Delay in surgery

Good morning Al985. I’m sorry to hear about your health problems and the anxieties you are experiencing as a result. I have just read your profile and see that, as I understand your situation, you are making a good post operative recovery and.that your cancer staging was that complete cure was hoped for.

now it seems that you are being blocked from getting full information about how successful the surgery was. After all you have been through with the worries about the cancer diagnosis, your liver issues and the surgery, I’m not at all surprised that you are having an emotional response! Just one of these factors is enough to make anyone to, as you say, ‘feel needy’.

The biggest fear you seem to have at the moment is that the cancer might have broken through the capsule as a result of the one month delay in surgery. Prostate cancer is extremely slow growing in most cases so a one month is unlikely to have caused this to happen. But, sometimes at surgery and sometimes after as a result of pathology investigations of the removed prostate they find that the cancer might have been slightly more extensive than the scans indicate. When this happens, men are usually offered salvage radiotherapy to ‘mop up’ the remaining cancer cells.. 

so, what you need to know is the pathology report details and what your post op PSA might be. And this is info you can’t get. You have a few routes to get this info which the prostate cancer nurse is not willing or able to pass on to you:

1. Call the consultant’s secretary and explain the situation and ask for his/ her intervention

2. Ask your GP to intervene.

3. Contact your hospital PALS (Patient Advice and Liaison service) and ask them to intervene.

4. Download the NHS app to see your medical records , results etc. they might not yet be available but you will have access to these in the future.

6. contact the urology services manager and ask for the details you are seeking 

5. if you feel you are not being treated appropriately, you can always send a letter of formal complaint. (My experience of this route is that it takes longer to get a reply which often consists of an apology but little else) It does, though, go 

i hope you get the information you are seeking quickly. so that you know whether the surgeon was able to remove all the tumour or whether you need more treatment ( hopefully the former!)

I hope this helps!

Good morning, and thank you so much for ya. Indepth response.

In phrases that we use around here, my head is a shed. Full of absolute nonsense. I am worried that the delay in surgery might be responsible for the tumour to break out of the capsule. Having said that, I am more worried that they haven't offered me any mop up therapy. I just get the feeling that the surgeon hasn't got his heart in the job and as a result, I am getting second rate care. Because at the very beginning, I questioned the presence of perenniral invasion in the original biopsies the team seemed to have got me down as a neurotic and I fear if I ask any more questions that will just reinforce their opinion of me. They seem to be treating me like i'm a bit of a simpleton who needs protecting from reality.   I did speak to one of the cancer nurses with regards the information that the biopsy showed positive margins and he advised that they only start treatment. If my psa goals above 0.2. I asked if this was a wait and sea situation and he said, not exactly. Not sure what not exactly means because if they're waiting for my psa to rise, then it's wait and see. I just don't seem to be able to put together any logical thoughts andby seeking reassurance, i'm just reinforcing their negative attitude towards me. It is a very vicious circle at the moment.

I i do hope why britain makes some sense.

Al985

Hello Alan (Al985) 

Thinking back to previous posts and this one I can understand where you are at with the continued "lack of support" during your journey.

I think Worriedwife is 100% right with her post - it's spot on advice and on Tuesday when everyone is back at work you need to follow her first 3 suggestions in that order. You need to be calm and clear on Tuesday in speaking with the people involved in your care and set out the facts as you see them.

* Why have you not been told the full histology results after surgery.

* Your PSA Test History post operation.

Don't start off with a list of your previous issues - they are in the past - you need to concentrate on the here and now and where you are going moving forward.

Clearly the "not knowing" is impacting on your mental health and you need to look after yourself here. Anxiety UK can help on 0344 477 5774 or www.anxityuk.org.uk - There's also our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week). Please do seek some support for yourself.

I wish you well here - and remember - you are moving forward - what is done is done and is in the past.

Best wishes - Brian.

Hello Al985, this PC journey is a rocky one! We have hopes that are dashed.We have  worries going round and round at stupid  o’clock in the middle of the night. We have fears and anxieties in abundance! But, just sometimes, we reach an oasis of a bit of peace. I hope you find that oasis soon

Just one more thing I have learned! It really doesn’t matter what NHS professionals might think about our personalities! The most important thing is to be politely assertiveness in getting the care (and results) you need when you need.  What the professionals think about us is their problem - not ours. 

Just to make you smile! One of my husband’s letters copied to him and sent to his GP said, ‘ I saw this very pleasant gentleman in clinic today  - and his wife!’. Interpret it as you wish

Hi and thanks again.

You have given me some sound advice, it's time for me to grow a pair.

PSA next Tuesday but over a month to speak to the consultant. He doesn't see patients twice post op he prefers to speak to them over the phone. Although I suppose he will ask to see me if my psa has risen

I will post my results.

Al985

Hi Millibob and thank you for yet another slice of reason and understanding. I will try to work with worriedwifes advice but it appears every time I raise any questions I end up creating more barriers. I really do think everyone on the team seems to me as fragile and I need protecting from reality. At every stage they have given me a sanitised version of reality and rather than helping it just makes the truth more difficult to handle when it does eventually come out. 

Al985