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SpaceOAR NHS availibilty

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User
Posted 29 May 2019 at 21:20

Have just seen the Media news that spaceoar is going to be made available to 12 NHS hospitals.  I was with my Radiation/Oncologist team today for measure up/scan prior to starting radiation end of June.  My oncologist was clear that at his hospital would not be using/available spaceoar for at least 12/24 months.  He was not very forthcoming when i asked if i could change to another hospital that is using the gel procedure.  How do i find what hospitals are using spaceoar and if so can i change to a another area assuming they would take me.  It just seems i have a much better chance of avoiding collateral damage by using gel. Any thoughts on benefits of gel would be interesting. 

User
Posted 29 May 2019 at 21:20

Have just seen the Media news that spaceoar is going to be made available to 12 NHS hospitals.  I was with my Radiation/Oncologist team today for measure up/scan prior to starting radiation end of June.  My oncologist was clear that at his hospital would not be using/available spaceoar for at least 12/24 months.  He was not very forthcoming when i asked if i could change to another hospital that is using the gel procedure.  How do i find what hospitals are using spaceoar and if so can i change to a another area assuming they would take me.  It just seems i have a much better chance of avoiding collateral damage by using gel. Any thoughts on benefits of gel would be interesting. 

User
Posted 07 Jul 2020 at 11:41
Wow! I think this will be the last time I come here to take part. As someone who is sh***ing themselves over PC (yes I hear the don't worry/it's better than some other cancers/It's slow growing kinda Platitudes), but this is happening to me. The reason I would prefer surgery (but I can't have now) is due to the worry about possible rectal problems with RT. If a spacer between the prostate and rectum can reduce those possible side effects then I want to give it a go. I'm not worried/bothered about ED (that is likely going to happen with either option) though I would rather not have it obviously. This treatment has been around for a few years now, I've yet to see a bad report. Along with IGRT/IMRT RT that is available at my Hospital, I would hope there is a much better outlook for my treatment with the spacer. So I'll pay even though it makes a big dint in our retirement funds. My point was that it is said to be available on the NHS, yet it wasn't for me or most others currently.

I came here for support, not to be told that the options I want to take are dubious at best, cheers

and goodbye

User
Posted 09 Dec 2020 at 22:41

OK this really is my last post here! It seems every time I post (twice) I get trolled by a person. The last time I even had another person email me to back off because I had the nerve to answer her.  With regard to my post encouraging anyone going for RT to look into having a spaceOAR. Yes not everyone will be suitable, but as I said my Onc knew what my plans were (i.e coz we had discussed it and I'd even asked if i could get at my hospital).  So I think that anyone considering it would also discuss it with their Onc', not just tell them they'd had the op in expectation! I'm pretty sure the Onc' will tell them if the procedure would help them.

As said last time this would be my last post (though didn't actually delete my account) well i will this time, I will get the hell out of this place. Apologies to you guys, with PC and I hope everything goes the best it can for you. Please don't bother responding because my account will be deleted. Well done "Karen" who always knows best.

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User
Posted 30 May 2019 at 01:55

You might not want to wait that long - the innovation fund has done their bit and now the 15 locality science networks will decide which hospital gets the money I think. Then people will need to be trained, I assume. I can't see it being available on the NHS in the near future so you might need to talk to your doctors about the impact of delaying. You would also need to clarify whether you would even be suitable for SpaceOar - it will only be offered to men for whom the gel will not get in the way of areas that need zapping.

You could try contacting the science network for your area to ask whether they have plans / timescales in place yet?

http://atlas.ahsnnetwork.com/ 

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

User
Posted 30 May 2019 at 06:22

As I reported in my own thread on the subject a few months ago, my oncologist at the Clatterbridge Cancer Centre on the Wirral told me that they're planning to start trialling the procedure there fairly shortly. I can certainly see it becoming a standard part of RT prep for suitable patients in the next few years.

I made the personal decision not to delay my RT by trying to find somewhere to have the procedure carried out (although my insurers had agreed to fund it) after being unable to find somewhere it could be done in the NW of England. As things turned out, I had few side-effects during my RT (although late-onset effects are, of course, still an unknown quantity).

Best wishes,

Chris

Edited by member 30 May 2019 at 06:27  | Reason: Not specified

User
Posted 02 Jun 2019 at 09:30

anyone had experience of Genesis care radiation.  It seems to be a much finer approach to radiation with less chance of collateral damage. would welcome any thoughts.  

User
Posted 02 Jun 2019 at 12:13

Looks like it's just a private provider of radiation and other cancer services.

A common difference between NHS and private external beam RT (EBRT) is that NHS typically performs the X-ray imaging for accurate positioning the first 3 times and then once a week thereafter, on the assumption that the prostate doesn't move more than the 5mm overspill margin, whereas private providers image every time, and can have a smaller X-ray overspill margin and therefore less collateral damage. (Maybe thing like bowel contents are not such an issue in this case - I don't know.)

I did a tour of a private provider (different one than you mention) a week ago with the Reading Prostate Cancer Support group. They do about 5 EBRT sessions a day in their LINAC, so they have a lot more time to setup and do the imaging every time (and time to allow us in to see the facility).

User
Posted 02 Jun 2019 at 13:40
This just seems to be an explanation of the difference between IGRT and IMRT. Lots of hospitals do IGRT on the NHS - St James's in Leeds certainly does. Interestingly, St James's also offered SpaceOar for a while but have stopped due to lack of take-up; I am hoping that they will be one of the 12 hospitals named by the local networks.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Feb 2020 at 10:35

Originally Posted by: Online Community Member

Looks like it's just a private provider of radiation and other cancer services.

A common difference between NHS and private external beam RT (EBRT) is that NHS typically performs the X-ray imaging for accurate positioning the first 3 times and then once a week thereafter, on the assumption that the prostate doesn't move more than the 5mm overspill margin, whereas private providers image every time, and can have a smaller X-ray overspill margin and therefore less collateral damage. (Maybe thing like bowel contents are not such an issue in this case - I don't know.)

I did a tour of a private provider (different one than you mention) a week ago with the Reading Prostate Cancer Support group. They do about 5 EBRT sessions a day in their LINAC, so they have a lot more time to setup and do the imaging every time (and time to allow us in to see the facility).

I was treated at Addenbrooks, Cambridge - & on every one of my 20 fractions, an Xray scan was done first - it is built into the Therapy machine, you are usually moved very slightly after it, then you get the actual therapy following this.

User
Posted 29 Feb 2020 at 10:57

Bob,

I think all the main centres now do accurate positioning every time, certainly those using VMAT* (such as Varian RapidArc) LINACs with built-in cone beam CT scan (CBCT scan).

You either have a CBCT scan done every time and used to make minor positioning corrections, or you have fiducial markers inserted, and the CBCT equipment is instead used to take two X-rays at right angles to pick up the markers and do the alignment with those.

*VMAT LINACs treat during a continuous 360 degree sweep, as opposed to the previous generation which treat from a hand full of stationary positions, but not while they are moving.

User
Posted 29 Feb 2020 at 19:41
I WAS going to have gold seeds, injected - but they found I had Calcium in the Prostate, which act as a marker - & spared me one needle, in a place I was not looking forward too ;)
User
Posted 05 Mar 2020 at 09:57

I've had 3 estimates from private hospitals for SpaceOAR insertion. Basingstoke BMI £5000.59 - Southampton "Spire" £4400. (Another in Guildford c:£5400) A lot of money - but it is one's health & future - so I'm tempted. It is very difficult to find any reviews from the many men who have had this done - After effects, pain, effectiveness etc. Good Luck Gents. R.

User
Posted 07 Mar 2020 at 10:03

If I recall correctly, Mount Vernon was in the £3000-4000 range when I was asking a year ago. I didn't get into the detail, because they switched to say I could have it on the NHS trial for free if I was suitable for SpaceOAR, but for medical reasons (being high risk prostate cancer), it was later deemed not suitable for me.

User
Posted 03 Apr 2020 at 17:50

Does anyone know What nhs hospitals are offering this prior to Radiotherapy?

User
Posted 05 Jul 2020 at 12:50

I have bitten the bullet and opted to go for SpaceOAR via my local Hosp Spire it's going to cost £4525, ouch!

I had wanted to go the surgery route but a bleed on the brain, meant that the surgeon wasn't willing to risk it, as I would be inclined 25 degrees head down and blood would be going to my head. So I only really have the Radio Therapy (RT) option (which I didn't want to to do because of the complications that may/can occur especially with the rectum)

So having found out about the spacer I wanted to have that inserted before treatment. I had hoped that I could get it on the NHS but I couldn't find a NHS hospital, at least nearby (Leicestershire) that does it. A bit miffing because if the spacer works as it is claimed (In clinical trials, SpaceOAR has reduced side effects such as bleeding from the rectum, pain, discomfort, and changes in bowel habit by between 60 and 80%. Some recent studies have also shown an improvement in erectile function compared to patients who don't have SpaceOAR.) then I would be possibly saving the NHS from any remedial procedures needed to treat the possible side effects from RT. not to mention the benefit to the patient in terms of quality of life. I have also read that the NHS can provide this service in an article dated May 2019  https://www.england.nhs.uk/2019/05/nhs-funds-tech-to-protect-prostate-cancer-patients-during-radiation-treatment/ 

I wonder if it would be worth getting a petition going to help future PC sufferers opting for RT to have as an option throughout the NHS regardless of area? Perhaps this is something Prostatecanceruk.org could organise and advertise with all it's members and their relatives?

Edited by member 05 Jul 2020 at 12:53  | Reason: added "throughout the NHS regardless of area"

User
Posted 05 Jul 2020 at 13:15

NHS hospitals who have surgeons trained in the procedure get a small number each month. These will mainly be the main cancer centres, but there are some district general hospitals who now have that expertise too. They have to decide how to use them. They are most likely to be used on patients with existing bowl problems first.

Your price doesn't seem bad. It was around £3500 privately 18 months ago, then shot up to £6000 as more people became aware, but is probably dropping as more places do it, although I haven't done a price comparison in the last year.

I was going to pay to have it privately (when it was £3500), then my hospital said I could have it on the NHS as they'd been given a load to try out, then said as a high risk patient, they wouldn't recommend it, so I didn't have it in the end.

UCLH are running a trial of it on high risk patients, called ICEMAN.

Edited by member 05 Jul 2020 at 13:21  | Reason: Not specified

User
Posted 06 Jul 2020 at 07:56

Great you mentioned UCLH. I looked at this before I went down the surgical route. Guys Cancer Centre at London Bridge and Royal Marsden might be worth scoping out too maybe? 

TG

User
Posted 06 Jul 2020 at 08:32
I can't see much point in starting a petition - firstly because the point of the innovation fund is to make new treatments more widely available so that they can be further assessed for efficacy and cost effectiveness; it is up to individual CCGs / NHS trusts to decide whether to apply to their local hub. And secondly, maybe I am feeling a bit negative this morning but my guess is that COVID is going to break the bank and we will all find it harder to get critical care on the NHS in the future, let alone treatments that are non-critical.

The only source of data suggesting that SpaceOar reduces the risk of ED seems to be the manufacturer. I struggle to see how a spacer between the prostate & bowel can protect the nerve bundles covering the prostate; although their (non peer reviewed) stats are good, I would want to see whether there was any bias ... e.g., were the men selected for SpaceOar younger than the average RT patient, how old was the data used for the baseline / control group (and therefore, did those men have IGRT / IMRT or older, more scattergun RT), and was there a difference between the two groups re hormone treatment / libido suppression?

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

User
Posted 07 Jul 2020 at 11:41
Wow! I think this will be the last time I come here to take part. As someone who is sh***ing themselves over PC (yes I hear the don't worry/it's better than some other cancers/It's slow growing kinda Platitudes), but this is happening to me. The reason I would prefer surgery (but I can't have now) is due to the worry about possible rectal problems with RT. If a spacer between the prostate and rectum can reduce those possible side effects then I want to give it a go. I'm not worried/bothered about ED (that is likely going to happen with either option) though I would rather not have it obviously. This treatment has been around for a few years now, I've yet to see a bad report. Along with IGRT/IMRT RT that is available at my Hospital, I would hope there is a much better outlook for my treatment with the spacer. So I'll pay even though it makes a big dint in our retirement funds. My point was that it is said to be available on the NHS, yet it wasn't for me or most others currently.

I came here for support, not to be told that the options I want to take are dubious at best, cheers

and goodbye

User
Posted 07 Jul 2020 at 12:23
I am sorry if that was how it sounded; I am all for fighting for the best option you can get & that was what we did when my husband was diagnosed although we ended up having to self finance to do it. If he was having RT now, I would certainly want him to explore whether SpaceOar could be an option - the research data on reduction of bowel symptoms is unequivocal.

My comments were related only to whether there should be petitioning for it to be available free for all men on RT / brachy (I believe it would be wonderful and perhaps will happen eventually but is simply too expensive at the moment when in many areas of the country, they can't even offer proper scans yet) and whether SpaceOar can reduce the risk of ED.

Don't stop logging in - I wasn't saying your options are dubious; just that the capacity to make it available to all on the NHS is probably a long way in the future.

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

User
Posted 07 Dec 2020 at 19:23

Thanks to all who posted.  I am a 74 year old fit except for the prostate cancer and and getting ready for my radio therapy. I am interested in the SpaceOAR as I already have IBS and don't want to make it worse.  Has anybody had the spacer put in privately and then continued with the NHS radio therapy?  I live in the sticks and my local hospitals are not going to be geared up for the trial and I can't find hospitals that offer it.

Edited by member 07 Dec 2020 at 19:24  | Reason: Not specified

User
Posted 07 Dec 2020 at 23:38

Hi..    are you saying that the NHS have not offered this as I know that it is available for sure in the South Tees and Newcastle upon Tyne area.    Many of the Urologists work in the Nuffield Hospitals and this is something that is offered.    Reading about it I think its seems prudent to have this in place before any Radiotherapy

 
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