Advanced prostate cancer, spread to bone.

Hi,

Sorry to hear about your family's awful experience.  Waiting for tests, scans, results and reports from Multi disciplinary meetings etc. is always the worst part of this. 

Some people are kept on HT for up to 2 or 3 years after the radiotherapy some are not.  It can depend on many things not just the spread of the disease as seen by all the tests and scans at the time but also down to the practice of the health board, the hospital and the oncologist bearing the actual state of the disease in mind.  I was not kept on HT after radiotherapy and had HT for 6 months prior to radiotherapy and had my last 3 month injection just before starting radiotherapy.  HT for at least 3 months or longer before starting radiotherapy is usual and should bring the PSA down, halt the spread of the cancer and weaken the cancer cells so that the radiotherapy is more effective on the cancer cells.  For information my PSA was just under 13 at diagnosis my Gleason score was 7 (3+4) and staging was T2N0M0 (but T3 stage could not be ruled out as the tumour was seen to be bulging out of the back of the prostate on the MRI scan and looked as if it was either about to break out or possibly had done so they could not rule out microscopic spread of the cancer into the local area - which would not necessarily have shown up on any type of scan.  Thankfully radiotherapy to the whole area to "mop up any escapee" cancer cells - if there were any seems to have worked so far.

When in pain from the site of cancer spread sometimes a one off dose of radiotherapy is often given to the site which seems to work.

As for getting scans and appointments quicker let the department, consultant's secretary or whoever at the hospital know that you are available at short notice for an appointment that has either been cancelled or is a no show letting them know how quickly you could get to the hospital in those circumstances.  I was lucky as I could get to the hospital where I had my scans in about 20 minutes and had my MRI within 3 weeks instead of the predicted 6 weeks as I got in on a cancelled appointment - they rang me at 10am to say there was a cancellation at 2 that afternoon.

There is of course the option of paying for scans and blood tests if you are able to so if there is a private hospital in your area that performs those scans when told by the consultant that you need such and such a scan ask if there is that option but go on the NHS list but then contact the private hospital and ask about price and availability then if everything is suitable and affordable cancel the NHS appointment - these days a lot of the private hospital facilities are used for NHS patients paid for by the NHS so sometimes their waiting lists are longer than they used to be.  Last year I had to wait a month for a private consultation with an Electrophysiologist whereas prior to Covid the longest I would have waited was 10 days at the most.  I am lucky as my wife started paying into the post office and Civil service's friendly society now called Benenden which will reimburse consultation fees and payments for tests and scans - with prior approval up to one thousand five hundred pounds, and they will fund some operations or make partial payment.   I think last time we paid an MRI was 800 - 1000 with contrast dye - I think and a PET scan was 1500 pounds howver this is going back to 2016/17  consultants charges can vary from 200 to 350 depending on hospital and consultant - if he's a professor and has to review NHS tests, scans and biopsies with his team which have to be sent to their lab this can cost more.  I did this at the Royal Marsden and it cost 600. 

I hope better you all get better service from now on.  Never underestimate the effect of "pester power" either.  If you wait 2 weeks and have not heard about an appointment - an acknowledgement at least then call the department on particular consultants secretary - be polite and just ask if they have received the referral or request if they have not check with the originator GP, consultant or whoever and ask if it has been sent.  If it has then wait another week and call the department again.  I have waited months for one minor procedure only to find the GP had not actioned it.  As soon as it was actioned it was done within weeks.  Always be proactive and polite and check on these things.  Another good tip is to ask for letters from and to consultants and referral letters to be copied to you.  I always offer to pay an admin and postal charge for these but so far have never been asked to.

As you do not seem to be getting really good service you may wish to contact the hospital and put this in wiriting - you may find that all of a sudden you get some of those appointments you are waiting for much quicker. 

All the best.

Hi liesbet

Sorry he’s going through all this, covid has not been kind to any of us, I still wear my mask when out.

Scans are really important, I’ve had a fair few of them and x rays, the pain at first sounded like it was the hormone therapy, it can certainly do that to you, I was very fit, I get out of breath having a shower now. Getting information has never been a fast process, I see my specialist nurse every three months, usually a week before I get the letter from my last visit.

As freefaller says be persistent but be careful how you push, like don’t be obtrusive, keep pestering and sooner rather than later, they will give you what your searching for.

Now even if the cancer has spread, there are plenty of new medications out there, he will still be with you for many years I’m living proof coming up to my sixth year. So the team will provide the best treatment he can have when all results are formulated, keep positive.

Stay safe

Joe