Newly Diagnosed: AS and/or HIFU or?

User

Posted 15 Sep 2019 at 20:07

Greetings Everybody,

I received my PCa diagnosis on 3rd September. How I got to that point is detailed in my profile so I won’t repeat the nitty gritty here. I am still trying to come to terms with all that has happened in the past couple of weeks, alternating between feelings of desolation and numb resignation to what will be. I have been lurking in the background for the past couple of days but now feel confident enough to post.

The surgeon and Oncologist who went through my diagnosis were of the opinion that at this early stage it would be very premature to consider a prostatectomy as my tumour should be slow growing. They went on to say that all things being equal, they would anticipate that some surgical intervention would definitely be required within five to seven years. They also said that because of my young age (58) they would not propose radiotherapy due to the risk of an induced cancer in later years. So the suggestion was that Active Surveillance would be most appropriate. However they said they would refer me to the hospital where any surgery would be performed and also suggested that maybe I could investigate HIFU as a treatment option.

On 6th September I saw two different consultants at the second hospital. The first was a surgeon. He also said that my tumour should be slow growing and as such did not think that a prostatectomy was appropriate at this time and instead agreed that AS would be suitable. I said to him that if the tumour was so slow growing, do I need to worry at all? He replied that doing nothing would not be an option as he would estimate that the PCa would be fatal in about 15 years as it stood. Although he was not advocating surgery he did make the point that in terms of the best possible outcomes (with regards to complete removal of the cancer and minimal side effects), the sooner I had surgery the better. He also went on to say that he could tell from the location of my tumour, if I elected to have HIFU treatment and then subsequently needed a prostatectomy it would not be possible to perform a nerve sparing procedure because of scaring arising from HIFU. The second consultant handled HIFU treatment. He was of the opinion that certainly HIFU would be an option for me but thought that for the time being to go with AS and see how things pan out.

I can understand the reasoning behind AS for the time being at least; my partner and family all support this. Certainly I think I want to hang onto my prostate for the moment. But there are a couple of things nagging at me: From my perspective I have gone from not having PCa to having a positive diagnosis in a little over six months. This does not seem so slow to me. Secondly, my father was diagnosed with slow growing PCa and told not to worry. Just over 18 months later he was dead as it had spread throughout his pelvic cavity and into his bones. Not so slow growing after all. I also understand that my paternal grandfather died of PCa. I have pointed these things out to all the professionals I have seen but all they do is shrug. I guess this uncertainty is in part the nature of the beast.

So here I am trying not to dwell on things, to be thankful that I have been diagnosed while the disease is in it’s early stages and not to spin around the unanswerable questions. It’s not so easy.

Best wishes to all.

User

Posted 16 Sep 2019 at 09:22

I’d echo what the others say about trusting the AS process, while making sure that it’s done properly.

Having recently had a robotic surgery I’d not underestimate the impact it has.

The only advice I’d offer is to use the time before surgery to make sure that you’re as fit and healthy as your circumstances permit.

User

Posted 15 Sep 2019 at 20:07

Greetings Everybody,

Best wishes to all.

User

Posted 16 Sep 2019 at 01:04

Go for AS with hyper-active surveillance as Matron mentioned above, and continue with it until you are advised not to!

Best of luck.

Cheers, John.

User

Posted 21 Sep 2019 at 00:22

Hi folks,

I saw my GP this week to discuss my diagnosis. All agreed that prostatectomy would not be appropriate at this time and as it stands HIFU would make the most sense as a treatment even in the absence of data on the long term efficacy. I said that I would go with AS for the time being at least, though I was anxious to ensure that it was conducted diligently. My GP said that if at any time I had concerns on this front to just let her know and she would do all she could to help. This was very reassuring to hear.

So I have appointments made for PSA bloods to be taken and my first AS review in a couple of weeks. I am still finding it difficult to process all that has happened.

Best wishes to all.

User

Posted 21 Sep 2019 at 00:49

Your GP probably knows very little about PCa, so stick with advice from the specialists.

Cheers, John.

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User

Posted 15 Sep 2019 at 22:43

With a very small tumour and a PSA that appears to be behaving typically, removal at this point would seem to be like taking a sledgehammer to crack a nut. You haven't gone from not having cancer to having cancer in the space of 6 months; it will have been there for a long time but is only just becoming big enough to be detected. Your dad's story is sad but they didn't have the benefit of mpMRI or template biopsies in those days and there isn't really any significance to your dad & grandad both having PCa unless they were both young (early 50s) at diagnosis and / or there is also a history of breast / ovarian or other hormone-reliant cancers in the female line.

We have a couple of members that have had HIFU although these were as salvage treatment rather than primary, I think. There isn't much data on the long term effectiveness of HIFU as a primary option. Another member here went to America to have laser treatment for a diagnosis similar to yours. Only you can know whether you have the personality to cope with AS - all I would say is that radical options are permanent, AS is an option that you can change your mind on at any point. It is essential though that AS is done correctly - 3 monthly pSA test, annual DRE and at least annual MRI. My father-in-law died on AS because it wasn't done correctly (as it seems happened with your dad as well?)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 16 Sep 2019 at 01:04

Go for AS with hyper-active surveillance as Matron mentioned above, and continue with it until you are advised not to!

Best of luck.

Cheers, John.

User

Posted 16 Sep 2019 at 09:22

I’d echo what the others say about trusting the AS process, while making sure that it’s done properly.

Having recently had a robotic surgery I’d not underestimate the impact it has.

The only advice I’d offer is to use the time before surgery to make sure that you’re as fit and healthy as your circumstances permit.

User

Posted 17 Sep 2019 at 00:51

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.

User

Posted 17 Sep 2019 at 01:21

Hi Andrew,

Thanks for your thoughts.

Absolutely there is a degree of certainty in simply opting to swing that sledgehammer and have the troublesome little walnut removed that is very attractive. All I would have to concern myself with then is getting over the surgery and hopefully any side effects diminishing over time.

As part of the clinic that I attended, we had a two hour presentation on all aspects of robotic prostatectomy. Understandably it was very bullish and upbeat; the statistics presented on outcomes (removal of tumour and side effects) were very encouraging. But I have no doubt that as you say, dealing with the side effects can be very challenging especially if you happen to be one of the unfortunates for whom things do not work out ideally.

Best wishes.

User

Posted 17 Sep 2019 at 03:12

Hi 1138,

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

User

Posted 17 Sep 2019 at 17:46

Hi John,

Thanks so much for your posting.

As part of the presentation (held at a London Hospital), examples of the instruments as used by the robot were handed round together with catheters and various types of bags. It was all very comprehensive. But to watch a video of the complete procedure? Like you I will pass on that one thanks and stick with "Alien"!

All the best,

Simon

User

Posted 21 Sep 2019 at 00:22

Hi folks,

So I have appointments made for PSA bloods to be taken and my first AS review in a couple of weeks. I am still finding it difficult to process all that has happened.

Best wishes to all.

User

Posted 21 Sep 2019 at 00:49

Your GP probably knows very little about PCa, so stick with advice from the specialists.

Cheers, John.

User

Posted 26 Nov 2019 at 20:15

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

User

Posted 26 Nov 2019 at 21:03

It is true that those who have the genetic fault are likely to have more aggressive cancers that are difficult to treat; however, that is irrelevant to most men on here. Less than 5% of prostate cancers are thought to be genetic and even fewer are thought to be linked to BRCA genes, for example. The trigger for considering genetic testing is usually quite specific:-
diagnosed young
immediate male relative(s) also diagnosed young
immediate female relatives diagnosed with ovarian or other hormonal cancer and / or diagnosed young with breast cancer

The biggest risk factor for getting prostate cancer is being a man. 60% of men in their 60s and 70% of men in their 70s have some cancer in their prostate so while there are often strong familial patterns, there is rarely an actual gene fault.

We have had members here diagnosed with advanced PCa in their 30s and 40s who may or may not have been BRCA carriers, most of them are no longer with us. I know of a young man that has been diagnosed in his mid 20s with advanced PCa and I imagine he will be tested. But for men in their 50s, 60s or older it is generally not relevant and would put huge pressure on our already overstretched NHS.

Presumably, the US system involves paying for genetic testing so I would be a bit cynical about who benefits from pushing the idea that men need to be tested.

Edited by member 26 Nov 2019 at 21:08 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Nov 2019 at 14:36

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.

User

Posted 02 Dec 2019 at 19:07

Hi,

Thanks for sharing with us. I am 57 diagnosed with advanced prostate cancer and awaiting radiotherapy. I was interested that you said they wouldn't consider radiotherapy due to your age and the chance of additional or related cancer as a result of this. Do you have any further information on this?

My oncologist had told me that radiotherapy is the only real option for me, and at no point has any risk of subsequent cancer been mentioned. The only risk they pointed out to me was a risk of bowel damage as I have diverticulitis (originally misdiagnosed as bowel cancer, but that's another story).

I am concerned as I am alone and have to commit to 5 days a week for 8 weeks - I have metastasized to the lymph nodes in my pelvic area hence, apparently, the longer timescale. I already feel quite ill, partly the cancer and partly the hormone treatment I think and will have to drive a 40 mile round trip for this. I am worried I am not physically up to this. My oncologist and Macmillan nurse have said I "should" be ok, but talking to people who have actually gone through it gives a different story. I guess it is all part of the CCG lottery and what treatment they are able to give. There don't seem to be any alternative treatments available but I know I should be thankful there is treatment. I can't help worrying though.

Ian in Somerset

User

Posted 02 Dec 2019 at 22:28

Ian,

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.

Barry

User

Posted 02 Dec 2019 at 22:31

Thanks Barry,

Radiotherapy is all I have been offered.

I'll leave this thread in peace.

Cheers, Ian

User

Posted 15 Mar 2020 at 19:42

I was diagnosed with Stage 2 PCa (3+4). My PSA was 4.1. I opted for surgery and haven’t looked back. Continence is pretty good and erectile function is almost normal thanks to bilateral nerve sparing. Given your family history I would be getting shot of it. Prostatectomy is the best option in my view for guys on their 50’s with low to intermediate risk PCa.

Darren Waters

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