Confused again

They shouldn’t be using the cured word. No wonder your confused.

Communication is obviously not their forte.

Did they manage to get negative surgical margins?

Ido4 

I don't know that's the first time ive heard that term 

Cheers 

Garry 

Thats a terrible story Gary, how insensitive can a Dr be?

Also they have removed 19 lymph nodes, good news that only 1 showed cancer but what about the healthy nodes that you now without.

I would seriously consider changing hospitals if I were u.

What about side effects 1 month out, do u have any?

Regards

Steve

Hi Steve 

Thanks for the reply the only side effects I have are still a bit of central pain and swollen nuts.

As for incontinence and ed nothing has bad as I was expecting I'm dry at night and have just the odd dribble in the day.

In respect of ed I have been able to get a semi since day 1 so no real problem we have fun but obviously no intercourse yet. 

Cheers 

Garry 

Hi Garry, have a read through this https://prostatecanceruk.org/prostate-information/treatments/surgery

The surgical margins are mentioned but also a few other useful points.

When your prostate is removed the surgeon will take an extra margin of tissue to try to ensure all cancer is removed. Pathologists will look at your prostate and determine whether the cancer had broken through the capsule and whether the area around the prostate is free of cancer. If there isn’t any cancer visible this is a negative surgical margin, if there is it’s a positive surgical margin.  I was informed about this in my follow up. 

Hi Garry 

Here is what I think is the explanation. Many men with low grade to intermediate grade cancer ( Gleason 6 and Gleason 7 where 7 is 3+4) undergo prostate surgery and then have no further problem or else if it recurs it is so late in life that they die from something else. In effect they are cured because their disease was really localized to the prostate, caught in time and was low grade.

However there is also a very substantial percent, maybe 30% if I remember correctly for whom the cancer recurs or in some cases is wrongly staged at diagnosis. These need further treatment such as radiotherapy or later hormone therapy.

I don’t know the exact reason but it seems doctors encourage patients to think they are in the first group until evidence to the contrary is found. That is reasonable. There is therefore an expectation among men that once they have had a prostatectomy they are therefore “cured”. However that often turns out not to be the case, as in my case and it does come as a shock. It looks like the outcome for you is pretty good based on the limited information supplied. I hope that helps.

Ok, well perhaps things aren't so bad then. Try and find out about the margins , think that's the area just outside the prostate capsule, in fact try and get a copy of the pathology report, probably make more sense than the registrar did

Steve

I agree with others, it's probably not good to use the woird "cured" in such a loose manner.

However, I presume that you had a bone scan and whole body CT scan and MRI prior to surgery which showed no signs of spread beyond the pelvic cavity.  If the scans had shown such spread, then they wouldn't have offered you surgery.

If actually during surgery they noted that some lymph nodes were probably affected, and/or the prostate capsule had been breached, removed them and only one had cancer cells, I'd say, if not a certain cure, still a very good result.

As would happen anyway, you will have to be followed up for years and they may offer you some further treatment to make sure they got all  the cancer cells.  The further treatment, if necessary, would include at least radiotherapy.

It may partly depend on your PSA results.  If they  got all the cells then your PSA (after a few months) should be undetectable.

You have/had  "Locally advanced Prostate Cancer".  There is a good Macmillan booklet about this which you can order online from the website

Click Here

Or you can call in at your nearest Macmillan Information and Support Centre (MISC), they should have a copy available or can get one for you.  Normally these booklets are downloadable pdf's. for some reason this one isn't I'm afraid.

You can locate your nearest MISC by visiting this website

Location

I understand that you'd expect to get a great sense of relief after treatment and unfortunately, with prostate and some other cancers, this is not always the case.  A key milestone after cancer treatment is five years.

In the meantime, I hope you are managing with the two main consequences of prostatectomy, i,e, urinary incontinence and erectile dysfunctiion.  If you neede any help with either of these, don't hesitate to ask your urologts or your GP for help.  The latter is the hardest to ask for help with, but if it is of concern to you then you need to start erectile rehabilitation NOW.