When will it stop

thanks for your reply I’m going to ask questions I’ve been reading the cancer can come back after prostate is removed we were not told anything like that 

To be honest they did not explain much at all it’s like he’s in a rush to see next person all that’s ever said is the specialist nurse will explain things and she just shoved leaflets at us I’ve learnt more from on here sometimes with so much being wrong with my husband it’s feels like there thinking not much point in doing anything and yet the hospital were he had his coils are totally different they explain everything and the hospital he’s going at the moment is we’re are daughter passed away so it’s a long story but I have no faith in it 

We’re on the Wirral Ile give them a call 2mo and hopefully get somewhere as like said before I’ve learnt more off this forum than consultants have told us

Where did your husband have his surgery? Arrowe Park?

They can't know for sure, but there are things they can look at to give an indication, such as:

Position of the cancer in the biopsies (well inside the prostate, or near the surface, or bulging out of the prostate).

What's visible on the MRI scan with contrast: again, position in prostate, if the lymph nodes appear to be infected with prostate cancer, if the seminal vesicles appear to be infected with prostate cancer.

A nuclear isotope bone scan is often performed to see if there is any migration to the bone marrow - this is often the first distant place it spreads because the bone marrow cell surface has a receptor that just happens to bind to prostate cancer cells. There are other body scans available too if they still suspect further spread but can't find it in the nearby lymph nodes or bone marrow.

Micro mets are ones that are too small to show up on any scans, and all mets start that way, so there is always a risk those are present and will be missed. The likelyhood of these can be estimated by the extent and grade of the known cancer.

Edited by member 14 Apr 2019 at 22:41  | Reason: Not specified

Holmsey

Hello again, google "Wirral incontinence service" it has contact details, it does say you may need a referral from a GP or other professional, but give them a call, you may already be on their system. Doing pelvic floor exercises may well help,  some guys say they help some say they are no help, doing them correctly is important and your incontinence nurse should be able to help, I used a phone app that had a variety of long and short exercises. Don't do this on a regular basis, but can he stop the flow of urine mid stream. If he can it shows that the mechanisms he has left are already in working order.

Getting the right pads is essential, I was given Tena 2 pads and they would hold a  sudden 150ml leak, how ever Tena have changed their products and you would possibly need Tena 3 for the same  absorbency. Snug (not tight)  fitting underwear will help keep the pad close to the penis and help eliminate leaking out the side of the pad. 

Leakage when standing up is quite common, learn to squeeze the pelvic muscles before standing and stand  up slowly. Providing the lower sphincter is not mechanically damaged,  with exercises and training he should be able to regain his continence. Going forward there are lots of options to deal with incontinence but it is too early to start thinking of those yet. 

Let us know how you get on. 

Thanks Chris

Basically, your husband will need to relearn how to control his bladder, much as a toddler does when they are being potty trained - at first the brain can't read the messages from the bladder, then it can but only when really concentrating, and then bit by bit it becomes less effort.

When I used pads a couple of years ago the Boots brand were larger and held a lot.   The Tena pads were more stylish and thinner but I didn't think they were as good.  The Boots one's are cheaper and you can buy a big packet.  I bought a big packet and had to throw most of them away as it suddenly got a lot better.

I think they were 5 drops or might have been 6 drop standard.  They were warm as well.

I'm not sure if this has been answered but when you see the doctor you will want to know what the pathologist found such as:

Stage

Grade

psa

Margin positive or negative

Location and size of tumour

There is more if you intend to be an aficionado.  You could ask for a copy of the Pathologists Report although you might frighten yourself.   Must admit I haven't asked for it, I just know the above.  My grade was upgraded after the op to Gleason 4+4, with the op you get to know about the prostate from a thorough examination while it's in the lab and cut into slices.

My doctor forgot to ask me to do a psa test and I had to ring in for the form and the plastic bag which you take to the blood sucking ladies a week before your doctors appointment.  Some hospitals don't supply a plastic bag they pack it after the sample is taken.

Edited by member 16 Apr 2019 at 15:02  | Reason: Not specified

Don't forget to ask the Macmillan nurses if they do a Holistic Needs Assessment (HNA). This is a really good opportunity to go through all the issues that might concern you now or in the future, and get support lined up to address them, which can make life much easier. As soon as my GP surgery got the report of the cancer diagnosis from the hospital, they wrote to me offering support, etc, but they really emphasised the value of the HNA and said don't miss out on it when it's offered by the Macmillan nurses, and they were right.

But thank you I will ask about it I’ve learned more off here than off hospital or doctors

When he had catheter out it was hospital that told him the date to have psa it was the specialist nurse that gave results she is the one that sits in when he sees his consultant Ile give them a bell in morn but the Macmillan nurse off the forum gave me a number to ring there sending him out information and said the pelvic floor excersises are on YouTube aswell so he’s had a look at them which is good thank you for your reply x

Thanks for reply I ment no one has told us about incontinence or wat to expect at next appointment and wasn’t told you could still get cancer after prostate was removed I’m sorry your husband it getting it once is bad enough don’t no how you coped with twice and don’t really understand the t grade I we thought it was just Gleason if you don’t mind me asking how can they tell it’s contained in prostate as I am at a loss and is 5 weeks after op to soon for psa as Ile ring them if it is