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Query around metastatic advanced prostate cancer

User
Posted 19 Jan 2021 at 16:47

Hello,

i am new to all of this.  Could you tell me whether the above cancer is classed as incurable or terminal.  We are thinking of going on holiday sometime this year (I know!).  Going through the various travel insurance sites the question keeps coming up.  

We we are going to see how husband manages the various treatments before we make any firm plans but how is this cancer positioned.

Of course we could decide to just exclude cancer cover I guess.  Not something I would thought I would ever consider but hey ho.  

 

Thank you.

User
Posted 19 Jan 2021 at 19:53

Sorry Corrie, but advanced prostate cancer is classed as incurable.

User
Posted 19 Jan 2021 at 19:58
Terminal means you've been given a definite prognosis of "x months to live". Incurable simply means there's no cure. Incurable does not mean terminal.

Best wishes,

Chris

User
Posted 19 Jan 2021 at 20:14

Hi corrie, 

Sorry you are here. I am glad you have made the distinction between incurable and terminal: terminal is used to refer to a cancer which will most likely kill you within six months, some would go as far as kill you within a year. Incurable is not quite so bad, it means the cancer is unlikely to be stopped by any known treatment, unless you die from something else it will kill you, but not within six months, and for some people five, ten, fifteen years are possible.

The diagnosis of advanced prostate cancer and treatment with enzalutamide, are all consistent with this being an incurable cancer.

Your husband will be offered treatment which will work for months or years, the cancer will get used to it and then another treatment will be offered, the treatments become more aggressive and eventually none will work. It is very hard to know when this will be. We have had people on here for ten years or so after an incurable diagnosis.

I would definitely go on holiday, I would look at the insurance premiums, comparing including and excluding cancer. Prostate cancer does not suddenly change, at least not at this stage, so I don't think you will get caught out. If you do exclude prostate cancer, your insurers won't pay out for any medical emergency they could possibly link to the prostate so bladder, kidneys will all be excluded, they may even exclude broken bones by claiming the cancer may have spread to them. I think I would avoid the USA as treatment there is expensive, probably best stick to Europe. 

Dave

User
Posted 22 Jan 2021 at 19:54
Hi Dave, a few days and more questions if I may. We would really like to go to the States. We have airline tickets booked for USA in Sept. We could potentially change to another destination using the value of the tickets (they are Virgin Upper Class - we thought we would treat ourselves and now this diagnosis).

The insurance premium is not necessarily an issue but is it really worth paying say £1500 (I did do a quick google) for something that the insurers might try and wriggle out of.

Realistically we are going to see how husband deals with the treatment as the tickets can be used up until Dec 2022.

I am sorry I am trying to distract myself from all of this by doing what some might see as very mundane things.

Any companies you can suggest or what about a broker?

I am planning to use this forum if I may for some support. This is all horribly new and confusing to me.

User
Posted 22 Jan 2021 at 20:15

Hi Corrie

sorry you are joining the prostate cancer club... as a daughter I can confirm it affects the whole family.

I can’t offer any medical advice as such but my dad has had advanced prostate cancer the past 2.5 years, ok under hormone injections for 18 months, but sadly abiratone did not work so no treatment now. 

Sorry I cannot advise on medical insurance but I would just say, grab every chance , enjoy life, if you want to go on holiday and your husband feels well... do it now (or when we can due to Covid), don’t delay.

best wishes to you both

anne

xx

User
Posted 22 Jan 2021 at 21:23
Hi Anne,

Thank you for the quick response. He has advanced prostate cancer spread to lymph nodes and bones although his consultant has said his age is in his favour. I just don’t want to be a widow so young and we were going to do so many things. He looks normal. He has a CT scan next week to baseline him and then start on his treatment.

I am really really scared.

User
Posted 22 Jan 2021 at 21:31

Hi Corrie

I can’t blame you... cancer is a total **** ...

My dad has extensive spread to pelvic lymph nodes (he is 85 but super fit until cancer came calling!), he had some radiotherapy before Christmas and it made a huge difference to his current quality of life.

i think there are lots of options and treatments which can keep advanced prostate cancer under control for many many years.

best wishes to you both

  

User
Posted 22 Jan 2021 at 21:50
Anne, thank you. I am holding onto your words ‘many many years’.

I need to just steer in another direction I guess. My parents are still alive, I thought I was going to go through this sort of thing with them. It’s funny how life has a way of getting its own back when you think you have done it all your own way.

User
Posted 22 Jan 2021 at 21:55

If your husband is feeling well and healthy this year then go on your holiday and enjoy yourselves... none of us know what’s around the corner and most of the time things work out ok!

xx

User
Posted 23 Jan 2021 at 00:46

Hi corrie,

This thread discusses the issue. 

https://community.prostatecanceruk.org/posts/t21596-Travel-Insurance-so-high

When I suggested avoid the USA, I was going to qualify it "unless you have, family or a compelling reason to go". I decided my post would be a bit long if I did that. 

As a general rule I avoid insurance, but rlast year had a short break in the former USSR state Georgia. It was about a year after treatment and I decided to get insurance and not exclude PC. Now I'm more comfortable with the treatment outcome and no serious side effects for a couple of years, I would be happy to exclude PC and get the lower premium. 

As I said earlier PC is not likely to spring any emergency surprises on you during a holiday. I would say the main reason you need medical insurance on a holiday, is things like road traffic accidents, so if the premium, is much cheaper without PC cover that's what I would get. But if it is not much more to include PC then I would get that, so the insurers have no excuse the try and avoid paying claims if he had a kidney infection, or some other problem they would attempt to blame on the cancer. 

As others have said get yourself on holiday, as soon as you can where ever you will enjoy yourself. 

 

Dave

User
Posted 23 Jan 2021 at 01:30

People have had good results with the Nationwide Flex Account Plus, where travel insurance for the family is included in the bank account package for about thirteen quid a month.

They do charge extra to cover cancer, from just a few quid up. Also I think you can elect to be covered for everything BUT cancer, and as Dave said, your Old Man is unlikely to have a sudden change of health because of it.

The ‘wonder drug’ Enzalutamide costs £100 a day, by the way!

Best of luck.

Cheers, John.

Edited by member 23 Jan 2021 at 01:32  | Reason: Not specified

User
Posted 23 Jan 2021 at 07:01

Hi Corrie ,my husbands cancer is incurable N1M1 Gleason 4+5 .He’s now over 5years from diagnosis,still working and enjoying holidays when permitted ! I’ve just renewed our annual worldwide insurance with Nationwide flex plus account for an additional £132.00 a year .That’s on top of the monthly £13 that covers other things etc .
Best of luck and go out and enjoy your holidays .
Debby

Edited by member 23 Jan 2021 at 07:03  | Reason: Not specified

User
Posted 23 Jan 2021 at 10:02
All, you don’t know what a difference all your replies have made to me. We have been to many many places over the years, Mauritius, Cape Town and Winelands, all of the Far East, went to Australia for our honeymoon. I am a bit of an expert in digging out good prices. Got some Virgin Upper Class tickets for £995 return to New York and they are normally £££. Valid for 2 years but I need to pay any difference if I choose another date.

Sorry for wittering on about things that really shouldn’t be a concern at present.

Dave,

You are right. Once we can see how treatment goes we think it’s going to be a little boring for a while and then I will pounce. I keep looking at the stats for his grade. I shouldn’t do that should I?

You don’t know how much all these sensible responses mean to me.

With regard to Nationwide account. He banks with them. He has advanced prostate cancer that has metastasised to his bone and lymph nodes. Wonder if they will still cover. Not feeling unwell and still working (for himself) but it is of course very early days.

Thank you.

User
Posted 23 Jan 2021 at 10:16
Merrivale has told you that her husband has almost identical diagnosis to yours - that's what the N1M1 means
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Jan 2021 at 10:35
Thank you Lyn. Husband just has Flex account. He is fine to pay £13 pm but once we have a formal diagnosis I will speak to them and see if we can include his cancer. It might be that you need to be an existing customer in order to get cover for cancer. Some of the online quotes for 1 week to US were £1600++
User
Posted 23 Jan 2021 at 11:05

"As I said earlier PC is not likely to spring any emergency surprises on you during a holiday. I would say the main reason you need medical insurance on a holiday, is things like road traffic accidents, so if the premium, is much cheaper without PC cover that's what I would get. But if it is not much more to include PC then I would get that, so the insurers have no excuse the try and avoid paying claims if he had a kidney infection, or some other problem they would attempt to blame on the cancer."

While it is true that PCa is unlikely to spring a holiday emergency in most cases, there are some things like a bone with mets fracturing unexpectedly - it wouldn't matter whether the bone had been broken in a normal fall ... the insurer would be unlikely to pay out if mets were present.
To me, the most important thing about having full cover rather than with PCa excluded is for the time between booking and travelling. If you have to cancel, you are usually liable for part if not full cost and travel insurance can then refund your losses. If you get cover excluding PCa and then die (even from some unrelated cause but PCa is mentioned on the death certificate), or break a metastasised bone and can't fly, or develop lymphodema and are advised not to fly, or the HT isn't controlling the cancer and the oncologist decides that you need to start chemo 3 weeks before you were supposed to go on holiday, then you have to accept that all the holiday costs will have to be covered yourselves. For some people that wouldn't be an issue but our Sunday paper money supplement is frequently populated with people who had an illness or bereavement and then discovered that they weren't covered for the loss of their life savings on some dream holiday 😥

The last time we took John's mum to Australia before she died, her flight cost £3k and the insurance was a mindblowing £4.5k but we decided it was worth it for peace of mind! The insurance for John and I was less than £100 😂

Edited by member 23 Jan 2021 at 11:06  | Reason: Not specified

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

User
Posted 23 Jan 2021 at 11:33
The trick is to speak to real people rather than do it all online. If you speak to real people and can answer the questions, the quotes are usually more realistic. On the Macmillan website they have a list of recommended insurers for people with cancer. We went with Insurewith and they have been brilliant throughout, but John isn't metastatic.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Jan 2021 at 15:18
Corrie

Another vote for Nationwide insurance. They covered me for our trip to Australia last year, had to pay an additional premium of £115 on top of the £13 a month.

We were sailing back to Singapore from Sydney but got turfed off in Fremantle due to the Covid shenanigans but Nationwide paid up pronto for our replacement flights.

They quoted me an additional £125 for this year but I've declined as we don't plan to go away until we've both had our vaccine.

I'm in Group 5 my wife in Group 7 so I reckon we've a few months wait then I'll contact Nationwide again.

User
Posted 23 Jan 2021 at 16:47
Could my husband just open the Flex plus account now knowing his diagnosis? Wouldnt you have to have the insurance under normal circumstances before you upgrade to include cancer cover?

He has been with Nationwide for years but we normally buy annual travel insurance elsewhere.

User
Posted 23 Jan 2021 at 17:28
My dad opened one after a pace maker was fitted ,he had been a nationwide customer for years but upgraded to flex plus .

At the end of the day if they refuse or the extra is more than you want to pay just cancel it .

Good luck

Debby

User
Posted 23 Jan 2021 at 17:43
I found All Clear which covers metastatic PC. Seven days ago I didn’t even know what metastatic was.... Annual cover worldwide for both of us is £1900 which under the circumstances I didn’t think was too bad! We are going to wait and see how he reacts to treatment. I have some flexibility on the tickets but won’t get my money back. In a few months will get some travel insurance and hopefully Nationwide will come through.

Thank you all for helping me. I was also thinking of joining a support group locally but what I don’t want is people who have watch and wait PC. It would really help me to have people around who are going through the metastatic part. Has anyone any tips? I can see from only a few days on here there are some real experts.

I know going forward we are going to be ambitious with what we try and do, just try and go for it. I hope I am on here for years and years just still trying to push the boundaries, still making things work for us. It’s just I keep bursting into tears. I am OK after a few mins, good thing it’s lockdown and none of us are wearing make up!

User
Posted 25 Jan 2021 at 17:28
Just got some technical detail.

T4N1M1b.

PSA 136

Spread into pelvic lymph nodes with bilateral obturator and left common ilac Lymphadenopathy and also into the bones of C7 vertebra, sacrum, left ilium and left femur.

Please can someone help me understand this.

User
Posted 25 Jan 2021 at 21:24
T4 means that the cancer has broken out of the prostate gland and started to affect other tissue in the pelvic area.

N1 means it has also spread to the lymphatic system and they have given you a list of significant lymph nodes affected.

M1 means it has also spread to bones or distant organs, the b indicates that in your case it is the bones. There are tumours in his spine, the bottom of his spine, his hip bone and thigh bone.

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

User
Posted 25 Jan 2021 at 21:28
It’s bad isn’t it... he feels well though and looks normal. No pain.
User
Posted 25 Jan 2021 at 21:31
Consultant says the HT and Enzalutamide should work to stop the spread and it is likely to be ‘boring’ for a few years. This doesn’t sound true...
User
Posted 25 Jan 2021 at 22:42

Hi Corrie,

I typed the big words in Google and chose to search images. I saw things which look like hip bones and spine bones. I'm not sure if some of OH issues are in lymph nodes near those bones rather than the bones themselves. If you do the same you will get some idea of which bits of his body are affected.

I think your earlier question regarding travel insurance needs thinking about; considering Lyn's statement about breaking a metastatic bone. Well if OH broke his hip or thigh and you have excluded PCa then they won't pay out. I don't know how fragile those bones are? 

"it's bad isn't it..." most posters on this forum are perhaps a bit more sensitive than me and couldn't bring themselves to reply to a statement like that. Well yes, it is bad, but your consultant has said it will be boring for a few years. I think you have to take that at face value. We have had people on here for many years occasionally over a decade with diagnosis similar to OH.

 

 

Dave

User
Posted 25 Jan 2021 at 22:44
Doctors are not in the habit of lying. For some men the HT fails quickly but we have plenty of members on here who are 5, 10, 15 years on from a diagnosis like yours. Irun's diagnosis 5 years ago was remarkably similar and he is still running ultramarathons.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jan 2021 at 22:59
Lyn and Dave, thank you. He is going for a final CT scan this week and they will then baseline him. What we are thinking of doing is having a private consultation with a top specialist (I know we cannot name names) but looking at two from the Daily Mail. They are Zoom calls but we just want to take a deep breath before we plunge in.

I have done this before and used to have private medical insurance in a previous role. HRT for me with a top specialist. Cost £300 and worth every penny. I wasn’t getting very far with GP who wanted to start me on the cheapest option. A couple of times with a skin condition for son and it was definitely worth it.

Husband is happy with his care but would just like a final check. He is open to a trial and honestly is tackling this in a very positive way. As he has NEVER been ill before I always thought he was going to be a complete nightmare.

Shows what I know...

We can fund if required for things not available on the NHS - is there anything I should be watching out for.

User
Posted 25 Jan 2021 at 23:37

This thread has comparisons between private and NHS treatment, coming from a different direction than you, but the comparisons are still relevant. 

https://community.prostatecanceruk.org/posts/t27019-Switching-from-Private-to-NHS-care

Even though I and others think the NHS is just as good as private. I would have that private consultation. 

When my first PSA came back in the high 20s I asked my GP for a retest just to confirm, it came back more or less the same. I didn't want to start down the PCa route based on one sample which may have got mixed up with someone else's in the lab. So yes get a second opinion I think it will be the same as the NHS one but you need to be sure.

With T2 cancer there are private treatments which are not available on the NHS. But at T4 I think you are looking at hormone and/or chemo, there may be treatments the NHS won't fund but I suspect they would be very expensive.

I guess there are things like immunotherapy which is pretty cutting edge, but it would probably cost an absolute fortune and I don't think is proven. 

Trials are an interesting idea. I think there was a thread on here about them, you have to think about possibly much worse side effects and that it may not work as well as proven treatment. So they may be better for people who are terminal rather than incurable. 

Dave

User
Posted 26 Jan 2021 at 00:20
We self-funded private health for John's treatment but only because we wanted the urologist who was already looking after my dad, father-in-law and mother-in-law. For people who want curative treatment that isn't available in their area, it can sometimes be the right thing to do. However, it has its downsides like not necessarily having access to the specialist urology nurse and if you go private, you have to pay for every little thing.

With incurable cancer, I can't see any benefit in going private for treatment although paying for a one off consultation as a second opinion is probably worthwhile. But it depends what you mean about the 'best' ones named in the Daily Mail ... if you are referring to the list of best urologists, that isn't much use to you as they are all dealing with men who are still suitable for surgery - you need an oncologist not a urologist. If you are referring to the June 2020 article on emerging treatments and a couple of the oncos quoted there, go for it.

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

User
Posted 27 Jan 2021 at 14:06
Hi All, Someone just sent me this link

https://www.dailymail.co.uk/news/article-9190987/Thousands-men-prostate-cancer-denied-life-extending-drug.html

I think it is saying that its only used once other drugs have failed i.e Enzalutamide but can you even take Abiraterone after Enzalutamide?

They are quoting Prostate Cancer UK.

I am now getting worried. Will husband be refused Enzalutamide as well (I know its an expensive drug)

User
Posted 27 Jan 2021 at 14:26

Hi

My dad got prescribed Abiraterone last summer (after hormone injections stopped working) which he took for 3 months, sadly it did very little for him but made him quite ill (or that could have been the cancer spreading. We are in Scotland so slightly different rules to rest of the UK. I think when Abiraterone works it works really well but sadly not for every man.

i don’t think you can get Abiraterone after Enzalutamide if one does not work usually means the other will not work.

If your consultant recently mentioned HT with Enzalutamide then it sounds like it’s on offer to you?

My dad’s HT worked very well for 18 months, some men do well for years on Abiraterone or Enzalutamide.

anne

x

User
Posted 27 Jan 2021 at 14:58
I wonder if the article can be taken out of context. Just because a drug is expensive it doesnt mean it works for everyone.

My husband is young (56). His body might well be take a cocktail of drugs. He is fit and well bar this diagnosis.

We just dont know until he starts...

User
Posted 27 Jan 2021 at 17:52

Originally Posted by: Online Community Member
Hi All, Someone just sent me this link

https://www.dailymail.co.uk/news/article-9190987/Thousands-men-prostate-cancer-denied-life-extending-drug.html

I think it is saying that its only used once other drugs have failed i.e Enzalutamide but can you even take Abiraterone after Enzalutamide?

They are quoting Prostate Cancer UK.

I am now getting worried. Will husband be refused Enzalutamide as well (I know its an expensive drug)

 

This shouldn't affect you - men can't have abiraterone after enzalutimide has failed anyway. As I think others have said on your other threads, your OH wouldn't normally have been offered enzalutimide at this stage (like abiraterone it is only approved for men after their normal HT has failed) but during the pandemic, normal practice has been suspended because enza is less risky than chemo. 

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

User
Posted 27 Jan 2021 at 17:54
PS it is true that Enza and Abi don't work for everyone but chemo only works for about 50% of men with PCa
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jan 2021 at 18:39

Hi Lyn I’m interested in your last comment about Chemo only working for about 50% of men. At what stage? Is that not at all? Only for a bit?  Oh finished in October but we were never told that’s there’s a 50/50 chance of it working/not working. 

User
Posted 27 Jan 2021 at 18:52
Hi

I am no expert in cancer but just going through my dad having terminal pca last 7 months so have spent a fair bit reading other stories...

There is no definitive answer for cancer treatments for prostate cancer or the other many other cancers as every single person seems to be different ie what works for one man does not the other etc

I am sure I read about Abiraterone only working in 50% of cases too... so it’s certainly no miracle drug for all but some it is.

Personally I have psoriatic arthritis for past 10 years, while not terminal, it’s not a nice disease to live with. However I have been grateful to receive life changing biological drugs which changed my life... but again I am on my 3rd type as they all seem to fail at some point.

So sorry my reply is not supposed to be about my history ...only to say that the wonderful specialists/doctors/scientists are continually developing solutions to disease so there are hopefully many options for you in the future...

 
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