2 years on from surgery

Hi Gran

That's excellent news, psa undetectable and yes I know what u mean about waiting on psa results after treatment, a nerve wracking time.

U say that the surgeon managed to Nick the prostate, I thought that was the idea, to remove it.

Steve

Hi Steve,

Ideally its best to have the prostrate gland removed intact but the surgeon managed to cut into it by mistake. So fingers crossed that we continue to get undetectable PSA readings

Ok Gran , I thought that's possibly what u meant.

I wouldn't be too concerned, as long as he removed the whole prostate I'm sure that everything will be ok, after all over 2 yrs have passed since the surgery.

Are u concerned that by nicking the prostate would cause cancer cells to escape because it's really the same with biopsy, nicking the prostate and  I was assured that biopsies don't cause the PC to spread.

Steve

It was a she, yes I was a bit concerned and also it had just started to escape out the prostate, thanks Steve, will put pc to the back of my mind, at least to the next 6 months.

Lynda

Hi GrandmaRob

This is indeed great news and mirrors almost, my own experience.

You do identify that his T staging was T3 and this means that the tumour had broken through the prostate capsule.  That the margins were negative suggests that nonetheless the surgeon did  apparently remove all cancerous cells.

The "nick" may not be of any significance.

THE main factor is the PSA!  The fact that your husband’s PSA is undetectable after two years is brilliant.

I fully understand the nightmare you have to go through every six months.  You may find that as the years go by and it stays undetectable then this might improve.  However, it may be always at the back of your mind, (as the six month approaches).

Some key milestones I have discovered in my experience are

3 years post operative  -  even if PSA "recurs" after 3 years, the outlook is significantly better than if it recurs in less than 3 years.  Please note that "Biochemical Recurrence" means a PSA of equal to or more than 0.2 ng/mL on 3 consecutive tests.  Anything less than that is known as "low detectable".

5 years post operative - good news,  I discovered that travel insurance premiums go down again!

My own situation is that PSA became detectable again after 12 months.  It has gone up and down again since, now 7 years.  The general trend has been up.  Last test was 0.1.  This is not a true "Recurrence", but is low detectable.  Furthermore, I also recently read that as the rise has been less than 0.05 per year this is called “low detectable stable” and there isn’t a significant difference between this and undetectable.

However, as a consequence, I have not entirely got used to the six monthly anxiety but like you, put it out of my mind between tests and make the best of my time.  Someone I know who is 10 years post operative, undetectable PSA always reminds me, that there are further treatment options if necessary.

As regards ED, I can assure you this remains an interest at 68, My own experience is more or less the same.  I do not have ED.

Wish you all the best

Please excuse my ignorance but I am assuming that  Tadalafil is a drug for ED,  is this and a pump available through NHS? Or other means?

Tadalafil is a PDE5 inhibitor the same group of drugs as Sildenafil which you may know as Viagra.

Both Tadalafil and the vacuum pump are available on free prescription from the NHS for men following prostatectomy.  Your GP can prescribe "normal dose" Tadalafil, but will probably only give you 8 tablets a month.  That would be normally be OK, but for erectile rehabilitation there is a lower dose "daily" tablet which your GP may not be able to prescribe, but your urology specialist can.

It's not advisable to take the daily dose if you're suffering significant incontinence however.

To get a pump, your GP will probably have to refer you to an ED clinic, where they can assess suitability and instruct you how to use it properly.  Or you can ask your urology specialist.

It's best use both and it's not just about having sex, it's about restoring any damage to blood vessels and erectile tissue caused by loss of function, (however temporary) following surgery.

My urology nurse wrote to my gp who prescribed pump and viagra (varies across country) viagra doesn't work. Gives aweful headache and sinus pain. I'm 50 and too young to become celibate. I'm going to see gp about getting cialis daily.  I found with sinus or I fall asleep waiting for it to take effect

You may find that your GP will not prescribe Daily Low Dose Cialis on the NHS.  This may partly depend on where you live.  I know that where I live the local CCG blacklisted the prescribing of it some years back.  They claim it is "no more effective than alternatives". which is NHS  "speak" for too expensive.

There are possibly 3 ways around this

1. The patent for Low Dose Cialis has now expired, so that other pharmaceutical companies my be producing Low Dose Tadalafil at a lower cost

2.  You could ask your GP for a private prescription, but you would have to pay the full cost of the drug.

3.  You could ask your GP to refer you to an ED clinic where a specialist should be able to prescribe it.

However, if Viagra doesn't work for you, then it is unlikely that Low Dose Cialis will work for you.  Unless you have some degree of spontaneous erection you may be better trying the full dose tadalafil first.

If you've had ED for more than 2 years following prostatectomy, then the chances of recovery, I'm afraid, are not good even with drugs and pump.  If less than 2 years, do NOT give up trying.

Hi! Having had surgery and PSA undetectable after 3mnths. I will be having the six monthly check ups to stress about I guess. 

You say that your husband had nerve sparing surgery. Would that be nerves spared on both sides or just one? I ask as I now have ED problems after surgery. 

Thanks

P