Monday 26 June 2023

Don't let failing NHS bureaucracy derail your cancer treatment - Rog T's Cancer blog

I would have probably posted this blog last week, but I had dedicated the blog to the Mill Hill Music Festival diary for the duration of the festival, so regular features did not appear. Regular followers of this feature will know that I had some less than welcome news in May. The HIFU team at UCLH had told me that in light of an aggressive development in my prostate, I was now going to need either surgery or radiotherapy. This was dependent on the result of a PET scan. This was required to ascertain whether the cancer had broken out of the Prostate.If it had, then the option would be hormone therapy to manage the condition. I was passed to the Oncology department of The Royal Free for a consultation and told that the PET scan would be arranged withing 2 weeks. An appointment with the Oncology team was arranged for Tuesday 13th June. I was advised that the PET scan would be done before this and the surgery team would book an appointment once the results were available.

The only problem was that the PET scan wasn't booked. Apparently the doctor who raised the order 'made a mistake' and the order expired. This meant that I hadn't had a PET scan by the time I saw the team at the Royal Free. I am not one to sit around waiting. I had been actively emailing and phoning, all to no avial. The team at the Royal Free saw me, laid out the options. If it had spread I'd be under them having a life on hormone therapy. This would hopefully keep the cancer at bay, but is in effect chemical castration, as prostate cancer is a hormone driven cancer. If it hadn't, I'd have six months of hormone therapy then six weeks of intensive daily radiotherapy. After that, it would take up to a year for my hormone levels to return to normal. The side effects are a 1-2% chance of a radiuotion linked cancer in 10-15 years. There is also a 30% chance of incontinence/impotence/infertility as a lasting effect. 

The Royal Free said they'd chase UCLH for the PET scan. Eventually I got a pet scan on the 15th. This involves being injected with a radioactive dye. I was informed that it was completely safe but I should avoid pregnant women and children for a minimum of six hours, as I could damage them. Once I'd been injected, I had to wait 90 minutes for the dye to work it's way around my body, then I had the scan. It took nearly an hour and was not particularly comfortable or pleasant, but it is a necessary evil. 

The waiting for the test and the cock ups with the booking had caused me a significant degree of stress. Once I had the scan, I then had to wait until the following Tuesday for the results. In the meantime I'd received the results of my latest PSA test, up from 10.6 in March to 12. All in all, my anxiety levels had risen to a very high level. In some ways I was glad to have the festival to think about. The PET scan will detect other, non related cancers as well, so I was actually very paranoid about the matter. 

On Tusesday UCLH called to book a surgical appointment. They could only offer me Friday last week, which was a day I was fully committed to the festival, so I deferred until this coming Friday. I was told the appointment was at 9am. I then received a follow up call. Because I'd had HIFU, the procedure was more complicated and I needed to speak to a surgeon qualified to do the procedure. The appointment was shifted to noon. I asked about the PET scan results. They said they were in but couldn't tell me. This was rather frustration. On Weds morning, I received an email to say that it was good. 

With this, my anxiety levels returned to normal. In some ways, I'm lucky. My MRI was originally due to take place in July, so I am ahead of the game. It has taken me three months to get to the position of having my consults, as biopsys and PET scans were required. I am ahead of the game, but I have to say that I am not happy with the bureacratic cock ups and the talk of 'backlogs'. I have always been of the opinion that the NHS was good at dealing with serious issues. I am starting to think this is no longer entirely true. My advice is to make sure that you are not fobbed off by the bureaucrats. It is your life. The medical staff are wonderful, but to the people scheduling appointments etc, you are just a number.

--- About this feature
For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life.  For those of you who aren't, here's a quick summary. I'm 60 years old and in October 2011 I  had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I was put on a program of active monitoring.  In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0,  February 2015 it was  up to 5.5  and my latest in August 2015 was down again at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October  which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive. A  PSA in October 2019 was 4.6, so stable and good news, the last in May 2020 was 5.45 a small rise, so worrying, however after a review against the most recent MRI, it was decided that this was fine. My two latest ones in February 2022 was 6.7 and October 2022 was 6.6 was stable. My MRI in March 2022 showed 'a change' so I am now awaiting a biopsy. I had a PSA test in late March which also showed a marked increase to 10.3. I had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSa test in June saw a rise to 12. I've seen the oncology team and am awaiting a visit to the surgical team to discuss the next step. Thnis are not great but they are not dire either. 

 I've no symptoms apart from needing to wee quite regularly and sadly for a few people, if I'm gonna die soon, it (hopefully) won't be from Prostate cancer. Got the picture?

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