my brother in January, now me!

Hi David welcome to this site and sorry that you have to be here but we are all in the same boat as you either by being the patient or other halves or family, it touches us all.

I was diagnosed in Feb 2015 with PSA 63 Gleason 3+4=7 aggressive PCa confined to the capsule I was only offered HT and RT as my prostate is too close to the rectum wall with a risk of leaving a trace or breaching the wall, either way I did not have the choice to make.

I can only say that for me my PSA went down to 0.5 after six months on HT and following RT has dropped to 0.01 and undetectable, so am in a good place at the moment.

All the side effects of both HT and RT were tolerable although tend to get me down occasionally but my view,is it is better to be alive.

Although I have no libido (part of side effect) and have hot and cold flushes with general fatigue I am glad that I did not have to go through the ED and incontinence issues that so many others have after having a radical prostectomy. It would still have been my decision if a prostectomy had been offered.

There may be others on here that will tell you their story or experiences and once you have divulged all the information from all sources I am sure you will make the right decision for you, unfortunately only you can make it.

You can call the nurses on this site and talk to them for anything that you feel that needs explaining better, they are really knowledgable and will help you tremendously.

Best of luck with whatever treatment path you choose.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

DW, I am sure the oncologist will explain - if he believes it would be true for you - that all other things being equal, surgery has exactly the same success rate as radiation & hormones in terms of total remission at 10 years, but is more likely to result in permanent side effects. I am always impressed by any hospital that routinely arranges for newly diagnosed men to see both a surgeon and an onco - the opportunity to talk through possible outcomes and impact is priceless.

Good luck with your decision-making

David, I will be on HT for another twelve months with nothing else planned but only time will tell as when the effects of HT wear off after another two years it is possible for my PSA to rise if there is some PCa surviving. No one knows if they are ever cured or if cancer will come back so it will be monitored.

I am 66 at present and have also started the add Asprin trials which will be for the next five years. If something occurs within that time it will be closely monitored and dealt with, I hope.

The hormone treatment has done and will carry on doing its job and I personally think that for my situation it has been the best way forward.

The side effects have been tiredness and some muscle loss, hot and cold flushes day and night, loss of libido and extreme tearfulness for no reason and also when seeing anything happy or sad. whatever way you go for treatment there will be side effects and as Lyn says there will be permanent side effects with surgery. Possibly prepare a list of questions for each of the specialists and see what you are told by them, it may be easier to make your decision then.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

Unfortunately, no treatment can 100% guarantee that no cancer cells have escaped even where the cancer is contained within the prostate, though in such cases the risk is much reduced.

This is not a recommendation but there are other treatments apart from surgery and radiation/hormone therapy that patients are not often informed about. This is largely because these are not generally available at treating hospitals and long term outcomes are not so well established. However, some patients feel these can have advantages. Cryotherapy and High Intensity Focused Ultrasound are two of these, the latter being an alternative where the cancer is localised, especially where it is on only one side of the Prostate. Of course, looking at other alternatives will be regarded by some as adding to the dilemma of making a treatment choice but for a few may provide a preferable option for suitable patients prepared to research alternatives.

Edited by member 18 Mar 2016 at 11:05  | Reason: Not specified

Luther, thanks. Mine is probably 2b, one side only, with some PIN on the other side. So when did you have yours done, and any help on ED?!

dAVID

Thanks Al. Was Brachy an option for you? I understand that as mine is contained, is T2a/b, and Gleason is 3+4, PSA 13, I could possibly qualify for Brachy?

David

But in reality, how many have Brachy when their PSA is 13, Gleason 3+4, even when confined within just one side of the prostate (PIN in the other side) ? And how many need further treatment 'later on'? Any stats anyone?! If it works, I'm in favour, but I'm not sure it's being offered to me....so far.

David

Edited by member 19 Mar 2016 at 14:08  | Reason: Not specified

)Hello David and a belated welcome from me (was on holiday)

I see Brachytherapy has been mentioned but I don't think it was specified which kind as there are two.
) ?
Was it high dose (temporary) or low dose (permanent seeds

Johsan,

Well I'm not sure....I know there are two. Neither were mentioned at my diagnosis but I will see the Radiotherapy consultant on Monday and ask if it's a possibility, rather than Beam RadioT.  I'm just in more confusion than I was up till yesterday, since the surgeon today said he could feel a slight hardness whereas the other 4 DREs could not, so he says one nerve will go. That I was not expecting, so I am now less keen on surgery even though it may be 'best'. Nightmare.

David

Hi Arthur,

I am certainly intrigued by HIFU and need to ask about it....I live in St Ives and use Hinchingbrooke too...I am going there on Monday to discuss RT, but I want to discuss Brachy and now HIFU as I don't think either can be dismissed.

Thanks for the tip on Harlow.

David

Hi David

No stats but my brother had High Dose Rate brachytherapy with a PSA of 14 and a Gleason score of 9. It was contained within the capsule. He also had 20 months HT and, two weeks after the HDR brachytherapy he had 15 sessions of EBRT.

David I have replied to your PM

In my opinion most of the statistics and success rates we read or look up from various sources are flawed anyway...

You have to remember that fewer people are deemed suitable for Brachy in comparison to EBRT and possibly have less disease progression?

Likewise the same can be said of RT as opposed to EBRT ..... RP is mainly deemed suitable for what is assumed to be contained PCa as opposed to EBRT which is used with HT  in some cases for a more advanced diagnosis ...

Luther

Edited by member 19 Mar 2016 at 19:48  | Reason: Not specified

I hope all had a good Easter...a few days break for me from all this...back to it now.

So, I have a meeting with the potential Brachy man on Monday, then with a HIFU man on Wednesday. Lastly, I am hoping to get referred to the surgeon at the Lister Hospital in Stevenage as I have had good reports about him, as a second opinion on possible RP.

It will then be up to me to put all the pieces of the jigsaw together. You guys have helped so far!

My fear is choosing the wrong option: I am 56 so if I don't have RP there is longer for it to return. Stage 2a, one side only, all contained(hopefully), no symptoms etc, Gleason 3+4, but PSA 13. If I do have RP, then having certain side-effects so 'young' seems harsh. Balanced against maybe HIFU/Brachy doing the job...or NOT doing the job enough for the future, and maybe preventing surgery later.

Very tough call.....

I think I have already made this comment to you DW but will say it here just in case.

Statistically, anyone who needs salvage treatment of any kind is less likely to achieve remission in the long term. In other words, there is no such thing as a second bite of the cherry. If that is true, it is important to choose the treatment most likely to be most successful - it is flawed thinking to settle for a treatment on the basis that if it fails, there are still other things to go for.

Of course, once you have worked out which treatment is most likely to result in a cure, you then have to decide whether you are willing to accept the potential risks of that treatment. Some men will opt for a treatment which has less potential for permanent side effects accepting that the chance of full remission may be a little lower.

Hi Arthur

Thanks for the tip re Harlow...I now have an appointment there this Wednesday to discuss HIFU treatment. My worry, with whatever I choose, is that it will return!!

David

UPDATE

Well, after last week's RALP I kept quiet just to have a break, to be honest!

It went well, so I was told, and the frozen pathology during the surgery showed clear margins to keep both bundles. If I hadnt had it done this way, at this hospital (patholgy during surgery) I would have lost one bundle, for sure. Lymph nodes taken as promised.

A week has gone and catheter came out yesterday. I was surprised I didnt gush at once, but in fact held on till I had to go 1-2 hrs later, and controlled it, so we will see. A dry first night.

A shorter penis for sure, but it's early days. They have given me cialis but not to use it for 3 weeks...?

Being the worrier, my fear is the lymph nodes are psoitive. The MRI says not. Surgeon said 18% chance with my stats of being positive, which is why deciding NOT to choose HIFU was probably correct.....what would happen if my nodes are positive, using HIFU?

So we will wait and see, but apart from the pain in that one hole (sneezing or coughing BURNS!!), I'm doing ok, and thank you all.

David

Well, here we are in September. I got continent quickly after the op in May, ed still total, and the lymph nodes were clear. But there was a bit gone into the seminal vesicles so I ended up with T3b. Blast. Anyway, first psa in July was <0·02, which was brilliant.
Second psa result yesterday 0.04. Bit surprised. All was well removed so surely any rogue cells that had already escaped had had many months or even years to produce some psa, but clearly had not through to July.....yet 8 weeks later have done?!
Strangley, I had seen the RT man the day before this result, in case rt was needed down the line. He said, on hearing the slight rise, that it could be a blip, and could settle down again, especially as it is still 0.0x
So a discussion, and another psa in 6 weeks. He says 3 rises are needed and rt would only happen if we get to 0.2, or close to it. If the 0.04 is genuine, then it looks likely I will be going down the rt route, which is a real blow.....

David