Newly Diagnosed: AS and/or HIFU or?

Hi Lyn,

Thanks very much for your reply. Having mulled it over it has helped to crystallise my feelings on a couple of points.

I am certain that at this time, I do not want to give up on my prostate. As you say, there is no going back from surgery and there is no doubt that my PCa has been diagnosed at an early stage and is not immediately of an aggressive type. So I do have the luxury of time in which to take a considered course of action providing I keep my head and do not panic. Hence it would seem that AS would be the most rational way to go at least for the immediate future. But I absolutely take your point (and as made by others) that the quality of the AS is paramount. So if I submit to AS I can get first hand knowledge of the quality of the service as it is delivered to me. Hopefully it will be such as to give me confidence going forwards. Certainly I think I would find it very challenging if it appeared to be falling short and was having to fight my corner.

I have noted the understandable lack of data on the long term efficacy of HIFU. The HIFU consultant gave me some documentation relating to HIFU trials (though it is no longer a trial procedure at least in the hospital I have attended) which discussed the rational behind the development of HIFU treatment. Clearly I would fall within the target group; essentially a locally contained tumour that while active did not warrant a prostatectomy.

I understand what you meant when you said that it is not the case that I have suddenly "got" cancer in the space of six months. Upon reflection I can see that my original statement was a little bogus. But what I was driving at was that at some point in the past there was no detectable cancer and now there is. So there has been a certain rate of development. Now at the point of diagnosis this cancer is classed as "slow growing" and if I understand what I have read, for slow growing PCa past behaviour is a good predictor of future behaviour. However it is not true to say that all slow growing PCa tumours remain slow growing and this is the nub of the issue: There seems to be no test that can determine for which men these slow growing tumours will turn lethal and when. One practical result of this rambling is that it emphasises the importance of diligent AS!

So I kind of feel that I am beginning to make some sense of events and so come up with a course of action with which I can be as comfortable as possible under the circumstances.

My GP has called me in for an appointment later this week to discuss my diagnosis. It will be helpful to get her thoughts.

Best wishes.

You have evidently taken your cancer diagnosis to heart, and worn out Google with searches about it, as we all did.

There are many, many, types of cancer - I would have to Google them to say how many - but PCa is about the least worst one you can have. Some say a Gleason 3+3=6 should not even be called cancer at all. Some critical illness insurers will not pay out on that diagnosis as it ‘is not life threatening’.

Lucky old you, to go to a two-hour presentation on prostatectomy. My surgeon has a You Tube video of one of his operations - I watched a few minutes of it - I find Dr People Popper more engaging and less personal!

I don’t think you are in England, so I don’t know if they mentioned this in the video presentation - my own post-operative side-effects at the robotic hands of one of the top surgeons in Europe are:

Complete erectile dysfunction

Very muted orgasms of a different kind

Micro-penis

Total continence except when very drunk on a gallon of beer or more

But best of all, cancer free!

Do consider the above points before embarking on anything radical, and mine may be best case scenarios.

Keep calm and carry on.

Cheers, John

Have you had genetic testing? We are in the US, so they approach things differently here.  We were told that if you  have certain genetic mutations your prostate cancer can behave differently than expected, so it is always good to rule those out. You may want to talk to your physician and see if these are an option, especially with your family history.  If nothing else, it may help to ease your mind.

Edited by member 26 Nov 2019 at 20:17  | Reason: Not specified

FWIW my husband had a mother and grandmother that both had breast cancer in their late 50's, a father who died of PCa at 72 and a brother that was diagnosed with early stage prostate cancer at 57. His brother was BRCA 2 positive, which made him decide to have his prostate removed as opposed to active surveillance. He would have never been tested for these mutations in many places.  I understand the testing is expensive, and not standard but the results can be surprising and it can be helpful. It seems like often they are not very good at predicting how an individuals prostate cancer will behave, any tools that help them predict that seem to be a positive. Mayo did his genetic testing for a very reduced fee because they are keeping a data base with this information for research purposes, they have a large genomics department that is always doing research on cancer and the genes involved.

You are not obliged to have RT. You could if you so wished rely on systemic treatments such as HT, chemo. etc as needed but it it is clearly thought that you may benefit from RT. There is a small risk that RT may initiate another cancer in many years time maybe 20 or so years so this has to be accepted (or not by avoiding it). Unfortunately, there are not definates when it comes to PCa and it's treatment.

Your case is different from that of the OP and it would be best not to cause confusion by side tracking his thread.