My husband (72)went to the GP in April with gait and balance issues. The GP ran some general bloods, which showed up low B12 and folate and a PSA of 7.5.
On 12 May, he was referred to Urology. A 15 minute appointment the following week included a DRE, which prompted a referral for MRI, which took place on 1 June.
On 14 June, my husband received a letter advising him that the next steps would be a full body scan and a biopsy. The appointment for the scan came in the same post for 24 June. Biopsy will be 7 June.
Unfortunately, the letter also included a summary of the findings of the initial MRI, which were "changes consistent with prostate malignancy" and "a bone lesion suggestive of bony metastases", so I know what's coming. My interpretation has been confirmed by the Helpline.
We have no idea when we will see a doctor again and have had no contact with Urology since the appointment on 19 May.
My husband has seen two GPs this week re increasing symptoms of instability when walking and numbness in his legs, but the GPs are unwilling to do anything until they know whether he will be cared for by them or by the hospital, so everything hinges on a formal diagnosis and we have no idea at all when that will be.
However, they do write up their notes which appear on the NHS App saying things like "query spine and brain mets", which terrify me, but not my husband who is in complete denial. Complete and utter denial. He says the whole thing is a mistake. He told the doctor that this morning.
Any advice gratefully received.
Hello ansteynomad
A warm welcome to the Macmillan Online Prostate Group - although I am so sorry to find you here.
So the formal diagnosis will be made using a combination of the MRI Results and the Biopsy - you did say this was on 7 June but do I take it he's not had this and it is to be done on 7 July?
I must say it's unusual to have a spread outside the Prostate with such a low PSA of 7.5 but if it's showing on the MRI then it must be correct (My PSA was 182 on diagnosis with no spread!).
If the biopsy is 7 July it takes 2/3 weeks to get the results and then there will be an MDT meeting to formulate his treatment plan so you are into early August before you have a formal diagnosis. It's also possible his team will request a bone scan to confirm the spread.
The normal practice in England is that there will be a "sheared agreement" between his hospital team and the GP with the GP dealing with things like routine injections etc. Personally I think you should go back to the GP and ask for treatment if he's not stable, surely they can contact urology to find out whats going on.
As for your husband being in denial - he's a man - if there's no pain then he's not ill, we are all a bit like that - he will come round to realising he's ill once a treatment plan is organised and he's met the hospital team.
Stick with us, we have all been where you are - and the diagnostic part of the journey is the hardest. use us to vent if you need to and ask any questions - nothing is too trivial.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hello ansteynomad
OK not an issue. The biopsy is the only part of the journey that could be painful and sadly he will lose his dignity - but the staff have seen it all before and are very understanding - here's what to expect:
Stick with us and we will do everything we can to help. remember to take some time out for yourself too.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
