I'm lost

If you are a UK citizen, radiotherapy is available to you on the NHS.

I don't think you are getting your money's worth from your urologist, and I'd suggest you seek a second opinion. Or at least a first opinion.

Well the biopsy confirmed the cancer.  So I know I have got it. I shall be seeing my surgeon on April 10th but that's for a follow up to my Holep procedure at the beginning of December.  I am rather hoping to learn more about the cancer treatment then.  Maybe he thinks I don't need treatment, I don't know. But if I am not satisfied by then I will definitely seek another opinion.  I've tried several times to contact his secretary but she doesn't reply unless its about an unpaid bill.  I get those the next day!

Prostate cancer doesn't always need treating, weirdly!

It all depends on your general health, age, gleason score and TNM score.

It's also well worth reading the 'toolkit' before your appointment.

I do understand how you feel as I have had a similar situation by opting out of the nhs during the treatment of my prostate cancer. Trying to get back in to the nhs system has not been easy at least not for me. When I was diagnosed last year on the nhs, it was amazingly quick and efficient. Within 2 weeks of the referral from the GP, I had tests, scans , biopsy and diagnoses with treatment options all done. I decided to go private for the surgery ( using my savings) but trying to get back in to the nhs for the 3 monthly monitoring and possible further treatment has been difficult. I finally have a telephone consult booked with urology in late August this year and my operation was done in October 2020.

I'm doing the 3mthly psa via the GP, and have to go to them for any unusual symptoms I've had post op. Unfortunately, this is not ideal as they are not specialist and can't really tell me if what I am experiencing is normal and just part of the healing process or its something that needs further investigation. 

It may be worth your while speaking  to your gp and get them to refer you to an nhs cancer unit, and hopefully seeing that you have been confirmed as having prostate cancer they will see you quickly and review your case. I would get hold of all your scans, test results, pathology reports etc  so that this can be forwarded on to save time if needed. It will also give you an idea of the nature of your cancer.

Its possible that your surgeon doesn't feel the need for urgency after taking everything in to account and that he may be thinking active surveillance is your best options. However, I guess the not knowing and uncertainty doesn't help. 

best of luck.

Thanks for that.  As I said I will be seeing the urologist on 10 April so hopefully I will have a chance to answer questions then.  As for my local GP.....

They don't like you to go to the surgery, any enquiries have to be made via online forms.  I asked in December if I could talk to a gp about my diagnosis and was told very plainly that this was not a matter for them to deal with.  My request for a consultation was refused.  I got a telephone call from one of the gps but there again she would not talk to me about my treatment concerns. I recently requested a PSA test at the surgery (the surgeon asked me to get one done locally as I am some way away from the Cambridge hospital) but that was not straightforward either.  I was told I had to have a referral letter from a doctor.  I pointed out that they have doctors at the surgery and suggested one of them could authorise the test.  They made me an appointment over a month away on 22 April. I have no faith in the surgery and not much more in the NHS.  Come to think of it the private sector aren't doing too well either.

The reason that it's difficult to go to the NHS on an issue you have dealt with privately is a matter of information sharing: If you see a Urologist on the NHS, your GP gets fully informed, usually instantly by shared data systems. Once you go private, the GP is wary of stepping on the private consultant's toes, or duplicating treatment, and  - unless the private guy writes - the GP has zero information ecept what you tell him: clearly, it's a not matter of doubting your word, he cannot proceed without a more 'official' communication.

I'd argue that if you have cancer, the NHS is always the way to go: not only for the better communication between professionals, but also for the power of the multidisciplinary team, rather than the combined knowledge and experience of just one person.

Hi

Yes..I had a slow start up after diagnosis but once you see the urologist things should speed up but keep pushing and try not to be fobbed off.