NHS or private?

NHS or private?

User

Posted 28 Nov 2014 at 13:54

Hi Everyone

My husband has recently been diagnosed with low grade prostate cancer (Gleeson of 3+3, psa of just over 3 that has been that way for a few years) and not spread outside prostate.

As he is only 43 and with a family history we are thinking that active surveillance is probably not best as it has a lot of time to do something, so we are thinking probably Brachytherapy to aim to get it fully resolved.

The doctor that gave him the results said he has a range of options and gave us a pack with lots of reading and said we will get a consultant date to discuss further.

Problem is we can't get in to see a consultant in the NHS to discuss our options, we have been waiting over a month now for a date and just can't get to speak to anyone about when it might be.

We do have expired health cover with AXA that finished when my husband recently changed jobs (typical!), but they will let us take it back out for around 4k and will still cover him for the prostate treatment. This option is only open for another month or so.

So my questions are really

1) Is Brackytherapy the best thing for his situation in your opinions?

2) As we are probably considered 'non critical' by the NHS should we just bite the bullet and go private? (very concerned that it could drag on for years otherwise, and by then we will have lost our chance to go private).

Thanks very much for reading

User

Posted 28 Nov 2014 at 17:31

Hello and welcome Bicesterboy.
At 113 I think you must be the oldest person on the site!!
IF you look at my husband's profile (click on his name and it comes up) you will see that he had Brachytherapy on 3rd June having been on Active Surveillance for a year.
I updated it last week.
I cannot offer any advice on the private health care question although I do understand the aggravation of having to wait around for appointments.
As far as the NHS appointment is concerned, have you thought to ring the secretary of the consultant to see what the hold up is. It might help.
By the way, just because his cancer appears to be "low grade" with low PSA, it doesn't (certainly shouldn't) mean that he gets pushed to the back of the list. There may be a simple oversight for a lack of appointment so give that sec. a ring.
There are a number of men on here who went down the Brachy route so hopefully somebody else will be along to give you more info.
Best Wishes
Sandra

Edited by member 28 Nov 2014 at 17:32 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 28 Nov 2014 at 19:02

Hi Bicester Boy or wife of

At the end of the day you will probably be seen by the same consultants and treated in the same hospital. well your initial consultations might be in the Manor but your treatment will probably be at the Churchill. At the end of the day its your money but it will put you in the driving seat.

The Churchill in Oxford has all the latest kit some great consultants and the cancer unit was only opened in 2012

I am 51 and was diagnosed initially with a Gleeson of 7 and opted for Brachytherapy however after insisting on an MRI my cancer was shown to be possibly outside the prostate I then opted for the robotic operation they have the robot at Oxford. However the operation was abandoned after an hour due to breathing problems. While having the operation the consultant confirmed that my cancer had spread to my seminal vesicles I am now on hormone therapy and start radiotherapy next week.

If you at all concerned ask questions and give the specialist nurses on this site a call and talk it thru with them they have a wealth of experience

All the best

Tony (Chipping Norton)

User

Posted 29 Nov 2014 at 10:40

I hope your next step works well Tony, how frustrating that they had to abandon the op but at least you know what you are dealing with now.

Thank you both for your replies, I have read Johsan's profile, great to see a 'real life' experience of what happens.

Sounds like the Churchill would be good but I'm not sure if we would now be in the catchment area (live near Milton Keynes).

We finally got hold of the consultants secretary (after 3weeks of trying) yesterday afternoon, he has an appointment for the very end of December.

MRI was done at the same time as the biopsy and I believe that is how they know it hasn't spread (not sure if I have understood that correctly?).

Many thanks
Lara

User

Posted 29 Nov 2014 at 11:18

As said, the surgeon and hospital may well be the same whether you opt for private or NHS. The difference is that with private you get consultations when and where you want them, no waiting for scans etc. and more importantly, for me anyway, was that I had a private room with my own facilities for the op.

User

Posted 29 Nov 2014 at 17:31

Hi Lara

Mine was picked up as having spread when I had the MRI the consultant did say that if it had been last year they probably would not have seen it as the kit at the Churchill had recently been upgraded. I read somewhere that Oxford were working MK to create a cancer centre but I don't know how far thats got.

Like Martin said with private your in the driving seat

Good luck

Tony

User

Posted 30 Nov 2014 at 08:35

Agreed about speed in the private sector. Once my initial diagosis was apparent, my feet barely touched the ground with MRI, bone scan and LRP following in quick succession. However, from looking at other people's experiences, NHS after-care and follow-up looks better. Current delays with NHS may be down to budgets.

Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 30 Nov 2014 at 15:56

Hi,

I have always found I've had really good care from NHS at the Royal Berkshire Hospital in Reading.

When I was diagnosed, I received the news on a Wednesday, had a bone scan on the Friday and a flow test and an MRI on Monday. The complete diagnosis was given just over a week later and if I'd been in the fortunate position of being able to have my prostate removed that would have happened a couple of weeks later. I was really impressed about the level of care I was given.

In fact, unfortunately I needed to take advantage of another area of care at the hospital when I had a heart attack just over a week ago. They were superb in everyway. So I am very happy with the NHS, I would highly recommend the service they provide.

Steve

User

Posted 08 Dec 2014 at 10:25

Thanks everyone, I am thinking private is the way to go but am still trying to convince my husband (he is of the opinion that as the doctor has said his PC isn't that time sensitive he might as well wait and save the money). Will wait until our consultation at the end of the month and see that the specialist says about everything.

Lara

User

Posted 08 Dec 2014 at 10:54

When discussing with the consultant whether to stick with the NHS or go private, clarify the aftercare arrangements. We paid for John to get the consultant we wanted but found that he didn't get the services of the local nurse specialist which other members here seem to find invaluable support. Some men find that having gone private they can't access help for incontinence or get a referral to the local ED clinic (private health won't buy you an ED nurse)

As for brachytherapy, to me it seems a no-brainer for a man with low PSA / small volume gland. But John was refused brachy because at our hospital it is not offered to younger men due to the small increased risk of it causing secondary cancers many years later. It will be interesting to see what your consultant thinks about a 43 year old.

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

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