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paying for next round of treatment?

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User
Posted 17 May 2019 at 10:56

Hi

We are new as husband was diagnosed in November 2018 with advanced prostate cancer that had spread to the pelvic region, possibly in the lymph nodes but not to the bones

Initial PSA was 296. But with HT and chemo (Docetaxel - currently had 5 out of 6 sessions) PSA now down to 8

We visited the oncologist this week and were told that radiotherapy was advised but that is wasn't funded by the NHS. We were told that a stampede trial was conducted and he results were published in October 2018 but that as of yet, the NHS have not approved the treatment approach. My husband was told that he was the ideal candidate and it could help prolong his life. we were then asked if we had private medical insurance ( which we don't as we retired last year and it ceased on our retirement). He then went on to ask 'how are your finances' as it will cost in the region of £10k!!

To say we were shocked and not expecting that conversation when going for a routine appointment, is an understatement.

I'm trying to get advice before we start paying for this treatment

We were basically told that he has to have this, so we feel that we have no choice as we obviously want to do all we can.

Looking for advice PLEASE as to where we go from here.....its distressing enough having to deal with the diagnosis and the effects of living with the disease, but this has come as a whack in the face and we don't know where to turn. we tried the Macmillan nurse but she just left a message saying she is on holiday so cant talk to us until next week and time is ticking away because the oncologist said we need to sign papers in early June after my husbands next chemo session.

Any help or advice would be most appreciated. Thanks

 

User
Posted 17 May 2019 at 18:39
You absolutely should not agree to pay for this. It might be that your oncologist is really, really behind the times or just confused, or that something has been lost between what they were saying and how it was interpreted.

Were you given contact details for a named nurse perhaps? Could you contact him/her to clarify? As stated above, IMRT is the standard radiotherapy in almost all areas of England and although it is true that NICE has not approved RT for incurable cancer, the trial is easy to access and plenty of oncos are offering it on the NHS so to be told that it isn’t available is ridiculous.

Even if it turns out that your CCG has told oncos that they cannot offer IMRT in advanced PCa cases, you would still be within your rights to ask for a second opinion and possible treatment in a neighbouring authority.

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

User
Posted 17 May 2019 at 10:56

Hi

We are new as husband was diagnosed in November 2018 with advanced prostate cancer that had spread to the pelvic region, possibly in the lymph nodes but not to the bones

Initial PSA was 296. But with HT and chemo (Docetaxel - currently had 5 out of 6 sessions) PSA now down to 8

We visited the oncologist this week and were told that radiotherapy was advised but that is wasn't funded by the NHS. We were told that a stampede trial was conducted and he results were published in October 2018 but that as of yet, the NHS have not approved the treatment approach. My husband was told that he was the ideal candidate and it could help prolong his life. we were then asked if we had private medical insurance ( which we don't as we retired last year and it ceased on our retirement). He then went on to ask 'how are your finances' as it will cost in the region of £10k!!

To say we were shocked and not expecting that conversation when going for a routine appointment, is an understatement.

I'm trying to get advice before we start paying for this treatment

We were basically told that he has to have this, so we feel that we have no choice as we obviously want to do all we can.

Looking for advice PLEASE as to where we go from here.....its distressing enough having to deal with the diagnosis and the effects of living with the disease, but this has come as a whack in the face and we don't know where to turn. we tried the Macmillan nurse but she just left a message saying she is on holiday so cant talk to us until next week and time is ticking away because the oncologist said we need to sign papers in early June after my husbands next chemo session.

Any help or advice would be most appreciated. Thanks

 

User
Posted 18 May 2019 at 01:04
Hopefully, treatment could be within the trial because a man is usually more closely monitored.taking part in it and there is no charge. Otherwise, if CCG in the area are not forthcoming, you could contact NHS England. I can't remember the details but we had a member whose CCG refused a certain treatment and it was approved by NHS England who have an overarching role. So fully pursue it, before paying for treatment.
Barry
User
Posted 30 Nov 2019 at 21:49

No, it will be managed by an oncologist, for which you will need your GP to refer you to a hospital.

The oncologist will delegate the actual repeat prescriptions, injections, etc to the GP, and often the PSA testing too, but the oncologist remains responsible for the treatment.

User
Posted 30 Nov 2019 at 23:59
You have not provided any detail under you Bio so we don't know your diagnosis and whether the HT you are having is a follow up treatment for more advanced cancer or if it is a preliminary to having RT. Assuming you have had tests and scans along with a diagnosis, it would be sensible if you were able to fully appraise your new UK GP so it would be helpful for the GP to pass details on when making your referral.

I would suggest that you start your own thread as a courtesy to the originator of this one which would be better for all concerned.

Barry
User
Posted 01 Dec 2019 at 08:32

Just an update. After raising a complaint and requesting a review we were referred to another hospital 45 miles from home who said they would provide the treatment on NHS and and who helped us by challenging our oncologist on his view.

Finally after a lot of back and forth, it was agreed my husband could have his radiotherapy on the NHS more locally.

This was all stress that he didn't need and seemed so unnecessary. 

Both of us have worked 40 years and paid our national insurance, to then be told we had to pay for this treatment was just  shocking. Just goes to show it's worth putting up a fight 

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User
Posted 17 May 2019 at 13:50
The Oncologist is talking nonsense. The NHS has funded my hormone treatment, chemotherapy and 20 radiotherapy sessions. Whereabouts are you in the country? is there some sort of post code lottery going on here? I'm in the North west and not on any trials.

Contact the nurses on here, they may be able to point you in the right direction.

User
Posted 17 May 2019 at 14:10

It would be useful if you created a profile bio with details/dates of all the tests, scans, and treatments.

How do they know where the mets are?
What sort of scans has he had?

If you were to fork out a large sum on a specific treatment, I think you'd want to be reasonably sure they had identified the extent of the spread fairly accurately.

User
Posted 17 May 2019 at 14:18

Our husbands sound very similar. My husband was diagnosed in November and has just had chemo 5 of 6. His bone scan was clear but CT scan showed one pelvic lymph node.

His oncologist wants him to have radiotherapy afterwards and this will be on the NHS 

User
Posted 17 May 2019 at 15:03

My husband is on his 6th chemo session. He is also on hormone therapy and steroids.PSA 90, Gleason 9, spread to bones and lymph nodes. 

He begins a course of radiotherapy (20) in the next few weeks  - on the NHS. I’m not sure why you have been told that it is not available. 

User
Posted 17 May 2019 at 16:59

That is good to hear but sill confusing for us as we are being told not available on the NHS

The oncologist said its a specific radiotherapy IMRT - intensity modulated radiation therapy.  Is this the same type that your husband will be having?

Good luck with the treatment x

User
Posted 17 May 2019 at 17:00

Thanks for your reply. Do you know what type of radiotherapy that will be? we have been told IMRT is the one recommended and that isnt on the NHS currently.

Its all very confusing as we are now not sure what to think 

 

User
Posted 17 May 2019 at 17:06

We are in the midlands and were told that NHS doesn't fund it anywhere so we're quite confused now

The type of Radiotherapy recommended is IMRT which was in some clinical trial called STAMPEDE which apparently the NHS have not yet approved? 

Im thinking we might need to go and get a second opinion now

User
Posted 17 May 2019 at 17:19

My RT was EBRT (external beam radiotherapy) direct to the prostate.

User
Posted 17 May 2019 at 17:26

Originally Posted by: Online Community Member

Thanks for your reply. Do you know what type of radiotherapy that will be? we have been told IMRT is the one recommended and that isnt on the NHS currently.

Its all very confusing as we are now not sure what to think 

Intensity Modulated Radiotherapy (IMRT) is the standard External Beam Radiotherapy (EBRT) nowadays, and is what the NHS normally delivers.

What I'm wondering is if it's not available on the NHS for whatever your precise diagnosis is. I don't think you've given the precise details of your diagnosis.

User
Posted 17 May 2019 at 18:24

Originally Posted by: Online Community Member

Intensity Modulated Radiotherapy (IMRT) is the standard External Beam Radiotherapy (EBRT) nowadays, and is what the NHS normally delivers.

What I'm wondering is if it's not available on the NHS for whatever your precise diagnosis is. I don't think you've given the precise details of your diagnosis.

 

We are so confused now. I think we need more info before we think about paying for this. We need to know more info. The oncologist was very quick to say he would draw up papers etc which we thought seemed odd. We need to ask more questions by the sound of it

User
Posted 17 May 2019 at 18:39
You absolutely should not agree to pay for this. It might be that your oncologist is really, really behind the times or just confused, or that something has been lost between what they were saying and how it was interpreted.

Were you given contact details for a named nurse perhaps? Could you contact him/her to clarify? As stated above, IMRT is the standard radiotherapy in almost all areas of England and although it is true that NICE has not approved RT for incurable cancer, the trial is easy to access and plenty of oncos are offering it on the NHS so to be told that it isn’t available is ridiculous.

Even if it turns out that your CCG has told oncos that they cannot offer IMRT in advanced PCa cases, you would still be within your rights to ask for a second opinion and possible treatment in a neighbouring authority.

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

User
Posted 18 May 2019 at 01:04
Hopefully, treatment could be within the trial because a man is usually more closely monitored.taking part in it and there is no charge. Otherwise, if CCG in the area are not forthcoming, you could contact NHS England. I can't remember the details but we had a member whose CCG refused a certain treatment and it was approved by NHS England who have an overarching role. So fully pursue it, before paying for treatment.
Barry
User
Posted 30 Nov 2019 at 20:49

Hi, I'm not sure if this is the right forum , if not can you please advise.

I live outside the UK but will be moving there (near Loughborough) in January 2020 so that my sweetheart can be with her frail Mother. I started Hormone Therapy 4 months ago, 2 injections so far. I am a UK citizen.

I believe I must register with a GP to get the National Health Number. Once this happens would the GP be the person who manages my hormone treatment ?

Regards Robert

User
Posted 30 Nov 2019 at 21:49

No, it will be managed by an oncologist, for which you will need your GP to refer you to a hospital.

The oncologist will delegate the actual repeat prescriptions, injections, etc to the GP, and often the PSA testing too, but the oncologist remains responsible for the treatment.

User
Posted 30 Nov 2019 at 23:59
You have not provided any detail under you Bio so we don't know your diagnosis and whether the HT you are having is a follow up treatment for more advanced cancer or if it is a preliminary to having RT. Assuming you have had tests and scans along with a diagnosis, it would be sensible if you were able to fully appraise your new UK GP so it would be helpful for the GP to pass details on when making your referral.

I would suggest that you start your own thread as a courtesy to the originator of this one which would be better for all concerned.

Barry
User
Posted 01 Dec 2019 at 08:32

Just an update. After raising a complaint and requesting a review we were referred to another hospital 45 miles from home who said they would provide the treatment on NHS and and who helped us by challenging our oncologist on his view.

Finally after a lot of back and forth, it was agreed my husband could have his radiotherapy on the NHS more locally.

This was all stress that he didn't need and seemed so unnecessary. 

Both of us have worked 40 years and paid our national insurance, to then be told we had to pay for this treatment was just  shocking. Just goes to show it's worth putting up a fight 

User
Posted 01 Dec 2019 at 09:03

Hi Barry, thanks for the advice re starting a new thread. I have done and am awaiting Moderator approval.

I have also added my details under my profile

Regards Robert

User
Posted 01 Dec 2019 at 09:05

I'm so pleased for you re RT. I had mine a few years back and you don't need to run around on top of the stress of the treatment

User
Posted 01 Dec 2019 at 09:29

Runningaddict 

great news, and shows the value of the collective wisdom and experience of members of the forum.  Pity it has taken so long to resolve it though.

Ulsterman

 
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