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Biopsey

User
Posted 27 Nov 2016 at 15:22
Hello my name is Mike I'm 60 years old. I am knew to this site in fact completely new to all of the words prostate cancer. I am hoping that I can gain some advice here as at the moment my head is alover the place as my go did a psa test on me only last Monday as Iv had passing urine problems over the last month. The results came back on the Wednesday with a high reading which was 11.9 he immediately fast tracked an appointment to my local hospital. Then on the Thursday the hospital phoned me up and has made an appointment for me to go in this Monday 28th Nov. For. Biopsey. All this has happen to quick for my brain to deal with it . It was be serious for all this to happen with one week. Can any one help me as I'm so confused with it all and I'm suppose to be having this Trus biopsey tomorrow. Many thanks

Mike

User
Posted 27 Nov 2016 at 21:05

Hi Mike

I know this can be a very worrying time.  I went from being told I have a raised PSA in early September to Brachytherapy in early November.

I am 50 and had no previous symptoms, I only had a PSA as part of a routine medical at work as it was free add-on for over 50s.  To start with, I was quite optimistic that the PSA score was a false positive so after an MRI and then a Biopsy to be told I had a Gleason score of 3+4 at T2c it was a shock.

I found the speed of my diagnosis and treatment a real positive.  It meant that I quickly got to knowing if I had an issue rather than worrying about unknowns but sufficient time to do some research and make an informed and balanced decision about the treatment I wanted.  That is not to say it wasn't scary along the way.

For me the following worked to help make sense of it all:

Keep a file of research, letters etc and a notebook.  It helped me to go back and look over things and get it straight in my mind. In addition, I found I needed to pick-up a lot of new medical jargon

Take time off immediately after diagnosis.  Being confident there was nothing wrong, I didn't do this and really wish I had. If I had my time again I would book the rest of the day off after my post biopsy appointment and the next day as well.  I would have benefited from time to start to rationalize the diagnosis; instead, I went from bad news at the hospital straight into a client meeting the same day and back to work the next.

Think whats important for you.  If its bad news, think about what is important to you and the outcomes you want.  I was lucky as the cancer was found early and I had a number of possible treatments, however they are not all equal.  I used information from this web site and my doctors to consider the best way forward for me (as Ray says don't over Google)

Don't forget you are not alone.  Talk about your feelings and what you are worried about with your family, friends and medical staff.  Everyone I spoke to has been super supportive and helpful.

I hope it all works out for you

C

 

User
Posted 27 Nov 2016 at 19:10

Hi and welcome Mike

Just see the quickness as your GP and hospital being on the ball not as doom and gloom. The biopsy itself is usually no more than a discomfort. They might arrange some scans.

Good luck

Ray

User
Posted 27 Nov 2016 at 19:14

Hi Mike,
I'm the same age as you, and was diagnosed with prostate cancer on 13th October this year. The biopsy is pretty standard with a raised PSA. I had one at PSA 4 last year which came back clear, this year PSA 7 and a positive biopsy. Many things can cause a raised PSA but the doctors wont know for sure until they do the biopsy. There are people on this site that have levels around yours that after biopsy just had enlarge prostates.
The biopsy is a bit uncomfortable, get some paracetamol you may get a dull ache when the local wears off.

Welcome to the site and please come back if you want a chat or some advice.
All the best and good luck.
Nigel

User
Posted 27 Nov 2016 at 19:16

Hi Mike

So sorry you have had to join the forum - but I know from experience that you'll get brilliant support from people here. I'm sure that someone with more knowledge than me will provide some answers soon but first thing to say is that the PSA score isn't as awful as it might at first appear. My partner's PSA was in the high 400s by the time he got referred - it's down to 62 after 4 months of treatment and there are people on this forum who have much higher PSA scores and they are still going strong. It's just one possible marker for prostate cancer. The biopsy will be another. So try not to panic (impossible I know - this is absolutely the worst bit when you are just trying to get your head around the news and don't know where to turn) - the speed of referral is fantastic and will stand you in good stead whatever the outcomes.

I suggest you download the Toolkit from the 'publications' page of this site - a set of leaflets that give a really clear explanation of prostate cancer, what it is, how it is diagnosed (including info about biopsies) and possible treatments. It might help if you write down all the questions buzzing round your head and take a pen and notepad with you (and a friend / family member if possible) to record the answers. The Toolkit includes possible questions - we found it really helpful.

Good luck tomorrow Mike - let us know how you get on.

Cheers

Eleanor

User
Posted 27 Nov 2016 at 19:53

Hello Mike,

Welcome to this forum though sorry for the reason that brings you here. Did your GP do a DRE (Digital Rear Examination) or put simply a finger up your bum to feel whether this Prostate is palpable, irregular or enlarged or is the biopsy being done just because you have urination problems and the PSA is above would is normal for a man of your age? Sometimes there are other reasons why PSA is raised. An infection can do this and GP's sometimes do urine tests to rule this out. Another reason for an elevated PSA is an enlarged Prostate, commonly known as BPH for Benign Prostatic Hyperplasia. There are some other reasons why a  PSA may be slightly raised too. Some hospitals do an MRI scan before a biopsy whilst others biopsy first.

The Trus biopsy usually involves inserting between 8 and 12 needles into the Prostate through the rectum. Most men find this not too bad - it's like being flicked with a rubber band. Cores removed are examined in the lab and if any cancer is found it is graded according to the Gleason scale also taking account of the percentage any position of cancer in each core. It is important that antibiotics are taken after this biopsy in order to fight any infection

When your Prostate has recovered from the biopsy you may have an MRI scan and quite possibly a bone cancer depending what is found.

Do let us know how you get on and the results. PCa has not yet been confirmed.

Edited by member 27 Nov 2016 at 20:00  | Reason: Not specified

Barry
User
Posted 27 Nov 2016 at 20:55

Mike

Firstly never a need to say sorry for expressing your health and emotional thoughts here.

MRI scan pre biopsy is relatively new for the reasons you gave. However like me many have had a biopsy before some type of scan. In my case I needed two biopsies but that's not common.

Leave Google alone if you can.

Ray

User
Posted 27 Nov 2016 at 21:55

Hi Mike

You have already had some great advice here. As Craig indicated, once the system kicks in, it goes very quickly with different appointments - scans, consultants, etc. But it will depend on your diagnosis and what you decide to do - don't forget you haven't been diagnosed with PCa. The biopsy will be the starting point. Barry described it perfectly - it is a slight discomfort. I have had three biopsies and each one was similar in experience.

As you will find from other posts, there is always some waiting. So you will be waiting for the results of the biopsy and any scans they may order up. It may be just a couple of weeks, but it can be a worrying period waiting for the actual diagnosis. Craig's advice about taking the day off and perhaps the following day is a good recommendation - as well as having someone else there with you to take notes and support you.

Regarding telling your son. I haven't told my mother or sister because they will worry, and I will leave that as long as possible. I have told work colleagues and some friends. It is a very personal decision and nobody can tell you what to do. You just have to do what you feel is right.

Good luck - as you have already discovered, you have friends here who understand what you are going through.

Chris

User
Posted 27 Nov 2016 at 22:09
Mike

No doubt the hospital will give you all the post biopsy advice but just be aware you will probably have blood in your urine and semen for a few days or weeks after the biopsy. As some have said slightly uncomfortable.

Thanks Chris

User
Posted 27 Nov 2016 at 23:25

Hi Mike,

Fortunately for me the doctor at my initial hospital appointment suggested I had the biopsy there and then so I didn't have time to worry. I was given a dose of antibiotics to avoid any infection. The biopsy in itself is more discomforting than anything. You lie on your side and a local anaesthetic injection is administered via your rear end. Some time given for it to take effect then you will hear a clicking sound as each sample is taken. Once finished you will be allowed home once you can pee properly. Hope all goes well.
I am of a similar age so please feel free to check out my profile.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 29 Nov 2016 at 20:18

Having a cystoscopy is not embarrasssing when you consider that yesterday you let someone stick things up your bum! It shouldn't be painful either - |I have had a few and although the plumbing is different, the process is the same!

It does seem that they are quite concerned but that doesn't mean they know it is cancer - there is clearly something wrong and they just need to get to the bottom of it for you. Some of your symptoms are similar to those other men with PCa expereince but others sound more like a kidney problem - perhaps they are checking for stones? No point guessing what is going to happen - the time until biopsy result will actually pass quite quickly.

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

User
Posted 29 Nov 2016 at 20:44
Mike

Just coming up to my three year anniversary of diagnosis and I have lost any sense of embarrassment from the procedures I have had. From personal experience,in the hands of the right guy the cystoscopy is completely painless in the hands of the wrong guy it is slightly uncomfortable.

Thanks Chris

User
Posted 30 Nov 2016 at 23:05

Hi Mike, my PSA was 8.9 last year when I had a biopsy, then hit 15 when I had an MRI scan and a template biopsy and is now 15.8 but no signs of cancer, so it isn't always bad news. I have been having urination problems for 10 years and I am now 56. My prostate is quite large so it looks like my problems are BPH and infection, hopefully you will be the same. At least your urologist is doing all the right tests and quickly so you will know one way or the other very soon, it took a year for me to get through the various tests with many months of worry in between. I hope it all goes well for you

Alan

User
Posted 21 Jan 2017 at 11:44

I hope my own story can help to alleviate some of the worries weall have when diagnosed.

I had no symptoms and only found out after my physiotherapist did a PSA test to look at bone chemistry ( I have chronic back pain). The result was 8.9, which is double what it should be for my age (66).  My GP did a rectal exam and referred me to the Urology Dept.  They did an MRI, follwed up by biopsies.

Please, do not worry about having biopsies.  I had oral and IV antibiotics, then lay on my side. The rectal probe is only about as thick as your thumb. Just relex and let it in. Next was a local anaesthetic jab, which I hardly felt.  Then the dreaded biopy needles!  To be honest I didn't feel these at all.  You just hear the click as the biopy is taken.  I had 12 taken.  After that I came home.

The first 2 times I went for a pee, there was a bit of blood and it also appeared in my semen for a few days.  No pain, no discomfort.

I got my diagnosis a couple of weeks later.  In the meantime I had done a lot of reading and research.  A word of warning.... IGNORE all the American stuff.  They will tell you about many treatments available, but a lot of them are still experimental and not available here. Also, they just seem to be advertising themselves.

Next I met the surgeon who explained the results and told me that the cancer was on the left-hand side and totally contained, although right up to the margin. It was deemed too agressive to leave alone.  The options were robot-assisted surgery or radiotherapy/hormones.  I met and oncologist from the Christie hospital who told me that she would put me on 6-12 months of hormones, followed by 22 sessions of readiotherapy.  She ruled out Brachytherapy, which I would have liked.  I really didn't want the side-effects of hormones or external beam therapy, so decided there and then to have the surgery.

I must stress that the doctors I saw were careful to explain fully, their own treatments.

I had my surgery at Stepping Hill Hospital in Stockport on 2nd December 2016.  I think I was asleep for 5 hours.  I woke with 5 small wounds, a catheter, but no drain.  The only painkillers I had were paracetamol and ibuprofen.  I was allowed home the next afternoon.

The wounds were quite painful, but I had no pain inside for over a week.  Unfortunately my body didn't like having a catheter and I had painful spasms when my bladder tried to expel it, along with urine by-passing it.  I realise that not everyone has this but I wasn't warned.  The catheter and staples came out 12 days later ... such a relief.  After passing 3 urine samples and scans to show my bladder was emptying sufficiently, I came home, wearing a rather large pad in my pants!  The urology nurse gave me a bag full of information, pads, etc., from Prostate Cancer UK.

Now, 8 weeks later, I only have a tiny bit of stress incontinence. I have never wet myself and only use one thin pad a day.  I do not pee while asleep but do have to get up a couple of times to go to the bathroom.

I saw the surgeon this week, who told me that my PSA was 0.01, indicating that the cancer has gone.  There will be a follow-up in 6 weeks.  He also prescribed daily Viagra for a few weeks, along with a vacuum pump, to help get my erections back.

The message I would like to get across is that you should listen to the experts, do your own research and don't put off treatment, just because you are worried about the side-effects.  If I hadn't had the test, I wouldn't have known I had cancer and 5-10 years down the line it wouldn't have been curable.  I feel so lucky.

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User
Posted 27 Nov 2016 at 19:10

Hi and welcome Mike

Just see the quickness as your GP and hospital being on the ball not as doom and gloom. The biopsy itself is usually no more than a discomfort. They might arrange some scans.

Good luck

Ray

User
Posted 27 Nov 2016 at 19:14

Hi Mike,
I'm the same age as you, and was diagnosed with prostate cancer on 13th October this year. The biopsy is pretty standard with a raised PSA. I had one at PSA 4 last year which came back clear, this year PSA 7 and a positive biopsy. Many things can cause a raised PSA but the doctors wont know for sure until they do the biopsy. There are people on this site that have levels around yours that after biopsy just had enlarge prostates.
The biopsy is a bit uncomfortable, get some paracetamol you may get a dull ache when the local wears off.

Welcome to the site and please come back if you want a chat or some advice.
All the best and good luck.
Nigel

User
Posted 27 Nov 2016 at 19:16

Hi Mike

So sorry you have had to join the forum - but I know from experience that you'll get brilliant support from people here. I'm sure that someone with more knowledge than me will provide some answers soon but first thing to say is that the PSA score isn't as awful as it might at first appear. My partner's PSA was in the high 400s by the time he got referred - it's down to 62 after 4 months of treatment and there are people on this forum who have much higher PSA scores and they are still going strong. It's just one possible marker for prostate cancer. The biopsy will be another. So try not to panic (impossible I know - this is absolutely the worst bit when you are just trying to get your head around the news and don't know where to turn) - the speed of referral is fantastic and will stand you in good stead whatever the outcomes.

I suggest you download the Toolkit from the 'publications' page of this site - a set of leaflets that give a really clear explanation of prostate cancer, what it is, how it is diagnosed (including info about biopsies) and possible treatments. It might help if you write down all the questions buzzing round your head and take a pen and notepad with you (and a friend / family member if possible) to record the answers. The Toolkit includes possible questions - we found it really helpful.

Good luck tomorrow Mike - let us know how you get on.

Cheers

Eleanor

User
Posted 27 Nov 2016 at 19:53

Hello Mike,

Welcome to this forum though sorry for the reason that brings you here. Did your GP do a DRE (Digital Rear Examination) or put simply a finger up your bum to feel whether this Prostate is palpable, irregular or enlarged or is the biopsy being done just because you have urination problems and the PSA is above would is normal for a man of your age? Sometimes there are other reasons why PSA is raised. An infection can do this and GP's sometimes do urine tests to rule this out. Another reason for an elevated PSA is an enlarged Prostate, commonly known as BPH for Benign Prostatic Hyperplasia. There are some other reasons why a  PSA may be slightly raised too. Some hospitals do an MRI scan before a biopsy whilst others biopsy first.

The Trus biopsy usually involves inserting between 8 and 12 needles into the Prostate through the rectum. Most men find this not too bad - it's like being flicked with a rubber band. Cores removed are examined in the lab and if any cancer is found it is graded according to the Gleason scale also taking account of the percentage any position of cancer in each core. It is important that antibiotics are taken after this biopsy in order to fight any infection

When your Prostate has recovered from the biopsy you may have an MRI scan and quite possibly a bone cancer depending what is found.

Do let us know how you get on and the results. PCa has not yet been confirmed.

Edited by member 27 Nov 2016 at 20:00  | Reason: Not specified

Barry
User
Posted 27 Nov 2016 at 20:29

Many thanks to you Ray, Nigel & Eleanor for your quick replies. I'm glad I have found this site & forum that we can send posts on. I am very nervous for tomorrow. I have not stopped worring since Wednesday as it's as though I have been thrown in the deep end. I have read that there is an mp MRI scan that could scan the the prostate glan & detect if there are any abnormalities & if there is it's better to do the biopsey after this scan as the surgern would know exactly where to insert the needles for the biopsey. As doing the biopsey first they don't know what area to take the samples from. I'm not sure if this is the case or not,it's just I read this on some site. I had a rectal examination back in June this year as I was not feeling well as I had bad pain in my lower back & legs and my walking was being affected because of the pain as well as suffering with constipation and the urgency to go to the loo to pee as well as having a swollen stomach & as far as I know there was not any concerns from the doctor regarding the rectal examination, they just put it down to my lumber spine as I have had surgery on my back some years ago. But this conviction just seems to of got worse, the last month has been awful regarding passing water. The doctor treated it as a infection in the bladder he said the test showed ecoli in the water ample & gave me a course of antibiotics. I was in so much pain trying to pass water then when that eased with the antibiotics I suddenly had to race to the toilet to pee may be every 10. 15 minutes all this has been going on for the last month & that's when the doctor last week decided to do this blood test for the psa, and then it's just snowballed from there. I'm thinking may be this has been going on longer since I first seen the GP back in June & now months later it's just got so bad where my water works are concerned as it's almost at the point of being in continent as I can not hold putting of going to the loo,on a few occasions Iv wet my self for not getting to the loo in time. Sorry to go on.

User
Posted 27 Nov 2016 at 20:38

Thanks Barry for your post. When I was in with the Gp last Wednesday to get the results for the psa & urine test, the urine test was clear but the problems of me running to the loo has got worse. He decided there was no need to do the rectal examination cause I think he was convinced this needed looking into that why he fast tracked it.

User
Posted 27 Nov 2016 at 20:42
Originally Posted by: Online Community Member

Thanks Barry for your post. When I was in with the Gp last Wednesday to get the results for the psa & urine test, the urine test was clear but the problems of me running to the loo has got worse. He decided there was no need to do the rectal examination cause I think he was convinced this needed looking into that why he fast tracked it.

User
Posted 27 Nov 2016 at 20:55

Mike

Firstly never a need to say sorry for expressing your health and emotional thoughts here.

MRI scan pre biopsy is relatively new for the reasons you gave. However like me many have had a biopsy before some type of scan. In my case I needed two biopsies but that's not common.

Leave Google alone if you can.

Ray

User
Posted 27 Nov 2016 at 21:04
Thanks for your reply Ray
User
Posted 27 Nov 2016 at 21:05

Hi Mike

I know this can be a very worrying time.  I went from being told I have a raised PSA in early September to Brachytherapy in early November.

I am 50 and had no previous symptoms, I only had a PSA as part of a routine medical at work as it was free add-on for over 50s.  To start with, I was quite optimistic that the PSA score was a false positive so after an MRI and then a Biopsy to be told I had a Gleason score of 3+4 at T2c it was a shock.

I found the speed of my diagnosis and treatment a real positive.  It meant that I quickly got to knowing if I had an issue rather than worrying about unknowns but sufficient time to do some research and make an informed and balanced decision about the treatment I wanted.  That is not to say it wasn't scary along the way.

For me the following worked to help make sense of it all:

Keep a file of research, letters etc and a notebook.  It helped me to go back and look over things and get it straight in my mind. In addition, I found I needed to pick-up a lot of new medical jargon

Take time off immediately after diagnosis.  Being confident there was nothing wrong, I didn't do this and really wish I had. If I had my time again I would book the rest of the day off after my post biopsy appointment and the next day as well.  I would have benefited from time to start to rationalize the diagnosis; instead, I went from bad news at the hospital straight into a client meeting the same day and back to work the next.

Think whats important for you.  If its bad news, think about what is important to you and the outcomes you want.  I was lucky as the cancer was found early and I had a number of possible treatments, however they are not all equal.  I used information from this web site and my doctors to consider the best way forward for me (as Ray says don't over Google)

Don't forget you are not alone.  Talk about your feelings and what you are worried about with your family, friends and medical staff.  Everyone I spoke to has been super supportive and helpful.

I hope it all works out for you

C

 

User
Posted 27 Nov 2016 at 21:23

Many thanks Graig & everyone else for your replies and support, I'm so glad that Iv found this site as everyone seems to be so supported and at times like this it's so much appreciated. At the moment it's only myself & partner knows about what I'm going through at the moment. I do have one son who is 32 years old who live within 3 miles of me and we are very close as I brought him up on my own since he was 11 years old. I have not involved him as yet as I DIDT want any unnecessary worry for him. Once I have the results I'll probley tell him then. I hope I'm doing the right thing. Mike

User
Posted 27 Nov 2016 at 21:55

Hi Mike

You have already had some great advice here. As Craig indicated, once the system kicks in, it goes very quickly with different appointments - scans, consultants, etc. But it will depend on your diagnosis and what you decide to do - don't forget you haven't been diagnosed with PCa. The biopsy will be the starting point. Barry described it perfectly - it is a slight discomfort. I have had three biopsies and each one was similar in experience.

As you will find from other posts, there is always some waiting. So you will be waiting for the results of the biopsy and any scans they may order up. It may be just a couple of weeks, but it can be a worrying period waiting for the actual diagnosis. Craig's advice about taking the day off and perhaps the following day is a good recommendation - as well as having someone else there with you to take notes and support you.

Regarding telling your son. I haven't told my mother or sister because they will worry, and I will leave that as long as possible. I have told work colleagues and some friends. It is a very personal decision and nobody can tell you what to do. You just have to do what you feel is right.

Good luck - as you have already discovered, you have friends here who understand what you are going through.

Chris

User
Posted 27 Nov 2016 at 22:09
Mike

No doubt the hospital will give you all the post biopsy advice but just be aware you will probably have blood in your urine and semen for a few days or weeks after the biopsy. As some have said slightly uncomfortable.

Thanks Chris

User
Posted 27 Nov 2016 at 23:25

Hi Mike,

Fortunately for me the doctor at my initial hospital appointment suggested I had the biopsy there and then so I didn't have time to worry. I was given a dose of antibiotics to avoid any infection. The biopsy in itself is more discomforting than anything. You lie on your side and a local anaesthetic injection is administered via your rear end. Some time given for it to take effect then you will hear a clicking sound as each sample is taken. Once finished you will be allowed home once you can pee properly. Hope all goes well.
I am of a similar age so please feel free to check out my profile.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 28 Nov 2016 at 22:47

Thanks Chris B , Chris & Paul for your messages. Much appreciated,
Mike

User
Posted 29 Nov 2016 at 19:15

Hi to all of you. Just thought I'd give an update. I went for my Trus biopsey yestaday ( Monday 28th ) It was a little uncomfortable but on the whole ok. As all this had snowballed so quickly since Wednesday of last week, I wanted to speak to the consultant before this procedure took place as I had numerous questions that I wanted answering. The team I seen were really kind & caring & extremely helpful & answered all my questions.The surgeon that performed the biopsey told me that the reason why Iv been rushed in to have the biopsey & not a consultanion first was because the symptoms that Iv had over the last month as well as the high psa reading.

He advised me not to put this biopsey off cause I did say to him that we had a holiday booked which was within the next 2 weeks. He also said that he wanted me to have a CT Scan on my kidneys & liver as well as a Cystoscopy down my penis to check the bladder. He said the results from the biopsey will be back in 2 weeks. He said if the results come back negative then he l perform a Template biopsey. An MRI SCAN will also be done.

So you can imagine it's still an awful lot to take in. I'm getting more convinced that they believe it is cancer unless I'm letting my imagination running away with me.

I'm not looking forward to the procedure that involves the Cystoscopy. That sounds as though that is going to be very painful & embarrassing. Has anyone had this done & if so could you advise.

Iv decided that I won t say anything to my son or anyone until I see what the results are as there is no point in letting anyone worry in case it is a false alarm. I look forward to any further advice anyone can give.
Once again many thanks Mike.

User
Posted 29 Nov 2016 at 20:18

Having a cystoscopy is not embarrasssing when you consider that yesterday you let someone stick things up your bum! It shouldn't be painful either - |I have had a few and although the plumbing is different, the process is the same!

It does seem that they are quite concerned but that doesn't mean they know it is cancer - there is clearly something wrong and they just need to get to the bottom of it for you. Some of your symptoms are similar to those other men with PCa expereince but others sound more like a kidney problem - perhaps they are checking for stones? No point guessing what is going to happen - the time until biopsy result will actually pass quite quickly.

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

User
Posted 29 Nov 2016 at 20:44
Mike

Just coming up to my three year anniversary of diagnosis and I have lost any sense of embarrassment from the procedures I have had. From personal experience,in the hands of the right guy the cystoscopy is completely painless in the hands of the wrong guy it is slightly uncomfortable.

Thanks Chris

User
Posted 30 Nov 2016 at 23:05

Hi Mike, my PSA was 8.9 last year when I had a biopsy, then hit 15 when I had an MRI scan and a template biopsy and is now 15.8 but no signs of cancer, so it isn't always bad news. I have been having urination problems for 10 years and I am now 56. My prostate is quite large so it looks like my problems are BPH and infection, hopefully you will be the same. At least your urologist is doing all the right tests and quickly so you will know one way or the other very soon, it took a year for me to get through the various tests with many months of worry in between. I hope it all goes well for you

Alan

User
Posted 01 Dec 2016 at 00:34
Hi Alan thanks for your reply and of course your advise as you have been through so much your self up till now. You say you've got peeing problems. At the moment I have to really rush to the loo as soon as I'm standing & have the feeling of wanting to do a pee. I'm sure if I ignore it & think I could hold it I would end up just weeing. It's so disabilating. When I'm in the lounge down stars in the house I keep a large glass that I wee into as rushing to get upstairs sometimes I start leaking before I get to the toilet and get my willy out. On occasions Iv put my hand down my pants to hold and squeeze my willy to stop it from starting to we.

Don t know if you have experienced anything like that. All this has been going on for over a month now. Also Iv noticed I'm not waking up with an erection anymore I always had an erection in the mornings, infact at the moment I'm not that interested in any kind of sex it's as though Iv lost the feeling or urge. Wow this body of mind seems to be packing up. Last week I was in bed along one night and I felt movement in my penis as it had started to get an erection that was the first time within the month that had happened so I wanted to know what would happen if I'd take it to the next step. Anyway cutting a long story short I decided to masterba, it did t feel the same for some reason but I continued as I wanting to see if my orgasums were the same or even if I could still have them. ( does any of this make sense to u )

When I did climaxed it scared me because I didn't produce any thick creamy sperm like I used to. All that came out was a little clear fluid, this has worried me because that's not normal. I hav t tried again since.

Can you throw any light on this side of things?

Many thanks Mike

User
Posted 03 Dec 2016 at 20:14

Hi Mike

Once you start on this process, you start to look at everything as possibly being abnormal. So my advice would be to make notes of everything, stating any changes you have noticed, etc., type it up and give it to your consultant at your next visit. It really helps them to have it written down to add to your file. Otherwise you can forget things during the consultation, and they will ask questions based on what you have noted.

When is your biopsy?

Regards

Chris

User
Posted 03 Dec 2016 at 20:15

Sorry Mike, I didn't think there were any questions in your post.

The symptoms you are describing might be some of the reasons your consultant decided to go straight for a biopsy. Difficulty getting erections, dry orgasms and difficulty weeing are all possible signs of prostate cancer.

Edited by member 04 Dec 2016 at 00:58  | Reason: Not specified

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

User
Posted 03 Dec 2016 at 20:45
M

The amount and thickness of my semen did reduce in the last few months before my diagnosis. I just put it down to getting older. Post biopsy it was pink for a while.

Thanks Chris

User
Posted 04 Dec 2016 at 00:29
Thank you Chris b, Lyn & chris. For your messages. Chris b, you asked when my biopsey was, I had it last Monday 28th Nov nearly a week ago. I also go for my CT scan tomorrow afternoon.n my partner.phoned the scan dept up to see if any appointment had been made because we were supposed to be going away on the 14th.

They were very helpful and said it had been made for the 13 th but could bing it forward to tomorrow 4 th so we decided to take that.

I'm not really sure if we should go away on the 14th with everything that is going on. I think the results of the biopsey I had done on the 28th Nov. Will come through while we away as they said it would be at least 2 weeks, plus this C T scan tomorrow the results of that . As it's abroad as well & im not really sure I feel upto it as I have to keep running to the loo all the time. I think now it is all getting to me more than before. Sorry to go on . Many thanks Mike

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Posted 04 Dec 2016 at 00:57

If you possibly can, I would go on that holiday. Whatever is going to happen will happen and it may be a long time before you can go on another one. You would have to get advice from the hospital or your GP though and check with your travel insurance though that they are still happy to cover you to travel.

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

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Posted 14 Jan 2017 at 15:59
Hi it's been 4 /6 weeks since Iv last been on line.so much has happened in this last 6 wks

I had my biopsey results come through which confirmed positive with the Gleason score of 7. Within 2 days they had me in for an MRI scan & then the next day followed a bone scan.

All this happened between the 10th & 16 th of Dec. So we had to cancel our holiday which was booked for the 14 th of Dec. Not that we minded because all these scans were more important than going away.

The only thing was with the xmas & New Year period it delayed getting the results of these scans till after which has been a very anxious time. We only just got the appointment last week 11th to see the consultant to get the results. Any way we seen him and he said as far as they could tell the cancer is confined to the prostrate & has t spread to the bones. Wow that was good news in one way. He then went on to say what options there are for me. He stated surgery to have the prostrate removed or radiotherapy. He said it's an aggressive type of cancer & it needs dealing with within the next 6 to 8 weeks.

Wow it's still an awful lot to get my head round, I DIDT like any of the side affects that was involved in both procedures which he was explaining to me. I'm still finding this all so difficult to deal with as all this has happened within a 6 wk period.

I had to tell my son as he could pick up something wrong with me, God that was the hardest thing Iv ever had to do, we both just held each other & cried it was so so difficult to see the pain that he was going through because of what was being said to him. Well we've now moved on from that step & are trying to be more positive. In fact he is doing more research to see if there is anything else available then what's been offered.

Does anyone know anything about the PROTON BEAM THEARPY IN THE Czech Republic. My son has been reading up on that & it sounds quite positive can anyone give any advice on this.

Sorry to go on, but I just wanted to bring you up to date of where I'm at at the moment. Look forward to hearing from you.

Many thanks

Mike

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Posted 14 Jan 2017 at 17:11

Can't help with out enquiry Mike but just to say I'm thinking of you all.

Such a difficult time this - when you have to make a decision.

I'm sure others will, as usual, will be along to advice

We can't control the winds - but we can adjust our sails
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Posted 14 Jan 2017 at 23:40

Hi Mike

Sorry to hear your news. I know how you feel re the decision - none of the options are attractive. As others will likely say, life is more important, but I still find it hard to come to terms with the side effects.

Timing is not great for us as new treatments are appearing but they aren't available in this country. Another member, Claret, has been doing a lot of investigation into other solutions for her husband - check out some of her posts to see what she has discovered. The problem may be your staging but worth exploring. If you want to review other options overseas, you will have to get all of your data together including the MRI scans, so be prepared if you want to pursue that.

Good luck.

Chris

 

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Posted 15 Jan 2017 at 01:12

The tension is whether to have treatment that is tried and tested where you pretty much know what the risks are OR you go for a newer option with very little guarantee that it will cure you and no data on long term effects. I think in general, older men may feel more willing to risk the innovative while younger men really want the best chance of a cure - there is no magic bullet that cures cancer without any unpleasant stuff, as much as we would all like there to be. I know I would have discounted any treatment for John that no-one can prove 10 year outcomes for. He, on the other hand, bitterly regretted the op for a long time and said he wished he had opted for a shorter life without side effects so perhaps he would have been more inclined to try one of these newer options.

As far as proton beam therapy goes, the data for PCa isn't that great so far - American research suggests that it has more or less the same success rates as EBRT and causes the same side effects re incontinence and ED. it is rather more successful as a salvage treatment than as a primary treatment.

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

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Posted 15 Jan 2017 at 07:55

Hi Mike,

As Chris says above I have researched and discussed directly with the Drs involved 2 alternative private overseas options:

Focal Laser Ablation (FLA) that is performed in multiple centres in the USA (up to G8)

TOOKAD also known as VTP that has completed stage III clinical trials across Europe but is not NICE approved in the UK due to lack of equipment in the UK (G6 and G7(3+4) ) Single sided optimal.

As Chris said you need to gather your info if you want second opinions-

CD of a MpMRI scan (3T preferable)
MRI report
Biopsy report
PSA results

It does seem for some you have to ask otherwise you leave consults empty handed. However an e mail to a consultants medical secretary will usually sort out the mussing documents.

Our GP surgery has been fantastic and 100% understand why we are considering alternatives and are asking to be kept in the loop plus we are in touch with a UK guy who has been through the USA option (he is ski-ing atm which helped our spirits as my husband loves ski-ing!)

Kind Regards

Clare

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Posted 21 Jan 2017 at 11:44

I hope my own story can help to alleviate some of the worries weall have when diagnosed.

I had no symptoms and only found out after my physiotherapist did a PSA test to look at bone chemistry ( I have chronic back pain). The result was 8.9, which is double what it should be for my age (66).  My GP did a rectal exam and referred me to the Urology Dept.  They did an MRI, follwed up by biopsies.

Please, do not worry about having biopsies.  I had oral and IV antibiotics, then lay on my side. The rectal probe is only about as thick as your thumb. Just relex and let it in. Next was a local anaesthetic jab, which I hardly felt.  Then the dreaded biopy needles!  To be honest I didn't feel these at all.  You just hear the click as the biopy is taken.  I had 12 taken.  After that I came home.

The first 2 times I went for a pee, there was a bit of blood and it also appeared in my semen for a few days.  No pain, no discomfort.

I got my diagnosis a couple of weeks later.  In the meantime I had done a lot of reading and research.  A word of warning.... IGNORE all the American stuff.  They will tell you about many treatments available, but a lot of them are still experimental and not available here. Also, they just seem to be advertising themselves.

Next I met the surgeon who explained the results and told me that the cancer was on the left-hand side and totally contained, although right up to the margin. It was deemed too agressive to leave alone.  The options were robot-assisted surgery or radiotherapy/hormones.  I met and oncologist from the Christie hospital who told me that she would put me on 6-12 months of hormones, followed by 22 sessions of readiotherapy.  She ruled out Brachytherapy, which I would have liked.  I really didn't want the side-effects of hormones or external beam therapy, so decided there and then to have the surgery.

I must stress that the doctors I saw were careful to explain fully, their own treatments.

I had my surgery at Stepping Hill Hospital in Stockport on 2nd December 2016.  I think I was asleep for 5 hours.  I woke with 5 small wounds, a catheter, but no drain.  The only painkillers I had were paracetamol and ibuprofen.  I was allowed home the next afternoon.

The wounds were quite painful, but I had no pain inside for over a week.  Unfortunately my body didn't like having a catheter and I had painful spasms when my bladder tried to expel it, along with urine by-passing it.  I realise that not everyone has this but I wasn't warned.  The catheter and staples came out 12 days later ... such a relief.  After passing 3 urine samples and scans to show my bladder was emptying sufficiently, I came home, wearing a rather large pad in my pants!  The urology nurse gave me a bag full of information, pads, etc., from Prostate Cancer UK.

Now, 8 weeks later, I only have a tiny bit of stress incontinence. I have never wet myself and only use one thin pad a day.  I do not pee while asleep but do have to get up a couple of times to go to the bathroom.

I saw the surgeon this week, who told me that my PSA was 0.01, indicating that the cancer has gone.  There will be a follow-up in 6 weeks.  He also prescribed daily Viagra for a few weeks, along with a vacuum pump, to help get my erections back.

The message I would like to get across is that you should listen to the experts, do your own research and don't put off treatment, just because you are worried about the side-effects.  If I hadn't had the test, I wouldn't have known I had cancer and 5-10 years down the line it wouldn't have been curable.  I feel so lucky.

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Posted 21 Jan 2017 at 16:28

For an individual, choosing his treatment can be very difficult, increasingly so if several of the growing number of treatment options are open to him. It may be that particular concerns about one form of treatment and/or potential side effects may be a deciding factor as the general opinion is that there is not a lot to choose between success rates of various treatments. However, some consultants, particularly surgeons, take the view that if the cancer is confined, surgery is by far the best choice and one of the most eminent UK surgeons has expounded this in some very strong remarks in which he says radiotherapy is not a long term solution. http://www.theprostateclinic.org/prostate-cancer-information-centre/choosing-a-prostate-cancer-treatment-brachytherapy-vs-surgery/

Edited by member 21 Jan 2017 at 16:39  | Reason: Not specified

Barry
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Posted 21 Jan 2017 at 23:16
Many thanks for you messages, it all helps . Thank you.
User
Posted 28 Jan 2017 at 12:13

. I'm not in a good place at the moment as my mind just will not switch off regarding this diagnosis of having Prostate cancer. I seen the radiotherapy ongolist last Friday 20th Jan. Who explained what treatment I would have if I chose to have radiotherapy treatment. He said I would be put on hornmorne tablets for one month as well as having injections for the last 2 weeks of that same month with the tablets before the radiotherapy started. Then the radiotherapy would begin which would be 5 days a week for 4 weeks. I asked what the injections were for & he said that's to stop the body from making testosterone as the cancer feeds off of it. He said the success rate was about 80%. He said between surgery & radiotherapy they were really both the same with very little difference of side affects or recovery.

I asked him for his opinion on the Proton Beam THEARPY & he really did t rate it for prostrate cancer, I told him that I had read that the side affects were a lot less than the radiotherapy or surgery what was on offer by the NHS but it was quite adement that it was no better than the radiotherapy that's on offer.


I am so confused with it all, the statement that I have read from people that have had the proton beam THEARPY all rate it very highly & state that the side affects are no where near like with the surgery or the radiotherapy.


I have an appointment this Monday 23rd Jan with a surgeon to discuss surgery & for him to put his views across why I should have surgery. Then I'm suppose to make a decision on wheather to have surgery or radiotherapy. My gut feeling on all this still makes me lean towards the Proton Beam THEARPY but this is so so differcult. At the moment it feels that I just can not get away from this, I'm not sleeping of a night time, it's on my mind 24 7 . Just feel like running away from it all if only that was possible.


I had another procedure perform on me last Monday 23rd Jan that was the Cystoscopy where they put the fibre optic camera down the penis to get in to the bladder to have a look. They've decided that they now want to do a biopsey on my bladder as they've said there's abnormalities showing. This was not a nice procedure to of had done, they said the biopsey will be done under full anaesthetic. This is another worry on top of everything else as you think is this going to show up as cancer.


It was only 6 weeks ago that I went to the gp thinking I had a water infection & all this has turned out to be cancer, it's all been such a shock & being thrown in the deep end & having to decide such important decisions in such a short time and not really knowing what the out come is going to be. Sorry to go on I'm just so over welmed with all that is happening to me.


I'm still trying to get more info & advice on this Proton Beam THEARPY, if there's anyone that knows of anyone that's had it or anything about it I would be most greatful to hear from you.


I'm trying to get my medical records regarding the diagnosis of my prostrate cancer but that's seems to be another headache as the system the NHS has seems to let there selfs down it's almost been 2 weeks since I requested these & no one seems to know where there up to at the moment.


I'm suppose to be making a decision which treatment to have before the 3 months is up which the urologist said cause he did not think it should be left and the sooner u can make a decision the better. I'm already coming up to 8 weeks now.


Many thanks matty60

User
Posted 28 Jan 2017 at 14:06

I think you have read something about proton beam therapy, misunderstood it and as a result have stopped listening to the doctors who know your case. Currently the only proton beam treatment in the UK is low dose and suitable only for eye cancers and although the NHS is planning to install a small number of machines by 2018 these will only be for some children's cancer or eye cancer, and possibly brain tumours in the future. The data from America indicates that it is no better than normal RT for prostate cancer and does not reduce the risk of side effects. What proton beam therapy does seem to be good at is treating prostate cancer that has come back after other treatments ha pave failed.

So wherever you have read that proton beam treatment is better than other options, this is not supported by the research. If you are really determined to talk to someone about proton beam, you could go to Prague or Germany to see the doctors there though.

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

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Posted 13 Feb 2017 at 22:27

Hope you are doing a little better Mike and managed to make a decision.

Sending my best wishes to you. Keep strong. x

 
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