Has RT Failed

Just had a call from my Oncologist after my persistently chasing him as regards my scans treatment etc. I get the impression that he is trying to shut the door on any treatment to the pelvis as he says the spread which is now 1cm in size is in a difficult place and hard to get enough radiation to the area,due to the placement of the bowel, but on pressing him it came out that the radiologist planner has not even seen the scan as he is on holiday, so it's back on hormones and keeping the pressure on him to come up with the goods. He should know by now I won't take no for an answer, it's my life I am fighting for.

Roy

Hi Roy,

It can be difficult to deliver RT to a particular area without the risk of damage to nearby organs because of the location and the nature of Photon RT. This would include Cyberknife. Where cancer has been located, It might be possible to attack it with Proton Beam which can unload on the cancer rather than Photons which cause collateral damage on the way to the target and after it. Another possibility is Nanoknife (irreversable electroporation) which does not rely on radiation or heat. Unfortunately, both of these treatments are not presently available the UK for PCa and many UK consultants are reluctant to refer patients abroad for such treatments.

Although the recurrent cancer in my Prostate has been treated with HIFU, I have a very suspicious Iliac Lymph Node which HIFU cannot treat and it has been proposed to deal with this deal systemically by HT. However, before starting HT I want to explore any other possibilities.

I am presently awaiting an answer from a clinic in Germany on whether they will treat a single Iliac Lymph Node with Nanoknife
and if the answer is no, I will then approach another facility in Germany on treating with Proton Beam.

Hi Roy,

I go back to the link you gave:- https://www.youtube.com/watch?v=NkqizmvqJPo

This is a very interesting lecture by Dr Kwon of the highly respected Mayo clinic. I accept very much his line of thinking not to rely on HT to deal with hot spots as this may shrink and contain the cancer for a time but will allow resilient cancer cells to mutate and to set up colonies elsewhere. As he says, the best course of action is to treat an isolated site or a small number of sites at the earliest opportunity. I would be happy for Dr Kwon to treat me if I could not get effective treatment in Europe but unfortunately the cost and logistics of going to the USA pretty well rule this out.

It may interest you to know that I have received a reply from my contact in Heidelberg advising that they might be prepared to treat my Iliac node with EBRT plus a Proton boost provided it was in the pelvic area, that they are given my histology and scans and that I have HT for 3 years starting 2 months before the RT. How much RT I would need has not been stated at this preliminary stage. (I am rather surprised because I have already had more radiation than I would have been permitted had my original RT been in the UK). This is more restrictive than the treatment given by Dr Kwon because he treats hot spots in places not confined to the pelvic area and not always requiring HT.

Unfortunately, the clinic in Germany who claim to be the only one there who treat PCa with Nanoknife have not replied to my 2 emails . so I will give them a ring. I would prefer this to further radiation if suitable.

My only other thought is to go back to the Marsden who I believe have Cyberknife and ask them whether they would treat my Iliac node with it.

We are in a similar position except your hot sport is in bone and mine in a node. I will let you know how I get on and would be grateful if you would do the same. Have you tried the Proton Beam centre in Munich?

Edited by member 22 Aug 2015 at 00:29  | Reason: Not specified

Thanks for the posts.

Barry I will try the centre in Munich to see what their response is regarding treatment to bone. I am pleased you have a possible solution to your problem and you are researching even more options, I know the QE in Birmingham has the Cyberknife and that maybe it could be possibility for me but like anything on the NHS there seems to be little urgency or am I impatient?.

Hi Si, thanks for the info my stats are:

ALT 18

BILI 7

ALP1 81

ALB 50

CA 2.43

These have been within limits since the start I think, PSA seems the only indicator. It's good to see you are doing well judging by your comments Regarding having no questions for Jamie. I think the only question I would have is, if all restrictions were to be taken away by NICE and all options were on the table ie meds, machinery etc would he be more innovative in your treatment.

Good luck to both of you and thanks once again, and I will keep you updated as things move forward.

Roy

Hi Dave,

You are right on the Marsden having Cyberknife which can treat tissue and bone, so is a possible option for both Roy and myself.

Great news - it's good to see new procedures coming on-stream.- Certainly sounds the business!

Flexi

Wow - 8Gy is one hell of a blast - it will be fascinating to watch the trial data emerge. Good on you for your persistence

Edited by member 18 Sep 2015 at 00:27  | Reason: Not specified

Well done Roy...I knew you would come up with another plan of attack....I'd have you on my team any day

Good luck with the procedure mate

Bri

Si, I didn't find out which type of scan they would use, apart from it will be a CT and MRI combination, and that where a normal scan is in 3mm slices, this one will be in 1mm slices giving a more accurate model of the spread area, which sound good to me. I believe the machine used will be the Electa Versa, which has just been installed at the QE.

Just seen my blood results taken yesterday and the PSA is down from 9.2 to 1.3 in 5 weeks so going the right way. The only bloods out of range was WBC which should be 4-11 came in at 13.4 and as it is the first time it has been measured I don't know if it is significant, the RBC and platelets are in normal range, so any ideas guys, is it just a possible infection or my immune system having a go at the cancer.

Cheers

Roy

Edited by member 18 Sep 2015 at 12:15  | Reason: Not specified

Thanks for the info. I have had the Choline PET/CT scan which pinpointed the spread and have had a PSMA scan in Munich which is the more sensitive, but this one is going to be a 3D scan for planning the treatment creating a virtual model of the tumor to be zapped. The zapping as far as I am aware is 4D which is basically 3D plus motion, taking into account breathing etc and adjusting the machine in real time to compensate. The Cyberknife was a treatment I was looking into but was ruled out as It wouldn't be able to track any possible movement, resulting in the target being missed, an option would be to put markers around the tumor to allow the cyberknife to track the motion, but the only place these could be sited would have been in the muscle and fat surrounding the pelvis so not ideal. The other option I wanted to persue was HIFU but even though I know it has been trialed abroad there is nobody in the UK performing this at present. Proton therapy would have been my next option but I would have to travel abroad and at a cost of 16-30K plus it's very expensive.

Roy

Hi Roy,

Thanks for that; it seems as if the doses on the electra are similar to cyberknife which are done on 3 alternate days. Should I be allowed to go down that route, I understand that with pelvic lymph nodes, the markers can be omitted and the spine used as a reference point.

Interesting thing the RT oncologist said that if I wasn't allowed cyberknife, I could have the bog-standard radiotheraphy (as before on the prostate) but he would have to apply for funding.

Obviously, it's possible to read too much into that but I was under the impression that standard RT could only be performed once in the pelvic area; could it be that we are all allowed 'one free shot' at RT and further treatments are feasible from a medical viewpoint but there is a cost factor?

Dave

I asked about further radiation at my consultation on 23rd September (about which I will comment further in a new thread). I was told that this can be done but they don't want to radiate areas that have previously been radiated. It is therefore important to know where previous radiation was directed and how many gys bearing in mind photon RT affects not just the cancer target.

Edited by member 02 Oct 2015 at 00:15  | Reason: Not specified

I'm at the QE in Birmingham.

If you need any info just ask.

I have just read the article in the Telegraph, I always suspected that I was fobbed off when I requested a PSA test, due to the doctor not being paid to carry out the test, and it affecting his bottom line, I never thought he may be receiving a financial incentive not to diagnose me. I'm disgusted.

Roy

Edited by member 02 Oct 2015 at 09:00  | Reason: Not specified

I will be starting the process on the 19th of November which will be a dummy run and then start the zapping proper on the 20th for three sessions for what I am told is now to be 30gy in total, so an increase on the 24gy I was initially told. There seems to be a lot of interest in my treatment as I am the first to undergo SABR at the QE so they are being very meticulous in the planning etc, so hopefully this will go in my favour lol.

The machine to be used will be the http://www.uhb.nhs.uk/news/new-radiotherapy-room.htm but I am told SABR can be carried out by a variety of machines already in many of the NHS hospitals.

Roy

Edited by member 23 Oct 2015 at 10:44  | Reason: Not specified

Hi Roy,

Good idea to swap notes. I intend/ed to start another thread but in the meantime, I'll just start by mentioning my MRI.

The machine looked very state-of-the-art compared with our local hospital's. The scanning centre at MV is actually a charity founded by a doctor wishing to increase the availability of diagnostics.

The radiography staff were all very pleasant.

There was no requirement for a water intake.

As you will know, there are occasions when you are required to fill your lungs and then hold your breath (in contrast to my PET/MRs where I was required to empty my lungs and hold my breath which never seemed logical and  also more difficult to me as it seems natural to fill up first)

The radiographer indicated that this part was over. This led to some confusion later when I heard;

"....... thresholds .."

(me) "Sorry, could you repeat that?"

"....... thresholds .."

(me) "I'm sorry but I don't understand"

She re-phrased and I then understood perfectly.

It turned out that the radiographer was preparing me for more BREATHHOLDS,  a word that if it even exists, was totally unknown to me.

Unnecessarily, a new radiographer took over the voice communication.

Result was that I was  embarrassed  that I had to ask for a couple of repeats, and that probably the radiographer was left with the impression that I was some deaf old coot with comprehension problems.

I was pleasantly surprised to find out at my consultation with the oncologist an hour later the scan results were ready and that SABR treatment could now go ahead.

I was then put in for a planning CT scan in another department. Two cups of water followed by a contrasting agent inserted by cannula.

 The staff again were very pleasant but the account of that scanning experience is best left for another time although the moral would be: Don't have a CT scan at short notice late on a Friday afternoon.

Dave

This time next week it will be all over, just hope it works. Will post an update when completed.

Roy

They prefer for the PSA to be between 1 and 2 although it can be done with a lower figure, so I don't think at 0.1 it would show up anything.

The PSMA scan is more sensitive than the Choline and will pick up spread at a lower level, but I think as I have said with such a low figure it wouldn't be helpful.

I will be posting later which may clarify this, as more spread has been found in my case which didn't show up on the Choline PET/CT scan.

All the best

Roy

Hi Guys

I thought i would just update you on my journey. I have now finished the SABR treatment at Birmingham QE and am awaiting the follow up on 17th December which i believe is probably just a meeting with my Oncologist and the trial team to discuss how the treatment went and what side effects i may have had, which i must say have not manifested themselves up to now, but is early days, this i am told will enable them if successful, to request additional funding from the Government to carry out more of this type of treatment.

On day one which was the trial run, i was informed i would be having a meeting with my Oncologist prior to the dummy run which i thought was just routine, but he wanted to inform me that the detailed scan i had to plan the treatment, had picked up further spread in my pelvic bone, but this time on the left side which was very small at 5mm and didn’t show up on the normal Choline PET/CT scan, this was due to the fact that the CT Scan is taken at 3mm intervals and with it being only 5mm in size possibly only appeared on one frame and was missed, but the HD MRi scan which took an hour just for the pelvis, takes scans every 1mm so showed up clearly, so bad news but also good that it was picked up or the zapping would have been in vain. I was told that if the RT machine couldn’t pick the further spread treatment would not go ahead so my mind went into overdrive to try to formulate a plan if the scan was negative, but thank god it was visible and the dummy run went ahead as planned. Due to the additional spread the treatment time was doubled to 40min which comprised of the machine scanning me several times prior to zapping and then repeating it for the additional spread. Even though the treatment was 40min long i found it relaxing and had to fight off the urge to have a nap as i had to keep still, and the bonus of not having to fill my bladder to bursting,plus the benefit of not being encased in the tunnel made it quite uneventful.

Over the 3 days everything went to plan and apart from the long 140 mile round trip everything went well, i only hope they hit the bulls eye.

One last point is that after my meeting with the Onco i requested a PSA test so i could use it as a baseline and although he said that it wasn’t necessary he agreed, and the result was that it had reduced down to 0.63 so the Bicalalumide is having the desired effect.

Roy

As far as I am aware there will be another scan in the future, but what the timescale is I don't know. The reason I asked for the PSA test was as you say, HT will possible mask the true results, therefore my logic is to stay on the hormones until hopefully the PSA returns a figure of undetectable and then to come off them to see if it is the hormones or the RT causing the figure returned. My theory is that the hormones will keep the cancer at bay if the RT failed and if the RT has been successful then the only negative will be the side effects of the hormones.

Thanks

Roy

My PSA taken yesterday was 0.47 down from 0.63 last month with hormones in the mix so a way to go yet.

Roy

Hi Roy,

Encouraging PSA result but with two pronged attack. Without HT next PSA may not show such a marked reduction but hopefully will still fall.