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Has RT Failed

User
Posted 21 Jun 2015 at 12:26
Roy

your 2 part question was asked of our wonderful guest Onco yesterday, is there a direct relation between increasing PSA and size of tumours ...simple answer NO .

Can an isolated and identified met be treated by RT or cyber knife ..yes although if the recurrence is in the same place where RT has been used previously there can be some risks involved.

So quite good news it would seem.

Best wishes

xx

Mo

User
Posted 21 Jun 2015 at 18:23
Thanks Mo

I really appreciate the questions being asked on my behalf and of course the reply from the Onco who I assume was J.

As time goes by, the options open to me become less and less, so it's good to know this could be an option for me with the possibility of durable remission. Do you know if anyone past or present on the forum have undergone RT to the bone as a curative and not a palliative treatment, and if so what was the outcome.

Thank you

Roy

Edited by member 21 Jun 2015 at 19:28  | Reason: Not specified

User
Posted 21 Jun 2015 at 19:24
Roy

I don't knoww of anyone personally, but J was quick to say Yes to your question about using RT curatively to small individual recurrence mets. So I have to assume he has either done this himself or he has seen reported cases of it.

Of course you have to remember he is not giving specific advice he cannot do that without seeing all the information so this was a generic answer.

Best wishes

xx

Mo

User
Posted 21 Jun 2015 at 22:04

He said it was possible but only if there was a strong case for believing that the hotspot was singular and isolated. He quickly followed it up by saying that there is no point if there is a possibility that other clusters exist but are too small to see. He also said that it is only possible if the area to be irradiated is not next to an area that has had RT previously (ie only done if the rays are not going to be touching on a previously irradiated prostate bed etc)

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

User
Posted 22 Jun 2015 at 18:39

Hi Roy,

Sorry to hear about the PSA rise, I found your link fascinating so thanks for that.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Jun 2015 at 06:42

Originally Posted by: Online Community Member


.... It's a pity this type of scan is not available from the start for everyone instead of assumptions and statistics.


Roy

 

 Hi Roy,

I feel I can relate to that.

When my PSA rise after RP continued, the urologist referred me to the oncologist, with a view to salvage RT, stating that; "I'll leave it up to (oncologist) to decide whether to give you a scan beforehand"

At the time, I didn't think too much of it, cobblers sticking to their lasts and all that. But on reflection, I'm not so sure.

If it was a case of 'Should I or shouldn't I send him for a scan?" I would think that the reasonable action would have to have proceeded with a scan - especially as I was going private so there should have been no financial down-side for them.

On the other hand, my RT treatment was NHS, was the decision not to scan beforehand (apart from normal pre-RT checks) made on financial grounds?

In the event, I had my RT and my PSA didn't change. I now wonder, based on my recent scan which showed no PCa on the prostate bed, whether my RP was successful and in fact my prostate bed was clear of PCa because of the previous operation and that the PSA result was coming from the 'glowing' lymph node.

Of course it can only ever be guesswork, but was not only the RT on my prostate bed unnecessary but having had it, does it now disqualify me for RT on the node?

It's not something I dwell upon too much, what's done is done. And as I say, only guesswork but I mention it because I believe all info on experiences may benefit by being shared.

Dave

Edited by member 23 Jun 2015 at 07:41  | Reason: Not specified

Not "Why Me?" but "Why Not Me"?
User
Posted 23 Jun 2015 at 11:42
Hi

Thanks Lyn for the additional info from J. The point regarding only treating it if it is singular surprises me, as I believe that in other countries upto 5 areas are able to be treated and in this country upto 3 areas can be treated although there are not many even willing to do that, but I suppose like everything else it comes down to resources etc. I do think some Oncologists are too quick in following the palliative path and follow the NICE guidelines, rather than go for a durable remission.

Thanks. Julie I am pleased you found the video informative as I hope other people find it helpful.

Hi Dave I share your concern regarding treatments undertaken without definitive proof of where the cancer is situated, surely this cannot be of benefit to the patient and the NHS budget. Was your Treatment IMRT and only focused on the prostate bed or was the treatment area more wide spread to catch any theoretical spread elsewhere in the abdomen, as the more focused approach would have been better for future RT. I do hope your lymph node treatment is successful and you can then put this all behind you, so please keep us informed.

Thank you all

Roy

User
Posted 23 Jun 2015 at 11:46

Hi Roy,

I had this discussion with Jamie a long time ago, and with the right equipment he would go after 4 sites. unfortunately i had a lot more than that.

I wish you all the best going forward, i love people that try something just a little bit different.

Si

Edited by member 23 Jun 2015 at 11:46  | Reason: Not specified

Don't deny the diagnosis; try to defy the verdict
User
Posted 23 Jun 2015 at 12:53

John's salvage RT was to prostate bed and bottom of bladder as spread to bladder had been apparent when they opened him up for the RP. The surgeon had ended up removing the bottom part of his bladder and doing a re-design. It therefore seemed reasonable to include in salvage RT as the most likely site of recurrence.

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

User
Posted 02 Jul 2015 at 16:40

Originally Posted by: Online Community Member



Hi Dave I share your concern regarding treatments undertaken without definitive proof of where the cancer is situated, surely this cannot be of benefit to the patient and the NHS budget. Was your Treatment IMRT and only focused on the prostate bed or was the treatment area more wide spread to catch any theoretical spread elsewhere in the abdomen, as the more focused approach would have been better for future RT. I do hope your lymph node treatment is successful and you can then put this all behind you, so please keep us informed.

Thank you all

Roy

Hi Roy,

   Thanks for that, the short answer to your question is 'I don't know'. I would suspect it was focused only on the prostate bed. I had hoped at the time to get some idea of the 'footprint' but it wasn't easy and I was unsuccessful.

Getting information on my RT was like getting blood from a stone - I might just has well been asking the Onco for the name of his tailor!

My reason for finding out, apart from natural curiosity, was that the Urologist and the RT man seemed to be on a different wave-length. Prior to my salvage RT the Uro man stated that he was asking the RT man to concentrate a higher dosage on one side of the prostate bed as that had the higher Gleason score.

 However, when I asked for details of my treatment, all I was told was that "It's 2 gy times 33 = 66 gy" It was even written down of a piece of paper for me!!

  The talk amongst the Prostate Men in the waiting room was that there was one senior radiographer taking (among others) the weekly progress meetings, who was really informative and would demonstrate with the scanning and x-ray images, what was going on. The guys were clearly aware that he was the exception and weren't too impressed with the others who were either senior radiographers or a MacMillan nurse.

 Unfortunately, I got the others on my progress meetings and they took the form of one-way interrogations- "Any bleeding?, any soreness? That's good, see you next time"

 I broached the subject again, trying to ascertain whether the Urologist's recommendations had been followed only to get the following response.

   "Well, urologists do what they do, and radiologists do what they do"   I took that to be a no.

 Shortly I am to see an oncologist (the same one). As the Urologist didn't have sight of the imaging or the scan results (and thus wasting a consultation), and just (by default) a faxed report of the scan for the next consultation, I was keen on ensuring that on the next appointment, the onco would have the scan imaging  available to him by  accessing it in advance from UCLH

So I phoned the man's secretary who said, "Oh he probably won't need it for this consultation, but maybe later"

I would have thought the "He might" might have been a more prudent approach than "probably not"

Picking up on my unease at that, she sort of relented but that may have been in order to humour me.

So we will have to wait and see.

 Dave

Not "Why Me?" but "Why Not Me"?
User
Posted 10 Aug 2015 at 10:38
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 Aug 2015 at 18:12

Hi Roy,

Keep chasing, like you said its your life.

 

Barry

User
Posted 10 Aug 2015 at 23:19

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 Aug 2015 at 09:06
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 Aug 2015 at 01:48

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 21 Aug 2015 at 23:29  | Reason: Not specified

Barry
User
Posted 19 Aug 2015 at 07:13

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 Aug 2015 at 20:28
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 Aug 2015 at 15:41

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 Aug 2015 at 23:31

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 Sep 2015 at 17:49
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

Edited by member 17 Sep 2015 at 18:00  | Reason: Not specified

 
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