"Agonising wait for PMSA Pet scan"

I would like to highlight a distressing and entirely unexpected situation that myself and my family find ourselves in.

In early September my loving, precious husband and dad of our three amazing kids was watching breakfast tv and there was a segment advising all men over 50 to approach their GP to request a PSA- a simple blood test which is an indicator for issues (both benign and malignant) with the prostate gland. My husband, being proactive did exactly that. Our GP called to advise that she was sorry to tell him his PSA was 43, substantially elevated. She advised she would refer for further investigation and to urology for urgent review.

An appointment came through later that week for a bone scan (mid October) and an appointment with the urology consultant the following day at a waiting list clinic. At this point, we were both feeling relieved that NHS Lanarkshire was all over this and thankfully my husband had been pro-active.

The radiographer at University Hospital Monklands (UHM) on the day of the bone scan was superb. Upon hearing the appointment with the urology consultant was the following day, he went above and beyond to speak with the radiologist to have the scan reported and available for the following day.

We then both attended University Hospital Hairmyres (UHH) the following day to see the urology consultant. His approach was very honest and he advised the prostate felt ‘abnormal’ and he would refer for MRI and TRUS (transrectal ultrasound scan) biopsy and get a further PSA. 

MRI was confirmed for a few days later with TRUS biopsy arranged for the following Monday. You can see looking at this timeline why my pride in NHS Lanarkshire is not misplaced!

When we attended for TRUS biopsy, we were both floored to be advised by the Urology Nurse Specialist and Consultant that despite our beliefs that this diagnosis was caught early, there was advanced local spread with seminal vesicles as well as lymph node involvement and that the majority of the prostate appeared abnormal on MRI. Bone scan appeared negative for bone metastases. They were both fantastic in their approach and very supportive. The consultant that day advised he already had my husbands name on the Multi Disciplinary Team (MDT) discussion list for 1st November before performing the TRUS biopsy. We had an appointment confirmed with the Lead Urology Cancer Nurse Specialist the following day to discuss the outcome of MDT:

All biopsy samples were positive for prostate cancer

Gleason score was 4+5=9

70% of the total tissue sent to labs was involved

Current PSA was 50.1

All of this places my husband in a high risk group

The MDT had discussed our case at length, taken into consideration his age, lack of any co-morbidities, general fitness and decided they would take an equally aggressive multi-modality approach to treatment. Consultant would request a PSMA PET scan and if this was clear for bone metastases, the surgical team in Glasgow would consider a robotic radical prostatectomy. My husband was also referred to the Consultant Oncologist for consideration of best adjuvant approach with/without surgery. Again, the person centred and assertiveness of the MDT in throwing everything in their arsenal at this is to be totally commended.

This has all been as diligent, proactive and (controlled) chaotic a time since GP appointment to now, as it reads.

However, now we are left…….waiting……agonisingly waiting…….

The referral was made on 2nd November. We were advised the scanner only operates on Wednesdays but would not be operational on 9th initially. Advised on 11th that scanner will not be operational on 16th either due to lack of adequate patients on list. There is no commitment as to when the scanner will operate. 

Surely it is within the gift of NHS Scotland and the Scottish Clinical Imaging Network to take a cohesive and collaborative approach and have one scanner running between the four sites in Scotland regularly enough that patients do not have this agonising and potentially catastrophic wait.

I note in the recent Scottish Clinical Imaging Network (SCIN) waiting list report the addendum that PSMA (Prostate Specific Membrane Antigen )scans are not included as they are booked in advance to differing waiting time standards. Is the standard fit for purpose and justifiable?

I find this to be an abomination as every patient on that list is precious and this goes against every value and the entire ethos of our NHS as an institution. I am sure there will be others in my husband’s position of this scan being crucial to planned recovery and positive outcomes or the unimaginable alternative.

The Royal Marsden in London and Sutton offer this scan privately at great cost. Despite additional efforts this week of the consultant and nurse specialists involved to have this expedited, we all had to admit defeat on Friday and my husband’s current clinical record has been sent to The Royal Marsden.

We would absolutely travel to an alternative NHS site in Scotland to have this scan if it was an option. If payment was required to do this, we would be more than willing to put this back into our NHS in Scotland. 

I am concerned as we enter winter pressures, with strikes on the horizon and the ongoing effects of covid that pressures within our NHS will substantially risk further delay if we can’t get this treatment off the starter blocks as soon as possible. All other options are not on the table in the hope that surgery is. In the meantime, these cancer cells are left to proliferate unhindered by any active treatment.

My concern is obviously first and foremost to achieve the best possible outcome for my cherished, young and otherwise healthy husband but he will not be the first or the last of our NHS patients and their loved ones to face this anguish and distress.

I therefore implore you to do anything you possibly can to support us in progressing with this equally critical and pivotal investigation. We are left here meantime waiting, petrified and facing an uncertain future.