Post prostatectomy follow up appointments

Hello GR1 . I think your avatar should be amended to GRRRRR1 as you have not been given the care you should have had. I have checked the NICE guidelines and come across this.

4 Most patients require follow up as below; those with a high risk of
recurrence may require more frequent monitoring:
o 3, 6 and 12 months for the first year
o 6 monthly for the second and third year
o annually thereafter in line with Network follow up guidelines
15.5 Patients require the following at each follow-up review:
o clinical/symptomatic assessment
o serum PSA test
o assessment for erectile dysfunction and incontinence issues
15.6 The following should be observed for/actions should be taken:
15.6.1 After radical prostatectomy, a serum PSA level of more than 0.1mg/ml or
three consecutive rises with ultrasensitive PSA, should prompt referral for
salvage radiotherapy if appropriate.

If you are not getting a response to any of your enquiries then you could try contacting your local MP - this usually sharpens their pencil.

Thank you for your reply, which is what I had also picked up in my research.

Our MP, who was elected with a majority of just 355 is only interested in towing the party line. I sent him an email link about a prostate cancer meeting that was taking place in Westminster and I received an automated response saying I would get a full response by a date that was later than the meeting.

The fool has a facebook page which he uses to promote himself and it's littered with complaints about him not replying to his constituents. Funnily enough when I had a go at him he actually replied saying he was going, whether he did or not I really don't know.

All I know is that he gave up a career as a nurse to become a useless MP.

Hubby doesn't like to rock the boat, so I have to his secretary.

Oh I really do think that is terrible the way you have been treated GR1. I had  my op 2.5 years ago and have had excellent attention from everyone involved from the Consultant to the tea lady. What I would add to Alwayshope response is to speak to your GP to air your concerns and see if the GP can get you an appointment. This is not just all about physical matters this could also affect mental health. It is great your OH PSA has remained undetectable and I guess there are no issues as far as that is concerned, assuming your OH is not suffering from any problems. But there is a lot of reassurance to be found in knowing that a professional team is watching your back and available to answer any concerns. My first appointment after was with my Consultant who gave me a run  down of how the op went and advised my lab result was zero margins. That was a very important appointment for me. Regarding daily Tadalafil, I was prescribed 5mg every day. My prescription was for two years. I am planning to continue to request them until and if it is blocked. So fay my GP has not queried it. Regarding PSA tests I have been having them every three months at my GP surgery, under instruction from my CNS.

Amazingly I have had some communication this morning. I am a member of a local urology support group and I posted an anonymous request for the consultants secretaries email address.

This morning the Macmillan Nurse who'd not replied to my husband’s email had replied to me in Facebook asking me to send her a private message. She told me that he doesn't have a secretary right now. I copied and pasted the email to her and she's going to look into it for us.

My husband had that first appointment too, with the consultant in September 2023. His next appointment was due in January but he received a blood form with instructions to get it done in November and he got this done. When he got the appointment for January he emailed the secretary and she said the blood form had the wrong date and he needed to have another test a week before his appointment, so he organised this. The appointment was then cancelled. In March he had a telephone appointment which he thought was his rescheduled one, but it was a follow up with the ED Nurse. She emailed the secretary and he got the appointment for June. 

His tadalafil is on repeat prescription so he can continue to get that. The only issue with that is they only give him 28 tablets but say his next prescription is due in a month. He had one request rejected because we were going on holiday and he'd requested it early. Taking the tablet once a day means that they only last for a month in February as long as it's not a leap year. If he takes them daily and quadruples the dose once a week omitting them one day before and one day after he needs 8 tablets a week.

This has been pointed out to the GP on the notes that accompany the online request for a prescribed but it appears that no one reads them.

I really fear for sufferers who don't have the knowledge and ability to look out for themselves.

This sounds very disturbing as I am experiencing similar problems if not quite as extreme. My problem is the so call cancer support nurse who's title is so inappropriate. I have contacted her to request my review be brought forward and she blatantly refused. My GP has become involved but still no appointment. I am so shocked that this can happen. I am reluctant to go down the complaint route, as my care will be handed over to the cns, nurses. I have considered asking for my care to transfer to another hospital. What was advised not to do so by the Macmillan help line nurse.

It's a mess.

I fear that things are going to get worse when the 50% reduction in management and admin support goes ahead. 

At one of his hospital appointments I witnessed how the staff on reception were working and it was clear that the majorly were agency workers and they didn't know what they were doing. They insisted that my husband had a flow test even though we knew he didn't and said he couldn't see the consultant if he didn't do it. As he'd been to the toilet already they made him drink loads of water and wait until he was able to pass it. This meant that what should have been a quick appointment turned into a much longer one. When they eventually checked with the consultants he confirmed that he didn't need to have the test and they had to slot him and cause a delay to other patients appointments.

I also witnessed another member of staff enter the department and they asked themselves what they were there for, before picking up a form from a rack and disappearing. 

I have experience working in a hospital setting as an administrator, including managing a team of administrators in a Prison Health care Centre. I know that many NHS  nurses and Dr's moonlight and do agency work, which is very expensive. I found it quite insulting when they said they had to do this to make ends meet, when I knew that they were being paid more than I was. As we were dealing with prisoners our duty of care was even more important and on occasions I rang from home in the evenings to check that the nurses were following pre appointment instructions, only to find that they'd not done this and wasted a hospital appointment.

I fear that they will get rid of the 50% who actually know how to do their jobs and we'll be left with the dross because they're cheaper.

Sorry for the rant, but it makes me cross.

Our whole experience from the start isn't good. After asking for a PSA test which is his right he was fobbed off by our GP surgery and it took 2 months. At that point he was referred for an MRI and fast track urology appointment. By the time he got the diagnosis 3 months had past. When he checked his GP record online there was an abnormal test result dated 5 years earlier, but he couldn't remember having a test then. When he checked again the test had been removed, so we assumed it had wrongly been put on his record or they were covering up. They claimed that they didn't have the ability to remove this l.

At the same time I checked my record and found someone else's mammogram follow up results, but mine was missing. When I raised this I was told that they would remove it and chase up my results, which they managed to do. 

My husband put a complaint into the surgery and was told that he would get a response within 10 days. Nearly 2 years on that response hasn't arrived and the practice manager has moved to another surgery that was failing and somehow they're no longer failing.

My husband is just relieved to still be alive so he's let this go, but I would certainly have taken this further if the unthinkable at happened. 

So in a nutshell I wouldn't get the GP surgery involved as that would be another level of incompetence to cause more confusion.

I am very lucky in that my GP is young, enthusiastic and most importantly Caring.  People like him are few and far between and I thank God, if there is one, that i have home on my side. I  will only see this gentleman?  as you have said about your g. P's, they are disinterested and penny pinching, there's very little interest in patient care. It is a business, and that is all.  they just happened to choose this rather than accounting or banking. 

A surgeon who did the operation appears to have done a good job.And she's only the nurse that's causing me the issue. All she had to do was pass on my concerns of the g. P and for whatever reason she chose not to.

We have got everything sorted today. The cancer support nurse saw my post on the local urology Facebook support group and asked me to message her.

She sorted out his tadalafil query and we got a phone call to arrange his appointment.

She said if we have any more issues to message her and she'll help.