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Posted 01 Sep 2023 at 17:57

Hi all,

I joined the forum a few days ago and have learned so much reading the posts of many of you who have gone through all that I am about to.
Having only been diagnosed last week, I am still in the information sponge mode and am yet to have any formal advice or rather be offered any options by any consultants. (First appointment with a surgeon is on one of the days of the forthcoming strike, but during the last strike, both consultants who I have seen so far (one for the initial chat recommending MRI and the other carrying out biopsy) were there doing their work so full marks to them!).
Like a few of you, as the scratchy knowledge from this excellent forum improves, so my firm option choices have changed (three times so far!). My father with his PCa (still going strong at 101) has a 3 monthly injection to keep him going and my older brother with his PCa has also offered advice, having 6 months ago gone through RP which failed to remove everything, followed by RT and he is now suffering the expected incontinence and ED issues. Not surprisingly, though my first aim is to survive, I do hope to do so with as few resultant side effects as is achievable.

I am hoping that my reading of my situation so far based on: I am at 71 relatively fit and active walking 6 miles every morning before breakfast, Gleason 3+4, 2/20 cores, T2 N0, the Urology Department suggestion that AS could be a possible course, all mean that I could opt for HIFU (I understand that I am close to a centre where this can be done). I am discarding AS as I am prefer to deal with things in my way rather than waiting and hoping that things won’t get worse, and what I read about HIFU suggest that it is not too invasive a treatment.)

I do understand that HIFU is not infallible and brings the risk that a further HIFU treatment regime might be necessary in 3-5 years but for people in their very early stages, it seems a very credible option. Also following the advice on this forum, I understand that should I need a second course of treatment and the PCa still be there after this second HIFU course, then I could then start RP (possibly?) or certainly RT but at least I would have given HIFU one or two chances to work.

I would be very grateful for any comments on my logic and potential choice of HIFU; also any advice on the practical effects of the HIFU procedure and its possible side effects. Or just any advice on anything!

Many thanks,

Simon

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Posted 01 Sep 2023 at 20:49

Hi Sam, you have a lot more knowledge about this disease than most people when they are diagnosed, you can thank your father and brother for that but I don't think they will appreciate it.

Most people want to take the most aggressive action against cancer and deal with the consequences later. I guess you have seen with your brother that the most aggressive treatment may not work and the consequences can take quite a lot of management. Hopefully a secondary treatment can cure him.

I always consider age and life expectancy to be very important in treatment choice. You only need to hold cancer off until you die of something else. I usually suggest 85 as a good age to die. Plenty on this forum are at or beyond that age and would disagree with me, I may review my opinion if I get to 84. So in my opinion you only need to hold this cancer at bay for 15 years (by my reckoning, I would have short changed your father by 16 years).

In your own case cancer has been diagnosed at a reasonably early stage and you are looking for the least aggressive treatments first. HIFU is a good idea, you are aware it may need repeating. Not many men are suitable for HIFU the cancer may be in an awkward place, if you are suitable and the medics are recommending it then it is well worth a go. Active Surveillance may work, but 15 years is a long time, you will almost certainly need treatment at sometime, but putting it off can be a good idea.

More aggressive treatment like RT, HT and prostatectomy don't need much more discussion until you have found out more about your situation.

Dave

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Posted 02 Sep 2023 at 02:36

Simon,

I would agree with most of what Dave has said but not the arbitrary age of 85, especially as I was diagnosed about your age and next week will be 87 DV. My father died just short of 100 and the fact that yours is still alive beyond this, and that you are generally healthy, means you also have a better chance of reaching or surpassing the ton.

You have mentioned HIFU as a possibility. I have had this twice as salvage treatment for failed RT, the last procedure being carried out in December 2021. My PSA was recently tested at 0.03 and with a clear MRI scan I have been told I am in remission which I hope remains the case. Bear in mind I still have a Prostate, albeit a battered one, so expect a small level of PSA. I could have have had my Prostate removed as salvage treatment but was told that for me it would most likely have meant permanent incontinence. RT was not an option as I had already had a greater dose abroad than would be given in the UK. So Focal Therapy was my only chance of an acceptable radical non systemic treatment. You on the other hand would be having your treatment (should you so decide), as a primary treatment with likely more alternatives, so are in a different position to me.

If your cancer cannot be reached with HIFU, it might be possible to treat it with another form of Focal Therapy such as Cryotherapy or Nanoknife (Irreversable Electroporation) but you need to see a Focal Expert to determine this. I was fortunate to be assessed for this by the team at UCLH in London who have the most experience of Focal Therapy in the UK.

For suitable men, HIFU is a very easy procedure done under anesthesia with few if any side effects, the catheter which was in place for a week in my case being the worst aspect. It did mean a second attempt in my case but RT and Prostatectomy also have failures and HIFU can usually be repeated and or followed by RT or Prostatectomy in need.

If you have not already done so, you might find it helpful to download the 'Tool Kit' https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

Edited by member 02 Sep 2023 at 02:38 | Reason: To highlight link

Barry

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Posted 02 Sep 2023 at 11:00

Dave and Barry, thank you both for taking the time to share your thoughts. This to my mind is the huge value of this forum.

Prior to this diagnosis of PCa, I had (without giving it a great deal of thought) assumed that if my father was still going strong at 101, (doing his stocks and shares on his iPad every day!), then I would have a reasonable genetic chance of doing the same. This prostate stuff has rather made me rethink but, maybe it is denial, I still consider myself to be fit and active and aim to live for ages. Having to quantify it to about 15 years is probably realistic but not want I really want! Thus my choices so far have probably been similar to those of a much younger man in the same predicament and not those of a 71 year old!
Some form of focal treatment, (as I had mentioned at the moment I am looking at HIFU) seems to meet my desires for early intervention with minimal side effects. However, I have yet to have if formally confirmed that this pesky cancer has positioned itself in just the right spot for ablation! So I may well yet have to consider other forms of ablation and failing this, RP or RT but I hope I may be in the early and fortunate position of having HIFU. (

Dave, I have also considered brachytherapy but I have a 6 year old grandson and I don’t want to have a couple of months when I can’t lie next to him for his bedtime story or help him with his latest Lego creation, and I don’t want my daughter to have a nagging worry at the back of her mind about how safe I am with her son/my grandson.

Barry, really good to hear of your own eventual success story with HIFU, your suggestions of other ablative solutions and the suggestion of the Tool Kit, this was one of my first ports of call and has been very useful in factual British information. I do hope that you continue to meet your ton!

Thank you again for your comments. Thank you also for your continual support on this forum over time to other beginners like me.

Simon

User

Posted 02 Sep 2023 at 11:57

Simon, there are a couple of other things I should have pointed out regarding Focal Treatment in general and HIFU in particular, so will now do so. Although Focal therapy is increasingly being administered, the uptake is rather slow because many men are not suitable and a lot of Consultants will dismiss it out of hand. Indeed even some Focal therapists will find a man unsuitable where the cancer is of a certain type, too much of it or too difficult to reach or particularly with HIFU, there is too much calcification for example. The bigger guns of Prostatectomy or Radiation of one form or another may then be more appropriate. These remove as much as the cancer as possible surgically or where the RT can be directed. With Focal Therapy, the intention is to treat only tumours that are considered to be significant, leaving those that are deemed insignificant, thereby preserving as much function of the gland as possible. This may be part of the reason why a second HIFU procedure could be needed if one or more of the insignificant tumours becomes significant. Consider by the age of 71 more than half the male population have some PCa, many of them being undiagnosed yet the vast majority living on to die of something unrelated to PCa. However, it follows that those that are diagnosed and treated early, have overall a better chance of not dying from PCa or as least deferring death.

Barry

User

Posted 02 Sep 2023 at 12:02

The age vs life expectancy is a tricky thing. No one wants to admit they are mortal. Because life expectancy is not really 85 it is between about 75 and 95, and your dad has shown at least 101 is possible, it makes taking it into consideration even harder.

If focal treatment isn't possible yes LDR brachy (seeds) would be a good choice, but not with a six year old grandson.

However if urology think AS is appropriate maybe that is a good option. Five years from now your grandson, will be hanging out on the street corner, kicking tin cans around and smoking behind the bike shed. So a few months of not being close to him won't be a problem then. Of course you might not get five years out of AS, and if you do you will be 76 not 71.

HDR brachy is safe for those around you, but it tends to be used for more aggressive cancer so probably not clinically appropriate for you.

Dave

User

Posted 02 Sep 2023 at 12:47

Hi Sam

We have a lot in common but that does not mean that you should go in the same direction as I did, 12 years ago.

You are getting some excellent advice from others who have had much varied experience than I have had. I was 72 when diagnosed, Gleason score 3+4 (good), 4+3 (not so good!). My cancer was well contained with clear margin. I was/am very fit with no other health issues. I had all the options available to me. My urologist was a very positive, and a very kind man who wanted the best for me and he had considerable experience in robotic prostatectomy. He insisted that I should see an oncologist before I decide on the treatment which I did. The oncologist was a young guy just beginning a trial with CyberKnife. Having done some research we decided that there was very little clear evidence about the 'cure' rate of non-surgical approach; situation is very different now. So robotic prostatectomy was a clear choice for us. The surgery was rather difficult, lasting six hours, recovery wasn't easy, catheter had to be in for five weeks. It took me 5\6 weeks to become 99% continent; I still leak when sexually excited! My erections were waning because of my age. It was something we knew we would have had to deal with. I had ongoing problem with my waterworks due to enlarged prostate. However, here we are 12 years later with my PSA<0.003. With my prostate removed my urinary problems also solved. We have been extremely lucky. Incontinence and ED has had quite an impact on our intimate life, but we have managed to re-establish that and are still active and living a fulfilling life. It is obviously very difficult for you to choose; you are doing the right thing by being on this forum where I find everyone is very helpful, modest and don't advise others on a particular path to follow. If you choose prostatectomy and wish to hear more about our experience now or after your treatment, I would be happy to chat to you. Luck plays a big part in this difficult journey, once you decide on a treatment be confident and don't look back. I have been contributing on this site since 2013. My posts are obviously very personal which you may find useful if you decide on prostatectomy. Good luck

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 02 Sep 2023 at 20:57

Pratap,

so glad you’re still doing so well after 12 years. Thank you for sharing your experiences, I’m sure I can learn a lot from what you have been through. I know I am trying to follow a slightly different path (which may change as I get more knowledge) but your reply has been very helpful.

Simon

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