Hi Will,
Sorry to read that you are having such a struggle deciding what to do, but, although I do not know how you are feeling , I totally get the dilemma you are facing. We have all been there or thereabouts. And the emotional impact is clear from your words. This really needs to be dealt with as it may prevent you making an informed choice in good time?
I note that you have ruled out any sort of operation. Not sure why, you do not need to explain to me or anyone, you are the one who will have to live with what ever your choice is, and I hope it is for a long time.
A couple of things that may assist you moving forward?
1. When you go for future consultations, take a friend or partner with you and they need a notebook and a pen. Your consultant may even let you tape any consolation so that you can be sure you have the chance to run through all that was said. Being told you have the Big C can be deafening for several minutes.
2. How many times have you had a pipe up your urethra, either camera or catheter or something else? Just the one bad experience? How long ago? Maybe you were unlucky? I have had about 15 such invasions so far, I've lost count, and they were uncomfortable, yes, but nothing like you had. Maybe you were unlucky. But the option of an undiagnosed progressing cancer is to be avoided, really. Maybe discuss your anxiety with whoever is doing it before they start may help you? Deep breathing may help you relax, tension will not help. To put it in context I have a fear of needles. For my PSA tests I have to lie down, sitting is not enough. I distract self by beating myself about the face, hard to get more pain on the face than in my arm. Apparently it is quite funny? Not for me. I understand a phobic fear. But tests are better than the risk.
3. You are Stage 2 at the moment. At some point that may change, unfortunately no-one knows when. Think of it like a roller-coaster clicking up the start slope and then the clicking stops, and you free fall. But there is not clicking. I have never heard of anyone being downgraded after pathology, when the gland is examined in a Lab. I was T2 on diagnosis, caner contained within the gland. No symptoms at all. Operated on within 2 months and upgraded to T3, touching the wall. How close t breaking out? I don't know.
To pick up on your last comment about it being "so bloody barbaric". That is one view. But the skill of surgeons, the techniques of non-invasive treatment are improving all the time. I could have had Brachy, Open surgery, and RT/HT I think. viewed my operation as necessary and a potential life saver.
As has been stated an MRI is non conclusive, can not be guaranteed to give an accurate picture, even with a good image and even with a skilled viewer.
Any biopsy can miss a cancerous cell, they are all a shot in the dark.
Looking back, I would not change a thing about my treatment, except. I would have had it sooner. Your choice, but, please do not wait too long.
As with any internet post the caveat here is if you don't like this, please ignore it. Hopefully you will take it in the spirit it was written? I wish you well.
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
Hello Will and welcome to the site.
My husband's Gleason was 3+4 and he initially opted for AS and was on this for a year before a decision was made to go for Brachytherapy.
By the way, you don't mention this form of treatment. Were you told it's a nono or was it just not on offer?
There are two types Permanent seed implants (which my husband had) and
HD Brachytherapy where a rod is temporarily inserted and then removed.
I would have thought that if you were eligible for AS then you were a candidate for Brachytherapy.
If you go to Publications on this site, you can download or view The Toolkit. A helpful set of information leaflets describing the various treatments.
Hopefully, you'll get more input from others on here who have had the treatments offered to you.
We can't control the winds - but we can adjust our sails |
User
There is no obvious justification for making you decide in a week. Presumably if you took a little longer and then decided to go for a template biopsy they are unlikely to refuse you one.
Worth reading about brachytherapy and then, if it appeals, asking your nurse specialist (were you allocated one of these?) whether brachy is on offer. Based on your stats, you are probably a perfect candidate.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Brachy might seem more intrusive but has far fewer side effects and appears to be at least as successful. Neither brachy or external beam RT are thought to be as likely to achieve remission without a fair whack of HT. If you have already ruled out surgery then AS seems your best option - for a while at least - and plenty of people go on AS without a template biopsy so perhaps ask for a clear explanation of why they think the template biopsy is so important in your case? It may be because of that secondary 4 on your left side.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Will, I think your initial question was about a template biopsy?
Let me tell you about my experience and hope it'll help you decide!
At the start of 2012 I visited my GP as I was getting up a couple of time in the night to pee and also had a weak stream. The GP diagnosed an enlarged prostate and prescribed 400mg Tamsulosin each morning. All was fine until I saw the Gp for an unrelated issue. He suggested a blood test and he decided to check my PSA at the same time. I had a phone call 10 days later to say my PSA was 9.2 and he wanted to refer me to the Urology department of East Surrey Hospital under the 2 week referral policy.
Only 5 days passed before a DRE showed a smooth but enlarged Prostate. They were able to give me a MRI later the same day. I was told it was quite normal to have a biopsy following the MRI. I couldn't believe the efficiency!
Another week passed and I was undergoing a template biopsy with 43 samples being taken. I was discharged the same day after passing urine, no catheter required. Within 10 days I had fully recovered, the discomfort some discribe as razor blades had stopped being passed and feeling 100% again. On 25th March I was back with the consultant for the results of the biopsies which showed carcinoma of the prostate with a Gleason 3+4 in 9/43 cores with maximum core involvement of 60%. I was offered all the options of radical treatment.
I had done a little research myself and asked about Active Surveillance. Whilst I was told I wouldn't be the first to opt for this route it was not advised. A quick visit to my GP confirmed that if he had my scores on the doors (he's 1 year younger than myself) he would have treatment but I should consider all 3 options. Following a consultation with an oncologist I decided to start the journey down the EBR route. I have started hormone therapy (2 weeks of Bicalutamide tablets followed by implant injection then another 2 weeks of tablets) then monthly implants for another 2 months. This coming Friday is my 3rd implant. The GPS nurse is skilled at injecting the implant with no real pain. I'm wasnt looking forward to the side effects but they haven't been to bad, some hot flushes, less libido and a little extra around the waist. I don't think if I had paid a fortune for private consultations I could have had better or faster care or results. The NHS has done a great job.
I'll be undergoing RT throughout September 20 sessions over 4 weeks. I hope maybe the above helps?
Ian.
Edited by member 18 Jun 2017 at 20:48
| Reason: Not specified
If you don't know where you're going any road will take you there! |
User
Hi Will,
I had an initial TRUS biopsy as part of my initial diagnosis in 2007 and a Transperineal template one in 2015 prior to having HIFU as salvage treatment for failed RT. I did write in some detail about the template experience but can't find it now. (The search facility on this forum is pretty useless in this respect throwing up much irrelevant information whereas in it's previous format one could find threads posted by actual members affected by PCa). My memory of the procedure is now a little clouded but I do recall the following although some aspects may be slightly different for some men.
As the template biopsy is done under anesthesia, a prerequisite was to establish that heart, lungs etc., would be checked out at a preliminary appointment.
I soon came round after the procedure and a couple of hours later was walking which strangely enough seemed easier than sitting. In doing the latter so as to minimize the pain which was not too bad, I found it best to lower myself down on on cheek and rolling backward until the other cheek also took my weight in a slouch position. It was painful for a few days to get my weight forward as this tended to exert too much pressure on the dressing covering the point s of entry of the needles (50 in my case). I had no catheter and there was only a minute amount of blood in my urine. I was told I must not drive for a day so the treating hospital accommodated me overnight.
Unlike the TRUS biopsy, the needles do not pass through the rectum and the chances of infection is therefore much less although I was given some antibiotics any way which I took. I resisted taking the pain controlling tablets. This provides a much better though more expensive and elaborate biopsy than the TRUS. If you scroll down on this link to the biopsy video this is very interesting. :- http://www.ahamm.co.uk/prostate/blogdetails.htm
Barry |
User
Will, sorry for the confusion, I first visited in 2012 and was diagnosed without examination etc with just an enlarged prostate and prescribed tamsilusin. It wasn't until April this year after an unrelated visit and blood test that PC was then diagnosed. Following the biopsy I didn't have pain at all that day as they also give a good shot of local anaesthetic. I took paracetamol for the following couple of days. It wasn't that traumatic in my case.
Edited by member 18 Jun 2017 at 22:53
| Reason: Not specified
If you don't know where you're going any road will take you there! |
User
Originally Posted by: Online Community Member
I'm also dismayed, after all that was said in the video about the accuracy & reliability of the MRI scan, why mine got it so wrong. There was no correlation between MRI and biopsy results.
The video may have over-egged the reliability of MRI scans? A scan can pinpoint areas of concern but can't tell the difference between cancer, inflammation and infection - that's why they still need to do biopsies.
When my husband was diagnosed 7 years ago, he had the biopsy first which found G7 (3+4). The scan was then arranged and came back completely clear so we were told that the cancer was so small (and therefore had been detected at its earliest stage) as to not be a problem. However, he was only 50 and determined to have the op which was a good job as it turned out because once they had the prostate in a laboratory and could test it properly, the cancer was in every bit of his prostate and had moved into his bladder as well.
Scans are not fool-proof. Nor are biopsies. But if biopsies are done in conjunction with good quality scans, the result tends to be more reliable.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
TRUS is the first biopsy usually because it is competitively cheap, quick and simple to implement.
Scans depend on three things. 1 How good is the scan Equipment?
2 How good is the radiologist programming/sequencing the scan?
3 How good are those that interpret the scan?
In the UK there are comparatively few 3 Tesla MRI scanners whereas in the USA they are up to 9.4T and looking at even stronger magnets for greater definition as here although the stronger they are so is the risk of side effects increased:- http://www.radiologytoday.net/archive/050409p16.shtml
There is also MIM software which aides imaging and biopsy and there are other developments in the pipe line that will improve accuracy but there is still some way to go with imaging and combining this with biopsy.
Edited by member 19 Jun 2017 at 14:17
| Reason: Not specified
Barry |
User
As others have said, the MRI and Trus biopsy give an indication, they indicate the best option, ie only 2 cores. With the template biopsy it will likely give you a better understanding of the true staging. But as Lyn mentioned, the pathology can often show an under-staging in the earlier diagnoses - it is sticking a pin into a walnut, so lots to miss!
Regarding the time to decide, I was diagnosed G3+4 last October and I wanted more time to reflect and consider the options, as well as take in a holiday, and I delayed until March of this year. My consultant fully supported that decision to wait based on what he considered to be a slow PCa (I had previous biopsies and PSA readings going back 11 years. Don't be forced into a decision especially as they gave offered AS.
Lastly I had RALP and it was a good experience - as far as any radical treatment can be. The operation and hospital stay went according to plan - an overnighter. The catheter was out after 7 days and I was fortunate re incontinence. Like all the options it can vary greatly depending on a number of unknowns, but worth considering.
Good luck with your decision.
User
Be wary of putting too much emphasis on 'diet and lifestyle changes'.
While you may (just conceivably) slow the cancer, it is not a treatment option. Active surveillance doesn't work on the basis that the cancer may go away or even reverse; it works on the basis that some prostate cancers are very slow, and do not (yet) require active treatment. Hopefully, not in your lifetime!
I may have missed it, but I didn't see any reference to 'spread'. Have the scans ruled this out?
I'm guessing they have if Radiotherapy is your main option.
User
Hi Willwest
I am 9 months on from brachytherapy and i was offered radical removal, with PSA 2.19 and Gleason 3+4=7 i think i only had the trus that i was knocked out for and don't remember being offered a template.
Only you can decide what route to take and i am not sure if i made the right decision but i hope i did as there are no guarantees with prostate cancer.
The only one i would not take at my age 71 was AS but it was not offered it so was fine with the choice i made.
My latest PSA is 0.59 and dropping and i have had no bowel or urine problems apart from a little tenderness in the early days and i stopped taking tamulosen three months ago.
John.
New Update 15.30 20/06/17.
Hi I have looked up TRUS and TEMPLATE and as i don't wish to confuse anyone I think i maybe had the TEMPLATE as how else could they get the Gleason score and how many cancers i had.I will ask the question when i see the Specialist next week.
Edited by member 20 Jun 2017 at 15:08
| Reason: Not specified
User
I think you probably had the template John. It's done under general anaesthetic. They don't knock you out for the TRUS.
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User
Hello Will and welcome to the site.
My husband's Gleason was 3+4 and he initially opted for AS and was on this for a year before a decision was made to go for Brachytherapy.
By the way, you don't mention this form of treatment. Were you told it's a nono or was it just not on offer?
There are two types Permanent seed implants (which my husband had) and
HD Brachytherapy where a rod is temporarily inserted and then removed.
I would have thought that if you were eligible for AS then you were a candidate for Brachytherapy.
If you go to Publications on this site, you can download or view The Toolkit. A helpful set of information leaflets describing the various treatments.
Hopefully, you'll get more input from others on here who have had the treatments offered to you.
We can't control the winds - but we can adjust our sails |
User
Thank you Johsan. Brachytherapy might have been mentioned, I can't remember (information overload). My current concern is having to have the template biopsy just to determine whether AS is even an option.
All these decisions of course are fear-driven. Fear of the dreaded big C. I'm trying to step back a bit and not be hurried/panicked into a decision before I've looked into all possibilities, including just waiting six months or so while making dietary & lifestyle changes.
User
Have you already had a Truss biopsy?
I think you are right to hang back a little on what happens next as far as radical treatment is concerned.
If they have offered the AS then you have time. I don't understand these doctors that pressure patients to make a decision in just a few weeks.
OK, in your case the decision is whether to go for the Template biopsy but there have been cases where the man has been told to make a decision re: operation within couple of weeks and it isn't fair. I assume you were told that so that they can fit you in quickly.
I hope you get advice from some of the men. Personally (but then I don't have to go through it !!) I would have said as soon as it's done and you get the results, the quicker you can get on with your life.
Good luck with it all.
Edited by member 18 Jun 2017 at 15:36
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Yes I had the TRUS biopsy a couple of weeks ago. I don't know whether it was a good idea. On reflection, it seems a pretty good way to spread any cancerous cells that are already there along the track of the needle...
User
There is no obvious justification for making you decide in a week. Presumably if you took a little longer and then decided to go for a template biopsy they are unlikely to refuse you one.
Worth reading about brachytherapy and then, if it appeals, asking your nurse specialist (were you allocated one of these?) whether brachy is on offer. Based on your stats, you are probably a perfect candidate.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks Lyn.Yes I have a nurse specialist who I can talk to. I will ask about brachytherapy, although I'm more inclined to non-invasive treatment like external beam radiotherapy - and the possibility of having it without the hormone treatment, although I probably already know the answer to that ...
I can't get past the idea that repeated sticking of needles into the prostate is a bad idea.
User
Brachy might seem more intrusive but has far fewer side effects and appears to be at least as successful. Neither brachy or external beam RT are thought to be as likely to achieve remission without a fair whack of HT. If you have already ruled out surgery then AS seems your best option - for a while at least - and plenty of people go on AS without a template biopsy so perhaps ask for a clear explanation of why they think the template biopsy is so important in your case? It may be because of that secondary 4 on your left side.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
As I understand it, they want to do the template biopsy because of the discrepancy between the MRI scan result and the TRUS biopsy. The MRI showed 2 areas of abnormality, but the biopsy didn't find any cancerous cells in those areas, but it did find them in two other places. Because of this, they want to do the template biopsy to find out whether active surveillance is an option.
I'm inclined to ask whether A.S. is an option without the template biopsy. Surely a few months isn't that risky, particularly as prostate cancer has such good odds of survival for many years without any treatment at all.
Edited by member 18 Jun 2017 at 20:05
| Reason: Not specified
User
Hi Will, I think your initial question was about a template biopsy?
Let me tell you about my experience and hope it'll help you decide!
At the start of 2012 I visited my GP as I was getting up a couple of time in the night to pee and also had a weak stream. The GP diagnosed an enlarged prostate and prescribed 400mg Tamsulosin each morning. All was fine until I saw the Gp for an unrelated issue. He suggested a blood test and he decided to check my PSA at the same time. I had a phone call 10 days later to say my PSA was 9.2 and he wanted to refer me to the Urology department of East Surrey Hospital under the 2 week referral policy.
Only 5 days passed before a DRE showed a smooth but enlarged Prostate. They were able to give me a MRI later the same day. I was told it was quite normal to have a biopsy following the MRI. I couldn't believe the efficiency!
Another week passed and I was undergoing a template biopsy with 43 samples being taken. I was discharged the same day after passing urine, no catheter required. Within 10 days I had fully recovered, the discomfort some discribe as razor blades had stopped being passed and feeling 100% again. On 25th March I was back with the consultant for the results of the biopsies which showed carcinoma of the prostate with a Gleason 3+4 in 9/43 cores with maximum core involvement of 60%. I was offered all the options of radical treatment.
I had done a little research myself and asked about Active Surveillance. Whilst I was told I wouldn't be the first to opt for this route it was not advised. A quick visit to my GP confirmed that if he had my scores on the doors (he's 1 year younger than myself) he would have treatment but I should consider all 3 options. Following a consultation with an oncologist I decided to start the journey down the EBR route. I have started hormone therapy (2 weeks of Bicalutamide tablets followed by implant injection then another 2 weeks of tablets) then monthly implants for another 2 months. This coming Friday is my 3rd implant. The GPS nurse is skilled at injecting the implant with no real pain. I'm wasnt looking forward to the side effects but they haven't been to bad, some hot flushes, less libido and a little extra around the waist. I don't think if I had paid a fortune for private consultations I could have had better or faster care or results. The NHS has done a great job.
I'll be undergoing RT throughout September 20 sessions over 4 weeks. I hope maybe the above helps?
Ian.
Edited by member 18 Jun 2017 at 20:48
| Reason: Not specified
If you don't know where you're going any road will take you there! |
User
Hi Will,
I had an initial TRUS biopsy as part of my initial diagnosis in 2007 and a Transperineal template one in 2015 prior to having HIFU as salvage treatment for failed RT. I did write in some detail about the template experience but can't find it now. (The search facility on this forum is pretty useless in this respect throwing up much irrelevant information whereas in it's previous format one could find threads posted by actual members affected by PCa). My memory of the procedure is now a little clouded but I do recall the following although some aspects may be slightly different for some men.
As the template biopsy is done under anesthesia, a prerequisite was to establish that heart, lungs etc., would be checked out at a preliminary appointment.
I soon came round after the procedure and a couple of hours later was walking which strangely enough seemed easier than sitting. In doing the latter so as to minimize the pain which was not too bad, I found it best to lower myself down on on cheek and rolling backward until the other cheek also took my weight in a slouch position. It was painful for a few days to get my weight forward as this tended to exert too much pressure on the dressing covering the point s of entry of the needles (50 in my case). I had no catheter and there was only a minute amount of blood in my urine. I was told I must not drive for a day so the treating hospital accommodated me overnight.
Unlike the TRUS biopsy, the needles do not pass through the rectum and the chances of infection is therefore much less although I was given some antibiotics any way which I took. I resisted taking the pain controlling tablets. This provides a much better though more expensive and elaborate biopsy than the TRUS. If you scroll down on this link to the biopsy video this is very interesting. :- http://www.ahamm.co.uk/prostate/blogdetails.htm
Barry |
User
Thank you for this input.
Ian, you say you were diagnosed at the start of 2012. Have you been having treatment all this time ?
Barry, thanks for the link. After that video I'm left wondering why on earth I was subjected to the TRUS biopsy at all? It seems crude, dangerous, and wholly unreliable compared to the template biopsy.
I'm also dismayed, after all that was said in the video about the accuracy & reliability of the MRI scan, why mine got it so wrong. There was no correlation between MRI and biopsy results.
Not feeling too confident about any of it at the moment. But I am confident there'll be no more needles entering my prostate for a while yet...
Thanks again for responses. I'll have a closer read of blog in the link.
User
Will, sorry for the confusion, I first visited in 2012 and was diagnosed without examination etc with just an enlarged prostate and prescribed tamsilusin. It wasn't until April this year after an unrelated visit and blood test that PC was then diagnosed. Following the biopsy I didn't have pain at all that day as they also give a good shot of local anaesthetic. I took paracetamol for the following couple of days. It wasn't that traumatic in my case.
Edited by member 18 Jun 2017 at 22:53
| Reason: Not specified
If you don't know where you're going any road will take you there! |
User
Originally Posted by: Online Community Member
I'm also dismayed, after all that was said in the video about the accuracy & reliability of the MRI scan, why mine got it so wrong. There was no correlation between MRI and biopsy results.
The video may have over-egged the reliability of MRI scans? A scan can pinpoint areas of concern but can't tell the difference between cancer, inflammation and infection - that's why they still need to do biopsies.
When my husband was diagnosed 7 years ago, he had the biopsy first which found G7 (3+4). The scan was then arranged and came back completely clear so we were told that the cancer was so small (and therefore had been detected at its earliest stage) as to not be a problem. However, he was only 50 and determined to have the op which was a good job as it turned out because once they had the prostate in a laboratory and could test it properly, the cancer was in every bit of his prostate and had moved into his bladder as well.
Scans are not fool-proof. Nor are biopsies. But if biopsies are done in conjunction with good quality scans, the result tends to be more reliable.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
TRUS is the first biopsy usually because it is competitively cheap, quick and simple to implement.
Scans depend on three things. 1 How good is the scan Equipment?
2 How good is the radiologist programming/sequencing the scan?
3 How good are those that interpret the scan?
In the UK there are comparatively few 3 Tesla MRI scanners whereas in the USA they are up to 9.4T and looking at even stronger magnets for greater definition as here although the stronger they are so is the risk of side effects increased:- http://www.radiologytoday.net/archive/050409p16.shtml
There is also MIM software which aides imaging and biopsy and there are other developments in the pipe line that will improve accuracy but there is still some way to go with imaging and combining this with biopsy.
Edited by member 19 Jun 2017 at 14:17
| Reason: Not specified
Barry |
User
As others have said, the MRI and Trus biopsy give an indication, they indicate the best option, ie only 2 cores. With the template biopsy it will likely give you a better understanding of the true staging. But as Lyn mentioned, the pathology can often show an under-staging in the earlier diagnoses - it is sticking a pin into a walnut, so lots to miss!
Regarding the time to decide, I was diagnosed G3+4 last October and I wanted more time to reflect and consider the options, as well as take in a holiday, and I delayed until March of this year. My consultant fully supported that decision to wait based on what he considered to be a slow PCa (I had previous biopsies and PSA readings going back 11 years. Don't be forced into a decision especially as they gave offered AS.
Lastly I had RALP and it was a good experience - as far as any radical treatment can be. The operation and hospital stay went according to plan - an overnighter. The catheter was out after 7 days and I was fortunate re incontinence. Like all the options it can vary greatly depending on a number of unknowns, but worth considering.
Good luck with your decision.
User
Thanks Christopher. The AS will only be offered depending on the results of a template biopsy. The reason for this is that the MRI and TRUS results don't correlate, so they want to be sure that AS is an option. Hence my uncertainty about the next move. It may be that I have to go ahead with the template biopsy, but I want to leave it at least as long as it takes for the damage from the TRUS biopsy to heal.
This is all so bloody barbaric, and plenty of evidence to suggest often unnecessary. I'm equally inclined to do nothing for a year (apart from dietary changes) and hope they will monitor me anyway.
Currently wading through alternative information online, trying to sort the meaningful from the downright lunatic...
Edited by member 19 Jun 2017 at 19:24
| Reason: Not specified
User
Hi Will,
Sorry to read that you are having such a struggle deciding what to do, but, although I do not know how you are feeling , I totally get the dilemma you are facing. We have all been there or thereabouts. And the emotional impact is clear from your words. This really needs to be dealt with as it may prevent you making an informed choice in good time?
I note that you have ruled out any sort of operation. Not sure why, you do not need to explain to me or anyone, you are the one who will have to live with what ever your choice is, and I hope it is for a long time.
A couple of things that may assist you moving forward?
1. When you go for future consultations, take a friend or partner with you and they need a notebook and a pen. Your consultant may even let you tape any consolation so that you can be sure you have the chance to run through all that was said. Being told you have the Big C can be deafening for several minutes.
2. How many times have you had a pipe up your urethra, either camera or catheter or something else? Just the one bad experience? How long ago? Maybe you were unlucky? I have had about 15 such invasions so far, I've lost count, and they were uncomfortable, yes, but nothing like you had. Maybe you were unlucky. But the option of an undiagnosed progressing cancer is to be avoided, really. Maybe discuss your anxiety with whoever is doing it before they start may help you? Deep breathing may help you relax, tension will not help. To put it in context I have a fear of needles. For my PSA tests I have to lie down, sitting is not enough. I distract self by beating myself about the face, hard to get more pain on the face than in my arm. Apparently it is quite funny? Not for me. I understand a phobic fear. But tests are better than the risk.
3. You are Stage 2 at the moment. At some point that may change, unfortunately no-one knows when. Think of it like a roller-coaster clicking up the start slope and then the clicking stops, and you free fall. But there is not clicking. I have never heard of anyone being downgraded after pathology, when the gland is examined in a Lab. I was T2 on diagnosis, caner contained within the gland. No symptoms at all. Operated on within 2 months and upgraded to T3, touching the wall. How close t breaking out? I don't know.
To pick up on your last comment about it being "so bloody barbaric". That is one view. But the skill of surgeons, the techniques of non-invasive treatment are improving all the time. I could have had Brachy, Open surgery, and RT/HT I think. viewed my operation as necessary and a potential life saver.
As has been stated an MRI is non conclusive, can not be guaranteed to give an accurate picture, even with a good image and even with a skilled viewer.
Any biopsy can miss a cancerous cell, they are all a shot in the dark.
Looking back, I would not change a thing about my treatment, except. I would have had it sooner. Your choice, but, please do not wait too long.
As with any internet post the caveat here is if you don't like this, please ignore it. Hopefully you will take it in the spirit it was written? I wish you well.
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
Thanks Dave, I appreciate your input.
It was quite a while back I had the dreaded camera investigation, over ten years. I was told the tube was about the width of a biro, which may account for the horror when peeing which followed! I'm guessing an ordinary catheter is thinner and flexible, and am clutching onto this thought along with the realisation that the template biopsy option is probably the realistic next move. Even so, I want to wait until the damage has healed from the TRUS biopsy. That was two weeks ago. It still feels a bit "wrong" down there, and when peeing.
Naturally I'm hoping the new biopsy will allow me to get away with active surveillance rather than force a choice of treatment. I really want to give diet & lifestyle changes a chance. I'm also holding back on Autumn travel plans until things are clearer.
I live alone and it's difficult to be taking someone along with me each time, but I take the point about taking notes, and will be taking pen & notebook in future.
Thanks again.
Will
User
Be wary of putting too much emphasis on 'diet and lifestyle changes'.
While you may (just conceivably) slow the cancer, it is not a treatment option. Active surveillance doesn't work on the basis that the cancer may go away or even reverse; it works on the basis that some prostate cancers are very slow, and do not (yet) require active treatment. Hopefully, not in your lifetime!
I may have missed it, but I didn't see any reference to 'spread'. Have the scans ruled this out?
I'm guessing they have if Radiotherapy is your main option.
User
Hi Willwest
I am 9 months on from brachytherapy and i was offered radical removal, with PSA 2.19 and Gleason 3+4=7 i think i only had the trus that i was knocked out for and don't remember being offered a template.
Only you can decide what route to take and i am not sure if i made the right decision but i hope i did as there are no guarantees with prostate cancer.
The only one i would not take at my age 71 was AS but it was not offered it so was fine with the choice i made.
My latest PSA is 0.59 and dropping and i have had no bowel or urine problems apart from a little tenderness in the early days and i stopped taking tamulosen three months ago.
John.
New Update 15.30 20/06/17.
Hi I have looked up TRUS and TEMPLATE and as i don't wish to confuse anyone I think i maybe had the TEMPLATE as how else could they get the Gleason score and how many cancers i had.I will ask the question when i see the Specialist next week.
Edited by member 20 Jun 2017 at 15:08
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User
Hi Andrew. I do understand. To clarify, my hope is that I will be offered active surveillance if the template scan result is favourable. If the cancer is indeed slow, then dietary changes and daily ingestion of pomegranate juice etc may well slow it even further. I already eat pretty healthily, don't drink or smoke, and take (some) exercise, but there are some specific improvements I can make now I know the enemy.
I'm instinctively wary of any invasive procedure. The shock to the system is profound, and side effects inevitable. That said, if I'm told that cancer is spreading and death will be inevitable if it's not treated, then no doubt fear will get the upper hand and expediency will triumph! Although, honestly, if it's a case of just adding another five years of incontinence and discomfort, I may well opt for early check out. I don't fear death, although there's certainly trepidation about departure...
Not sure about spread. I only have the numbers written in my patient booklet (see original post) but not sure what they really mean. I do know the MRI & biopsy results didn't correlate, which is why they want to do a further biopsy before deciding whether active surveillance is an option at all.
The other options were radical surgery or hormones with radiotherapy.
Edited by member 20 Jun 2017 at 11:53
| Reason: Not specified
User
I think you probably had the template John. It's done under general anaesthetic. They don't knock you out for the TRUS.
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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