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User
Posted 23 Feb 2016 at 07:58

Hi

I am a new member to this site but have already found it a great help with certain issues that I am currently experiencing with my hormone treatment for prostate cancer. I was diagnosed in the latter part of 2015 (Gleason 3+4 - PSA level 11.8) and are due to have my 5th monthly injection at the start of March. The company I work for have been really good and have agreed for me to do reduced hours and days off when I get tired or stressed out. Over the past few weeks I am starting to really struggle with fatigue in both my legs and arms even though I walk to work which equates to about an hour a day plus a few exercises whilst I am at my desk at work. I have tried to drink more water during the day but find it a bit of a struggle when offered a decaf tea or coffee! I eat quite healthy food such as fruit and vegetables but still find it a struggle to keep going as the day progresses. it’s now at the point where I need to decide which treatment to go along with after being offered Surgery, radiotherapy or brachytherapy. I have done a lot of research for all three treatments but still cannot decide which one to have. Keyhole surgery is my preference but I am put off with the side effects I keep reading about, even though my GP has said “because of all the hormone treatment I am having it should shrink the prostate which should make it easier to remove without doing any damage”. I have dismissed Radiotherapy but still undecided on brachy which will be carried out in a hospital that’s nearly two hour’s drive from my home so a lot of inconvenience involved with this. Is there anyone out there who did not have incontinence trouble after surgery and I am right in thinking that all three treatments have more a less the same results in success and failure.

Hope you can help

 

Andy

User
Posted 23 Feb 2016 at 10:45

Hi Andy,

Welcome to the site.

There are lots of guys on here who have had the various treatments you are being offerred.

However it really must be you who decides.

There are lots of men who have treatment, get over it, and get on with their lives.  Indeed to some extent the men whose treatments are 'sucessful', have no further need of this site and we never hear from them again.

So bear in mind that those of us who regularlly post here, are the ones with ongoing complications and side issues, who need updated advice etc.  For example you can look at my profile and think to yourself 'RT didn't work for Dave', but by the same token, had it worked, as it seems to for many guys, then I wouldn't still be posting on here would I?

So I would hate you to use my example as reason not to chose RT.

You can apply the same logic to the other treatments, to some extent we are the 'failures', the men whose treatments where marvelously succesful have little need to use this site.

:)

Dave

User
Posted 23 Feb 2016 at 10:58

Many thanks Dave for your reply. Like you say" its got to be my decision which treatment I take". I'm at the stage where its starting to grind me down a lot so I feel I need to make my decision sooner than later.

Together we will beat this thing

Andy

User
Posted 23 Feb 2016 at 11:27
Hello. My other half wasn't offered surgery but a choice of radiotherapy, brachy or surveillance. His Gleason was 6 psa 4.9 (3.7 on diagnoses 6 months previously) not sure why, but there was really no discussion about surgery. But as he is a full time farmer he wouldn't have chosen surgery as too much time off. For the same reason of time off he didn't chose radiotherapy as it is a good hour to hour and half away to the hospital and again it would be too much taken out of the day.

So he chose brachytherapy and he had paid help for 3 days as it was an overnight stay. I helped him with lifting for the next few days. Then he worked as normal.

Unfortunately he suffered very bad side effects. The consultant wanted him to do active surveillance and he now wishes he had done that. He said this morning that he wishes he hadn't had brachy done. But apparently it is rare to suffer such side effects. (Some seemed to start after the biopsy so we can't just blame brachy) The consultant told us last time that no one has ever reported side effects after the 9 month mark, so we must be the first as its now 13 months.

But he had no incontinence problems as he could have gone after surgery so that is a plus.

Also on the plus is psa is 0.6 not sure how low it is meant to go, but it's much lower.

It is a hard decision to make choosing the right treatment. Good luck.

User
Posted 23 Feb 2016 at 11:53

Hi Andy,

As others will tell you, any decision is down to you really.

I opted for surgery ( Brachy was not an option for me ) 

I have never regretted my decision even though I do still suffer from ED and light leakage 20 months post op.

However, to date my PSA levels are undetectable, which for me is the most important factor.

Managing side effects is unique to each individual...... What is manageable / liveable  for one may be completely intolerable for another. 

As far as I'm aware, any type of radical treatment is not without the possibility of side effects to one degree or another.

That's why it's so important to weigh up all the pros and cons and take time on deciding.....

Best wishes 
Luther

User
Posted 23 Feb 2016 at 11:53

Hi Andy,

One option you haven't mentioned is no treatment at all, 'Active Surveillance' they call it, not my area of expertese so I can't offer advice, but it might be worth asking your Consultant about it.

That way you don't need to make an instant decision about the more radical options any time soon.

The most important thing is not to feel that you are being rushed into a decision, you need to take your time, and make your choice when you are ready to make it.

In the meantime, look at the simple things you can do like a diet full of turmeric, green tea, brocolli etc.  Diet is not exactly a cure, but many guys feel it has subdued their PCa.

:)

Dave

User
Posted 23 Feb 2016 at 12:18

Hello Andy and welcome to the site

What Brachytherapy was it that they mentioned as there are two kinds
Permanent Seed Brachytherapy which sjtb's husband and my husband had or High Dose Brachytherapy which is not permanent.

Brachytherapy by the way is another kind of radiotherapy  whether radioactive seeds or a "rod" inserted

My husband's Gleason was also 3+4 which is a "Good" result believe it or not. He also has a small prostate requiring no shrinking with hormones beforehand. The fact that Brachy and surgery have been offered means that there isn't any spread and that the cancer is contained within the prostate

I am assuming that as Active Surveillance wasn't mentioned by you that it wasn't an option but I would enquire about it before you make any decisions.

It could be that it isn't an option for you anyway or it could be that it was offered but is not a treatment you would be happy with. It isn't for everyone. We had it for a year which gave us time to get our heads round the other options. Had John's PSA not started to rise he would have stuck with that.

None of us can advise you, only point out what we did and what it has been like for us but realistically that isn't any help to others in your situation because what happens to us isn't necessarily going to happen to you.

Yes there are side effects of ALL treatments, certainly in the initial stages of recovery, but that doesn't mean they will be permanent.

All you can do is check everything out very carefully, question your consultant regarding his success rate in whatever option you edge towards.

Have you downloaded the "Toolkit" from this site? It might help.

 

Edited by member 23 Feb 2016 at 12:20  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 23 Feb 2016 at 19:36

I think your GP is naive to think that the risk of side effects is reduced by having a smaller gland. It doesn't work like that unfortunately.

It is also a bit too late to consider active surveillance as you are already well into HT. I assume that is why you didn't mention it as an option. I suppose if you were really keen you could ask the consultant about stopping the HT but I bet he isn't keen.

it is extremely unusual to be put straight onto HT when surgery is one of the possible options. Are you in the UK or overseas?

On a like for like comparison, surgery and EBRT have the same outcomes in terms of remission at 5 years and still being alive at 10 years. Brachy seems to be a little better but is still too new to have the long term data.

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

User
Posted 23 Feb 2016 at 20:10

Thanks to every one who replied back to my post, its really good to know there are people out there who have experienced what I am going through and are willing to give sound and solid advice.

I did not question why I was put straight on to the HR treatment after a MRI scan but just thought this was the norm has I know two or three guys who were put straight on to the one or three monthly injections. I live in Staffordshire and if I choose Brachy then this will be carried out in Northampton or if choose surgery then it's carried out locally. I went to see a specialist nurse today at our local cancer unit for further advise, so now I just need to sleep on it before I make my decision tomorrow. Just one last note about HT treatment. My GP did say it's the norm to have between three and six monthly injections before any radio therapy or surgery is preformed. Is this just some thing that's carried in Staffordshire or is it done elsewhere?

Keep living the dream and beat this thing once and for all.

Andy

User
Posted 23 Feb 2016 at 22:59

Must be a Staffs thing - in our area they wouldn't do surgery on a man that has had hormone treatment. But it has given you 4 or 5 months to think, research and make a decision. Good luck

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

User
Posted 23 Feb 2016 at 23:33

Hi Andy,

Sometimes even post radiation treatment, you are asked to have HT which can vary in time anything upto 3 years. You could ask how your consultant sees this in your case as you seem to be quite severely affected by HT. I believe HT is not usually given after surgery unless it does not do the job and further treatment is required. It might be a good idea to ask whether your cancer is thought to be well contained as if this is the case it improves the chances that the surgery will remove all the cancer.

Barry
User
Posted 24 Feb 2016 at 09:36

I am waiting to see the Consultant on 1st March, to decide on Brachy or High Dose RT. I was put on HT 7weeks ago even though my Prostate size is normal. I didn't query it, but after reading some of the quotes above, I'm wondering if it really is necessary.

User
Posted 24 Feb 2016 at 10:16
Hi adidave9. I have said this before, my other half was told that the hormones shrink the prostate before treatment. As his prostate was normal size he was told whichever treatment he took (out of radiotherapy or brachy) he would not need hormones. I did ask why he wouldn't need hormones and was told it was completely unnecessary.

Seems conflicting advice as most men that have had radiotherapy on here have had hormones. Though I don't know many that have had it with brachy because they will only perform brachy if the prostate is normal size. It must be something that depends on the consultant.

User
Posted 24 Feb 2016 at 10:58

Originally Posted by: Online Community Member

Must be a Staffs thing - in our area they wouldn't do surgery on a man that has had hormone treatment. But it has given you 4 or 5 months to think, research and make a decision. Good luck



Without wishing to sidetrack this thread too much..... As far as I'm aware in my area they don't prescribe hormone treatment prior to surgery either.

As a non medical person with very limited knowledge.......how would a reliable PSA test be obtained after surgery if someone was on hormones?

I thought that an undetectable PSA was regarded as reliable indicator as to whether surgery was a success or not?

If hormones are in the equation that test will not be reliable surely?...

Just askin' http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Luther


User
Posted 24 Feb 2016 at 17:38

A friend of mine, had surgery but with a rising PSA thereafter he was put on HT as a restraining measure as it helps neutralize stray cancer cells (apart from helping to shrink the prostate). He was then given RT and his PSA has since been undetectable for many years. So I believe HT is likely to be given post surgery only if it seems that surgery has not been a complete success.

Barry
User
Posted 24 Feb 2016 at 21:03
Originally Posted by: Online Community Member
I am waiting to see the Consultant on 1st March, to decide on Brachy or High Dose RT. I was put on HT 7weeks ago even though my Prostate size is normal. I didn't query it, but after reading some of the quotes above, I'm wondering if it really is necessary.

Adidave, I think we have confused you unnecessarily. If you look at all the men on here that have had RT in recent years, I can only think of 2 or 3 that had RT without HT. The two treatments work in tandem, HT isn't only to reduce the size of the gland - it also damages each cancer cell so that the radiotherapy causes a more fatal blow. until quite recently it was standard for men to have HT for 3 months prior to RT starting - these days we are increasingly seeing men taking them for 6 or 9 months before. All the science indicates that the longer the HT the more successful the RT is.

That is a completely different matter to HT before surgery. HT does not contribute anything to making surgery more successful, it can affect the Gleason score once the gland is in a Petrie dish and it takes away the opportunity to get the reassurance of an undetectable PSA score post surgery. So a man that has had HT prior to surgery would need to stop taking it a little while before the op or accept that he won't know for sure that they got it all out. As Luther points out, a rock and a hard place :-(

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

User
Posted 25 Feb 2016 at 14:23
That is interesting to know Lin. About why hormones are needed. I wonder why our consultant said it want necessary then? He said prostate was a normal size so it would not be needed. That was even if he had gone down the EBRT route instead of brachy. I suppose we have to just trust our consultant. They obviously do things differently.
User
Posted 25 Feb 2016 at 14:23

Hi Andy,

Referring to your original post, I have had no incontinence issues whatsoever, and I was dry from day one.

However, my MacMillan Nurse said I was lucky as only 4% of RP patients fall into this category, and of course, I know how lucky i am.

I have never done pelvic floor exercises, but I have for the last 8 years swum 2.5kms freestyle every morning. I'm sure that this along with the skill of the surgeon has helped considerably.

I wish you all the very best with your decision.

 
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