Starting to worry a bit now!

Not on any treatment at all Lyn!, told no hormones until PET scan done in case it makes scan miss nodes that have shrunk etc. That's why I'm getting so mad, I was diagnosed start of the month, no treatment and keep getting cancelled,   if I was on hormones it wouldn't be so bad waiting because I know they stop growth.

Rung the PET scan team today at Notts City Hosp and explained my frustration at being cancelled twice on the day + that I was not being put on any treatment at all until this scan was done + what if any was the back up plan if I'm cancelled again. She was really nice to be fair and said I was booked in for 10th now, I asked if I could be bumped up the priority from any general scans and she said that 10th was earliest as they only scan on certain days! She said I was on a standby short notice list as I said I would come at anytime. As for any backup plan.......there is none!!!

So 29 days after being told I have local advanced  PCa and PET referral I MAY get a scan if the tracer arrives if not I just have to wait again!

Like I said to Lyn I am on NO treatment atm not even hormones because they need to see what the PET scan results are to tailor my treatment.

You couldn't make it up!

Edited by member 01 May 2019 at 12:07  | Reason: Not specified

I was supposed to start hormone therapy in October 2016 but my oncologist wanted a PET scan done to see what was going on. Promised me it would be within a couple of weeks. Like you he wouldn’t allow HT to start as the scan wouldn’t pick things upon I was on HT.

I didn’t get a scheduled scan appointment until 20/12/16 and had to wait until 21/12/16 as the tracer failed on the 20th.

I had gotten so wound up I had the bicalutamide at the ready to take when I got home from the scan.

When I saw the oncologist he said he hadn’t realised they only scan 2 or 3 prostate cancer patients once a month and apologised about the delay!

It is beyond stressful and I don’t think my oncologist realised how much. Hope you get your scan over and done with on the 10th. Telephone to see if they can prescribe HT to start after your scan on the 10th.

Best wishes.

However, there seems to be no shortage of Uranium-235 or Plutonium-239 when required for nuclear weapons, so I guess it’s just a question of lack of money invested in the production of these tracers, together with a 20% increase in population and commensurate increase in demand for NHS services.

Why doesn’t the multi-billion pound NHS invest in their own cyclotrons or whatever, (and proton beam machines for that matter), rather than outsourcing them to private companies?

This nuclear medicine, as it is called, is at the cutting edge of technology.

Anyway, I was diagnosed with G7 cancer in January 2018, and I explored all my options until my prostatectomy in June 2018. They say PCa is often slow-growing, and yours probably is, so a few weeks here or there are unlikely to affect your prognosis, but not your nerves!

Best of luck, once again.

Cheers, John.

I have found the NHS to be brilliant in my case and with others, but I find you have to be completely proactive to get things done satisfactorily. A phone call to the consultant’s secretary is usually the first port of call.

Best of luck tomorrow, and if successful, the scan will give you and your medics more idea of where you stand.

Cheers, John.