BBC website news headline: "Cancer patience not getting right treatment, say doctors"

Good Morning Steve (mstev2) 

Many thanks for posting this - It's very good and I can say " I have been there - got the T Shirt".

!2/21 - Rushed into hospital - under urology - came out with a diagnosis of Advanced Prostate Cancer - HT for life and RT later in 2022

12/22 - Delay in seeing oncology because I needed a TURP operation - oncology reduces my diagnosis to HT for 3 years and RT,

So what do I take from this - misdiagnosis? - Delays in my treatment? - Is the NHS fit for purpose?

* OK - so I am a bit of an "oddball" (no comments thank you!!) - I have an initial PSA of 182 and no spread - Has my urologist saved the day by putting my on HT from Day 1 12/21?  In That case thank you Dr x.

* Why don't urology and oncology agree on a treatment pattern - it's not hard to talk to each other?

* Yes there have been delays in my treatment - but as I type this all is well (1st PSA test later today after coming off HT!).

Personal opinion - the NHS works but needs a good shake up - barriers need breaking down, old working patterns need to go - one system for ALL records needs to be introduced and a standard treatment path needs to be introduced - but then would I be where I am today if urology hadn't put me on HT from the get-go????

I think this will be an interesting thread as we all have different experiences as our personal journey has progressed.

Thanks Steve -- enjoy your last few RT fractions and good luck everybody.

Best wishes - Brian.

Hi Steve (mstev2 ), I started my journey under the ‘old’ guidelines and was put on a palliative treatment path with G9 T3bN1M0 but that was before triplet was around.  I had 37 x RT and Chemo (Docetaxel) and have been on HT (Zoladex) for over 7 years.  I have now been redefined as T3bN1M1 since a bone met was found last year.  My oncologist is insistent it is not curative.  David

Hi Steve (mstev2 )

From how I read the BBC and your experience I was treated the better way. After diagnosis we, (wife and I) met with the urology consultant who talked both possibilities through with us and advised us to go away and do whatever further research we wished to do and make our decision but at that point he put me on HT immediately regardless of which avenue we wished to take.
Our decision was RT for which I waited almost ten month and had to fight for dates even then. From the outset the consultant specified six months HT after the end of RT giving my 'escape' date from HT as the 15th January 2025. Now just waiting for the side effects of the HT to subside and that is 'How long is a piece of string?'

It's good to report that although the hot flushes are not getting significantly less in number per 24hrs (10-15) they are less intense and only last a maximum of five minutes.

My journey is in my profile.

Rod

I have been thinking more about this, and I suspect that some of the problems suffered by patients who have been led down, will not come to light in a forum like this four stop 

To try and explain what I mean I will use the experience that my daughter has recently gone through. She is disabled, and both her children have more minor difficulties to do with, and in February last year her landlord said that they were going to sell the house . Plenty of warning was given and there were no hard feelings come up but reviewing the market even with the substantial support my wife and I and the other grandparents give to them, the private market was no longer an option. In February 2024 we made application to the local authority pointing out the my daughter would be homeless, that she is disabled and would therefore be difficult to place, and that from the regress aspect she was entitled to support from the council. 

On 5th February 2025 they finally found a property, three days after an order for possession of the existing property had been issued.. 

To paraphrase the film Hot Fuzz there was a significant amount of paperwork. I dealt with most of it. 

As it has all come to a reasonably satisfactory solution we had time to think and my daughter posed a question that made me think."What would we have done if we didn't have you?"

I have spent a significant amount of my life dealing with paperwork and proposals, and this was like being in my old job again. 

Her question made me think. 

People in this forum have what my mother would have called the gumption to seek answers to their questions, and to check and double check. That does not apply to the majority of people everywhere. 

In this forum we are lucky in having each other's support. I suspect that the patients the doctors in the BBC article aware about either do not have this support or do not seek it. 

It is really, really hard to persuade people to seek their own information. 

I wonder if anybody has any brilliant ideas about how MacMillan could publicize this forum

Hi all. As a relative newbie to the forum I can also confirm my experiences were broadly similar to what others experience regarding the "disconnect" between urology and oncology. I was originally informed of my diagnosis "formally" by a urology consultant. G10, T3b, N1 M0. It was a very sombre affair with several key comments that stuck like, "this will shorten your life" (which I took as new speak for terminal), I would be on HT "for the rest of your life" and "you have an extremely nasty and aggressive cancer there" in short, a very negative and disheartening message.

Fast forward a month later to my appt with oncology and it's chalk and cheese. Much more upbeat. Goal is containment or cure. HT for 2-3 years, commence RT asap (I commenced 20 fractions within 6 weeks of that appointment and am on the dreaded PSA watch at the moment).

Now I guess that urology are just as likely to be right as oncology, but there's something about how the message is delivered that shouldn't leave you feeling that you want to "take sides " - please don't discharge me back to urology would be too strong, but you get my point. 

They also really need to get a "one stop shop" approach sorted out quickly, as delays in passing around just increase anxiety and can only help the cancer prevail, and isn't stopping that kinda the point of it all?

Wow Indykid 

we had a really horrific experience with Urology specialist nurses . My OH was offered surgery or HT/RT / trial and a week later told bluntly over the phone after us calling  to be told he told no surgery unlikely will get RT . Our world crashed . He was diagnosed in March but never saw a doctor until July and the Oncologist said HT/RT but had to wait to see if the lymph nodes were involved . If involved he would still have RT But it would be palliative . 

the Oncologist has told us he will be on HT until it stops working but is looking for any suitable trial relating to the lymph nodes. 

at no time should any nurse give you false hope not give you life changing information over the phone. I have been actively dealing with Urology about this but getting nowhere . It is certainly like chalk and cheese . 

Hello Liz (johnam) 

johnam said:

at no time should any nurse give you false hope not give you life changing information over the phone.

I will add to this and go one further;-

No one should receive their cancer diagnosis over the telephone - but it's becoming the norm now.

For most people this is a "Life Changing Event" even if you are on a "curative pathway" - it's just not right.

Best wishes - Brian.

Hello Millibob (Brian),

I think you may be correct when you say receiving the diagnosis by telephone is becoming the norm, & that was how I received mine.  Maybe I'm the odd one out because I actually preferred it that way for the following reasons:

• I was in my comfort zone at home when the expected call came
• No unnecessary travel & waiting around at the hospital with sky high stress levels
• My husband was able to listen in to the call so we didn't miss anything
• Whilst it was a specialist nurse that rang me she was very experienced, caring yet professional, gave the information in a clear way unhurried way & discussed what the possible treatment options would be & advised that an appointment would be made for me to see the consultant within the next 2 weeks to discuss options.
• The hospital had previously given me various Prostate Cancer UK booklets so I was able to read up on treatments as well as check out sites such as Macmillan prior to the meeting (I had already done that but having been told I had PC they all became much more relevant to me rather than a story).
• I was able to formulate relevant questions that were important to me before the follow up meeting whereas if I had been given the news face to face I would have been grappling with the news so not thinking clearly about what I needed to ask.
• Whilst it wasn't the news I was hoping to hear,  I think I was more relaxed than if it had been given to me face to face where up bringing would have crept in & having to put a brave face on in front of others would have surfaced (very old school I know).

Face to face also doesn't guarantee that the person delivering the news has the right people skills even if they have the medical qualifications. 

Having said all that surely it's all down to the individual how we are told as we are all different & react differently, especially where a diagnosis can potentially be life changing.  Maybe a more caring approach would be for individuals to be given a choice as to whether it's face to face or remote?

Best Wishes

Brian

Hello Brian (Buzzers) 

Great post - and thank you for your contribution - I think I am old school and would want bad news face to face - but that's a great point 

Buzzers said:

Maybe a more caring approach would be for individuals to be given a choice as to whether it's face to face or remote?

Yes - you should at least have a choice.

Best wishes - Brian.

Being given a slightly better but similar diagnosis by my Urologist did come as a bit of a shock having hoped it wouldn’t be so far on, although he was generally encouraging that the recommended treatment would certainly lead to a cure even though it was all very hard to take in at that point it was delivered in a relatively caring way although we did feel he was a bit reluctant to dwell on the full details. But at least HT was starting straight away leaving me feeling relieved that it was now fully identified and action was being taken even though in retrospect I didn’t fully appreciate just how this would affect me!  The meeting with my Oncologist soon after had a somewhat different feeling being very efficient but also Very matter of fact setting out my treatment path and reasoning for it and getting me to sign myself over to it!? This included a recommendation for Brachytherapy which came as a bit of a surprise? Anyway that and my 20 sessions EBRT are now completed, so just waiting for that to settle and get my second ever PSA test which will hopefully confirm my promised cure? I have had No other contact with my Oncologist since! Next will be a phone consultation in March.