Rog T's Cancer Blog - HIFU for prostate cancer - how I'm feeling five days after

 

For those of you who are regular readers and have read the previous posts on Cancer, you can skip this first paragraph. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested. This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life.  For those of you who aren't, here's a quick summary. I'm 53 years old and in October 2011 I  had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I'm now on a program of active monitoring.  In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0,  February 2015 it was  up to 5.5  and my latest in August 2015 was down againg at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer), albiet with small mass. On 22nd Jan 2016 Ihad HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). I've no symptoms and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture?

So it's now Wednesday, five days after my procedure. Today is the frst milestone. Today I had my catheter out. I thought this may be a good point to give the next update. On Friday, I detailed my experience of the procedure. What has it been like since then? Well the first thing to say is that having to wear a cztheter for five days is no fun. It isn't painful but it is unpleasant. I found that I had the constant desire to empty my bladder and when I had finished, the feeling that it was not empty. This isn't much fun. I have spoken to a friend who had a radical prostatectimy who had to wear one for seven weeks. I think this would drive me crazy. I have found that I had to get up to urinate at least 3-4 times a night. I've not been drinking alcohol and often I go the night without the need to go, so I've also found I've been rather tired. I know some people with prostate issues go several times in the night, I guess that as my cncer was detected very early, I am lucky that this isn't part of my problem.

What other side effects? Well there are some rather interesting discharges at the moment. Apparently these can persist for up to 6-8 weeks. This is largely made up of the cells which were barbequed by the ultrasound treatment.

The plan for today was to make my way to the clinic in Westmoreland St. Here I was told I'd have the catheter removed and then I'd have to wait around until they were satisfied my bladder was emptying properly. I had been dreading this, as imagined it would be rather painful. In the circumstances, it was again simply unpleasant. The rather nice staff nurse then gave me a measuring jug and a sheet to record when I passed water. I was instructed to go and have a glass of fluid every 20 mins, for five drinks. I was told to record the time and volume of my wee's.

There is a rather nice nordic coffee shop with free wifi next to the hospital, so I went down there. I had a couple of cups of green tea and a couple of glasses of water over the next hour and a half. I also had a rather tasty smoked salmon and rye roll (my little treat to myself). Eventually I made my way back, having performed the required measurements and handed my form in. The nurse informed me it all looked OK, but asked for one more go as I still hadn't fully emptied myself. This I did and when she was happy I toddled off home.

And that for the moment is that. I know a few people who've had the radical prostatectimy. It seems that the HIFU is a breeze compared to this. The only question is whether it is as effective. I am in a trial, so I will have a few trips back for check ups. I will also have my PSA monitored. In a years time there will be a biopsy or an MRI (I am not too sure).

At this point I am reasonably pleased with the decision I made. At my age and with my prognosis, it seemed the best option for my quality of life. Of course there is a small but statisticaly proven (7%) increased risk that the treatment will not work, as compared to a radical prostatectimy. This has to be weighed against the much larger risk of unpleasant side effects.

Given the proximity to the procedure and the presence of the catheter, I am not 100% sure whether I have no side effects at the moment. Without wishing to go into gory details,  I've simply not felt like testing the equipment yet. I think (fingers crossed) that incontinence is not an issue (although I only had the catheter removed this morning at 9.30am).

So what can I say I have lerned.

1) The HIFU procedure is not painful, but aspects are unpleasant.
2) The worst aspect of the process is wearing of the catheter
3) For someone who is my age (53) who wishes to lead a full sex life, it is definately worth serious considerration.
4) Although I was given paracetamol for pain, I've not had to take any. This wasn't stoicness, it just wasn't needed.
5) Five days in, I am feeling far better than I reasonably expected

Another thing which was also clear from the discussions with the clinical team in the run up to the treatment, was that the surgeons do not rate HIFU. The advice they gave me was that it wouldn't be appropriate in my case. I was surprised when the HIFI team took the opposite viewpoint. It does strike me that the different medical disciplines do not make it easy for the lay patient such as myself to decide. I took the decision to go for the HIFU, against the advice of the surgeon, as one has to conclude that the consultants who perform HIFU are more familiar with the procedure than the surgeons who don't. The answers they gave to my questions reassurred my queries.

I was, I guess, in the lucky position that I didn't have an urgent need for treatment. If the HIFU doensn't do the job, then I still have the backup option of surgery and it shouldn't affect the chances of this working. The sugrery team did make a valid point that if I went for HIFU, I probably have to be on active surveillance for the rest of my life as it wouldn't clear out the problem completely. With surgery, one hit would take the problem out. But if in say 10/15 years I find I need more treatment, it will presumably have a far smaller impact on my life. There is also the possibility that in 10-15 years new treatments that are even less invasive are available. It seems to me that there are massive strides being made in the understanding of cancer and the treatment of the disease. Prostate cancer is a very common form, so one has to assume that the progress to better treatments will be quicker than for more obscure forms. 

I plan to spend the next few days chilling out and recovering as best I can (I'm not much good at putting my feet up). I hope that if you are having this process, this is of some use.