Me again

Hi johnam

It is hard isn't it. We were a 3 full months from getting PSA blood result to getting a call.from the oncology nurse. We then have to wait another 4 months to speak to the actual consultant!! That's in August.

I am surmising that they get you onto HT immediately and then give you a while to see if your PSA numbers come down.  The ON said that the consultant will decide what, if any, additional treatment will be needed.

Praying they do have other treatments as husband has stage 4 advanced, with spread to bones and lymph nodes...we haven't actually been told what the spread looks like or how many areas are affected. We may get this from the consultant, although not sure I want to know as I got the impression from the ON that there's "a fair few".

Also Praying hard he has another 10 years plus!

Hope you are well x

Hello AFLMF 

It should be 2 weeks from GP to first hospital appointment and 62 days MAXIMUM before starting treatment.

Have a word with your hospital PALS office (Patient Advisory and Liaison Service). tell them of your anxiety and see if they can speed up things - tell them you will take any cancellation at short notice.

I hope this helps.

Best wishes - Brian.

Hello Amanda, waiting 6 months to see, in my case talk, to your oncologist is sadly the norm now, though I was able to get all my tests done at local urology department 6 weeks after my PSA results, and the urologist put me on HT straight away. I hope you have told them if someone else cancels you are available, and how stressful the waiting is for you both. I too am stage 4, spread to 9 places, have cardio issues, so I can't have chemo or surgery though I do have a few options. best wishes.

Eddie xx

Hi Brian - does apply to Scotland as well?

Thanks

Amanda.x

Thanks Eddie

I am just guessing in my statement above really

 The ON said not to worry if it did take a while but. She mentioned a period of 4 to 6 weeks, so was a bit surprised when the app came in for beginning of August.  We have to get a blood test done 1 or 2 weeks before it so they have the current numbers

Hi AFLMF, it’s just so stressful

waiting from day to day wondering if !!!! From making the GP appt in January . The earliest he could be seen by our own GP was March . Referral was made to WGH 19th March as fast track . We have still not see a consultant and according to the specialist nurse who told him he had cancer he may not see one . Next appt is with her to  give us all the results and tell us the plan  I’m just very sceptical that they draw plans up without us being involved .  Best wishes to you too 

It’s well past these time scales for us 

Insist on seeing a consultant. Write to the chairman of the trust you are in and explain the situation. Any treatment has to be discussed with you and agreed or not.  Read up intensely about your results so you have some knowledge in order to ask questions 

It is very stressful!

Did the nurse tell you grading or anything? She told us immediately on the call.

I think it's perhaps the process in Scotland, maybe? ie speak to the nurse first and start HT immediately, with follow-up some time later with the consultant once the HT has had time to work.

For us, the grading means choices of treatment are very limited.  If your grading is much lower then you may have many more choices in respect to treatments and they will look to give you a range of options? 

The biggest challenge for me (I am a total control freak) has been losing complete control over our future and retirement plans. We are unable to plan anything at the moment and take each day as it comes until we see the consultant and how the cancer reacts to the HT. My husband is only 61 and our world has been completely turned upside down but we have moved on a teeny bit from that first day.

I have found the guys on this forum to be so helpful, informative and encouraging.  I have even started to feel a tiny bit of hope that hubby can be here in a few year's time.

I do hope you can get some further information soon to at least know what you face.  The waiting is just horrible and my thoughts are with you

X

Hi Cumbria Lady , thank you for your reply .my head is pickled reading up about what we know already about his diagnosis which the specialist nurse (Sn) told us over the phone following the MRI  which I find a bit scary . He could have been on his own    Just need to find out about his bone scan and the biopsies (6) . As the SN. Also said during her call  it will be radiotherapy . She can’t decide without having an open honest discussion about the pros and cons of all the treatments available . Right now we are thinking surgery but we just need to wait and see. .