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User
Posted 26 Dec 2020 at 12:59

Hello. I would appreciate any information please.

My husband, Bob, was diagnosed this week with stage 4 prostate cancer. The story so far is as follows -

25 Nov    Visited doctor as Bob was in agony after feeling something 'go' in his pelvic region. Blood test revealed        

                   T PSA  21.44 and F PSA 2.85

1 Dec        MRI scan - revealed pathological fracture (pelvis) and PIRADS 4 and lots of other information which we 

                  didn't understand

7 Dec       Biopsy - Adenocarcinoma. Gleason Score 4 + 4

21 Dec     PET/CT scan - spread to bones in spine, pelvis, shoulder. Also lymph nodes in neck. Also showing in

                 both lungs, kidneys, liver, spleen.

23 Dec    Stage 4 prostate cancer diagnosed with recommendation for chemo and hormone therapy.

What I'm trying to find out is if this would be the procedure in England? We live in North Cyprus where, so far, the tests have cost us £3000. I hate saying this but here healthcare is a good earner for hospitals, and treatment is often recommended when it will not do any good.

Any advice, thoughts, experiences would be gratefully received, thank you.

Jenny

 

 

 

User
Posted 26 Dec 2020 at 12:59

Hello. I would appreciate any information please.

My husband, Bob, was diagnosed this week with stage 4 prostate cancer. The story so far is as follows -

25 Nov    Visited doctor as Bob was in agony after feeling something 'go' in his pelvic region. Blood test revealed        

                   T PSA  21.44 and F PSA 2.85

1 Dec        MRI scan - revealed pathological fracture (pelvis) and PIRADS 4 and lots of other information which we 

                  didn't understand

7 Dec       Biopsy - Adenocarcinoma. Gleason Score 4 + 4

21 Dec     PET/CT scan - spread to bones in spine, pelvis, shoulder. Also lymph nodes in neck. Also showing in

                 both lungs, kidneys, liver, spleen.

23 Dec    Stage 4 prostate cancer diagnosed with recommendation for chemo and hormone therapy.

What I'm trying to find out is if this would be the procedure in England? We live in North Cyprus where, so far, the tests have cost us £3000. I hate saying this but here healthcare is a good earner for hospitals, and treatment is often recommended when it will not do any good.

Any advice, thoughts, experiences would be gratefully received, thank you.

Jenny

 

 

 

User
Posted 26 Dec 2020 at 15:32

Jenny,

I'm sorry to see the two of you getting hit with this.

The treatment you describe is, I think, exactly what would be offered here for your diagnosis. It should slow the disease progression for a while.

During COVID-19, some patients have been offered Abiraterone or Enzalutamide instead of chemo because of a theoretical extra risk of COVID-19 infection while on chemo, but some centres have said having chemo while on hormone therapy doesn't seem to increase COVID-19 infection risk, and are sticking with chemo.

What should happen is the hormone therapy brings the PSA down, and then the chemo brings it down further, or helps to prolong the length of time it stays down on hormone therapy. If it starts going up again, they would then add Abiraterone or Enzalutamide as extra hormone therapy drugs, or do further chemo, to try and bring PSA under control again. (Abiraterone and Enzalutamide are notoriously expensive.) All these options (besides basic hormone therapy) will depend on liver function.

If cost is an issue, you could think about having bilateral orchiectomy (castration) instead of the lifelong basic hormone therapy, since that's a once-off cost, rather than ongoing lifelong hormone therapy, depending how much that costs. (Ball-park figure for hormone therapy using GnRH analogues is around £250/quarter in the UK, but it depends which drug they use. There's a trial running using Estradiol patches instead, which are significantly cheaper and fewer side effects, although may need more monitoring.) Orchiectomy wouldn't work to replace Abiraterone or Enzalutamide though, which might still be used later on.

The procedures you've already had would probably cost more than £3000 in the UK, if done privately, but somewhat less in some other parts of the world.

Wishing the two of you all the best in the circumstances.

 

User
Posted 26 Dec 2020 at 16:50
In the UK, the first chemotherapy for PCUK is usually 6 or 10 rounds of docetaxel (once every 3 weeks). There is another more expensive chemo which can be used if docetaxel works for a while and then fails - this is called cabazitaxel and is more expensive.

Early chemo helps about 50% of men so clarify with the doctors how many rounds they are recommending, how success is to be measured and whether you can stop after 3 or 5 sessions if it is obviously not working.

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

User
Posted 27 Dec 2020 at 04:19
The so-called ‘wonder drugs’ Abiraterone and Enzalutamide mentioned by Andy, cost between £11,000 to £12,000 a year to the NHS, which obviously buys in bulk. Elsewhere they’re probably more.

The orchietomy he referred to means literal castration, rather than chemical castration, as achieved by hormone therapy drugs, both of which starve the cancer of the testerosterone it needs.

We did have a chap from India here, whose family couldn’t afford ongoing HT, so he opted for the former.

No doubt, there will be a substantial charge for an orchietomy, whereas I watch vets on the telly perform the same simple procedure on various mammals for about a hundred quid!

Sorry you both find yourself in this situation, but best of luck.

Cheers, John.

User
Posted 28 Dec 2020 at 06:07

If he is British and emigrated / retired to Northern Cyprus a few years ago, I personally would not begrudge him NHS cancer treatment in Britain whatever the cost, compared to medical tourists from across the world, who come here to what they think is the International Health Service and cost the NHS millions!

Largely because hundreds of NHS bureaucrats on £150 grand a year plus, cannot be bothered to check on foreign patients’ eligibility for treatment or even chase-up bills once they have been discharged.

Hopefully we can, like Australia, have compulsory medical insurance for all visitors from countries with whom we do not have reciprocal medical arrangements, as of January 1st, Independence Day!

Cheers, John.

Edited by member 28 Dec 2020 at 06:08  | Reason: Not specified

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User
Posted 26 Dec 2020 at 15:16

Hi jenny, 

Sorry you are here. I would say all the tests so far and the treatment plan would be the same in England. Naturally in the uk this would have been funded by the NHS, but had you have gone private in the UK the cost of tests would have been several thousand, so I don't think they are overcharging you. 

The treatment for stage 4 cancer would be HT and probably chemo as well. List price for HT is about £300 every three months. Chemo I have no idea of the price.

Stage 4 cancer with spread in so many places is sadly not a good place to be. HT and chemo may be able to hold the progress back for months or even years, but not forever.

 

Dave

User
Posted 26 Dec 2020 at 15:32

Jenny,

I'm sorry to see the two of you getting hit with this.

The treatment you describe is, I think, exactly what would be offered here for your diagnosis. It should slow the disease progression for a while.

During COVID-19, some patients have been offered Abiraterone or Enzalutamide instead of chemo because of a theoretical extra risk of COVID-19 infection while on chemo, but some centres have said having chemo while on hormone therapy doesn't seem to increase COVID-19 infection risk, and are sticking with chemo.

What should happen is the hormone therapy brings the PSA down, and then the chemo brings it down further, or helps to prolong the length of time it stays down on hormone therapy. If it starts going up again, they would then add Abiraterone or Enzalutamide as extra hormone therapy drugs, or do further chemo, to try and bring PSA under control again. (Abiraterone and Enzalutamide are notoriously expensive.) All these options (besides basic hormone therapy) will depend on liver function.

If cost is an issue, you could think about having bilateral orchiectomy (castration) instead of the lifelong basic hormone therapy, since that's a once-off cost, rather than ongoing lifelong hormone therapy, depending how much that costs. (Ball-park figure for hormone therapy using GnRH analogues is around £250/quarter in the UK, but it depends which drug they use. There's a trial running using Estradiol patches instead, which are significantly cheaper and fewer side effects, although may need more monitoring.) Orchiectomy wouldn't work to replace Abiraterone or Enzalutamide though, which might still be used later on.

The procedures you've already had would probably cost more than £3000 in the UK, if done privately, but somewhat less in some other parts of the world.

Wishing the two of you all the best in the circumstances.

 

User
Posted 26 Dec 2020 at 15:33
Thank you Dave. We realised it can't be cured but didn't know if the chemo would help at all at this late stage. I've been begging him for about two years to go to a doctor because he can't pee properly but he buried his head in the sand!
User
Posted 26 Dec 2020 at 15:50

Jenny,

Chemo is recognised to extend life in this situation. I'm not expert in chemo, but I think it's something of the order of 9 months extra life expected as a result of chemo (hopefully someone will correct me if I'm wrong). There are no guarantees of course. Chemo can interfere with quality of life though, but I think most people regard that as a gamble worth taking, particularly if you have the chemo up front when you are most healthy to start with.

User
Posted 26 Dec 2020 at 16:50
In the UK, the first chemotherapy for PCUK is usually 6 or 10 rounds of docetaxel (once every 3 weeks). There is another more expensive chemo which can be used if docetaxel works for a while and then fails - this is called cabazitaxel and is more expensive.

Early chemo helps about 50% of men so clarify with the doctors how many rounds they are recommending, how success is to be measured and whether you can stop after 3 or 5 sessions if it is obviously not working.

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

User
Posted 26 Dec 2020 at 19:09

Looking at the NICE guidelines it looks like chemo will cost about £8000. I really don't know what I would do without the NHS. If someone said pay £20,000 and your cured for certain, I would say go ahead. If someone said pay £10,000 and you might live another year and then pay another £10,000 for a few more months and perhaps another £10,000 for a few months more, at some point I would be saying enough is enough. I guess that sort of dilemma is faced by people throughout the world. 

Dave

User
Posted 27 Dec 2020 at 04:19
The so-called ‘wonder drugs’ Abiraterone and Enzalutamide mentioned by Andy, cost between £11,000 to £12,000 a year to the NHS, which obviously buys in bulk. Elsewhere they’re probably more.

The orchietomy he referred to means literal castration, rather than chemical castration, as achieved by hormone therapy drugs, both of which starve the cancer of the testerosterone it needs.

We did have a chap from India here, whose family couldn’t afford ongoing HT, so he opted for the former.

No doubt, there will be a substantial charge for an orchietomy, whereas I watch vets on the telly perform the same simple procedure on various mammals for about a hundred quid!

Sorry you both find yourself in this situation, but best of luck.

Cheers, John.

User
Posted 27 Dec 2020 at 08:52
Are you British citizens, Jenny? If so, this might be worth returning to the UK for so you can get treatment on the NHS. Private cancer treatment can be awfully expensive.

Sorry that you find yourself in this situation.

Chris

User
Posted 27 Dec 2020 at 10:58

To be entitled to hospital treatment on the NHS, you need to be what's called "ordinarily resident" in the UK. It's not on the basis of being a British Citizen. There are some exceptions, such as for COVID-19, where more people are entitled.

NHS Entitlements

User
Posted 28 Dec 2020 at 06:07

If he is British and emigrated / retired to Northern Cyprus a few years ago, I personally would not begrudge him NHS cancer treatment in Britain whatever the cost, compared to medical tourists from across the world, who come here to what they think is the International Health Service and cost the NHS millions!

Largely because hundreds of NHS bureaucrats on £150 grand a year plus, cannot be bothered to check on foreign patients’ eligibility for treatment or even chase-up bills once they have been discharged.

Hopefully we can, like Australia, have compulsory medical insurance for all visitors from countries with whom we do not have reciprocal medical arrangements, as of January 1st, Independence Day!

Cheers, John.

Edited by member 28 Dec 2020 at 06:08  | Reason: Not specified

User
Posted 28 Dec 2020 at 07:14
Thank you John. Yes we did retire here three years ago to start a new life following the deaths of my two sons. The NHS guidelines state categorically that we must be normally resident in the UK to qualify for NHS treatment, regardless of the fact that we both worked and paid contributions all our lives.

As you say it does stick in the craw that health tourists get their treatment on the NHS and then don't pay their bills!

We have to pay up front in cash here before they do any tests or treatment. When Bob had his biopsy I thought I could pay by card, and when I didn't have the cash, the surgeon drove me to the bank to withdraw it (criticising women drivers all the way!).

Having said that, the actual treatment is very good.

User
Posted 28 Dec 2020 at 13:30
Too late for your husband now as he has an existing condition but where you retire abroad and are not normally covered by an effective health service, I think it's very important to get comprehensive health insurance. I have heard of a number of people who did not do so and then moved back to the UK to receive treatment under the NHS. I assume you would not wish to do this.
Barry
User
Posted 29 Dec 2020 at 01:07

Whatever the rights and wrongs of the system, I’m sure if you pitched up at a GP’s surgery in Britain (or went back to your old doctor) and registered as patients there, he would be put straight into the NHS cancer treatment programme with no questions asked.

Is it worth renting somewhere here, for say, a year?

Cheers, John.

 
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