to say the least, but you carry on where others could well have given up by now so well done on that.

On the 0.7 is that whilst on or off HT?

Ray

I have now had the disc showing my Choline PET returned by Heidelberg University Hospital together with an opinion. ........"There are some pelvic lymph nodes with faint choline-uptake, however we would not see them as compelling enough to start either antihormonal therapy or radiation therapy. We did also compare the recent images to the last MRI's taken in Heidelberg in 2011, there was no change in morphology or size of the lymph nodes. However, PET is more sensitive for detection of lymph nodes metastases, thus normal morphology and stable size do not rule out the presence of micrometastases in these lymph nodes. As stated in the previous letter, we would recommend to take PSA measurements every three months. If there is an increase (to) above 0.70 ng/ml, we would advise to do a PSMA-PET/CT scan. This can be performed at Heidelberg University Hospital (Department of Nuclear Medicine) or other hospitals in Germany. There are also some centers offering PSMA PET/CT's outside of Germany, however (to our knowledge) none in the UK." *

So this opinion is similar to that of the Royal Marsden except that Heidelberg suggested PSA tests at three months rather than every four months and gave a figure before further scans yet alone treatment. I am minded to go along this route. However, there has been no feed back yet from the Birmingham QE but I am aware my GP took some time to contact them and this is England afterall!!

*When thanking my contact in Heidelberg, I took the opportunity to point out that UCLH now do the PSMA PET scan which could perhaps be helpful for my case at some point.

Edited by member 12 May 2016 at 13:00  | Reason: Not specified

Well it's happened, as I feared it most probably would! I refer to my PSA 9 months post HIFU having risen to 0.70, the figure my original RT treating hospital in Germany suggested should trigger the 68 Gallium PSMA scan with a view to me having possible further HT/RT. As it happens, I had a full body MRI with 'contrast' on 6th May 2016 within the 'LOCATE' study and I am awaiting a phone call from a consultant to learn whether the scan showed the HIFU was successful and the PSA coming from elsewhere. If it is not possible to obtain a clear opinion on this I will ask if UCLH are prepared to give me the PSMA scan which they now do.

Hi folks,

Saw the top UK focal man Professor E, last Wednesday to consider my situation and inquire about further investigations and treatment possibilities shortly and in due course if my PSA continued to climb, albeit slowly. It had been mentioned by my consultant last year that a further biopsy might be done of the equivocal area in my prostate and I also asked whether the suspect iliac node and if this proved to be cancerous' whether the latter could be removed surgically. My consultant said he would have to get a an opinion on this (presumably from Professor E) but it would appear that the idea of another biopsy was decided against.

So to the appointment. I was the last to be seen and Professor E's clinic was running late. I got the impression, though maybe mistakenly, that he was questioning why I was there, to the extent that I said my consultant had suggested it, which was true. Since my nadir in 2009 every PSA test I have had had showed a small increase over the previous one, the exception being the two PSA tests taken after HIFU in 2015.  However, the last one I had a couple or so weeks ago showed a drop to 0.64 from the previous 0.76 on 18th October 2016. So perhaps another reason to 'wait and see'. I was told that I might never require further treatment and that I was being monitored. But I have already had HIFU for failed RT, so what if my PSA resumed it's climb - what treatment and at what point would this be considered? I was told that it would be HT and if the cancer metastasized then Chemo. There would be no further RT, repeat HIFU or any other invasive treatment given by UCLH, to do so on a prostate that had already been subject to 2 major attacks might well cause more harm than good I was told. I asked whether my age (now 80 years young) played a part in this and was told definitely not. I would not welcome having HT again (8 months of it in 2007/8 was more than enough thank you.) Furthermore, University Hospital Heidelberg, my RT treating hospital have already indicated they would consider giving me further RT if a 68 Gallium PSMA scan showed it could be delivered appropriately. So I may follow this route in need having first established Cyberknife, a possible option, would not be given at 2 other hospitals where I have been seen. It's now a waiting game! Whatever will be will be, there's no point in worrying either way but being prepared for maybe another step is something I can do.

I did ask the Professor about the treatment where bacteria from the depths of the ocean is injected into a patient and activated where wanted by a light. He said that this was at a very early stage and was not expecting this to be used for a year or so. Furthermore, it would be used as a primary treatment and not as a salvage treatment. So no possibility for me there.

Although it was helpful to learn how UCLH would treat me if further treatment should be felt necessary, I considered I had spent the best part of the day traveling between London and North Devon for something that could have been conveyed over the telephone within 5 minuets.

Edited by member 24 Feb 2017 at 16:28  | Reason: Not specified

Barry

As always a very interesting and informative post. I wonder if the tone from Prof E of convential treatment (HT - chemo) is all that will be on offer going forward is due to your own circumstances or a NHS cut back on more groundbreaking treatment for PCa guys in general? If the latter thats a pity as its guys like you who moved treatment bounderies forward. It will be interesting to see if you take the view I gave it my very best shot but now it's time to settle for a more relaxed path. I hope you do but Barry is Barry :-)

Ray

Hi Barry,

I know you have gone into all of this to a much greater level than me, and all of my node business (detailed in profile) was ten years ago and is now superseded by newer treatments.  However, when I was diagnosed, so far as I understood it, their concerns about my node/s was due to the size of them.  They suspected PCa had spread to the nodes that were enlarged.

They had put me on HT from the outset, it turned out to be neoadjuvant HT, but initially it was merely HT to be going on with while they decided whether I merited RT.  At that time, their theory was that if the enlarged nodes shrank after 6 months on HT, then they were infected with PCa.  As it happened my nodes didn't shrink, but they still biopsied them to make sure, and it was only after they had confirmed that the enlarged nodes were benign that they went ahead with the RT.

So in your case, perhaps if at some stage in the future you go on HT, then it might be worth trying to get a scan after six months to see if there has been any change in the size of the nodes?

I don't know whether that might lead to a curative treatment option, but it might give you a clue, have they mentioned anything about the size of the nodes?

:)

Dave     

Hi Barry,

I suppose I have the advantage in that having had HT twice, it holds no fear for me, I would cherish every extra year of life HT gave me.

However by the same token I don't want to be on HT if I don't need to be, so I need my doctors to convince me that I really need it, I think there is a tendency to put us on HT just to be on the safe side.  You know if I was an oncologist with a heavy case load and was presented with a shall we shan't we case, the easy option is to put the guy on HT.

In my case everything depends on the next PSA test, and I am anticipating the worse as I have 'doubled' twice in last three tests, 0.1, 0.2 and 0.4, so if the next one is 0.8 he will want me back on HT although I am tempted to hold out until it goes 1.6 or even 3.2.

He did say he was quite happy with intermittent HT, George H has lasted well on intermittent, and I think that is what I would prefer, but we haven't talked parameters yet.

Best of luck.

:)

Dave