Dreaded news arrived

User

Posted 25 Aug 2023 at 14:07

Ohwow

Just one thought would be that are your coronary issues getting any worse? If you did want RP then would it be better sooner rather than later when you might be in such a worse position to handle it?

The brachy is certainly a simpler solution for you given that it is done under a local and as long as your consultant is certain of your T2 diagnosis. In my case my 3+4=7 became a 4+5=9 T3a on the post RP lab histology report so even though I was offered brachy at the time, I am glad that I chose the RP.

User

Posted 25 Aug 2023 at 15:43

Thanks Tom, appreciate the comments and advice. This forum in totally invaluable for us I believe. You cant get this on the NHS!

Hi Steve86, yeah I think any coronary calcification is a 1-way deal as technology stands at the moment. There is no wonder drug (yet...fingers crossed) that will clear the arteries. Its down to how it develops and if stents are enough or a full multi bypass. The latter being a major op that would overshadow any PC concerns for me at present. These problems will only get worse, and I imagine most of us has a level of narrowing, its just mine is quite advanced. And that impacts considerations for other medical procedures.

The consultant felt I need to at least get to a more stable footing (whether that be stents or bypass) before considering RP, although he appreciated some people just want rid of the prostate as soon as a diagnosis is given. I could indeed elect to go down that route before anything else gets worse. If my AS suddenely takes a turn for the worse over next 2 or 3 readings, think it would then be a no brainer.

Its very concerning that a full accurate diagnosis cant be achieved until post lab. If I understand that correct? I've seen a few threads on here saying similar to yourself. I can understand why, there just is no way that kind of detail can be checked until they have their hands on the prostate. Seems to me any biopsy will never get the full picture as they cant analyse ever little spot. Again only time and technology advancements are going to resolve that conundrum.

Edited by member 25 Aug 2023 at 15:49 | Reason: Not specified

User

Posted 28 Aug 2023 at 19:39

Hi Tom My journey may be of interest. I had prostate HIFU left side ablation last year on Gleason 3+4 at UCLH. Cancer returned in the ablated field soon afterwards and also on the right so was now bilateral, Gleason 3+4 risk group T2C Intermediate. UCLH advised whole gland treatment required and gave me a choice of salvage prostate removal or RT. I did not want the RT as 18 months of aggressive hormone treatment would tie me to numerous hospital visits, with many side effects like weakness incontinence etc. After research i am very disappointed in lack of counselling prior to HIFU. This procedure is not approved in US or EU. One NY Study describes recurrence as 35-42% but i was advised 15% chance of failure. The same study referred to the effect on the anatomy of HIFU treatment as "unknown". I dug deeper. In 2018 a study by UCLH suggested cancer recurrence after HIFU in the treated field may be due to fibrosis of tissue leading to reduced blood flow encouraging a more aggressive form of cancer! I wish i did the research before the HIFU. After the cancer returned bilaterally UCLH advised how technically difficult salvage prostatectomy would because of the nerves and rectum being fused to the prostate gland during HIFU. They insisted all nerves would have to be removed. So total loss of erectile function. This turned out to be the line given out in the NHS to cancer patients but it is due to the increased cost and resources required of a nerve spare op. Ive now been forced to go private with the prof. who also operates at guys and guildford who has now performed a successful salvage prostatectomy with 100% nerves intact and has done thousands of robotic prostatectomies with 'intraoperative frozen section nerve spare'. They only cut out the nerves they need to after doing the histology while your asleep. Its c.£22k. It is simply unacceptable UCLH do not Counsel cancer patients about the range of research over failure risks, and the consequences if you want to retain sexual function if HIFU failure happens before you decide on it. I am relieved to have the prostate out and relieved to retain the nerves supporting sexual function. I hope this experience can give some perspective to others.

User

Posted 29 Aug 2023 at 12:53

Hi Paul77

Thank you for the message. I am so sorry to hear that the HIFU treatment was unsuccessful. HIFU was not an option I considered at any great length and it was not an option offered to me by the MDT, although I suppose if I had wanted to push it I expect I would have found a way. Anyway that's all academic as I quickly realised Brachy was the one for me. So far so good, its now now ten days post implantation and there have been no problems with continence or frequency, or indeed sexual function. I do feel more tired than usual though, but I was warned this might be the case. Of course there is the chance it will not prove successful in the long term and I may need a salvage RP/RT. I did discuss this at the hospital and was reassured by their confidence that this would not be a big problem.

All the best

Tom

Edited by member 29 Aug 2023 at 13:00 | Reason: Not specified

User

Posted 29 Aug 2023 at 15:28

RP after radiation treatment is very difficult - number of consultants who are willing to take on this task is limited. When I chose RP 12 years ago I was given all other options but decided on RP because the consultant showed me the result of the MRI scan and pointed out that I had ample clear margin. He also told me that radiation options really rules out surgery afterwards. It is always a very difficult choice. I purposefully never advise anyone to go for RP or not.

'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 29 Aug 2023 at 15:56

Ok thanks Pratap. That is definitely at odds with the information I was given a few weeks ago. Maybe things have moved on in 12 years.

I agree no one should recommend one treatment over another, something the consultants I saw stuck to.

Tom

Edited by member 29 Aug 2023 at 15:58 | Reason: Not specified

User

Posted 29 Aug 2023 at 17:48

You are right, I don't have the latest opinion on this. Nevertheless, it seems to me that for the initial treatment it is important to make the right choice (however you do it). If you are choosing RT with a view to thinking that if it fails you can rely on the second bite at the cherry via prostatectomy does not seem logical to me.I have Googled to find some information and all I can find is that because of scare tissues left after RT, surgery poses a real challenge and also there is some evidence that the risk of incontinence/ED following salvage prostatectomy are considerably higher. It is 'rock and a hard place' situation. One thing for sure, people who are diagnosed now stand a much better chance of a 'cure' or at leat a much longer life than I had.

'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 30 Aug 2023 at 11:02

Yes it is clear that post RT the scar tissue makes RP much more challenging, but not impossible. Each to their own but for me there is nothing that is not "logical" about assessing all the possible outcomes when you make an important decision. If I had been told that there was no possibility of successful salvage treatment for the 5-10% of people for whom Brachy does not eliminate PCa then it may have affected my decision. As with not pushing anyone down any treatment route I feel it's also important to support all sufferers of this nasty disease in the way they choose to analyse potential outcomes.

Edited by member 30 Aug 2023 at 11:04 | Reason: Not specified

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