I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Has RT Failed

User
Posted 10 August 2015 10:38:19(UTC)
Hi

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
User
Posted 10 August 2015 18:12:51(UTC)

Hi Roy,

Keep chasing, like you said its your life.

 

Barry

User
Posted 10 August 2015 23:19:47(UTC)

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.


Barry
User
Posted 12 August 2015 09:06:44(UTC)
Hi Barry

Thanks for the reply, I have already contacted the proton unit in Poland and will also enquire in Germany as to whether they will treat the pelvis. Poland are concerned that RT has already been administered in that area and that it is in the bone but are willing to look at my scans and advise. I went yesterday to Birmingham to have my PSA taken and have just seen the results which were no surprise to me, as my PSA velocity is pretty consistent with a doubling time of 6 weeks so it is now at 9.2, so I have started Casodex 150 last night to try to reign it in. I've got to admit it's pretty scary and I have to shake myself and continue the fight, Not forgetting to dig out the Bra again lol.

As the remainder of my bloods seem to be within limits the PSA seems to be the only indicator, but I am new to this part of my journey ie bone mets so if anyone can advise me which blood stats etc I need to be watching it would be appreciated.

Roy
User
Posted 19 August 2015 01:48:13(UTC)

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?

 

Barry
User
Posted 19 August 2015 07:13:09(UTC)

Hi Roy,

Reference bloods, Alkaline phosphatase in the liver function test, the range being 40 - 130 if raised is a good indication of mets activity in the bone. saying that mine has been below 40 for over 6 months.

Jamie also has my calcium checked every month, but with only one site of activity i wouldn't think this would cause you any problems.

I see Jamie tomorrow and apart from our usual argument about zolodex i have bugger all to talk about, even more difficult as he has no interest in football, so if you have any questions let me know.

Keep fighting mate

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 19 August 2015 20:28:57(UTC)
Hi Barry and Si

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



User
Posted 22 August 2015 15:41:53(UTC)

Hi Barry,

 

Marsden certainly do have Cyberknife and I understand have treated a number of cases of PCa spread to lymph nodes with it - worth trying that route.

 

Dave

Not "Why Me?" but "Why Not Me"?
User
Posted 22 August 2015 23:31:51(UTC)

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.

Barry
User
Posted 17 September 2015 17:49:38(UTC)
Hi Guys

Thought I would update you on the latest plan to kick its A**. I am to undergo more RT to the Pelvis using stereotactic ablative body radiotherapy (SABR). I have been lucky to be accepted on a trial which is evaluating this method of treatment and will be a first at the QE. As far as I am aware I will have another CT scan and MRI Scan which will be fused together to give a more detailed view of the spread and when the planning is complete which I am informed takes ten time as long as that for a normal procedure, I will receive. 3 X 8gy = 24gy in total, so fingers crossed.

Roy
User
Posted 17 September 2015 18:52:30(UTC)

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

Flexi

User
Posted 17 September 2015 19:12:15(UTC)
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
xx
Mo
User
Posted 17 September 2015 21:38:46(UTC)

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

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


User
Posted 17 September 2015 22:06:01(UTC)

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 September 2015 06:55:39(UTC)

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 September 2015 07:07:38(UTC)

Well done Roy, sounds very interesting.

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

Good luck

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 18 September 2015 09:59:56(UTC)
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
User
Posted 19 September 2015 12:13:35(UTC)

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

 

 

 

 

 

 

 

 

Not "Why Me?" but "Why Not Me"?
User
Posted 19 September 2015 17:50:52(UTC)
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 September 2015 22:51:20(UTC)

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...als/urology/john-davies/

Barry
User
Posted 19 September 2015 23:19:01(UTC)

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 September 2015 22:27:19(UTC)

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
Thanked 1 time
User
Posted 24 September 2015 22:34:56(UTC)

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.

Barry
User
Posted 02 October 2015 00:04:48(UTC)

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
Thanked 1 time
User
Posted 02 October 2015 00:16:08(UTC)
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
User
Posted 02 October 2015 23:00:57(UTC)

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.

Barry
User
Posted 23 October 2015 09:40:42(UTC)
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/ne...ew-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
User
Posted 23 October 2015 10:22:25(UTC)

Great update - I hope it all goes smoothly

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


Thanked 1 time
User
Posted 23 October 2015 12:50:41(UTC)
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.
Xx
Mo
Thanked 1 time
User
Posted 24 October 2015 18:33:24(UTC)

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"?
Thanked 1 time
User
Posted 24 October 2015 19:08:05(UTC)
Hi Dave

Great news that you are also to receive SABR, we will be able to compare notes and it will also be helpful to others, in that mine will be treating the bone and yours treating the soft tissue Ie lymph node so keep us informed and good luck.

Roy
Thanked 1 time
User
Posted 24 October 2015 20:13:49(UTC)

Hi Dave,

Pleased you have also got the go ahead for SABR. It seems that this treatment is available at several centers so worth looking into by others. One of the earliest facilities and now a major one is at Leeds :- https://www.elekta.com/p...stereotactic-radiotherap

Barry
Thanked 1 time
User
Posted 25 October 2015 06:56:58(UTC)

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

 

 

 

Not "Why Me?" but "Why Not Me"?
User
Posted 18 November 2015 17:21:19(UTC)

Hi Roy,

 

  Good Luck for tomorrow and your subsequent treatments.

 

Dave

Not "Why Me?" but "Why Not Me"?
Thanked 1 time
User
Posted 18 November 2015 23:26:07(UTC)
Thanks Dave

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

Roy
User
Posted 21 November 2015 12:28:43(UTC)

Roy / manwith, could one of you remind me what is the lowest PSA that would be considered possible for a scan to pick up where errant spread is? At 0.1, is there any point me pushing for John to have a PET or bone scan?

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


User
Posted 21 November 2015 12:50:40(UTC)
Hi Lyn

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



User
Posted 21 November 2015 13:12:52(UTC)

Thanks Roy

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


User
Posted 21 November 2015 15:39:39(UTC)

Hi Lyn ,
Your inbox is full ( oh to be so popular )
In short I was told my Choline PET would only be really effective with a PSA of 3 or more. They pre-booked mine but my PSA was 2.2 at the time . They still think it might have been too early to see any spread which they still suspect .
Best wishes
Chris




If life gives you lemons , then make lemonade
Thanked 1 time
User
Posted 22 November 2015 00:23:53(UTC)

Hi Lyn,

I think there is no clear cut answer to this. I believe much depends on the histology of the patient and the attitude of individual consultants and to some extent how strongly you push for it. It has to be remembered that this is a scarce and expensive resource in the UK whether you use the private or NHS route, so patients are likely to be carefully scrutinized and selected.

I only got the MR Choline PET scan because it was one of the scans that formed part of the study at UCLH for salvage HIFU after failed RT. Somebody mentioned that generally men have a PSA of 2 for more for this study, (mine was 1.99 on day of op). However, a small tumour in my prostate had been seen on a scan on a normal but 3 Tesla scanner at the Marsden previously, so it would show up in even better detail on the Choline scan and it also showed a suspicious node which the normal MRI did not.

As you will be aware, PSA is not necessarily proportional to the amount or disposition of the cancer and as with a PSA of 1.99 it showed up in my case but if the cancer is spread in a less dense way could be missed with a PSA of 3. Perhaps best discussed with John's consultant on how he regards it.

The PSMA-PET/CT scan developed in Heidelberg is said to have a higher specificity than the Choline scan and is now available at some other European Hospitals and if considered it would help in John's case and had to be paid for privately, it might be worth investigating relative costs.

 

 

Barry
User
Posted 02 December 2015 12:24:34(UTC)

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

User
Posted 02 December 2015 20:24:01(UTC)

Good to have got that under your belt - do let us know about subsequent PSA results. The HT does of course tend to mask how effective the RT has been, at least in the short term. Will another scan be done in due course as a check or will this depend on your PSA results?

Barry
User
Posted 04 December 2015 10:25:59(UTC)
Hi Barry

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
User
Posted 08 December 2015 15:53:53(UTC)

Just had my first post-SABR  result from PSA taken one month after my treatment.

PSA has dropped from 0.6/0.7 to 0.4 (no HT involved).

I was advised by the oncologist at the time of treatment that any reduction would be gradual, 0.4, 0.2 and so on, therefore a good interim result.

Clearly the treatment has made some impact and although I'm not out of the woods just yet, it's a relief to get an indication that the SABR has had an effect.

Dave

 

 

Not "Why Me?" but "Why Not Me"?
User
Posted 08 December 2015 18:05:24(UTC)

Good news Dave and with the SABR form of RT continuing to do the job for many months yet, hope that PSA figures will continue to fall.

Barry
Thanked 1 time
User
Posted 08 December 2015 18:56:47(UTC)
Marvellous news Dave, looking good, keep us imformed of your progress.

Roy
Thanked 1 time
User
Posted 18 December 2015 10:13:36(UTC)
Attended my appointment with Onco yesterday to find it was not the Onco but the trial team and an understudy. They told me they wanted me to come off the HT immediately to see the true effect on the mets, which I questioned as I wanted the hormones to hold the mets at bay whilst the RT did its business, but they refused my request, so I am hormone free and will be seen again for a PSA and possible scan in March.

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
User
Posted 18 December 2015 10:58:22(UTC)
Roy
All sounds very positive, PSA going in the right direction so that in itself is good news.

Enjoy your HT free Christmas and New Year.
xx
Mo
User
Posted 18 December 2015 20:14:57(UTC)

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.

Barry
User
Posted 14 June 2016 10:49:56(UTC)
Hi Guys

Thought I would give you an update on the SABR treatment I had 6 months ago.

I'm afraid it looks like it didn't work for me, as I had my blood test yesterday which was my second one since the RT was administered, and it showed my PSA was still showing a doubling time of 6 weeks which is pretty consistent, in fact it is so consistent I can now predict my own PSA prior to the bloods being taken which now stands at 3.9.

So there we have it, not good news, I am gutted but I need time to digest the info for when I see my Onco on Thursday, pick myself up, formulate a plan for going forward, the war is not over, so the fight continues.

I know the post above may seem that I am in denial, which I can assure you I am not, but it is not in my character to give up, for me failure is not an option, so as always any suggestions gratefully received as to the ways forward. Answers on a post card please.

Roy
 
©2017 Prostate Cancer UK