Decision time after 3 years of AS

User

Posted 18 Apr 2019 at 20:20

Hi, this is my first post on here. After 3 years AS and 2 previous mpMRI scans, I recently had a scan on a new machine that my consultant said has shown in much more clarity the extent of my PC. I then had a biopsy performed via the perineum and this has come back showing positive cores as follows: upper left 6, upper right 4, mid left 3, mid right 2, lower left 2, lower right 1. My consultant has calculated a Gleason score of 3+4, T2C.

He said that it is now time to move on from AS and decide upon a course of treatment. He has suggested either Removal, Bracytherapy or HT followed by RT. I asked for his view on Proton Beam Therapy and he said it had the same, or sometimes slightly worse results than RT, which confused me as I have read some really positive things about it.

Question: Do you think maybe because of the spread across all areas of my prostate he felt that it was not suitable? Maybe proton therapy is only suitable for specific, well defined tumours? I am going to speak to someone at the Rutherford Cancer Care Centre in Wales next week, but would really value any thoughts/advice from the forum, as yours would be comments without any vested interest. Maybe I'm being a bit cynical, I don't know..

Any comments gratefully received (sorry for the length of this post!)

Chris

User

Posted 18 Apr 2019 at 22:43

If I was to guess why Proton Beam is not getting as good results as EBRT on PC, it would be because some spread of the beam beyond the prostate boundary is probably a good thing for catching micro mets. X-rays in EBRT are focused on the area of concern, but go right through you and catch surrounding areas to some degree too. Proton Beam on the other hand has a very specific max depth (a key feature of protons rather than X-rays), and they don't continue on past that depth, so it avoids the X-ray's "exit wound". The "exit wound" may actually be beneficial for PC survival though.

Just guessing though...

User

Posted 18 Apr 2019 at 21:15

Proton beam therapy is not available on the NHS as a radical treatment for prostate cancer in England and I don’t think it is available in Wales either, mainly because trial results have not been very good. Proton beam therapy is showing its main strength as a salvage treatment when prostate cancer surgery or RT has failed.

Based on the trial results, proton beam is being offered in England for eye cancers, some brain tumours and for some childhood cancers where very small children find it distressing to have to stay still for long periods. Not sure what Wales is doing.

If you want to pursue proton beam, a couple of members have travelled abroad for it as salvage - Prague and Germany I think.

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

User

Posted 18 Apr 2019 at 22:44

Hi Chris,

From the tone of your note I get the impression you're familiar with the subject generally.

You may think the comments on here have no vested interest but they do have bias based on the choices we've made, the after effects we experienced and a self selected possibly troubled sample. Although there won't be many who know about Proton Beam Therapy so it's perhaps as good as you'll get.

I've consistently been an advocate of cutting it out, having a pathologist look at it properly and seeking an undetectable psa reading as soon as possible. Perhaps if it had been a smaller tumour, away from the edge and lower Gleason I wouldn't have been so focussed.

I also have a bias away from less tried non-intrusive treatments as I once tried to have Photo Dynamic Treatment for a skin cancer, trying to avoid surgery, and was told it could be done but it will almost certainly come back. I wrote quite a bit more but decided it's drifting off topic and deleted it. All the best.

User

Posted 19 Apr 2019 at 08:35

I’m a bit younger than you at 51 and had mine removed last summer.

When I was exploring the options, everything led back to RP. The oncologists I saw were quite clear that for someone with my level of disease (PSA 2.5, biopsies at 3+3), they felt that RT/hormone treatment would be a very poor choice. Brachytherapy would have been much better but was not an option for me due to prostate size (big).

I therefore looked into the best ways of going about RP for minimum collateral damage. You may wish to google ”Retzius Sparing radical prostatectomy” which seems to offer quicker recovery of continence than the conventional route (worked for me), though having said that, the conventional method can give very impressive results when carried out by a skilled, high volume surgeon.

Best wishes for your decision making process!

Nick

User

Posted 19 Apr 2019 at 08:55

If your urologist is pretty certain that your cancer is wholly contained within the prostate, RP is the generally preferred option, particularly for younger men such as yourself. If there's a possibility of spread into the surrounding lymph nodes, as was the case with me, the HT+RT route is normally recommended. I've recently completed my RT treatment and didn't find it too bad at all, all things considered. Certainly a "gentler" option than surgery.

Best wishes,

Chris

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User

Posted 18 Apr 2019 at 21:15

If you want to pursue proton beam, a couple of members have travelled abroad for it as salvage - Prague and Germany I think.

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

User

Posted 18 Apr 2019 at 22:43

Just guessing though...

User

Posted 18 Apr 2019 at 22:44

Hi Chris,

From the tone of your note I get the impression you're familiar with the subject generally.

User

Posted 19 Apr 2019 at 00:29

Hi Chris,

How old are you, and what have been your PSA readings over the last three years?

I have a friend in his seventies, G3+4=7, who has been on AS for five years quite happily, until recently when his PSA has risen up to 11. He will have to do something more drastic soon.

He has spent a fortune on consultants and annual MRI scans and has even been to Offenbach, Germany, to investigate the NanoKnife procedure (which is not much different from the transperineal biopsy you just had). That costs €15,000 there, or £20,000 here. It has been trialled on the NHS, but the results were inconclusive, much like proton beam. He will make a decision on what to do within the next month. I’ll let you know what he decides.

Best of luck.

Cheers, John.

Edited by member 19 Apr 2019 at 02:08 | Reason: Not specified

User

Posted 19 Apr 2019 at 07:39

Thanks John.

I’m 56 and my PSA started at 4.4 gradually rising to 6.6 now.

Luckily I have insurance through my employer, hence me asking about the Proton Beam Therapy. My concern about that route is, because my cancer seems to be concentrated in the top part, but with lesser amounts showing up in all other areas, might the procedure be too precise and ‘pinpoint’ to zap all these areas? I am worried that they might not see some of it, whereas I am guessing RT is a bit more broad brush, and might stand a better chance of mopping up any of these more equivocal areas. I am showing a lot of naivety about this, as it’s all rather new to me and I don’t want to make the wrong decision. I really would value advice/views from forum members. Sorry for long message, maybe I should have chosen ‘Ronnie Corbett’ as my username :-)

User

Posted 19 Apr 2019 at 08:35

I’m a bit younger than you at 51 and had mine removed last summer.

Best wishes for your decision making process!

Nick

User

Posted 19 Apr 2019 at 08:55

Best wishes,

Chris

User

Posted 19 Apr 2019 at 09:18

Thanks Nick, I'll look up the procedure you had as suggested.

Chris

User

Posted 19 Apr 2019 at 09:23

Thanks Chris,

I'm looking for as little discomfort as possible, but obviously balancing that against surety of a good result.

Always going to be tricky, there is no one simple answer.

Out of interest, with your RT, were you offered the protective 'balloon' that goes between the prostate and rectum as part of your treatment?

Chris

User

Posted 19 Apr 2019 at 09:54

Originally Posted by: Online Community Member

Thanks Chris,

I'm looking for as little discomfort as possible, but obviously balancing that against surety of a good result.

Always going to be tricky, there is no one simple answer.

Out of interest, with your RT, were you offered the protective 'balloon' that goes between the prostate and rectum as part of your treatment?

Chris

No, I didn't. I investigated the procedure, but was unable to find anyone within reasonable reach of me who could do it. I didn't want to delay my treatment, so had it without it.

Chris

User

Posted 19 Apr 2019 at 10:27

Oh yes, just spotted that in your post thread.

I hope the burning pain in your rectum clears up soon, and you can get back to fullest normality.

Chris

User

Posted 19 Apr 2019 at 10:32

Thanks!

All the best,

Chris

User

Posted 19 Apr 2019 at 10:38

Chris,

I am a very satisfied customer of the same surgeon as Nikko, Professor Whocannotbenamedhere.

If you click on my nom-de-plume you will see my account of the whole procedure. I was NHS, Nikko private. I think there is a better wine list in the private sector......

Get yourself a second opinion(s).

Cheers, John.

Edited by member 19 Apr 2019 at 12:51 | Reason: Not specified

User

Posted 19 Apr 2019 at 14:03

Thanks John, I will give it a good read

Chris

User

Posted 20 Apr 2019 at 17:05

Hello Chris, I had brachytherapy 6 months ago, but then I am old (75). I did not want a RP but was leaning towards that, suggestions here resulted in my investigating brachytherapy and finally opting for it.

The amount of radiation ( 70 Greys Units) is much the same as I would have had with EBRT. Side effects were proctitis, cystitis, some tiredness and other minor things, I suspect a little less pronounced than the EBRT option.

If you are suitable (and I think you may be) it may be worth considering brachytherapy.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1

User

Posted 20 Apr 2019 at 21:24

Thanks John, Brachytherapy is one of my options. My consultant is arranging for me to see the specialist in this area to talk me through what would be involved.

Reading up on the pro's and con's of this and EBRT, I am concerned that taking one of these paths may close some other options to me in the future should the cancer return. There doesn't seem to be a straightforward answer. I am in a position where the scan and biopsy results are indicating that mine is localised at present (G3+4+7, T2C). I am reading that RP is the 'Gold Standard' for someone my age, fitness with these readings, but obviously it has it's risks.

My consultant says it would be sensible to do something before the summer is over, so I'm reading as much as I can, and hopefully I can make the right choice for me.

It really is helpful to read the forum threads of others, and to get messages and advice on my own thread really help me to feel that I'm not on my own. Thanks for your advice.

Chris

User

Posted 20 Apr 2019 at 22:50

It has been said recently, particularly at the national urology conferences that the emerging types of radiotherapy will become the gold standard and in the future, people will be horrified that we used to remove prostates surgically. But yes, you are correct - for a well contained low or mid-risk prostate cancer younger men tend to get it cut out and older men have it irradiated. Brachytherapy is starting to change that a bit - my husband was refused brachy (he was considered too young at 50) but that was 10 years ago and I know many hospitals do offer it to younger men now.

Don’t let the ‘options if it fails’ thing affect your decision making too much. If your first treatment fails, then statistically the chance of salvage treatment being successful is lower; the most important factor when choosing radical treatment should be “which one gives me the best chance of full remission?” rather than “which one has options if it doesn’t work?” Once you have determined that, the second question could be “can I live with the known and potential side effects of the treatment that gives me best chance of remission?” and if not, “which side effects can I live with while still having a reasonable chance of remission?”

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

User

Posted 21 Apr 2019 at 08:49

Hi Lyn,

You’re absolutely right. I need to focus on weighing up which option has the best chance of cure rather than looking beyond that. Thanks for your advice.

Chris

User

Posted 21 Apr 2019 at 11:31

Hi chris

Just to add neither of our consultants talk about ‘cure’ as they agree there are no guarantees apparently with any primary treatment that you won’t get a reoccurrence. This is just my understanding.

So both our consultants talk of the ‘trifecta ‘ in PCa being

- cancer controlled

- no incontinence

- no ED (tablets etc maybe needed)

Some take ED concerns ‘off the table’ as it’s not important to either them or their partner but that’s down to the individual. From my readings all care about cancer control and incontinence however!

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