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Newly Diagnosed PSA15 Gleason8

User
Posted 02 February 2017 15:51:55(UTC)

Hi, I'm 67 and recently diagnosed as having PC.  My PSAs have been 15 and my Gleason score 8 (4+4).  Prostate size 37cc containing a tumour 0.44cc, a bone scan etc was all OK showing it's confined to prostate.  I'm told this is high risk and needs radical treatment.

My general questions are:

I guess it's too malignant to just monitor and try giving tumeric, ginger and vitamin D etc., a go in the hope it might hold it at bay?  Failing that is it too malignant for any of the focused treatments (Brachy, HIFU or VTP) - though not sure if available on NHS (as wasn't offered these options by my consultant in Cambridge).

I anticipate that recommendations/opinions will be the same as my consultant - either surgery (robotic assisted laparoscopic radical prostatectomy) or radiotherapy with hormone treatment.  I'd like to hear from anyone who has had either and specifically whether they can (a) get any kind of erection afterwards ie. extent of impotence and

(b) extent of incontinence - is it temporary or permanent and do you have to wear/sleep in pads. 

User
Posted 03 February 2017 10:57:08(UTC)

Hello Chris,

Your Gleason score and PSA do put you into the high risk category (of your cancer spreading beyond the prostate), so you would be taking quite a risk in relying on a change in diet alone (there is scant evidence that diet helps although many on these forums, including myself, have made dietary changes in the hope that it can help in some way).  You mention continued surveillance and although this would  likely spot spread in the prostate, it wouldn't spot cancer cells "escaping" via the bloodstream or lymphatic system.

So, I can see why your consultant is recommending radical treatment. Here's a link which gives some further details on risk.....

http://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/localised-prostate-cancer

In terms of treatment options, yes there are a range of "possibles". I would seek guidance from both a surgeon and a radio-oncologist. I chose surgery.

In terms of side-effects, you will probably experience a period of incontinence and impotence. The duration of each is dependent though on a number of factors....the skill of the surgeon / team, the extent of nerve sparing, your age, your pre-op. continence and erectile function, the help you get afterwards from the hospital team (continence team / erectile dysfunction team), your partner, and of course luck. 

 

My own experience was that I was thankfully "dry" within a couple of days (after the catheter being removed, although I still need to be careful sneezing 3 1/2 years on) and it took 6 months to regain an erection (I had both nerves spared).  But everybody is different, some have been able to get an erection in weeks of surgery, others still battle with incontinence many years after treatment. I consider myself very lucky overall.

Flexi

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User
Posted 02 February 2017 16:24:29(UTC)
Hi check my profile for answers to some of your questions. - just click on name.

Ray
User
Posted 02 February 2017 16:36:51(UTC)

Hi check my profile. I am 49
So sorry you find yourself here. I ended up having to have radical prostatectomy. It's taken me 19 months to get erections even though I am young and had nerve sparing. I've no idea which is the best treatment. Surgery failed me and I ended up on HT anyway and further treatment will be necessary maybe including RT. If you really care about erectile function then RT will give you a chance possibly for up to two years. Surgery is almost definitely going to give you long term or permanent ED. There is no easy way out I'm afraid. On the good side , despite surgery , I was fully continent within 2 months !




If life gives you lemons , then make lemonade
User
Posted 02 February 2017 17:11:56(UTC)

Hello Chris in Cambridge and welcome to the site.

My husband had Brachytherapy a couple of years ago and although your prostate volume is smaller than his was (I think) your PSA and Gleason are a lot higher so I would have thought that Low Dose Brachytherapy wasn't available to you and that the recommended more radical routed were the only options open to you. Certainly the dietary route (Turmeric, ginger etc) as an only treatment would be a bit foolhardy. Nothing to stop you using them following treatment though to gain any benefits they can give.

If you go to Publications on this site you can download The Toolkit which may help you with relevant information

We can't control the winds - but we can adjust our sails
User
Posted 02 February 2017 18:59:17(UTC)

hello
I can understand the need to check out other options. Perhaps a phone call to the nurse specialists on Prostate Cancer UK would be informative. I was Gleason 9, PSA 21 and T3a, so surgery was really the only option I had if that helps. Don't know too much about longer term consequences (although so many on here do) as I only had surgery two weeks ago. My best suggestions is reads lots, ask lots and get many opinions, then consider the most popular options.

cheers
G

User
Posted 03 February 2017 01:25:47(UTC)

Graham,
Often surgeons don't want to operate on a man with a T3A which was my case and I had a lower Gleason and PSA than you. Don't know if there was some special reason why you were not offered RT because this is the more likely option for men in this situation.

Barry
User
Posted 03 February 2017 10:57:08(UTC)

Hello Chris,

Your Gleason score and PSA do put you into the high risk category (of your cancer spreading beyond the prostate), so you would be taking quite a risk in relying on a change in diet alone (there is scant evidence that diet helps although many on these forums, including myself, have made dietary changes in the hope that it can help in some way).  You mention continued surveillance and although this would  likely spot spread in the prostate, it wouldn't spot cancer cells "escaping" via the bloodstream or lymphatic system.

So, I can see why your consultant is recommending radical treatment. Here's a link which gives some further details on risk.....

http://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/localised-prostate-cancer

In terms of treatment options, yes there are a range of "possibles". I would seek guidance from both a surgeon and a radio-oncologist. I chose surgery.

In terms of side-effects, you will probably experience a period of incontinence and impotence. The duration of each is dependent though on a number of factors....the skill of the surgeon / team, the extent of nerve sparing, your age, your pre-op. continence and erectile function, the help you get afterwards from the hospital team (continence team / erectile dysfunction team), your partner, and of course luck. 

 

My own experience was that I was thankfully "dry" within a couple of days (after the catheter being removed, although I still need to be careful sneezing 3 1/2 years on) and it took 6 months to regain an erection (I had both nerves spared).  But everybody is different, some have been able to get an erection in weeks of surgery, others still battle with incontinence many years after treatment. I consider myself very lucky overall.

Flexi

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User
Posted 03 February 2017 12:45:09(UTC)

Hi Barry

Thanks for the reply.  My impression that surgery was chosen over RT was due to possible side effects of RT due to my age (53), in as much as RT carries it's own risk in future years, and also surgery is made more difficult after RT.  The basic thinking was age related and expectation of living for more years than some.  It involves a degree of unknowns and assumptions, so it needed up with making the best guess and acceptance of side effects.  I'm hoping I made the right choice, but who knows!

Cheers

Graham

 

User
Posted 03 February 2017 16:41:12(UTC)

Graham,

It is true that for younger men like yourself where a treatment recommendation is given it is most likely to be to have surgery but this tends to swing towards RT where the cancer is locally advanced and beyond. This is because there is an increasing risk that surgery may need to be supplemented by RT, meaning another major therapy and possibly yet more adverse side effects. Some, perhaps most surgeons are more reluctant than others to suggest surgery in these circumstances for this reason. or might suggest, as happened to me with a T3A, that I should consider RT as a better option. However, side effects aside, it may be a more successful cancer strategy to have surgery and RT and even HT too as a combined assault on this rotten disease. This is one of the ares being studied.

Barry
User
Posted 04 February 2017 14:46:09(UTC)

Thanks to everyone who replied.  I've not answered individually, but it's been very helpful and thanks for your advice and support.

Chris

User
Posted 08 February 2017 16:30:11(UTC)

Hi

I had RP  (Feb 2015).  Brother just dx is having RT (9 x 5 sessions)

Both dx is very similar - please see my profile.  Others have answered your original question.  My input :

1. AS is not an option at Grade 4 and your young age of 67 assuming you have no other life limiting issues

- I would aim to make a decision within 2 months.  You may already have

2. re. RT v RP as Chris and other experienced posters have said - nothing can be predicted.  I was dry  immediately and maybe an exception. Must be down to skill of surgeon, Kegels, luck or a mixture of all.  I was asymptomatic and I had good bladder control pre op. I was only 59.  ie I wasn't getting up at night like my brother had been.    

3. ED - surgery .  There will be exceptions, however body will take time to recover (this is major surgery whether open or lapro.) tissues are cut, traumatised.  No ejaculate, as you know, possible.    Body will recover albeit slowly and see other posts,  plenty of options. 

Do ask about Nerve sparing(NS)  ?  (I had Non ..  ie  NNS)

   ED -  RT  - see other posts..  seems the 'negatives' occur further down the journey and slower , again unpredictable. Everyone is different.    

You could explore other options - ie physical destruction / laser ablation in 'situ'  ?  However this is probably for single lesions (have you had a mpMRI and know where the lesion or lesions are located ? )  Possible need to be done private  (See Clare / Claret posts)

Summary :

Take advice from your MDT team, it may come down to your 'gut feel and attitude' to Surgery or RT.   Obviously there are variants of RT you can explore - ie in very basic terms differing strengths v differing  time periods.    My RP was quite pain free and over night stay.

 

Gordon

 

 

User
Posted 08 February 2017 18:34:57(UTC)
Hi there,

Yes I have researched the focal options and am happy to share. We are headed towards a private focal laser treatment which is available at a number of places in the USA and Holland..
My husband is G6 (3+3) so my research has focused on this low risk type of diagnosis. However higher G grades can be treated with FLA potentially .

Happy to share info if you need it

Regards

Clare
 
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