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User
Posted 22 Sep 2014 at 12:16

Hi all, I have recently been diagnosed with Prostate cancer, thankfully localised. Tomorrow I have an appointment at our local hospital to discuss Radiotherapy as a treatment option, I am awaiting an appointment with a surgeon to discuss that option. I have read loads of articles on treatment and to be honest I am totally at a loss as to which would be better for me. I am also very worried how either treatments will affect my sex life in the long term. I have never had an operation in my life, guess I have been lucky so far, so the thought makes me very nervous indeed. However I believe having radiotherapy means going every day for the treatment for weeks on end, and has various side effects. Just wondered if anyone on here could offer any positive advice about both treatments. Thanks.

User
Posted 22 Sep 2014 at 18:45
Lyrical

I chose surgery over RT because I was advised that you can have RT after surgery but not surgery after RT giving me a possible second chance. I had Da Vinci surgery and was back at work 4 weeks after the op 99 percent dry four days after catheter removal. No nerve sparing so ED will always be an issue unless I am in the 1 percent who supposedly have success after non sparring surgery. I am having bladder neck stricture problems due to clip migration but I am in the 1 percent group on that one but it is an inconvenience not a major problem. I only saw one consultant who was also my surgeon and did feel a little bit led down the surgery route. As said by others look at all your options and make your own choice. Side effects are not always as bad as predicted.

Thanks Chris

User
Posted 22 Sep 2014 at 12:43

Welcome Lyrical. Firstly, it helps members give advice if you can provide information. Ie PSA, Gleeson score etc. The more you read, the more confusing it becomes eh?
Download (or order from here) the sites TOOLKIT which will be more info for you to read if you haven't already done so.
The only observation I would make is that, since as you say the cancer is localised, don't rush, or be pushed into a treatment plan too early.
Talk to as many specialists as you can. Take a list of questions with you and make a note of answers. Take somebody with you as well. Two heads being better than one. You won't remember them otherwise.
I'm sure somebody else much wiser will be along soon.
Glad you did at least manage to find the site. Everyone on here is very helpful. As far as the sexual side goes, that will depend on your treatment but nobody is shy on here so ask away if you have specific questions.
Good luck and keep us posted. Best Wishes Sandra

We can't control the winds - but we can adjust our sails
User
Posted 22 Sep 2014 at 13:12

Hi

Sorry cant help you with any of the treatment you have been offered, but there are loads of guys here that have been down these treatment routes.

Found this thread on RT, very good  http://community.prostatecanceruk.org/posts/t5878-Radio-Therapy-underway#post5878

If you click on anyone's user name it will  bring up there bio and will help  to see how they fared.

Now the sex thing ahh such a distant memory but again you will find lots of advice here.

So welcome to our club, keep posting ask anything there will be someone who has the answer.

Si

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 22 Sep 2014 at 17:21

The decision you make as regards the course of treatment you undertake is one only you can make based upon the results of tests you will have had or are going to have. Generally speaking, people on this forum will not advise you to do one thing or another as it is a personal choice for you and only you. Research everything and you will find the steep learning curve is relatively easy to climb.

 

My cancer was high grade, only just contained and surgery was an option. Some people are not given that option. I am extremely happy with my decision to have the surgery. You are welcome to read my account of what happened and this may help you to decide.

 

As far as a future sex life is concerned I can only reiterate what my consultant told me when I discussed that matter with him and that is 'there are no free lunches in this game'. In other words both surgery and radio therapy are likely to have some effect on erectile dysfunction and it is probably better to make your treatment decision based upon the best outcome for treating the cancer you have rather than on whether this or that will have a more or less negative impact on your future sex life. There are of course other forms of treatment and one of these may be suitable too. Someone on this forum once famously said 'Having sex isn't an option if you are dead'

 

Good luck to you and I sincerely hope that everything works out for the best when your decisions are made.

User
Posted 22 Sep 2014 at 20:36

Hello Lyrical,

Sorry to see that you are here.

I am not an expert and have no medical experience of PCa, other than I survived PCa.

Before you opt for any particular treatment option you may wish to consider your likely longevity? If your family history indicates that you may be likely to die from natural causes at age 65'ish then you may consider no treatment, or watching and waiting? That way you preserve your life's pleasures.

If, however your likely longevity extends to you 80's or 90's then you may wish to do something and take the risks associated with the various treatments? Side effects are all "possible", none are guaranteed to occur or not occur. Despite all the stats and all the ops it seems no two men are the same or come out the same. Oh, and the most likely side effect of treatment, be it chemo or beads or surgery is life. On diagnosis I took the view that I would rather be alive and moaning about the side effects than dead without the chance to moan.

You do not say whether or not your cancer is aggressive, or slow burn?

Any symptoms?

Do you have a history of PSA readings so that the group can work out hot urgent your situation might or might not be?

What led to your diagnosis?

Look forward too reading more about you so that others may help you.

Dave

User
Posted 23 Sep 2014 at 16:12

Hello again Lyrical.
My husband started at 5.9, 3+4 and just as yours was found it was a last minute decision by the GP to add PSA to a blood test and from there we are where we are.
He had a year on active surveillance, and on 3rd June this year he had 58 brachytherapy seeds implanted. Just prior to my John's procedure, member Kennt also had it done.
If you look at both profiles it may give you some sort of guidance. Remember though that everyone is different.
Good luck with your choice.

We can't control the winds - but we can adjust our sails
User
Posted 23 Sep 2014 at 18:46

I went down the surgery route, and have no regrets.  PSA is undetectable at the moment, but should it start to rise RT is a possibility.  I was not suitable for Braccytherapy as I went into retention after I had a template biopsy.  No signs of movement north after 5 months, but I can still look sorward to plenty of golf!

Stay Calm And Carry On.
User
Posted 24 Sep 2014 at 00:39

Hi Lyrical,
we are in Leeds as well. Brachytherapy would have been my husband's first choice but it wasn't available to him because he was considered too young; however, you are a fair bit older than he was so it may be a good option for you. My husband had surgery but found the side effects so hard to bear - plus it came back and he ended up needing salvage hormone treatment and radiotherapy anyway. Now, it all seems a long time ago, he is absolutely healthy and we have found a new 'normal' life.

In comparison, my dad was your age at diagnosis and chose surgery, he was in remission for 13 years although it has come back recently. My father-in-law was worried about side effects and opted to do nothing .... he lived for only 4 years.

Whichever treatment path you choose, whether that is radical treatment or active surveillance, buy into it wholeheartedly because regret can be very difficult to bear.

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

User
Posted 18 Oct 2014 at 00:18

Hi Lyrical,

There is almost too much information out there.That is what I found. And despite all that information, there is no one or no way to decide what is going to be the best treatment for you.

Only you can decide that. And that will be with all the mixed up information that there is.

If it helps? I decided that I wanted it "OUT". No "ifs" no "buts" just "OUT". I weighed up all the pros and cons and decided for a robotic surgery. It went well but I did not do so well afterwards, with some complications and side effects. That said I would not change a thing, even after seeing that eChannel 4 programme recently.

What ever you do decide to go for, go for it 100%. And don't look back.

ATB

Dave

User
Posted 22 Oct 2014 at 20:48

Go for surgery, get rid of it in one go then you can consentrate on living and get your life back, I did 12 months ago with no regrets, you won't feel a thing, and you get to go home the next day with only a bit of discomfort for about a week, from the dreaded catheter. Do your pelvic floor exercises as of now, stay positive and if possible stop smoking, that for you is probably the most difficult, but it pays dividends when having surgery, and after.Good luck and Best Wishes Diesel.

User
Posted 22 Oct 2014 at 23:54

It's your decision but you are doing the right thing in obtaining all the info you can. 6 months post op my latest psa is <0.01.

Stay Calm And Carry On.
User
Posted 23 Oct 2014 at 09:04

I'm certainly not pushing the Brachytherapy Lyrical, I've already commented on our situation above and at the end of the day the decision can only be for you and your wife.

I would just say though to go ahead with the meeting regarding it. All knowledge is power.

John was told in the January that something needed to be decided so we started down the enquiry route but nothing happened until June. Like you, his prostate was small and cancer contained and we had time to consider.

There are members on here not in the same "fortunate" position of having time.

Our surgeon was different to yours. He thought any other option was irrelevant and was dismissive of the Brachy. He also emphasised that if Brachy was our preferred route then NO surgery would happen afterwards 
You appear to have been told that it can - even with the proviso that after effects may be worse.

Radiology consultant told us surgery COULD go ahead after Brachytherapy although it is more difficult, and in any case she said there were other salvage treatments available. So, two doctors - different views.

Much like on here really. Many members for surgery, many trying to do all they can to avoid it.

All I can add is that (so far anyway) there are no major problems. No incontinence since the initial situation following the implants
Tamsulosin is currently sorting out mild urine retention although John was advised to double them until he has a camera down. Intimate  life pretty well back to normal although it needs more "planning" than it previously did !

John was never very interested in investigating Prostate Cancer, the treatments or the possible side effects. I had to do all that. There is such a mine of information out there and it does become confusing.
I found it helped to do a little chart type thing laying out the treatments, possible side effects etc. By looking at them laid out like that we were able to number our preferred options for the possible best outcome which would suit us.

Good luck with any decision you make.

Best Wishes to you and your wife. Glad she is on this journey with you.

 

Edited by member 23 Oct 2014 at 09:07  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 23 Oct 2014 at 11:17

Thank you all for your comments, as usual very helpful. I have just been doing a little research on my surgeon, (name removed by Moderator) Royal Hallamshire in Sheffield, as I wanted a little more background info. He did his first Robotic assisted prostatectomy in January this year and has since carried out over 150 procedures. He is the head man in Sheffield and now trains other surgeons in this field using the Da Vinci surgery. When I first read this I though "He's not very experienced" but he seems to have  good track record. 

Still await appointment to see someone in Leeds regarding brachytherapy, rang this morning and I should hear something within the next 7 days.

As mentioned by others there is so much information out there that you can confuse yourself and over think things. What I, and others I would think, in my situation would prefer is for someone to say "These are the options available but the most suitable one for you would be ?????? ", but no-one does this and you are left to make the choice. This seems to be a lot of additional pressure to put on people in my opinion. It seems a little like buying a new car, with the Ford dealers telling you theirs are best, the Vauxhall one saying its theirs, and so on, with them all selling their service. Maybe it's just me who thinks like that, lol. I have compiled a comparison chart listing the pro's & con's of the treatments to try and help my make my decision.

Thank you all once again, hope everyone is fighting fit. 

Edited by moderator 23 Oct 2014 at 11:48  | Reason: Not specified

User
Posted 16 Jan 2015 at 12:31
Hi Alan,

Glad you have finally made your decision.

I just wanted to wish you all the luck in the world with your treatment. I'm sure it will go well.

Best Wishes,

Steve

User
Posted 16 Jan 2015 at 13:36
Alan there are a few recent posts on brachytherapy procedures on the forum very much the treatment of choice if it is considered the most appropriate for your specific needs. The team at Leeds have a good reputation so you'll be in the best hands.

I wish you the best of luck for your procedure later this month.

Xxx

Mo

User
Posted 16 Jan 2015 at 14:18

Alan

Good luck with your treatment. Hope all goes well.

Paul

Stay Calm And Carry On.
User
Posted 29 Jan 2015 at 19:35

Sounds excellent. Good luck with your continued recovery.

I wasn't recommended for Brachy as I went into retention after my template biopsy. Had a pee after the op, but when I got home, nothing more than a trickle, so next morning it was off to A and E for a catheter and my first night in hospital since I was 5. Happy memories - not!

Keep us up to date.

Paul

Stay Calm And Carry On.
User
Posted 23 Sep 2015 at 17:42

Hi Alan, really good news for you, excellent news in fact.

You made the correct choice for you and it has paid off. I really admire your courage in opting for Brachy, I could not get my head around having "it" inside me, even if "it" was zapped to death.

Your success will give hope to others who are at the decision stage. Even so, I have no regrets.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 23 Sep 2015 at 21:32

Hello Alan. Well done on the PSA reduction.

It is a very very anxious time waiting for the PSA results following Brachy but isn't it a wonderful feeling when they come back and it's down yet again

We can't control the winds - but we can adjust our sails
User
Posted 24 Sep 2015 at 16:30

Hello, that is good news isn't it. It makes the side effects a bit more worthwhile. My OH had a psa test in May it was 0.78 (Brachy done in Jan) then he had another psa test this week, it was 0.76 so not much reduction in 3 and half months, but it is heading in the right direction. All the best.

Show Most Thanked Posts
User
Posted 22 Sep 2014 at 12:43

Welcome Lyrical. Firstly, it helps members give advice if you can provide information. Ie PSA, Gleeson score etc. The more you read, the more confusing it becomes eh?
Download (or order from here) the sites TOOLKIT which will be more info for you to read if you haven't already done so.
The only observation I would make is that, since as you say the cancer is localised, don't rush, or be pushed into a treatment plan too early.
Talk to as many specialists as you can. Take a list of questions with you and make a note of answers. Take somebody with you as well. Two heads being better than one. You won't remember them otherwise.
I'm sure somebody else much wiser will be along soon.
Glad you did at least manage to find the site. Everyone on here is very helpful. As far as the sexual side goes, that will depend on your treatment but nobody is shy on here so ask away if you have specific questions.
Good luck and keep us posted. Best Wishes Sandra

We can't control the winds - but we can adjust our sails
User
Posted 22 Sep 2014 at 13:12

Hi

Sorry cant help you with any of the treatment you have been offered, but there are loads of guys here that have been down these treatment routes.

Found this thread on RT, very good  http://community.prostatecanceruk.org/posts/t5878-Radio-Therapy-underway#post5878

If you click on anyone's user name it will  bring up there bio and will help  to see how they fared.

Now the sex thing ahh such a distant memory but again you will find lots of advice here.

So welcome to our club, keep posting ask anything there will be someone who has the answer.

Si

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 22 Sep 2014 at 17:21

The decision you make as regards the course of treatment you undertake is one only you can make based upon the results of tests you will have had or are going to have. Generally speaking, people on this forum will not advise you to do one thing or another as it is a personal choice for you and only you. Research everything and you will find the steep learning curve is relatively easy to climb.

 

My cancer was high grade, only just contained and surgery was an option. Some people are not given that option. I am extremely happy with my decision to have the surgery. You are welcome to read my account of what happened and this may help you to decide.

 

As far as a future sex life is concerned I can only reiterate what my consultant told me when I discussed that matter with him and that is 'there are no free lunches in this game'. In other words both surgery and radio therapy are likely to have some effect on erectile dysfunction and it is probably better to make your treatment decision based upon the best outcome for treating the cancer you have rather than on whether this or that will have a more or less negative impact on your future sex life. There are of course other forms of treatment and one of these may be suitable too. Someone on this forum once famously said 'Having sex isn't an option if you are dead'

 

Good luck to you and I sincerely hope that everything works out for the best when your decisions are made.

User
Posted 22 Sep 2014 at 18:45
Lyrical

I chose surgery over RT because I was advised that you can have RT after surgery but not surgery after RT giving me a possible second chance. I had Da Vinci surgery and was back at work 4 weeks after the op 99 percent dry four days after catheter removal. No nerve sparing so ED will always be an issue unless I am in the 1 percent who supposedly have success after non sparring surgery. I am having bladder neck stricture problems due to clip migration but I am in the 1 percent group on that one but it is an inconvenience not a major problem. I only saw one consultant who was also my surgeon and did feel a little bit led down the surgery route. As said by others look at all your options and make your own choice. Side effects are not always as bad as predicted.

Thanks Chris

User
Posted 22 Sep 2014 at 19:01

Thanks everyone for your prompt responses to my post. I know it will be up to me to make the decision after hearing all the pro's & cons from the experts. I am encouraged by your experiences Chris & Martenstoves and hope you are both recovering speedily. Never thought of the "Having sex isn't an option if you are dead', that really puts things into perspective I feel. Thanks again.

User
Posted 22 Sep 2014 at 20:36

Hello Lyrical,

Sorry to see that you are here.

I am not an expert and have no medical experience of PCa, other than I survived PCa.

Before you opt for any particular treatment option you may wish to consider your likely longevity? If your family history indicates that you may be likely to die from natural causes at age 65'ish then you may consider no treatment, or watching and waiting? That way you preserve your life's pleasures.

If, however your likely longevity extends to you 80's or 90's then you may wish to do something and take the risks associated with the various treatments? Side effects are all "possible", none are guaranteed to occur or not occur. Despite all the stats and all the ops it seems no two men are the same or come out the same. Oh, and the most likely side effect of treatment, be it chemo or beads or surgery is life. On diagnosis I took the view that I would rather be alive and moaning about the side effects than dead without the chance to moan.

You do not say whether or not your cancer is aggressive, or slow burn?

Any symptoms?

Do you have a history of PSA readings so that the group can work out hot urgent your situation might or might not be?

What led to your diagnosis?

Look forward too reading more about you so that others may help you.

Dave

User
Posted 23 Sep 2014 at 10:41

Hi Lyrical

 

You might also like to look up my posts about how I chose surgery and how it went.  As someone else said, if you can give details of your diagnosis then you might get a better match of advice.

 

All the best.

User
Posted 23 Sep 2014 at 13:58

Hi all, thanks for your replies. This morning I had a meeting with a consultant regarding External Beam Therapy and she gave me the other options I have. My Gleason grade was 3+4 and my last PSA result was 7.8 having risen from 5.4 in March. This could be because I had an examination about 2 hours before the test. And my cancer grade is T2. I have no symptoms whatsoever and it was only by luck that I was sent for a blood test. I was seeing my GP about a totally unrelated problem and as I was about to leave I mentioned that when I had a biopsy "a couple of years ago", which was clear, the consultant advised that I be res-tested in 2/3 years. GP checked and it was over 4 years so he sent me for a blood test. PSA came back at 5.2 so he referred me to a Urologist. After the lovely examination he wanted me to have a biopsy. This showed isolated cancerous cells on one of the samples and a MRI scan & bone scan were arranged. Bone scan was clear, MRI confirmed the cancer is contained within the Prostate. 

I have been given 4 options at the moment as regards treatment : 1) Surgery (2) External beam (3) Wait & watch (4) Brachytherapy

The 4th seems to me to be the best option in some ways but I was worried, and asked her, what the success rate is. Her reply was similar to External, so to me it does appear to be the best option if I do not decide on surgery. External beam would mean 7 weeks treatment, 5 days a week for hopefully the same result. Asked what were the chances of the cancer returning after treatment her reply was " It does not matter which treatment you have the cancer could return, even after surgery ". 

I will wait & see what the surgeon says then the people at Leeds who do the Brachytherapy say. There is certainly a lot to consider. At the end of the day I just want to live and whatever it takes to do that I will take it on the chin, (Or below the belt Ha)

Thanks again

User
Posted 23 Sep 2014 at 16:12

Hello again Lyrical.
My husband started at 5.9, 3+4 and just as yours was found it was a last minute decision by the GP to add PSA to a blood test and from there we are where we are.
He had a year on active surveillance, and on 3rd June this year he had 58 brachytherapy seeds implanted. Just prior to my John's procedure, member Kennt also had it done.
If you look at both profiles it may give you some sort of guidance. Remember though that everyone is different.
Good luck with your choice.

We can't control the winds - but we can adjust our sails
User
Posted 23 Sep 2014 at 18:46

I went down the surgery route, and have no regrets.  PSA is undetectable at the moment, but should it start to rise RT is a possibility.  I was not suitable for Braccytherapy as I went into retention after I had a template biopsy.  No signs of movement north after 5 months, but I can still look sorward to plenty of golf!

Stay Calm And Carry On.
User
Posted 23 Sep 2014 at 18:55

Hi John & Sandra

Thanks for the post. I have just read your "blog" and updates and found it very encouraging. I also found my self smiling at some of your comments, as did my wife, Ann. I realise everyone is different but am hopeful that I have the option of Brachytherapy as it seems to me my best route. The experts may tell me different of course. Agree totally with you John,I have had no symptoms at, that is until they told me about the cancer. The mind playing games maybe? I will keep an eye on your future posts and I am sure with your positive attitude all will be well. Onward & upwards as they say. Take care, Alan

User
Posted 24 Sep 2014 at 00:39

Hi Lyrical,
we are in Leeds as well. Brachytherapy would have been my husband's first choice but it wasn't available to him because he was considered too young; however, you are a fair bit older than he was so it may be a good option for you. My husband had surgery but found the side effects so hard to bear - plus it came back and he ended up needing salvage hormone treatment and radiotherapy anyway. Now, it all seems a long time ago, he is absolutely healthy and we have found a new 'normal' life.

In comparison, my dad was your age at diagnosis and chose surgery, he was in remission for 13 years although it has come back recently. My father-in-law was worried about side effects and opted to do nothing .... he lived for only 4 years.

Whichever treatment path you choose, whether that is radical treatment or active surveillance, buy into it wholeheartedly because regret can be very difficult to bear.

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

User
Posted 24 Sep 2014 at 13:11

HI LyneEyre, thanks for you reply.

I think Brachytherapy would be better for me but the experts may not think I am suitable. I have just read an article in the Mail regarding Kenny Jones, (Small Faces & The Who) fame. He had Brachytherapy 4D treatment which is only available in one hospital in Surrey. Very interesting and he seems to have suffered minor side effects and is recovering well. It was most encouraging. I'll have to move darn 'sarf and get it done too,lol. They offered me watch & wait but that is totally out of the question, would be like living with a time bomb inside me and I know I would not cope. 

I was interested what you said about your Dad having surgery and it has unfortunately returned. That is really a shame, hope he is OK. The consultant I spoke to told me that whichever treatment I have the cancer can return. However on a different website i read an article from an expert stating that surgery means the cancer cannot return but with radiotherapy it can. I know he is wrong on that one, maybe he is a surgeon drumming up business. 

So pleased your husband is now "back to normal" and living a full life. I worry about the effect all of this is having on my wife, she seems more worried than me. We talk a lot about it, even joking about "other ways" I will be able to carry out my husbandly duties afterwards. But I know her too well and can tell whats going on in her mind. 

You are right when you say regret can be difficult to bear, true words indeed.

User
Posted 17 Oct 2014 at 20:47

I have a meeting on Wednesday next week to discuss the surgery option, still await appointment to discuss Brachytherapy. It seems at first everything was 100 miles an hour and now slowed down somewhat, obviously they are not in as much as a hurry to resolve my problem as I am. Hopefully this means they don't think my situation is that urgent maybe, or they are very busy. The waiting is the worst part as I just want something to happen. Patience has never been my strong point though.

Read loads of stuff on Prostate Cancer, online, newspapers, magazines, fact sheets etc. Spoke to other men who have had treatment in the past. Hasn't really made my mind any clearer though, still confused as to the best option. Perhaps it would be better if they told me what would be the best for me and took the decision out of my hands.

Anyway I'll let you know what they say on Wednesday. 

User
Posted 18 Oct 2014 at 00:18

Hi Lyrical,

There is almost too much information out there.That is what I found. And despite all that information, there is no one or no way to decide what is going to be the best treatment for you.

Only you can decide that. And that will be with all the mixed up information that there is.

If it helps? I decided that I wanted it "OUT". No "ifs" no "buts" just "OUT". I weighed up all the pros and cons and decided for a robotic surgery. It went well but I did not do so well afterwards, with some complications and side effects. That said I would not change a thing, even after seeing that eChannel 4 programme recently.

What ever you do decide to go for, go for it 100%. And don't look back.

ATB

Dave

User
Posted 22 Oct 2014 at 18:29

So today I had a nice long chat with the actual surgeon who will do my op, if I decide to take that course of action. Very straight talking, answered all my questions and I didn't feel pressured at all. When he left the staff nurse gave me all the relevant information as to what would happen if I have the op, the side effects, the after effects and the pro's & con's. I was told that because my cancer is localised and relatively small I do not have to rush into my decision, even suggesting that i may want to wait until the New Year so I can enjoy a normal Christmas. They also suggested I talk to the Brachy team to see what they say before making my choice. Basically though what they said was if I have surgery and the cancer returns in the future I can then have Beam Therapy, but if I have Beam or Brachy and the cancer returns, although I could have surgery the long term after effects, ie: Incontinence & erectile dysfunction, would most probably be more severe. 

They gave me an information pack with how to do Pelvic exercises to strengthen the bladder muscles and prostate area before the op, and advised me to stop or cut down my smoking and improve my overall fitness as this would aid my recovery. Makes complete sense to me.

So a lot of thinking to do in the next few weeks, hopefully I will make the correct one.

User
Posted 22 Oct 2014 at 20:48

Go for surgery, get rid of it in one go then you can consentrate on living and get your life back, I did 12 months ago with no regrets, you won't feel a thing, and you get to go home the next day with only a bit of discomfort for about a week, from the dreaded catheter. Do your pelvic floor exercises as of now, stay positive and if possible stop smoking, that for you is probably the most difficult, but it pays dividends when having surgery, and after.Good luck and Best Wishes Diesel.

User
Posted 22 Oct 2014 at 23:54

It's your decision but you are doing the right thing in obtaining all the info you can. 6 months post op my latest psa is <0.01.

Stay Calm And Carry On.
User
Posted 23 Oct 2014 at 09:04

I'm certainly not pushing the Brachytherapy Lyrical, I've already commented on our situation above and at the end of the day the decision can only be for you and your wife.

I would just say though to go ahead with the meeting regarding it. All knowledge is power.

John was told in the January that something needed to be decided so we started down the enquiry route but nothing happened until June. Like you, his prostate was small and cancer contained and we had time to consider.

There are members on here not in the same "fortunate" position of having time.

Our surgeon was different to yours. He thought any other option was irrelevant and was dismissive of the Brachy. He also emphasised that if Brachy was our preferred route then NO surgery would happen afterwards 
You appear to have been told that it can - even with the proviso that after effects may be worse.

Radiology consultant told us surgery COULD go ahead after Brachytherapy although it is more difficult, and in any case she said there were other salvage treatments available. So, two doctors - different views.

Much like on here really. Many members for surgery, many trying to do all they can to avoid it.

All I can add is that (so far anyway) there are no major problems. No incontinence since the initial situation following the implants
Tamsulosin is currently sorting out mild urine retention although John was advised to double them until he has a camera down. Intimate  life pretty well back to normal although it needs more "planning" than it previously did !

John was never very interested in investigating Prostate Cancer, the treatments or the possible side effects. I had to do all that. There is such a mine of information out there and it does become confusing.
I found it helped to do a little chart type thing laying out the treatments, possible side effects etc. By looking at them laid out like that we were able to number our preferred options for the possible best outcome which would suit us.

Good luck with any decision you make.

Best Wishes to you and your wife. Glad she is on this journey with you.

 

Edited by member 23 Oct 2014 at 09:07  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 23 Oct 2014 at 11:17

Thank you all for your comments, as usual very helpful. I have just been doing a little research on my surgeon, (name removed by Moderator) Royal Hallamshire in Sheffield, as I wanted a little more background info. He did his first Robotic assisted prostatectomy in January this year and has since carried out over 150 procedures. He is the head man in Sheffield and now trains other surgeons in this field using the Da Vinci surgery. When I first read this I though "He's not very experienced" but he seems to have  good track record. 

Still await appointment to see someone in Leeds regarding brachytherapy, rang this morning and I should hear something within the next 7 days.

As mentioned by others there is so much information out there that you can confuse yourself and over think things. What I, and others I would think, in my situation would prefer is for someone to say "These are the options available but the most suitable one for you would be ?????? ", but no-one does this and you are left to make the choice. This seems to be a lot of additional pressure to put on people in my opinion. It seems a little like buying a new car, with the Ford dealers telling you theirs are best, the Vauxhall one saying its theirs, and so on, with them all selling their service. Maybe it's just me who thinks like that, lol. I have compiled a comparison chart listing the pro's & con's of the treatments to try and help my make my decision.

Thank you all once again, hope everyone is fighting fit. 

Edited by moderator 23 Oct 2014 at 11:48  | Reason: Not specified

User
Posted 16 Jan 2015 at 10:29

Hi everyone

Having had time to way up the pro's & con's of the treatments offered to me I have decided to go for Brachytherapy. Had a call this morning and treatment has been scheduled for 28th January at Leeds so not long to worry about it. I will let you know how it goes. Thanks for all your support.

Alan

User
Posted 16 Jan 2015 at 12:31
Hi Alan,

Glad you have finally made your decision.

I just wanted to wish you all the luck in the world with your treatment. I'm sure it will go well.

Best Wishes,

Steve

User
Posted 16 Jan 2015 at 12:54

Cheers Steve. I hope you recover well too, you deserve a break after all you have been, and are still going, through. How many Robins did you kill by the way? ha. Onward's & upwards this year I hope.

Alan

User
Posted 16 Jan 2015 at 13:24
Thanks Alan,

Fingers crossed!

Steve

User
Posted 16 Jan 2015 at 13:36
Alan there are a few recent posts on brachytherapy procedures on the forum very much the treatment of choice if it is considered the most appropriate for your specific needs. The team at Leeds have a good reputation so you'll be in the best hands.

I wish you the best of luck for your procedure later this month.

Xxx

Mo

User
Posted 16 Jan 2015 at 14:18

Alan

Good luck with your treatment. Hope all goes well.

Paul

Stay Calm And Carry On.
User
Posted 29 Jan 2015 at 18:17

Had my Brachy treatment yesterday morning, 70 seeds I believe, although I was a little groggy when my consultant was telling me what she had done. I was awoken by a lovely nurse afterwards who offered me tea & toast and 2 hours later I was discharged. Pee'd like a race horse on waking but by the time I had returned home I was struggling to pass anything of significance. Was given a months supply of Tamsulosin to help and by last night things were coming along great guns. Retired to bed around 1030pm and woke twice to pee. This morning I had a strong flow and that has remained the same all day. Only problem I am experiencing is sitting, which is sore & uncomfortable, but that is to be expected after having 27 needles stuck in the undercarriage,lol. 

I have to go for a check up in 6 weeks time back in Leeds so fingers crossed. I have been told that things will get worse over the next few weeks so it' s a case of wait and see.

Onward's & upwards hopefully

Alan

User
Posted 29 Jan 2015 at 19:35

Sounds excellent. Good luck with your continued recovery.

I wasn't recommended for Brachy as I went into retention after my template biopsy. Had a pee after the op, but when I got home, nothing more than a trickle, so next morning it was off to A and E for a catheter and my first night in hospital since I was 5. Happy memories - not!

Keep us up to date.

Paul

Stay Calm And Carry On.
User
Posted 26 Feb 2015 at 13:12

So it is now 4 weeks since my implants and thought I would post an update. I have to admit I have struggled at times with the side effects, very painful cystitis and waking up to 5/6 times every night to pee. At one point the pain was so bad I rang my GP who said I had radiation cystitis caused by the implants, not a common side effect so I guess I am just unlucky. I have been taking my Tamsulosin daily as advised but thought about knocking them off for a day or two to see how things panned out, I decided against his though. The last 2 weeks I have been getting a pain in my perineum after peeing which lasts around 30 seconds or so. I haven't been out much because of the urgent need to pee so I am thankful I don't have to go to work. After the first 2 weeks I had terrible constipation but taking senna each night has sorted that problem out. On a plus side I can manage and maintain a full erection, I can't do anything with it though as the penis is far too painful. Have to be patient on that score. 

I realise it's early days and the side effects will ease, or so I am assured. I have to go for my 6 weekly check up in 2 weeks time so fingers crossed everything is as it should be. I have been doing everything by the book, so to speak, Decaf tea, cranberry juice, drinking plenty of water , but I am now longing for a nice frothy cappuccino which I was addicted to. Oh well, we have to make some sacrifices I suppose.

Hopefully when I next post again things will have improved. Onwards & upwards.

User
Posted 28 Mar 2015 at 17:38

So it is now 8 weeks since I had the Brachytherapy and thought I would update everyone on my progress. Things have not been easy as I mentioned in my earlier post, terribly painful cystitis, waking up 6 times every might to pee, pains afterwards etc. so much so that I have at times questioned my decision to have the treatment. However, I had my 6 week check and my doctor seems very happy with the way things have progressed. I had a CT Scan at the same time and a blood test. My PSA is down to 5.0 which she says is satisfactory and the scan shows that the seeds are still where they should be, so that's all positive.

I still need to pee quite often and at night am usually up 2/3 times most nights so very tired the next day. I have not been venturing out very much as I need to be close to a toilet at all times "just in case". I am usually fine in the mornings but things go downhill after 3 pm onward's. It would have been impossible for me to work because of this so I am pleased I have not taken any bookings for the immediate future ( I am a Party/Karaoke DJ). Hopefully when things improve I will be able to take some more bookings but thankfully there is no rush. 

Things have settled down a little over the last week so hopefully that progress will continue and I will be able to get out & about and get away on holiday later in the year. Onward's & Upwards.

User
Posted 13 Apr 2015 at 19:45

 

Hi all, Just thought I would give you an update. Thankfully things are improving. Last week I was much, much better, hardly needing the loo during the day, maybe once per hour at most. I felt quite normal again at last. Night times weren't as good, up on average 3 times, but quite manageable. The pain I had after peeing was still there but not as severe. On Saturday afternoon I DJ'd for our granddaughters birthday party for 3 hours and coped really well, only needed to pee twice. And my old zip was back along with my usual patter, I was organising games etc, so I was really chuffed with that. I was really tired later that night but that was to be expected. 

Next day however I suffered. Pain returned, peeing up to 4 times per hour and felt uncomfortable all day. Perhaps it was due to standing up for 3 hours or lifting my gear, or maybe it was the late meal we had, fish chips & mushy peas, not sure, but I was feeling down after the last weeks upturn. Today though I have been great again, hardly needed the loo and the pain is barely noticeable. So hopefully yesterday was just a blip. 

Can I remind some people on here to empty their in-boxes, Devon_Lad I cannot get in touch with you as yours is full. Thanks.

Hope everybody on here is doing fine. Onward's & upwards.

Lyrical

 

User
Posted 13 Apr 2015 at 20:34
Hello, I read this with interest as you know my other half has been suffering similar side effects. He is still suffering burning nearly every pee, up in the back passage too, also he can't sit down for long due to the pain inside. He is standing up nearly all day working, in the eves he lays down on the bed so he doesn't have to sit. When I say eves it is now 8.30pm and he just nipped in to say he still has a lot to do outside, so I guess I mean nights rather than eves!

Tractor work is getting more frequent now as the land needs work, riding in the tractor is causing him a lot of discomfort.

I decided to phone the consultant myself as he wouldn't. The secretary got the consultant to speak to the OH on his mobile. He then went off to discuss things with the other consultant. They have already told him to take tamulosin twice a day (which I think is making him pee so much night and day?) also prescribed anti-inflammatories, which he didn't like taking due to them upsetting his tummy. They have now put him on strong antibiotics for 4 weeks (ciprofloxacin) he took these for 8 weeks after the biopsy, as he had prostatitis caused by the biopsy. He is a little worried at taking such strong antibiotics so much, but we'll see what happens.

All the best.

Edited by member 13 Apr 2015 at 20:41  | Reason: Not specified

User
Posted 23 Sep 2015 at 17:25

Hi all

Just came on to update my posts and realised that it is exactly a year since my first post after I had been diagnosed. Its been a rocky road these last 12 months but hopefully I am on the right track now.

Yesterday I had my check up, second one since having the Brachytherapy in January. The doctor has just phoned me with my PSA results and it's now down to 1.1. Such a relief to know it s going in the right direction. It has been a little worrying waiting for this news but now I can breathe easily for a while. I know it is still early days but I remain positive. 

Onwards & upwards

Alan

User
Posted 23 Sep 2015 at 17:42

Hi Alan, really good news for you, excellent news in fact.

You made the correct choice for you and it has paid off. I really admire your courage in opting for Brachy, I could not get my head around having "it" inside me, even if "it" was zapped to death.

Your success will give hope to others who are at the decision stage. Even so, I have no regrets.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 23 Sep 2015 at 21:32

Hello Alan. Well done on the PSA reduction.

It is a very very anxious time waiting for the PSA results following Brachy but isn't it a wonderful feeling when they come back and it's down yet again

We can't control the winds - but we can adjust our sails
User
Posted 24 Sep 2015 at 16:30

Hello, that is good news isn't it. It makes the side effects a bit more worthwhile. My OH had a psa test in May it was 0.78 (Brachy done in Jan) then he had another psa test this week, it was 0.76 so not much reduction in 3 and half months, but it is heading in the right direction. All the best.

 
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