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Husband diagnosed with prostate cancer

User
Posted 21 Feb 2018 at 19:22
Hi everyone, my husband was diagnosed with prostate cancer stage 3, Gleason 8, 3 months ago. All a bit of a shock as only went to doctors for an earache 🙄, all of a sudden he is having PSA checked as he is just over 50. Well that was the start of it. Came back as just over 9. Had a biopsy which confirmed the cancer. So surgery is not an option as he is on warfarin due to a aortic valve replacement and severe sleep apnea. He was started on hormone therapy. So we have seen the oncologist today who was very positive and he will hopefully be having high dose rate brachytherapy in combination with external beam radiotherapy. My husband is very positive and I am trying to be but due to working in general practice I have certain knowledge and access to information which sometimes scares the life out of me. I suppose I am just looking for some reassurance from you guys and any advice so I can support him the best I can.

Thank you all 😊

User
Posted 14 Jul 2018 at 08:01
Hi Barry

not everyone is in the position to be able to pay for there treatments etc, despite some of the nhs shortfalls it is still the best health service in the world.

regards barbara

User
Posted 14 Jul 2018 at 02:42

Originally Posted by: Online Community Member

We still have the world's best NHS despite all the complaints to the contrary

Good that many people are happy with the NHS but best in what respect?  Short staffed, old equipment in many hospitals, often slow in processing patients, scans and tests and not surprisingly well down the league for cancer results in major European countries.  I have been waiting over 2 months for an appointment at UCLH just to learn whether they may carry out further treatment suggested by the Royal Marsden.  If they then decide not to treat, I will have lost over two months and might well have to go private, possibly to Germany where they do run an efficient and well run health system as my previous experience there showed.  And this after me having to pay for a private PSMA scan to show my situation was different to that thought from an inferior scan at UCLH.   Some people need to find out how much better some other health services perform  before blithely saying the NHS is best in the world.

Edited by member 14 Jul 2018 at 02:45  | Reason: Not specified

Barry
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User
Posted 21 Feb 2018 at 20:38

Hi Amanda, please be reassured that you are not going through this alone. I was in the same position as you over 5 years ago. It's the fear of the Unknown but countless people on here gave me help and support then and they are doing it again now. Stay positive and don't be afraid to ask anything. It's not an easy ride being the other half. You can only do your best. I was very happy I found this place.

Denise x

User
Posted 21 Feb 2018 at 20:42
Thank you Denise, so glad I found this group, doesn’t make you feel so alone. All a bit daunting at the mo but I’m sure all will come good.

Amanda x

User
Posted 21 Feb 2018 at 21:18

Hello Amanda

Well both your husband and the oncologist are very positive so that's a good start.

As Denise says, it isn't easy being the other half, but we do our best eh?

Just keep supporting him as best you can and let us support you.

You are no longer alone

We can't control the winds - but we can adjust our sails
User
Posted 21 Feb 2018 at 21:20

Thank you for your kind words x

User
Posted 21 Feb 2018 at 22:18
Hia amanda sorry youve had to start this journey, this forum is fantastic lots of kind people offering valuable advice and kind words, my OH is the same age as yours had HD brachytherapy and just finished radiotherapy, gleason9 t3b very similar diagnosis, hes doing well still on zloladex for another 18months, we were shocked and scared at first didnt now what to expect, still not cured if he ever will be we dont know, still got a long way to go but up to now not many side effects and continued working through his treatment, so its not all bad news, take care wish you well..jo.xx
User
Posted 13 Jul 2018 at 14:43

Hi Amanda

I was diagnosed early last year with Gleason 7 but enlarged prostate (60+). I opted for the Bracytherapy as it looked like the least invasive. I had to start with 3 months hormone treatment to reduce the prostate. Later scan indicated size reduction to under 50. On actual day of treatment the size was 56 so my oncologist decided on heavy dose of 105 radioactive seeds due to size being over 50 and also had catheter put in place. Hospital literature stated most Brachy patients leave the same day or morning after providing they can urinate on their own (without catheter). Unfortunately after 2 days in the ward I could only leave with catheter in place with leg bag and night bag for bedtimes. After 8 months of catheter my oncologist suggested  changing from urethra catheter to a Supra Pubic catheter which gives a lot more comfort (and is still in place following 3 more months). My urologist tells me the high does of radiation from so many seed have my bladder a hard time and as she says it is quite damaged but healing slowly. I have 3 months left before next checkup (1 year from surgery) and if still no improvement I may need a procedure on the bladder to lessen the pressure on back passage.  I mention all this to tell you that the initial shock/fear soon wears off and is replaced by the gratitude that the cancer was indeed found at early stage. My oncologist told me that in over 1000 brachy procedures only on 4 occasions has he seen symptoms being so prolonged. Moral of the story is that some of the literature handed out can be slightly misleading. Sorry if I upset anyone but thought to share my experience "warts and all".

We still have the world's best NHS despite all the complaints to the contrary

 

Take care and wish OH the very best of recovery

User
Posted 14 Jul 2018 at 02:42

Originally Posted by: Online Community Member

We still have the world's best NHS despite all the complaints to the contrary

Good that many people are happy with the NHS but best in what respect?  Short staffed, old equipment in many hospitals, often slow in processing patients, scans and tests and not surprisingly well down the league for cancer results in major European countries.  I have been waiting over 2 months for an appointment at UCLH just to learn whether they may carry out further treatment suggested by the Royal Marsden.  If they then decide not to treat, I will have lost over two months and might well have to go private, possibly to Germany where they do run an efficient and well run health system as my previous experience there showed.  And this after me having to pay for a private PSMA scan to show my situation was different to that thought from an inferior scan at UCLH.   Some people need to find out how much better some other health services perform  before blithely saying the NHS is best in the world.

Edited by member 14 Jul 2018 at 02:45  | Reason: Not specified

Barry
User
Posted 14 Jul 2018 at 08:01
Hi Barry

not everyone is in the position to be able to pay for there treatments etc, despite some of the nhs shortfalls it is still the best health service in the world.

regards barbara

User
Posted 14 Jul 2018 at 09:00
We all pay for the NHS all the time... The key benefit is universal treatment. It is not by any means a perfect health service.
User
Posted 12 Sep 2018 at 20:42

I am in the US, so no universal health coverage here, so everything is private pay. We opted to go to a really good hospital but still do not get the multiparametric MRI until October 22. The wait feels like forever. Just an FYI that even when you are paying for care (and we have very good health insurance) it seems to be a long, miserable process!

User
Posted 13 Sep 2018 at 11:07
Appears some people did not appreciate my comment about the NHS but as sallyone says from the USA that even with "very good health insurance" delays still happen. Go to an A&E ward in any hospital in Friday or Saturday night and see what staff have to put up with - physical and verbal abuse!!! Would any of you put up with those working conditions. NHS is NOT perfect and is under a lot of stress but you will be cared for regardless how wealthy you are.
User
Posted 13 Sep 2018 at 12:58
I dislocated a shoulder skiing in the Austrian Tirol, and was taken to the krankenhaus in Kufstein.

I walked in and wondered where the mammoth queue for A&E might be, especially as this was the main hospital for that region of Tirol with loads of injured skiers arriving daily. I walked down an empty corridor and a nurse asked “Can I help you?”

She took my passport and EHIC details and said “please wait”. After a minute or so, I was taken for an X-ray, and no more than ten minutes later I met an orthopaedic surgeon, who apologised for keeping me waiting as “I have been up on the roof, dealing with an emergency helicopter arrival”.

He soon relocated the shoulder, using a method reminiscent of a mediaeval torture chamber - but that’s orthopaedics - and I was out of there within an hour. Try that at your local A&E! Ours has a permanent “four hour wait from this point” notice on display.

Anyone who says the NHS is the best in the world is misguided. It could be, but it’s all down to money that successive governments prefer to squander elsewhere.

User
Posted 13 Sep 2018 at 15:47

There is general agreement that NHS staff do a very good job on inadequate money, with limited resources and at times suffering abuse, Also some people are swayed by the fact that it is largely paid for out of taxes taken in advance rather than at the point of use or through insurance but, that this does not make it the best health service in the world does it.? How can anybody who has not detailed knowledge of all the major health services in the World say it is when reports by respected bodies say it lags behind others in a number of areas. Here is the result of just one survey, there are others that confirm this I I could link to but this makes the point. Surely, how effective the NHS is in dealing with patients and the results that are achieved shows how good it is? http://www.qualitywatch.org.uk/news/news-release-uk-faces-%E2%80%98mountain-climb%E2%80%99-improving-care-quality-new-comparative-study-finds

 

Edited by member 13 Sep 2018 at 15:49  | Reason: Not specified

Barry
User
Posted 13 Sep 2018 at 21:28
I think there is a difference between “the NHS” and “people who work in the NHS”.

The NHS is in crisis - underfunded, over-stretched, scandalous hiving off of services to the private sector (paediatric services sold to Virgin in Swindon means that seriously ill and disabled children haven’t seen a specialist for over a year & we have seen the impact on here of the sale of urology services to a private company in the south west), poorly people fed crap in hospitals, GPs are either self-employed or profit-making businesses; it is a disaster. However, I believe the vast majority of people who work in the NHS are committed to doing the best they can in challenging circumstances. I couldn’t do it.

Interestingly, there has been a scandal in the last couple of days regarding a company that has been taking money from the government to run schools as academies, and then not spending the money where it was supposed to be. The same company was a client of mine, who I dumped a couple of years ago because I felt they were putting profit before the safety of children. The same company owns the tender for cleaning and catering in the vast majority of NHS hospitals - no doubt the newspapers will soon make the connection and start to ask questions.

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

User
Posted 14 Sep 2018 at 08:12

The problem is:

Governments of any kind are rubbish at managing anything. 

Private companies become exploitative when their customers have no other choice

So government should stick to what it does well - tax, regulate and police.

 

How this helps fix the NHS I have no idea!

User
Posted 14 Sep 2018 at 20:30
I can't disagree with Francij1's sentiments, but alas life is more complicated than that. To tax means defining how much expenditure you are prepared to finance first. To regulate requires being at arm's length from decision making on priorities, but half of Parliament thinks the government should run the (English) NHS and constantly presses for intervention, refusing to accept your first point. As to policing, that too is really done at arm's length through independent regulators, a system that seems to work, but gets brickbats galore when it doesn't. Again, ministers are expected to police the system, which they are ill equipped to do.

Trouble is we never leave a system of governance in place long enough for it to bed down and optimise itself. There is always pressure for yet another reirganisation.

Thank heaven we have such dedicated staff, whatever their national origin, agency or directly employed (alas too small a proportion of the latter)) keeping the shiip afloat. I would happily pay an NHS tax to fund the English NHS properly, but not enough folk share my support for hypothecated taxation.... Rant over.

Good Luck to us all!

AC

User
Posted 14 Sep 2018 at 23:28
I would also pay a hypothecated tax for the NHS to get a better service. Hopefully, this would also include dental. I have had to wait 2 months for a root canal to be started and have had to eat on one side to avoid pain. I think the appointment situation may have got worse because the dentists at my surgery, as indeed at many others, have gone over to a private plan and existing NHS patients are fitted in with less priority. Also, the number of dental practices has not kept pace with an increasing population. I'm still in a better position than some NHS people though who can't even get a dental practice to register with.
Barry
User
Posted 14 Sep 2018 at 23:42

Poor Amanda - we have rather hijacked your thread .... sorry :-/

Edited by member 14 Sep 2018 at 23:44  | Reason: Not specified

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

 
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