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

Notification

Error
<12

Has anyone used SpaceOAR gel?

User
Posted 17 Nov 2019 at 20:05

I was diagnosed with PC in Feb 2019 with a Gleason score of 3+4 and 4+3 so 7.  My understanding is that this is one above monitor only.  My London-based specialist was quite visibly and verbally annoyed when I declined the scalpel.  This hospital was listed as one of the world’s top 100 in The Times recently.

I progressed with Prostat injections, but part way through became aware of SpaceOAR and the benefits described in the NICE report.  My specialist agreed he would seek to have the procedure in my situation but it was not available at this London teaching hospital.  I have now had my 6th Prostat injection, which should be the last before RT, but I am still awaiting referral to a different London hospital for consideration of the hydrogel under NHS.

Given the benefits reported by NICE and the comments here (thank you), I am very upset that a so-called ‘top 100 world hospital’ has senior clinicians that are so dismissive of SpaceOAR.  Surgeons like using the scalpel!

Hopefully, I will get a new referral soon as the first hospital has now ‘taken me off the system’.  My advice gents (and ladies carers) is be firm and insist on the best treatment available.

Good luck and best wishes.

 

User
Posted 17 Nov 2019 at 20:14
Surgery does tend to be the preferred option for younger men with clearly contained prostate cancer, due to the long-term increased (although small) risk of secondary cancers that can result from RT.

There aren't many places in the UK who currently do the SpaceOAR treatment. As you may have read in this thread, although I had my treatment privately and my insurance company agreed to fund the procedure, I was unable to find anywhere in the NW of England to have it done.

Very best wishes for your treatment,

Chris

User
Posted 17 Nov 2019 at 21:07

I think things may have changed in recent months.

My hospital, Mount Vernon, had been doing SpaceOAR privately when I started my treatment 4 months ago. The NHS gave them 30 or 60 (I forget) SpaceOAR's to try out on the NHS. The NHS had some hundreds from the manufacturer to try out, and distributed them to the key prostate oncology centres and Mount Vernon used several of theirs with HDR brachytherapy (I was considered, but unsuitable for other reasons).

I haven't followed this since then, but these free ones were used to get many more oncologists trained up on using it, ready for NHS roll-out.

User
Posted 17 Nov 2019 at 21:49
But it still isn't widely available on the NHS and some of the centres of excellence offered it but then withdrew from the programme due to low uptake.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Nov 2019 at 10:30

I'll try to remember to ask what the current state is at the Mount Vernon support group meeting on Wednesday.

User
Posted 20 Jan 2020 at 21:59

I was diagnosed on the NHS in September 2019, Gleason 9, so aggressive. Fortunately my wife has Aviva Private Health Insurance through her work which covers me too. My oncologist in Glasgow arranged for me to have a PSMA scan done at the Harley St Clinic, basically an MRI scan with a special radioactive tracer for high imagery to double check cancer has not spread outside the prostate. It had not fortunately. I mentioned at the next appointment that I had read about SpaceOAR and it turned out that he is leading the cause to get it approved on the NHS in Scotland and said he would arrange for this to be done again by the Harley Street Group. I would be the first person he had arranged this for. My insurance company authorised the PSMA scan and the spacer and have been excellent. I had the fiducial markers and SpaceOAR done at the same time under general anaesthetic at the Princess Grace Hospital in London on Tuesday 14th Jan 2020, it all went to plan and I was discharged that afternoon. No pain, bruising or discomfort, I don’t even know it is there and went for a couple of pints that night! My RT planning day is this Thursday and I start 20 sessions of RT on 10th February at the Beatson Cancer Centre in Glasgow. I will update here how it goes and what the side affects are like. I am hoping the spacer does its job well!  Getting there, just counting down the days now to 9th March when the RT ends. Oh, and I have been on hormones, bicalutamide, since 10th October and will remain on it for two years because of the Gleason score of 9.

Good luck to all! 

Edited by member 20 Jan 2020 at 22:01  | Reason: Not specified

User
Posted 20 Jan 2020 at 22:10
Best of luck with your treatment, Bryan. I finished my RT 10 months ago and found it relatively plain sailing.

Best wishes,

Chris

User
Posted 20 Jan 2020 at 22:20
Thanks Chris, good to hear! Weird thing this disease, you don’t feel ill but are getting all this stuff done to you! Onwards and upwards, will be behind me soon! Cheers
User
Posted 21 Jan 2020 at 07:57

Hi Bryan, best of luck with your RT. Like Chris, I found my RT relatively plain sailing. I finished 9 months ago and came off the Bical about a month later. Like you, I didn’t feel unwell but was having lots done to me! All I can say is I feel even better now. 

User
Posted 21 Jan 2020 at 08:09

Thanks Arthur, good to hear the RT hasn’t been the ordeal you read it can be. With the spacer in as well I hope I have a fairly easy ride too. Was lying in bed last night and calculating it was 3 weeks yesterday that my RT begins and 7 weeks yesterday it will be finished. Can’t wait! 

User
Posted 06 Feb 2020 at 15:01

I'm encouraged by what you have said - having a bit of difficulty getting a hospital to do the Gold Markers and SpaceOAR under GA so may have to go to London - and continue with my RT in Basingstoke.  I haven't got medical insurance so I suppose it will cost a few thousand ! Seeing my Onco next week so will see what she says ! All the best to you. R.

User
Posted 06 Feb 2020 at 15:22
Hi Russell,

My SpaceOAR was done (privately) under GA at Wycombe General NHS hospital. Don’t know if that helps you at all.

User
Posted 06 Feb 2020 at 16:34
To be honest, it's not something I'd spend my own money on. The modern EBRT machine deliver a very targeted radiation dose, and I had minimal bowel problems during (or after) my RT.

Cheers,

Chris

User
Posted 06 Feb 2020 at 16:52

Its not just to prevent the immediate side affects it’s also there to protect the bowel from the potential long term damage from radiotherapy which can occurs years after the treatment.
Will let you know how the immediate side affects go, first RT this Monday coming. I can start my countdown from 20 - 0 then. Cheers

Edited by member 06 Feb 2020 at 17:16  | Reason: Additional info

User
Posted 05 Apr 2020 at 16:01
Almost 1 year, not quite, since finishing RT. Latest follow up results are PSA 0.14, down from 0.21 in December last year. No other issues to report except the ED hasn’t gone away, at least not without chemical help. The biggest challenge right now is staying motivated to do some sort of exercise since the gym is closed thanks to COVID-19. A minor inconvenience really. Stay safe everyone!
User
Posted 05 Jun 2020 at 08:43

Originally Posted by: Online Community Member
To be honest, it's not something I'd spend my own money on. The modern EBRT machine deliver a very targeted radiation dose, and I had minimal bowel problems during (or after) my RT.

Cheers,

Chris

I agree Chris, & SpaceOre has the additional risk, of another General Anasthetic - I had my RT treatment at Addenbrooks, Cambridge & with similar side effects to yourself. I cannot speak highly enough of my treatment.
In my case, I had some Calcium in my Prostate, which was used partially as a guide - no need for gold seeds, thankfully 😎

User
Posted 19 Dec 2020 at 11:33

Had my first face-to-face follow up of the year with my oncologist on 24th Nov 2020. Been a bit busy with other “life” stuff since then, so hadn’t got around to posting. Which is probably a good sign in itself. This time last year I would have straight on the forum after every little thing. But a little over two years since first meeting said onco life has assumed a sort of normality in terms of PCa; albeit with an overlay of lockdowns, tiers, hand hygiene, face masks, etc. I consider myself very “lucky” now that I went through my treatment at the beginning of 2019, the thought of all those extra trips and encounters in the same months of 2020 with all the unknowns of the COVID-19 situation is not something I would wish to have to deal with, but I know I would have got through it somehow. As I am sure anyone facing the same situation as I did now will. 


In a new “first”, I found myself feeling really faint after the blood draw for the PSA & Testosterone was done. How many times have I had blood drawn over the last couple of years? I’ve lost count! Never had a problem before, but this time the phlebotomist had to recline the chair and give me a drink of water before I felt normal again and was able to leave. Not sure if I was dehydrated or stressed by other stuff going on (we are currently moving house... to Ireland) or both, I just hope it’s not going to become the norm for me.

Anyway, the all important results were good; PSA 0.15, so back down very slightly from 4 months previous and Testosterone level is also up again, backed up by...

The ED situation has also improved, the little fella is slow to rise, but he gets there on his own with no chemical assistance from time to time now, even standing proudly to attention in the small hours of the morning now and again. 

So as the onco said, things are generally “on the up” 😂

 

Edited by member 19 Dec 2020 at 11:34  | Reason: Nothing important 🙄

User
Posted 09 May 2021 at 11:00

Coming up to 2 years since I finished treatment. Had another telephone follow up with the onco on 29th April. Since I moved to Ireland at the end of last year I had to get the blood tests arranged at my new local GP surgery. The lab results arrived the morning after the blood draw - no fainting this time, made sure I was well hydrated - and the printed results were handed straight to me... so I scanned them and emailed them to the onco, via his secretary of course. Which meant, happily he didn’t really have anything to tell me since I already knew the numbers: PSA 0.16 and testosterone 12.14.
Obviously this was a different lab since I’m in a new area, so the tiny differences from the previous results five months ago are as good as no change really.
I’m getting used to the fact that I have an almost constantly changing range of minor sensations “downstairs”.

I suppose I really need to find an onco over here in Ireland to take over from my saviour back in Bucks.

Stay safe everyone!

Edited by member 09 May 2021 at 11:01  | Reason: Not specified

User
Posted 07 Oct 2021 at 13:53
Latest PSA as of 27/9/2021 is 0.13

No testosterone number as the GP wasn't convinced of the need.

Expecting a referral to a suitable local specialist here in Ireland for follow up in due course, but frankly no rush as I am generally well and not on any medication.

GP surgery in the UK have not responded to any requests for my records to be sent over. When I phoned them back in March you would have thought that nobody had ever moved from the UK to Ireland before. Good job I have copies of all the clinic letters etc. and a more or less functioning memory!

User
Posted 07 Oct 2021 at 14:22
Good to hear you are doing well Arthur! I finished my RT 2 weeks before first lockdown in March 2020 and stopped taking Bicalutamide last month on 12th September. My last 4 PSA tests have been undetectable so the next one is due in January 2022 and we will see what effect ending the hormone tabs has. As I was diagnosed Gleason 9, and got the RT done and dusted before Covid, I like you, feel quite ‘lucky’, although even after being double jabbed, I contracted Covid last month. Fairly mild symptoms but boy do I get tired every afternoon now! Now thinking about retirement in the next 2 - 3 years. I’m 61 and have worked since I was 16, so think I’m about ready to give it up. All the best - onwards and upwards!
User
Posted 17 Oct 2021 at 19:06
So, Space ore - is it a good thing, or a waste of quite a lot of money?
User
Posted 17 Oct 2021 at 20:11
Depends on whether your cancer is at the front of your prostate where the SpaceOar could stop the radiotherapy from reaching where it is needed. For everyone else, research suggests that it significantly reduces the risk of bowel damage although I note that our regional cancer centre has withdrawn from offering it - having done it as part if the NHS initiatives programme, they didn't think it was special enough to warrant the cost.

If you are suitable, you may be able to get it on the NHS

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

User
Posted 17 Oct 2021 at 21:17

I would suggest that SpaceOar may not be a great idea. I say this based on advice from my oncologist,  who had something to do with its development. His advice was not to use it and in addition, that there could be complications with the device failing or not being inserted in exactly the right place. Essentially, you're balancing up the risks associated with the SpaceOar against the possible gains.

This advice was specific to my case and might not apply to others.

One of the issues for protection of the bowel with RT can be making sure your bladder is full enough when you receive the treatment, if your situation requires a full bladder for RT. I found it difficult to get right every time but it's very important. It's equally important that the team who give radiotherapy should not give you RT without being certain that your bladder is full enough.

Edited by member 18 Oct 2021 at 02:17  | Reason: Not specified

User
Posted 17 Oct 2021 at 21:48
Not necessarily correct although that may have been good advice in your particular case. Whether a man should have a full or partially full bladder depends on his own internal plumbing plus whether the oncologist needs to get the bottom of the bladder into the treatment field. Fullness of the bladder doesn’t affect the bowel; reducing impact on the bowel is helped by a) the bowel being empty of faeces and gas and b) the cancer not being at the front of the prostate.

Suggest you amend your post; it is against the site rules to name your medics.

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

User
Posted 17 Oct 2021 at 23:47

Originally Posted by: Online Community Member
Fullness of the bladder doesn’t affect the bowel

I could be wrong here and it might also depend on the type of radiotherapy but I was told by several radiologists, during treatment, that the full bladder was protection for the bowel.

 

ps Lyn, thanks for suggesting corrections.

Edited by member 17 Oct 2021 at 23:51  | Reason: Not specified

User
Posted 18 Oct 2021 at 00:31
Apologies, I think it is just what we each mean by 'bowel' - probably clearer to refer to the small intestine, large intestine or colon and the rectum. SpaceOar sits between the prostate and the rectum, rather than the prostate and the small intestine - a full bladder doesn't protect the colon or rectum.

A full bladder can lift the small intestine up out of the area, which protects it, but the main reason for a full bladder is that it ensures consistent position of the prostate - it also lifts the bladder out of zone, reducing bladder side effects. Whether the bladder needs to be full or partially full, the importance of it being consistent for each fraction is that it holds the prostate in exactly the same position day after day. My husband didn't need a full bladder - he was just asked to drink water 10 minutes before the session because they needed to get the bottom of his bladder into the RT field as that was where the rogue cancer cells had spread to.

In the UK, we are seeing some hospitals opting for empty bladder instead - again, to ensure consistency for each fraction.

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

User
Posted 18 Oct 2021 at 02:24

Thanks for the extra data. I'll see if I can get something more specific from the people who treated me. At the time I just followed the advice and looked forward to the whole thing being over but I've read much of what you've said here and elsewhere and it's clearly very well informed.

 

"Location" where I was concerned used gold seeds plus three small tatts, one on each hip and one centrally above the prostate. On each treatment I was initially put in position using the tatts aligned by laser with re-positioning by the nurses. After that a preliminary scan was used to bring locate the prostate [plus affected gland] to a specific position with accuracy of closer than a millimetre. The "bed" was shifted mechanically in small increments in any direction as required, by remote control.  The basis for "location" was that each day would have different settings.

I have no idea how this ties in with the full bladder business but it looks as though there could be quite different approaches to treatment in different countries.

The LINAC waiting room was occupied by many of us desperately attempting to maintain a full bladder. If the bladder wasn't considered full enough we were ejected, given some water to drink and required to wait for 30 minutes or so. If there was any sort of delay [quite common] things got difficult :-)

 

Edited again 19th Oct.

 

Jules

Edited by member 19 Oct 2021 at 05:44  | Reason: Not specified

User
Posted 18 Oct 2021 at 10:02
The problem is there is no “control group”; ideally there would be another identical me with the same tumour in the same place at the same stage, they would have the same treatment but without SpaceOAR (OAR = Organ At Risk, in this case the Rectum). And then we could compare results. But we can’t. All we know is I had a 15mm gap between my “Organ At Risk” and my tumour, created by the SpaceOAR, where the two organs would otherwise have been in contact. I had to have a full bladder and empty rectum for all 37 fractions.

Despite my best efforts, on 3 or 4 occasions this was found not to be the condition upon being scanned on the bed, necessitating the emptying of one whilst retaining the contents of the other.

I had no idea if I could accomplish this the first time it happened. The RADS assumed I wouldn’t be able to and upon my return from the toilet had set up for another patient in a different configuration! They were as amazed as I was, quickly reset everything, scanned me again to confirm and then the days dose of rays were delivered!

I had no complications at all.

User
Posted 07 Nov 2021 at 07:30
Hi guys, I just had a SpaceOar installed here in Hong Kong. This was recommened to me by my oncologist as I'm about to start my SBRT course of treatment. He said that without it, there is a 5% chance of rectal damage, with the Spaceoar it is less than 1%. He definitely thinks it is worth doing, as complications of rectal damage can be quite severe (apparently). Anyway, will keep you posted as to how I get on with the SBRT - I will do planning in 10 days, treatment starts in 2 weeks..
User
Posted 07 Nov 2021 at 09:50

Welcome to the SpaceOAR “club” Jono! All being well your planning scan(s) will reveal just how much extra space has been created in that all important place, where as I understand it there normally is none or almost none. Did you have it done under general or local anaesthetic? I do hope your Onco is as happy with the “placement” as mine was, it really boosts the spirits to see a senior medic so cheerful at this stage. Wishing you all the best for the weeks to come. 

User
Posted 30 Nov 2021 at 14:15

Hi there - quick update, My Oncologist was very happy with the SpaceOar placement and even showed me a scan he had loaded onto his iPhone !. Procedure was done under light general anaesthetic and was pretty painless - much less unpleasant compated to the Biopsy as someone else stated earlier. 

 I've now down 3 out of 5 MRI Guided SBRT sessions here in Hong Kong. Biggest pain is the rectal ballon (fun - not !) and having exactly 100Ml of urine in my bladder otherwise you and in and out of the LINAC until they are completely happy with how much bladder, the balloon, etc. You can even pair up your phone to the machine and they give you a pair of headphones (presumably plastic) to listen to your music, etc during treatment. 

I was wondering where exactly my Oncologist was until I was in his office post-treatment and saw a big screen with an MRI cross-section of a patient on it (all in colour). He then got a phone call and gave the go-ahead for them to start the radiation plan, all from the comfort of his office.. I also got to take a look at the colour coded charts with my plan where I could see exactly which parts of my body were being radiated, how much radiation, etc. The big lesion I have on one side of my prostate was bright red, etc.

So far, have not really felt major side effects, just feeling a little óff' immediately afterwards, have played some tennis, gone for a cycle in the days when I am not being treated. Am now 7 weeks into ADT too so that could also be having a minor effect..

So I guess time will tell just how effective SBRT is. Just 5 sessions at least is fantastic at least. This particular MRI guided thingy seems quite space age although of course they still spend a good 5 minutes lining up my felt tip crosses (no tattoos here) before putting me into the microwave itself :) 

2 more sessions to go, hopefully all goes well. 

Edited by member 30 Nov 2021 at 14:19  | Reason: Not specified

User
Posted 30 Nov 2021 at 15:06
Great update Jono
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
Forum Jump  
<12
©2021 Prostate Cancer UK