HIFU Focal Therapy

We have all been there and it is so difficult.  The irony for me is that my main career was in risk analysis, and this was such a difficult decision to make, but I would urge you to get diverse opinions from different professionals.  I was a candidate for HIFU but the unproven long term outcomes were too much of a risk for me.  Good luck with your choice.

Hi All,

A year on from my prostatectomy I have an update on my situation.  

My PSA levels have been <0.1 and the surgeon is pleased as of course am I.  I have slight concerns as I have started to get up maybe twice a night to urinate and have arranged today for another interim PSA test at my local GP (I am now on 6 months & not ‘officially’ due a blood test until May).  I am hoping it’s just stress - I am still working (age 67) and we’ve been very busy of late.

Notwithstanding the recent niggle, my recovery has been great and I feel very fortunate.  ED was an issue for about 9 months then ok, albeit with blue pills.  Pads were necessary for about the same time now never needed.  I am keeping fit and training for 4 half marathons commencing next month.

On hindsight I am very glad I opted for the prostatectomy rather than HIFU, although I knew I was taking a risk.  My surgeon has been wonderful and a rock - he seems genuinely delighted that I appear to be coming through this.

I just hope my luck continues and wish everyone the very best of outcomes.

Kenny 

Hi All,

A year on from my prostatectomy I have an update on my situation.  

My PSA levels have been <0.1 and the surgeon is pleased as of course am I.  I have slight concerns as I have started to get up maybe twice a night to urinate and have arranged today for another interim PSA test at my local GP (I am now on 6 months & not ‘officially’ due a blood test until May).  I am hoping it’s just stress - I am still working (age 67) and we’ve been very busy of late.

Notwithstanding the recent niggle, my recovery has been great and I feel very fortunate.  ED was an issue for about 9 months then ok, albeit with blue pills.  Pads were necessary for about the same time now never needed.  I am keeping fit and training for 4 half marathons commencing next month.

On hindsight I am very glad I opted for the prostatectomy rather than HIFU, although I knew I was taking a risk.  My surgeon has been wonderful and a rock - he seems genuinely delighted that I appear to be coming through this.

I just hope my luck continues and wish everyone the very best of outcomes.

Robin and Frankie I hope you are well.

Kenny 

Always good to hear good news, and good luck with the PSA.

The decision is always a risk, but I reckon HIFU  would have been a much bigger one!

Thank you!  I agree - I still had the HIFU option but the advice went against this and I decided on the full Bhuna …

Hi Kenny

Glad to hear all is going quite well. 

It's been quite a roller coaster week on PC matters.

Saturday was my first Anniversary and the latest blood test was PSA 0.31 following the previous 0.42, so all good on that front. Following a mini TURP prior to my Brachytherapy, everything is absolutely fine on the waterworks front with no getting up to pee, although speaking to the Brachytherapy nurse today, scar tissue caused by the radiation may be a problem in the next 12 months. A bit of ER, but I switched from Viagra to Taladafil and that is so much better. So in reality, I'm all fine and dandy and training for the Camino Di Santiago in May.

However I was brought down to earth on Wednesday. I learnt that a friend had been diagnosed with PC about 6 months ago, but far more advanced than me. He had clearly known about it for some time and the silly sod had decided to treat it himself through 'alternative' remedies. Once I knew, I of course offered all support, but on Wednesday he clearly decided enough was enough and took his own life. I think there were clearly other issues but it just demonstrates that we must be aware to the mental anguish PC can cause and support each other as much as we can.

Sorry it's such a sad tale but I just wanted to put it out there. Help each other and listen to the medical advice 

Please all stay strong

Robin

Hi Robin,

I'm pleased that you're doing well but also very sorry to hear about your friend.  Bereavements are arguably the worst type of pain and the sense of loss can be immense.  When I had my operation a year last December, due to a severe UTI (hospitalised) following the procedure I was unable to attend the funeral of my lifelong and closest friend (lost to bowel cancer), reduced to watching it online, it was sparsely attended due to the lockdown and surreal.  I had been asked to speak and a friend read out my eulogy - better than I could ever have done.

As we get older it seems that one by one the circle of friends gets smaller.

As you say, we all need to be strong.

Best wishes - Kenny 

Hi Robin,

Really sad to hear about your friend. I think everyone on here will agree that being told that you have pc is awful, and as bad (or even worse) is what follows... having to research the treatments to decide which option to take up is most stressful thing. The fear of the unknown can be overwhelming. I was seriously on the verge of going for hifu as a private patient, going against what was being told by my consultants as I was so worried about the possible side effects from brachytherapy and the hormone drugs that I would also have to take. This is where I think this community site comes into its own. You may recall, Robin, that I asked you several times for your advice.  This was because you were being treated at The Royal Surrey, under the same consultant as myself, and - if I remember correctly - your psa and other scores were very similar to mine. Thank you once again for your messages back at that time, and I hope I have been able to reassure others with my previous posts. 

So here is my update;- I opted for brachy, which was carried out in May 2021. I had 66 seeds implanted for my bilateral pc. I had hormone tablets for 3 months before the seed implants, and 3 months after the procedure. I have to say that I have not had one day when I have felt unwell at all. I was told that the radiation from the seeds may mean that I would feel fatigued, but that was not the case at all, I carried on with my normal lifestyle of running, gym and swimming and  I did not ease back at all. My psa after 3 months was 0.43 and after 6 months it was 0.79. I'm not due another psa until end of April. Everything is in good working order, I feel the same as I always have and not needed the blue tablets that others speak about which was something that did worry me when I was doing my research. So all is well with me, and hopefully it stay that way!

Just one question to you, Robin;-

What do you mean when you say "scar tissue caused by the radiation may cause a problem in the next 12 months"?.

Scar tissue has never been mentioned to me, in fact the only thing I have been told is that it is not uncommon for a spike in the psa level is possible, but should be just a 'one off' so not to be too concerned.

Best wishes to one and all - and good luck with the half marathons, Benny Ed, you're a man after my old heart (as a 3 marathon man London, Paris & New York!)

Bafflednan 

Hi BM 

That makes an interesting story, , glad it's gone so well for you. Hopefully April PSa has gone down further,  I have read good things about that Surrey hospital by the way.

Scar tissue shouldn't be a problem unless u have to have the prostate removed at some stage which I'm sure won't be happening.

Best wishes

Steve

Glad to hear everything is going well and so far, another highly successful outcome for the team at the Royal Surrey. I really would urge others who are in the dreadful decision making stage to go and get a second opinion there.  I am so grateful that I did, as I am sure you are.

Unknown said:

What do you mean when you say "scar tissue caused by the radiation may cause a problem in the next 12 months"?.

When I had my review with the Brachy nurse earlier this week, we really had very little to talk about as there were no problems to discuss, so I decided to use the opportunity to delve a bit deeper into what problems Brachy patients encounter in the 12-24 month period post procedure.

She advised me that the formation of scar tissue caused by the radiation can impact on the quality of urination - poor flow etc, but this only happens in about 5% of patients and although did not go into details, they do have ways of sorting it.  So statistically nothing too much to worry about, just an awareness thing to be on the lookout for.