active surveillance

Yes, I agree with what you say AW

Best wishes 

Steve 

Hello Everyone

I have my views on AS and they are well know - I don't like it. (Personal view not Macmillan's) and I have had a bit of a conversation about this before here

 RE: Life Insurance 

It's still my firm view that Jack need's to do something now - but not perhaps be pushed into surgery.

Your thought please?

Best wishes - Brian.

Good morning AW. A good question and one we have asked ourselves. For many years the PSA was only rising by about 0.2 to 0.5 each year which is below the threshold for concern. Also the biopsies only showed as ASAP and PIN. Family history of cancer and his father who died after a Prostatectomy should have warned us. When hubby was diagnosed in 2020 the urologists first words were 'I don't believe it, it can't be possible' - a real Victor Meldrew moment. Hubby is one of those oddballs whose cancer developed very quickly without the normal markers for a high risk cancer. We had a similar situation with his recent pulmonary embolism where the only indication was a sudden breathlessness but heart function and bloods were normal for him, nothing on ECG, oxygen levels normal but the CT scan showed up in both lines plus top and bottom of the lungs. My personal opinion is that if he had exhibited any medium risk factors then we would have done something about it and gone down the Brachytherapy/RT route which might have been without HT. Hindsight is great and I do believe that prevention is better than cure ( or not cure as we are dealing with).

Hi,

I do have problems going to the toilet especially at night. I think my record for having a pee is an hour (that's getting up in the night and then basically sitting on the toilet for hour before feeling comfortable enough to go back to bed and to sleep). I am getting to the point where a feel I'm at the risk of a bit of incontinence. Nothing embarrassing yet thank God, but it's a worry.

The other option is to have an operation to remove the cancer, but the side effects could incontinence and erectile dysfunction which I'm told should be temporary if it does happen after the operation. 

I'm speaking to the doctor today and I do want to talk about medication to shrink the prostate and hopefully give me better urination. 

Hi Alwayshope,

Thank you for replying to my post and thank for sharing your story. 

I'm trying get my head around the article with all its jargon, but I'm getting the gist of it

Hi sorry to hear of your ongoing problems .  I don't want to be negative but if you read our profile my OH had a prostatectomy 3 years ago and still has the ED problem.   Our take on it is that it's a price we are more than willing to pay. Wouldn't want you to think that all will go back to normal after the op but if course everyone is different.   My OH is 69 and quite fit and has no incontinence problems 

I totally agree with you on this, my husband had his prostate removed 5 weeks ago and we are now so distant, it’s destroying our 34 year marriage. We are in separate beds and bearly speak, our lives have been turned upside down. He’s 60 and I’m 56, he was just about to retire and we had everything to look forward to. He rushed into surgery and we didn’t explore all options, we panicked and just wanted the cancer out. From a wife’s point of view I would seriously consider surgery and how much the side effects would bother you and how it may impact on your lived. I wish you all the best.

Hi Debbie,

I'm really sorry to hear how it has affected you both. I hope things improve for you both.

I'm still undecided and that's why i wanted hear of people's experiences good or bad.

I think that the answer to "what is it like" depends on multiple factors, the two main ones being:

(1) the general outlook of the individual - some people are worriers, some are not, many are in-between,

(2) the position of the individual on the AS spectrum, and their overall circumstances including age.  e.g.

- Gleason 3+3, low volume, stable PSA, age 75 => probably on the relatively relaxed side.    

- Gleason 3+4, intermediate volume, PSA on noticeable rising trend, age 45 => probably towards the 'edgy' side.

I am reasonably OK (see profile for details), and in fact I am grateful to have a good quality of life and not be facing an immediate compulsory decision on which treatment to have.   

BTW, I'm not sure if the PSA test interval is a general policy decision at the health organisation (e.g. NHS Regional Trust) level, or if it is specific to the patient's circumstances.  The post mentions quarterly, but in some cases (e.g. mine) the testing interval is six months.  I rather suspect the former.

Hi, I was similar to yourself but I know I wouldn’t have handled AS well, so I opted for brachytherapy, 2 1 hour appointments, nice and simple, nothing else and 3 weeks in and no issues at this point other than needing to go to the toilet a bit more, but I do get plenty of notice,, see my profile.