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Removal of Prostrate

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User

Posted 27 Jan 2016 at 13:39

Sorry do not know what a tag is.

I have Prostrate cancer. I have had a bi-op to confirm this PSA over 190. I have had a lot of pain this last 2 years. Intense these last 2 months. I would like myself to remove the prostrate. It makes sense to me. I dont need it its full of cancer and apart from that it restricts my urine flow to zero. I have discussed this with the hospital my wife is with me all the way. We are 58 and not having sex will not damage our love for each other. We have other things far impotent to do with the rest of our lives.

The hospital is resisting mainly because of cost I think and the fact I am only 58. I want to survive this I dont want anymore Prostsrate problems after the intense pain of the last 6 months.

Has anyone else out their had their prostrate removed Could let me know more

Thanks

Island Butty

User

Posted 27 Jan 2016 at 19:02

Hi Island Butty.

|I doubt very much that they are resisting the op because of your age - young men like you are more likely to have surgery than the older guys. They will not operate if they know or have reason to believe that the cancer has already spread - this is because you would then have to deal with all the side effects but the cancer would continue to spread anyway. They will probably be able to advise you better once your bone scan results are back - if the cancer is fairly local to the pelvic area, you may be able to have radiotherapy, if it has spread further they will give you hormones to starve the cancer cells. If when they give you the results it is only in the prostate you can ask to see a surgeon to discuss whether you can have the op.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Jan 2016 at 19:25

A bit premature to jump to conclusions until outstanding scans enable a full diagnosis to be made. Suggest you ask for this when available and then discuss results and treatment options with your Consultant. Meanwhile, I would recommend you obtain a copy of the 'Toolkit' from the main part of this Charity site. You should find it very helpful.

Barry

User

Posted 27 Jan 2016 at 19:49

Hi Island Butty

It is totally understandable that you feel that by removing the prostate all will be well but I am afraid that it is not necessarily that simple. Lyn has summed it up nicely and difficult as it is,you do need to let yyour team complete their investigation.

I have had the prostate removed but there are still cells floating around somewhere that need to be dealt with other forms of treatment.

Hang in there and have the discussions about what to do when all the information is available. I am one of the lucky ones who has not suffered any symptoms and so far has only had to deal with the after effects of the op so I feel a bit of a fraud in comparison to you

All the very best

Kevan

User

Posted 27 Jan 2016 at 20:11

My problem is after the two years I have had it with the NHS I do not trust the NHS. at all. My respect for the NHS has gone out of the window. I am scared of the NHS, to me it is just experiment after experiment. I have decided enough is enough and the last thing the NHS is going to do is help me. I am being honest here. The NHS is not fit for purpose I am already dead they have decided. I am not interested in anymore of their experiments. They remove the Prostate or I not allow anymore treatment. Not that there has been any treatment so far. The only treatment I have had so far is 9 catheters since October. In out in out. A hell of a lot of pain. I must be too expensive to treat. Fine but I die on my terms not theirs. Too many experiments no treatment fine I am out. I dont want to know anymore.
Having paid into the NHS for so many decades I always thought if I was sick I would get help. Not so I am afraid. One can only take so much and once you have lost faith in the system like I have nothing else to do.
NHS care are two words that do not sit together. The NHS its a farce now because the doctors and nurses are not qualified or are run by drugs company not driven by care. That is how I feel now.

User

Posted 27 Jan 2016 at 22:38

I've welcomed you under the Talking about Sex section by Admin.

I can see by your post that you are totally frustrated with the NHS and by your treatment under it.

There have been a few discussions on here regarding hospital treatments and you are not alone in being disgruntled by the apparent lack of care.

If you have a genuine grievance with your care then you have the right to contact PALS at the hospital that is treating you and you can give them chapter and verse regarding the lack of treatment and care.

If you don't complain then there will be no change in your care or in anyone else's.

In some areas the NHS is a farce, in others it's wonderful and people cannot speak highly enough of their care and treatment. It's unfortunate if you live in the duff area but it will never rise above it's current limitations if it's allowed to continue as it is, so take it up with the right department. Don't assume that nobody will listen because you are complaining to an NHS department about NHS. They are (or should be) independent.

Please give it a go if you haven't already. You owe it to yourself and your wife to get the best possible care. If you think you aren't getting that then ask WHY! Don't ask, don't get.

What experiments are you talking about?
Have they explained to you (and would you share with us) the reason they say you cannot have or they advise why they can't offer you a prostatectomy?

You have obviously felt the need to have a rant at the NHS and I can understand your frustration and I hope that if you take up your problem with PALS then some form of resolution can happen.

Best wishes
Sandra

Edited by member 27 Jan 2016 at 22:39 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 27 Jan 2016 at 23:24

Hi again,

Firstly, something I meant to say previously but omitted to do so. You have given a full name under you profile which might be your real name. If this is the case I would recommend you change it to just 'John' or whatever in the interest of security.

As regards your latest post, it is understood that one tends to judge the NHS on ones own experience which is not necessarily representative of it nationwide. There are as we know good and bad experiences as well as good and bad doctors and hospitals. The NHS struggles to provide a good service on it's funding and resources and it is inevitable that in some cases it falls short of what patients expect and certainly delays are often too long. Also, naturally anyone diagnosed with PCa is going to be upset, we understand that.

However, you have and are in the course of having a complete diagnosis and will be offered appropriate treatment options after your case has been discussed, usually by a MDT (Multi Disciplinary Team). They are in the best position to inform you of your options. By saying that you want your prostate taken out or nothing done, you are showing how little you understand about this disease and treatments because it is possible that a Prostatectomy will not be offered if it serves no useful purpose, (not because it is expensive), the disease having spread outside the Prostate. I suggest you carefully consider what you are told and don't go to an appointment with any uninformed and preconceived ideas. Of course it is your right to refuse any or all treatment should you so decide.

Edited by member 27 Jan 2016 at 23:32 | Reason: Not specified

Barry

User

Posted 28 Jan 2016 at 19:23

Originally Posted by: Online Community Member

And this adds to your problems in my view. I accept that you may feel that you have been short changed by your local NHS, and I accept that you have been short changed by your local NHS.

The issue now is how do you move on and overcome the mental anxiety associated with your total mistrust and suspicion of them? Mental attitude and state are important as you battle PCa. If you approach every medical professional and appointment with the mindset you present here and now, then you are on a loser before you start.

Can you speak to someone to discuss your feelings and may be rationalise what you feel? I know that some Doors can be crass and insensitive and actually wrong when they tell you about your situation. I had one Onco tell me I had a PSA that had apparently doubled, and when I expressed concern he told me, and I kid you not, "There is no need to jump off a bridge yet". Oh how I chuckled as he was telling me that my operation had apparently not been successful, my PSA was increasing at an alarming rate, Ha Ha Ha, and PCA was attacking me again and maybe for all I knew I would die shortly.

A letter of complaint revealed that the idiot Onco had misread the results figures.

Please, try to get your head around the fact that not all NHS staff are bad, not all NHS facilities are bad, and in the absence of private health care, it is all we have to help us get the best out of what is left of our lives. Viewing, treating it and them as the enemy, that can not be good. Talk to someone about how you feel, it may help? It may not, but worth a go?

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 29 Jan 2016 at 23:56

Seems to me that you are very angry.

This is probably not helpful for many reasons, not least because it gets in the way of finding treatment. It hinders a recovery because your body is in a state of constant stress.

Try to focus on what is important. Ask for a referral to a different hospital. Contact the PALS at your current hospital to raise a complaint. Ask your new urologist to sit down and explain to you why they consider you inappropriate for surgery, and what all the available options are.

I understand you feel you have been treated badly, but you cannot judge 'the NHS' by the actions of a few. It's offensive to the majority of those who work very hard.

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