Finally, a diagnosis!

That is ridiculous, you must be devastated.

Have you contacted PALS, if not you really should. Complain and ask for immediate assistance.

Ring oncology secretaries too, leave a message. Keep doing that daily until you get a call back, they will help advance your case with all they can muster, but stay polite and to the point. Say the same thing to everyone and you will be heard.

If there’s pain or any health worries get to A&E, they can expedite the necessary escalation to the consultants.

self advocacy is your daily work from now on. And I hope you get help soon.

Hello ansteynomad 

I agree with Mr U about PALS, however I think it's time to escalate this to the top. You have waited long enough, been messed about and you now have the news that he's a T4.

My advice - an e-mail to your MP with the full timeline from day 1 to now. Perhaps a copy to Wes Streeting (Secretary of State for Health and Social Care). If you don't mind a bit of publicity, your local newspaper or even the Daily Telegraph (who have a Prostate Cancer feature ongoing) may be able to help.

As Mr U said:

Mr U said:

self advocacy is your daily work from now on.

Sadly, it's the only way to progress your personal journey.

Do let us know how you get on.

Best wishes - Brian.

Hello Ansteynomad, I am so very sorry to hear that your husband has been diagnosed with a more advanced cancer than initially suspected. This is not what you wanted to hear and I really hope you get an oncology appointment very soon.

I think your experiences raise some crucial points - not just for yourselves but for all people on this particular prostate cancer journey. I have just read your bio and come up with the following:

First - at what point on the diagnostic pathway is cancer officially considered as diagnosed ? From your bio Your husband was told that the MRI scan showed malignancy on day 31 from GP referral. Is this the point of diagnosis or is the point of diagnosis when you have the complete picture ie 119 days? 

Second - the Government target is 62 days from GP referral to start of first treatment. From your bio, your husband started his hormone therapy on day 101. Is hormone therapy classed as ‘first treatment’ or is radiotherapy or chemotherapy classed as first treatment? ( I suspect that HT is considered a form of treatment ? That said, hormone therapy holds the cancer in check whereas chemotherapy and RT are aimed at diminishing or making the cancer better?)

I think it would be useful to have greater clarification on these two points for people following us on this journey.

Whatever, your hospital trust has failed to meet the Government targets and you have had an awful time on this diagnostic pathway. I know how stressful it was for us and our journey was not as protracted and difficult as yours. My heart goes out to you both. 

It seems that all Trusts and, even, their departments, differ in the speed and efficiency of the service they offer. There is a consistency in the inconsistency patients experience! I hope, though, that you have a similar experience as us - urology was appalling but oncology was brilliant! 

I’m not sure that I have been able to help you by raising the questions. However, definitive answers from others posting here might help you be ready if urology, says , for example, that treatment started only 3 days beyond the Government target? 

A very Similar set of circumstances happened with myself, went way over 62 day thing the diagnosed stage 3 ,by urology gets to oncology upgraded to stage 4 .

Now on apalutamide and zoladex ,20 factions of RT, initia diagnosis March 18th 24 RT Completed 24 12 24 

Doing OK at mo 3 monthly things coming up next couple weeks 

Hope all works out well for you 

I fully agree with this.

Now is the time to be a professional pain in the ****.

The one thing I would add is to confirm everything in writing, including your understanding of what has been said in any telephone conversation. If the department will not give an email address, send it to PALS.

One thing I have found effective is to tell them when you are next going to be in contact. Then do it. On the button.

You are likely to get fed up with this, but not nearly as much as they are.

I wish you well.

I’m really sorry to hear your news! You have been treated dreadfully, when given news like that, there really should be Specialist nurse support in attendance, so you can ask questions.

i agree with others that you really must escalate through PALS to at least get a specialist nurse support contact and you really need to push for an oncology appointment ASAP. Mine specialist nurse has been invaluable throughout my 15 month journey. It’s truly devastating news to be told it’s advanced prostate cancer, I had the same news myself 15 months ago!

Once you get an oncology appointment and they settle on a treatment plan with you both and that begins, things do get more settled. Once treatment is agreed things seem to setttle down.

The treatments are amazing for Advanced PC. I myself have had Hormone therapy, chemotherapy and radiotherapy. It’s tough but it works! 

Take care of yourselves and please ask away if you have any questions! 

You have been dreadfully treated and as others have said should be pressing your local trust PALS for action. I was treated in a very similar manner by the Shrewsbury & Telford Hospital Trust as you will see by my bio. There was a delay of over 150 days from my GPs referral to being prescribed Bicalutamide. Even after the start of HT I had to fight tooth and nail to get a date for the start of my RT. I ended up going into the department in person and requesting a face to face meeting with the appointment staff, after that I received a date for my RT to begin within three days of that meeting even then it was almost ten months from starting HT.

Now is the time to be VERY firm with the Oncology department however it will pay you to be ultimately polite. 

I feel for you should you be unlucky enough to be under the same trust.

Rod