High psa for my partner referred to urology worried sick waiting for an appointment over Christmas

Hello Clare Clarebryan62 

A warm welcome to the Macmillan Online Prostate Community - I am so sorry to find you here especially at this time of year.

First off let me say the testing and diagnostic stage of any cancer journey is the hardest part - we've all been there and know how you feel. Even with Christmas and New year there is a set time limit on the cancer pathway for these tests and treatment to start so it would help us if you could start a timeline of your partner's journey on his profile. (you can read mine by clicking on my user name or avatar). To do this click on the chair - top right on the home page, then "profile and then edit". Once you have written something then click on "save".

With a PSA level of 45.2 the chances are it will be cancer - but time is on your side and as he's now being seen by his team things should start moving. If you have any specific questions - however trivial please don't hesitate to ask them.

Don't forget our Support line is there for both of you on 0808 808 00 00 (8am to 8pm 7 days a week).

I hope this helps - if I can do anything else for you please do come back to me.

Best wishes - Brian.

Thank you for the quick reply Brian and yes when I get time tomorrow I will set up a profile for him as he’s not very computer savvy so i hope that’s still okay that I do it for him ?? 
yes very scary waiting on mri and bone scan appointments and it’s definitely put a downer on Christmas this year x

Good morning Clare Clarebryan62 and welcome from another wife.

As Brian has said, the initial first few weeks whilst they do all the tests and then decide what they mean is the worst time as your first reaction is that you want things done 'now'. If it is prostate cancer then it is usually slow growing and there are a whole range of treatments available nowadays to deal with it, particularly if it is caught early. Also 98% of men die with prostate cancer, not of it. If you want a good reference book to explain the tests and what they mean then this is the link which you can download for free.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

Provided your husband agrees, and you are comfortable with putting information on your profile page, then it can help us to help you in the future with more targeted information. One tip is to keep a note of dates, times, names and contact numbers in case you need it in the future. Also it can help if you get 'full access' to your medical records from the GP as this means you can often see results earlier than waiting for telephone calls and meetings.

Please come back with any questions no matter how small or trivial you might think them as it is a steep learning curve to start with and we all know how frightening it is, particularly in the beginning, but let me assure you that things do settle down and, no matter what, you can still have a good quality of life.

Hi Clarebryan62,

My husband was initially diagnosed 10 years ago with a PSA of 45, so very similar to that of your husband’s too - and it also mirrored the timing with Christmas as well. I’ve documented our story on my profile.

He was treated very successfully at the time, and although he’s had a relapse this year, as all the amazing people on here correctly say, treatment has come on hugely in the last decade and though I was (not him!) initiallyvery fearful, he is responding incredibly well and I’m coming to view this merely as an inconvenient bump in the road.

The scariest part I found was the feeling of being out of control; that your life seems to revolve around appointments and tests to start with. Once this settles down and you have a treatment plan, you will feel much more back in the driving seat and reassured. The other thing is talking about it. I’m amazed how many men, once you start the conversation, open up and tell you that they're also having investigations, treatment etc. Not in anyway trying to dismiss your anxiety, but it really helps to know just how common PCa is and you are definitely not alone.

The people in here have been amazing too. They’ve been like a virtual handhold and a reassuring whisper in my ear when the feelings threaten to overwhelm. It’s funny how it’s us ladies that do the majority worrying and concern!

Good Morning Clare (Clarebryan62)

Thank you very much for updating Bryan's profile. I see the "girls" on the forum are already replying - so that's great. Even now at Christmas I worry, not about cancer but it was Christmas Eve when I was admitted to hospital and I don't want to ruin another family Christmas so it's always a poignant time of year for me!!

Best wishes - Brian.

Clare, (Clarebryan62 ), I can’t add much to the great advice already given.  I was diagnosed at PSA 74 at the start and was convinced I wouldn’t make one Christmas (I am now on my eighth!).  Most of us with PCa will admit that our lives have been changed by it, but many think that we are better for it.  We notice more about our surroundings and don’t take things and loved ones for granted.  
My advice to you would be just get on with having a lovely Christmas.  I hope the tests don’t take too long and that the results are good when you get them.  Best wishes, David

They try to set a time of 62 days from diagnosis to treatment, failed by a month in my case but once treatment starts is a big relief 

As Brian said this is the worst part for you 

Hello Clare, and welcome! I won’t repeat what others have already said other than to repeat that this waiting and worrying at the beginning of the journey is the hardest parts. I cried enough tears to fill a reservoir at the time as I was scared silly I would lose my husband!

so, where are we now? Treatment was completed in May this year! We are fearful of a recurrence but determined to make the most of each and every day ! This means we enjoy life, appreciate each other more and are closer in in our relationship than ever before. Life is good and the PC is only permitted to lurk in a very dark corner most of the time!

I think it might be worth pointing out that, in England, the referral to treatment time (commonly referred to as RTT) for cancer is 62 days. That is, the Government target is that all patients referred by their GP for potential cancer should be started on their first treatment within 62 days of that referral. Hospitals are not always meeting this target but it is a ‘stick’ to hurry things along if you get caught up in backlogs.!

To avoid excessive delays, we told the various departments that we were willing and able to take short notice cancelled appointments. This got us through the diagnostics and onto treatment more quickly. 

Also, please remember that all trusts have both a PALS ( patient advice and liaison service ( PALS or, sometimes PILS) who might help you if you get stuck in backlogs etc. Finally you also have a right to making a formal complaint to the hospital and further up the chain of command. We did all of these!

my own position at the time was that I felt I was fighting the treacle of NHS bureaucracy gone mad!  We had one appointment ‘postponed’ for 3 months at short notice  - for example - because the clinician had decided to take the day off - just as we were going through the diagnostics! When I challenged with the 62 day RTT target we suddenly got an appointment for the following week!

good luck !

Problem I had was biopsy turned up on time but biopsy results took 8 weeks then they asked for cat scan ,it all ran well over 

Hello Mal CG 

Perhaps I was "lucky". Admitted to hospital Christmas Eve - MRI. CT Bone Scan and Ultrasound all done between Christmas and New Year along with the Biopsy.

The Consultant told me it was cancer New Years Eve and started me on HT there and then. 

The delay was my Radiotherapy I had an indwelling catheter for 10 months and needed a TURP operation before RT. I had to push to get that done.

Best wishes - Brian.