Going private for treatment after recurrence ?

User

Posted 29 Sep 2024 at 14:16

First post, my profile bio contains full details for my case.

In short I'm 61, and now 2 years after curative RT & HT for stage 3b N1 M0 PC, and facing a sudden uplift in PSA which meets the criteria for BCR, plus I have symptoms suggestive of a metastasis in my left ribs. I've been seeing a physio for six weeks for a painful shoulder, then last week my PSA jumped from 0.74 six months prior to 2.57. You can see my concern..

To cut a long story short and understating my feelings, my care by the NHS could have been better. So in the second time around so to speak I feel obliged to look at all options. I'm not a wealthy man, but given the stakes I'm considering self-funding the private option. I just drew a private pension lump sum, for which I had other plans, but what price to put on health ?

Hoping for the best case maybe I have a met or two or three which can be zapped with SABR or similar. My impression is that in a recurrence scenario, treatment options get a lot more complex and down to the individual case, and approach of the onco team which can vary depending on available expertise and resources. My hope would be the private route would give me as a patient a better potential outcome through access to a wider range of options. The first hurdle of course is to get the best possible scan following my BCR, but PSMA PET is apparently NOT available to me on the NHS where I am. I'm considering Christie HCA, Genysiscare, Marsden.

I would welcome any words of encouragement and support, wisdom or advice from those that have gone down this path, or who've considered it. An indication of costs would be good but I appreciate these will vary widely. Any drawbacks ? eg. did I hear that once treated privately the NHS will disown you ?

Andy

User

Posted 30 Sep 2024 at 08:47

In England, you have the right to be referred to any NHS England hospital which is willing to accept you. It's crazy that hospitals don't suggest this when they can't offer you the current standard of care, but I often see they don't do this. If you are at the stage of new recurrence after radiotherapy (radical or salvage) which might still be curable, you really need to be at a hospital which has PSMA PET scanning on-site and SABR on site. If you aren't, I would look to get a referral.

One problem here is some hospitals have so much load from their own catchment area that they've had to close out-of-area admissions for some treatments (Royal Marsden and Southampton are two that did this relatively recently for some specific prostate treatments, but that might not necessarily be the case just at the moment).

You shouldn't have to go privately, of course, but you might get more timely treatment. I thought a private PSMA PET scan was around £2,500, but I'm sure you can pay more. I don't know where you are in the country, so it's difficult to suggest treatment centres.

User

Posted 30 Sep 2024 at 10:00

Thankyou so much guys for your replies, they mean a lot. I'm single and have gone through all this just with support from friends. Consider yourselves 'virtually' hugged !

The advice all seems very sound, I can pay for a PSMA scan if I need to, followed by a private consultation which for me would give me the comfort of feeling I had the best advice unencumbered by NHS contraints and policies. After that though I suspect private treatment will not be affordable to me.

I suppose I'm hoping it gets diagnosed and treated as oligometastatic. I'm not sure though that all NHS sites even do this ? There's a guideline I believe, but that doesn't always count for much.

My primary treatment was at the Christie, as an out-of-area patient, I rang my previous CNS there last week, he said they should take me back on. However he also said they wouldn't offer PSMA PET ? I was suprised.

How do I even find an NHS place which does PSMA-PET/SABR ? It seems a total lottery. Maybe a private consult ASAP will help me with this.

Regarding treatment of this apparent disease spread, presumably the sooner I can get the scans done, the sooner I will be offered some HT treatment started to stop it going further ?

I believe Bicalutamide is deprecated now for longterm HT, but I'd be interested to hear any views on the pros and cons of what HT's they might offer. Presumably ultimately that's still my choice.

User

Posted 30 Sep 2024 at 11:10

Anywhere that can't do PSMA PET scan can't treat you with salvage SABR because they won't be able to find where the cancer is. I'm rather surprised the Christie can't because I thought they were a main treatment centre, but I don't know what treatments they offer.

If you were nearer London, I would suggest Mount Vernon Cancer Centre (who were doing this on the NHS long before it became a standard treatment, and were the first hospital to have Cyberknife in the UK, and the first to do PSMA pet scans on the NHS at the Paul Strickland Scanner Centre). I'm pretty sure UCLH would do this too. I know someone who had this done in Birmingham, Queen Elizabeth Hospital I would guess.

People up north will need to speak for where this sort of treatment is available up there. It might be worth asking the PCUK nurses if they know.

Edited by member 30 Sep 2024 at 11:15 | Reason: Not specified

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User

Posted 29 Sep 2024 at 21:17

Andy, I had surgery, then salvage RT to the prostate bed followed by SABR treatment to a pelvic lymph node. Following a further rise in my PSA and limitations on what the NHS will treat, I switched to the private sector. Fortunately we have medical insurance and my insurance company has deep pockets.

I see the same consultant privately as I saw under the NHS. I Was told I could not to and fro between the NHS and private sector. I have never been discharged from the NHS and I am having other urology issues investigated by the NHS urology department. At some point the access to private insurance may stop before I die.

It is said that there are three levels of charges by the private sector.

1, what the private sector charge the NHS for treatment of NHS patients.

2, what the private sector charge self funding patients, presumably like you are proposing.

3, what the private sector charge insurance companies who provide cover to patients.

My PSMA tests at the Oxford Genesis centre cost just over £4k. An appointment with the consultant is around £200-250. I was told the cost of SABR treatment was around £12k per site. In reality the cost to treat the single tumor was around £28k, they had to reconfigure the program. There was also a planing scan. I can't access the exact figure at the moment but I seem to recall the cost of the investigation and treatment was just over £36k.

I am told self funding costs are lower than insurance company costs.

The advantages are probably the speed at which you get treated, I did have to do a near 200 mile round trip for the PSMA scan. It was thought I may have to have the 5 SABR sessions a 100 miles from home but it turned out I could have them done at a local centre 10 miles away.

You do get more time with the consultant along with free tea and biscuits.

Not sure how it works with.HT drugs, I only had Bicalutamide for six months which my GP reluctantly prescribed and was only about £40 for six months worth of tablets.

Hope this helps.

Thanks Chris

User

Posted 30 Sep 2024 at 08:09

Hello Andy.

From what I've heard on here there seems to be little difference in private and NHS treatment. Apart from shorter waiting periods, getting results quicker, longer consultations, more tea and biscuits and private rooms.

I've heard horror stories and incredible success stories from both.

I'm lucky enough to be able to self fund treatment, if I wished. However, so far, I have not even had the need to consider it. I can see why people with insurance cover take the private option, effectively they have paid for it.

There maybe drastic times ahead when I'll consider paying but even then I doubt I would.

Best of luck with whatever you decide.

User

Posted 30 Sep 2024 at 08:11

I can't comprehend why they won't allow a PSMA PET scan to restage you, plenty of NHS guys on here have had them at all stages of recurrence.

Having said that the PSMA PET is the easiest to sort out privately, I had mine done a short walk from Euston Station, I was referred by the NHS oncologist who I was seeing privately at the time.

So I would start with a private consultation and see where that leads you, if you make sure the consultant also works for the NHS all the better.

I have used the Royal Marsden for private 2nd opinions twice. They are about £400 but you get advice from leading specialists in prostate cancer (not just a geral oncologist)
https://www.royalmarsden.nhs.uk/private-care/second-opinion

Edited by member 30 Sep 2024 at 08:12 | Reason: Not specified

User

Posted 30 Sep 2024 at 08:47

User

Posted 30 Sep 2024 at 09:58

When it comes to SABR treatment for oligometastatic cancer there is a significant difference between what the NHS will do and what the private sector will do. This is why I changed to the private sector. Had I not had access to private health insurance, I would have either gone onto HT or possibly declined anymore treatment.

Thanks Chris

User

Posted 30 Sep 2024 at 10:00

Thankyou so much guys for your replies, they mean a lot. I'm single and have gone through all this just with support from friends. Consider yourselves 'virtually' hugged !

I suppose I'm hoping it gets diagnosed and treated as oligometastatic. I'm not sure though that all NHS sites even do this ? There's a guideline I believe, but that doesn't always count for much.

How do I even find an NHS place which does PSMA-PET/SABR ? It seems a total lottery. Maybe a private consult ASAP will help me with this.

Regarding treatment of this apparent disease spread, presumably the sooner I can get the scans done, the sooner I will be offered some HT treatment started to stop it going further ?

I believe Bicalutamide is deprecated now for longterm HT, but I'd be interested to hear any views on the pros and cons of what HT's they might offer. Presumably ultimately that's still my choice.

User

Posted 30 Sep 2024 at 11:10

People up north will need to speak for where this sort of treatment is available up there. It might be worth asking the PCUK nurses if they know.

Edited by member 30 Sep 2024 at 11:15 | Reason: Not specified

User

Posted 30 Sep 2024 at 11:14

Bicalutamide was never used for a long time - it tends to stop working.

It was used for up to 6 months, and more recently, has been used for up to 2 years at some hospitals.

HT isn't always used with SABR.

User

Posted 01 Oct 2024 at 10:46

Thanks again all. I've managed to establish that my local NHS trust have to refer folks to Royal Liverpool for PSMA PET-CT scans, and I've spoken their waiting list person who advised there's currently an 8-week waiting list.

So in the circumstance I've accepted my consultants offer locally of regular bone and PET-CT scans, which I'm hoping they'll be able to do in a couple of weeks.

I confess I'm in a bit of a panic about it, as I can actually feel the odd bit of discomfort now from a R groin lymph node.

My best hope now is that the scans show spread sufficiently limited to be treated as oligometastatic. I could still pursue a PSMA PET-CT privately in the interim but that could prove to be a waste of money if the spread is beyond that.

User

Posted 01 Oct 2024 at 10:51

Also, I had a good encounter yesterday with my physiotherapist, it seems quite possible the shoulder and left arm pain I was experiencing are due to a cervical vertebrae problem, not a bone met in that area as I had feared.

I also saw my GP for the first time since this all kicked off again, he was reassuring and I've got meds now to manage the shoulder pain and help me sleep better.

Edited by member 01 Oct 2024 at 10:52 | Reason: Not specified

User

Posted 07 Oct 2024 at 18:00

Well.. the latest on my predicament is not good news. My shoulder pain has developed a bit and I now have some pain across the left ribs when coughing. Last Tuesday my pelvic lymph nodes suddenly almost exploded, I could see a bulge along both L&R groin and there was a lot of discomfort, they've reduced a lot by now but its still uncomfortable to walk about. My weight has dropped 2kg since July and my appetite is poor. Finally I have new lower back pain and my previous sciatica has worsened noticably. I'm concerned of the risk of MSCC. At times I've felt quite poorly and tired, but this possibly might be the various pain meds I've been using I suppose. I've told the CNS's about much of the above but they basically don't want to know.

Frankly I suspect my abdomen is now full of cancer cells floating about, and I might have mets in my spine too. Would a normal CT-with-contrast show loose cancer cell inside the LN's ? The CT I had on Saturday will hopefull show the LN enlargement at least.

I did get referred by the urology consultant for CT and Bone scans. I'd queried with him about PSMA-PET-CT, but just heard back from a CNS today, that he'd raised the issue at the last MDT, and he was advised by the cancer team that PSMA-PET-CT 'is not justified' in my case.

Pff ! Thanks for nothing. I'm really thinking I need to sack the lot and go elsewhere. It really is a shocker how poor the NHS can be.

Edit. Hmpff, thinking about my situation, TBH I've realised it's a moot issue really now anyway, the CT and bone scans are likely to show there's no other course of treatment for me now than back on the HT with maybe a bit of palliative RT here and there, then enzalutamide added down the line when needed, then..

Edited by member 07 Oct 2024 at 18:25 | Reason: Not specified

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