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User

Posted 17 Sep 2015 at 18:52

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

Flexi

User

Posted 17 Sep 2015 at 19:12

Roy

wonderful news and Man do we need some of that today

so pleased you have been accepted for the SABR procedure and I really hope this works for you

User

Posted 17 Sep 2015 at 21:38

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 17 Sep 2015 at 23:27 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Sep 2015 at 22:06

Hi Roy,

Very interesting - hope you tolerate the treatment well and that it gives a great result. Will follow your progress with great interest.

Barry

User

Posted 18 Sep 2015 at 06:55

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

User

Posted 18 Sep 2015 at 07:07

Well done Roy, sounds very interesting.

I am guessing the scan you are on about is a SPECT CT scan

Good luck

Don't deny the diagnosis; try to defy the verdict

User

Posted 18 Sep 2015 at 09:59

Thanks Guys and Gals for your posts, it means a lot.

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 11:15 | Reason: Not specified

User

Posted 19 Sep 2015 at 12:13

Hi Roy,

I wonder if your pre-treatment scan will be the same type as the one I have just had at UCLH in London?

It was a Choline PET/MR scan which is supposed combine two techniques in order to produce a much more defined image than previously.

It required me to have an injection of Choline and a wait of about an hour while the solution reaches the parts that it's

supposed to reach.

The time in the 'tube' lasts about thirty minutes- it's quite noisy - none of this listening to a favourite CD - they provide ear plugs.

The noise is not consistent but varies between electronic noises (like a truck backing up makes) and mechanical noises.

Despite the ear-plugs, there was a need to hear the radiographer call out 'breath in', 'breath out', 'hold' instructions.

A hospital gown was provided but it was also permitted to wear something like jogging bottoms (no metal ) and a tee shirt, which I preferred as I always get given a short gown with missing tapes (don't we all?!)

The whole process took three hours and at UCLH they are invariably in the afternoon as the solution has to be manufactured outside London and couriered in. Apparently it only has a short life and so timing is critical.

Sessions are sometimes cancelled because of manufacturing faults of the solution (shown by pre-shipment testing so if your scan is to be similar, it might be worth having the possibility of a postponement in the back of your mind.

My rail fare was refunded on my previous cancellation- they weren't going to refund my wife's but I pulled a long face and they relented.

I was interested in your mention of the Electa Versa, which will deliver the RT, sounds very state of the art. From looking it up, it seems to do the same as the Cyberknife but I guess cyberknife is a trade-mark. Certainly appears to look different with the older machine looking like a car assembly robot.

Good luck with the process, it's good to know things are happening.

Dave

Edited by member 19 Sep 2015 at 14:39 | Reason: Not specified

Not "Why Me?" but "Why Not Me"?

User

Posted 19 Sep 2015 at 17:50

Hi Dave

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

User

Posted 19 Sep 2015 at 22:51

Hi Roy,

It seems you have found a very good option. However, as you mention HIFU, this is is best for cancer that is confined to the prostate or very very close to it. For those for whom it might be suitable. UCLH told me that they are training surgeons to administer HIFU in other facilities, so there should soon be more than the few centers in the UK that presently use it. This hospital claims to be able to treat PCa with all available types of treatment which includes HIFU. http://www.royalsurrey.nhs.uk/Services/Urology

This is a private clinic that treats with HIFU http://www.privatehealth.co.uk/doctors-and-health-professionals/urology/john-davies/

Edited by member 20 Sep 2015 at 21:49 | Reason: Not specified

Barry

User

Posted 19 Sep 2015 at 23:19

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

Not "Why Me?" but "Why Not Me"?

User

Posted 20 Sep 2015 at 22:27

Dave,

I have an appointment with the Marsden on 23rd Sep and will take the opportunity to ask about the SABR Roy is having and the thinking on further doses of radiation after a man has had it as a primary treatment. (When I first considered RT at the Marsden back in 2007 as my primary treatment I asked if I could have a higher dose than the 74gy given in 2gy fractions recommended by NICE, as I read that higher doses gave better results, albeit with greater risk of more severe side effects. This request was refused.) It could make a difference as to where the cancer has spread and how much radiation this area has received previously or the thinking may changed or it may be this would be considered on a case by case basis. Clearly, there must be a point beyond which further RT will become unexceptionably dangerous. I will post what I am told at my consultation.

Barry

User

Posted 24 Sep 2015 at 22:34

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 01 Oct 2015 at 23:15 | Reason: Not specified

Barry

User

Posted 02 Oct 2015 at 00:04

Hi Roy,
My second opinion was at the old QE B'ham back in 2007 but moved on so I can't use him as a contact. Nevertheless, I will ask my GP whether he would refer me to the new QE for an opinion on my scans and if appropriate for treatment with Cyberknife or SABR. Unfortunately, many commissioning bodies or whatever they call themselves, will not fund Cyberknife but might agree to SABR funded through a trial.

(Just seen newspaper reviews on TV and two papers have a headline that GP's are to be paid a bonus for NOT referring cancer patients to hospital - can you believe it?!!!!)

Barry

User

Posted 02 Oct 2015 at 00:16

Hi Barry

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 08:00 | Reason: Not specified

User

Posted 02 Oct 2015 at 23:00

Thanks Roy,

Saw my GP today and he will support my referral to QE for an opinion on my scans and possible treatment at QE if appropriate but I will write more under my thread because this one is yours.

Edited by member 24 Oct 2015 at 20:06 | Reason: Not specified

Barry

User

Posted 23 Oct 2015 at 09:40

I am now into the planning stage for the SABR treatment. I attended the QE yesterday to have the scans needed to plan the treatment, the first being a CT scan which required me to drink the obligatory 4 cups of water and I was scanned for 30 min which was ok, I then had to consume an additional 4 cups and walk to the MRI scanner which is situated in the new part of the hospital and undergo the MRI scan which lasted another hour, these will be fused together to obtain a 3D image which will be utilised to plan the treatment, i had forgotten how painful it was to hold onto that amount of liquid for that length of time and was praying for them to hurry up and finish, and just when I thought it was all over the nurse came into the room and informed me they needed to administer a contrast agent and rescan me, I imformed them that I was ready for bursting and they said they could see it on the scan, but I had to hang in there for a little longer, I thought to myself do you understand what you are asking, you should experience this, anyway I just managed to hang on thank god.

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 09:44 | Reason: Not specified

User

Posted 23 Oct 2015 at 10:22

Great update - I hope it all goes smoothly

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 23 Oct 2015 at 12:50

Roy

There will be many people watching your thread with great interest. Ground breaking treatments or new approaches to treatments are always captivating. You have openly shared your experiences throughout your journey and I thank you sincerely for that.

I will be watching out for your updates and wishing you the best possible outcome.

User

Posted 24 Oct 2015 at 18:33

Hi Roy,

Very good news about the SABR, especially as cyberknife seemed to be ruled out for you earlier.

I have finally go the go-ahead for SABR at Mount Vernon (it was dependent on the results of both a PET/MR and subsequently, a MRI showing no other spread apart from the 'glowing' lymph node which will be treated)

So I'm pretty well at a similar stage to yourself, waiting for the planning results.

Dave

Not "Why Me?" but "Why Not Me"?

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