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We finally got to see a doctor

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User
Posted 15 May 2015 at 19:21

We went to the Royal London yesterday and saw a registrar who was very pleased with John's latest PSA result which was 0.9.

He said that Brachytherapy is not a cure for cancer but will hold it back and repeated their mantra of he is likely to die WITH it rather than OF it. He apologised if that sounded glib but said it was a fact.

He also warned us that the PSA is likely to start rising now that it is almost a year since the procedure and explained that Brachytherapy sorts out the centre of the prostate but leaves a margin of prostate tissue round the edges and these tissues would continue to make PSA.

 I said that I understood if John had had surgery his PSA afterwards would most likely have been 0.1 and he said "No, it would have been 0.5 as that is the lowest their machine can read".

I am a little concerned because he was basing his pleasure about John's 0.9 on the basis that it is only 0.4 above their zero BUT we didn't have the test done their, we had it done through our GPs surgery, using the local cottage hospital.  I know 0.9 is a good result but it doesn't look like it will go down any further before it starts to rise again.

He reckons John made a good choice with Brachy since he WOULD most definitely have been incontinent and had ED whereas those areas are not a major problem for us.  He then went on to say that as he is training to become a Prostate surgeon perhaps he shouldn't point that out!!.

Anyway, we will be monitored for the next 5 years, being seen every 6 months.

We can't control the winds - but we can adjust our sails
User
Posted 15 May 2015 at 22:54

Hi Sandra,

I havn't got anything constructive to add to your post but I did want to take the opportunity to say how very impressed I am with your replies to others, you are always so kind and constructive. 

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 May 2015 at 08:37

That's sweet of you Julie, thank you.

I do always try to see somebody else's point of view, even when it's difficult and I always re-read my posts before submitting them. Sometimes I press "Post" with trepidation for fear that I am offending.

I'm a worry wart!

We can't control the winds - but we can adjust our sails
User
Posted 16 May 2015 at 09:34
Sandra

I feel a bit inadequate as I cannot really say much about your consult, I know very little about Brachy (well that isn't strictly true I know of it and a ittle bit about how it works etc.)

As Julie says you always seem to give other people such caring, informative and reassuring responses which obviously take a lot of time to think through, write and then post. I know just how much those posts are appreciated. So I really would love to be able to do something similar for you but I can't.

Your registrar consult does seem a bit weird though.! A rather odd thing to say that Brachy is not a cure and follow it up with the line I have grown to hate hearing , the "die with it not of it" one. Surely Brachy is a curative treatment just as surgery and RT can be. I know the term "Cure" is probably never a true description but there is remission and long term at that. In my naievity I thought Brachy was an alternative to surgery and RT but offers the same outcome just with different or less side effects and that the only time it cannot be offered for a T2 cancer was in those cases where PSA is above 15-20 at diagnosis?

Did he even mention what your options would be if the outer area of the prostate got more active and the PSA started to rise significantly?

I think I would have come away from that feeling less than satisfied.

Best wishes

xx

Mo

User
Posted 16 May 2015 at 10:02

Sandra

Regardless of weather Brachy is a cure or not, the long term situation is excellent. I would just say to the 2 of you, relax and get on with enjoying your lives. Easy to say, not so easy to do, but we know Topgun's mantra, and this definitely applies in your case!

Paul

Stay Calm And Carry On.
User
Posted 16 May 2015 at 16:19
Hello, well you have worried me now.! Our consultant said only a 10-30% chance of it recurring in 10 years. He said that he actually gets less than 10% of patients back, if you look online it says 33% chance of returning which is the same odds as prostate removal. So your consultant is very different in his views to ours! I will ask ours next time. So definitely conflicting advice.

We do have friend that had brachy 4 years ago and his psa is still 0. something, can't remember exact figure.

That does sound worrying when my other half is still in his 50's he is seriously regretting brachy as he is still having such bad side effects. He wishes he stayed watching and monitoring.

Ah well...can only wait and see. All the best.

Edited by member 16 May 2015 at 16:34  | Reason: Not specified

User
Posted 17 May 2015 at 16:26

Hi Sandra

 I found the comments made by your hubby's consultant at odds with what I was told by mine. I had my treatment in January at Leeds, where Brachythrapy was pioneered in the UK in 1995. Last year they did their 3000th procedure and have an excellent success rate. The first man to receive the implants in 1995 is now 92 and quite fit for his age and has been cancer free since. The fact you were told that it only treats the inside of the prostate and not the outside was interesting. My seeds were on a thread which is wrapped around the outside of the prostate and some were implanted inside so hopefully they will have got all the cancer wherever it is. Obviously there is always a chance the cancer can return but that is the same whatever treatment we have and a bridge we hope we will not have to cross. But from the information I have been told or read about, it is as much as a cure as the other treatments. 

I will say that the thing that has struck me since my diagnosis has been the conflicting information given my different doctors and consultants either face to face or online. Also the conflicting information given in different parts of the UK, which is very worrying.

At the end of the day though we have made our choice and only time will tell whether we picked the right one. Hopefully I will be here in 20 years telling newcomers how great my treatment has been.

Warm regards,

Alan

 

 

User
Posted 17 May 2015 at 20:07

Hi Sandra,

My post may provide some reassurance for you, and you can pass this on to your OH?

A 75 year old chap I know had brachytherapy several years ago, about 4 or 5 at least I think, but not sure exactly. He has had no issues or recurrence at all. He is tested annually. No issue with PSA readings. Touch wood. Fingers crossed. Pinch punch etc etc. Not that he is superstitious, he is just normalstitious.

When I was diagnosed I was offered brachytherapy as a cure option, in as much as anything is a cure once you have cancerous cells in your body.

Many years go I watched part of a tv programme in which Gunther von Hagens did a PM. As far as I can recall, the subject (the cadaver used) had died from cancer. GVH explained the impact of cancerous cells within the body and attempts to get rid of them in a simple but effective way. He got a dolls house, no idea why, and squirted expanding builders foam into it. He then began to cut way at the foam with a Stanley knife, other makes of knife are available. He cut away for a bit and then stopped and said that no matter how much he cut there would still be traces of the foam remaining within the body, ergo, there would be traces of cancerous cells with the body.

I have come to terms with this suggestion and no longer worry about PSA tests, my longevity, or perhaps my "Shortevity"? None of these are things that I have any can control over.

Maybe your OH takes a similar view? What ever he chooses as a way for him to deal with his cancer, if it works, good luck to him. And may I also join in saying well done to you for the help that you, and to so many others who give to so many on the site? Those of you who are dealing with partners with PCa and to those who's partners have moved to a better place. You all chip in. I am in awe of you all.

While PCA may be a male, MOSTLY male suffered with disease, the power and strength and sheer ydoolb dogged persistence of the ladies on this site giving hope, help and encouragement to any and everyone is really amazing. I won't name you girls for fear of causing blushing. Okay, I am worried I might forget a name and end up shunned. Did I mention I am Amish and tend to shun regularly and without reason?

Seriously girls, you all do a great job and I hope you all had a good weekend?

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 18 May 2015 at 09:59

Thank you Lyrical and Countryboy.

We were discussing the appointment in bed this morning over a cuppa. We talked about the original appointment with the Brachytherapy consultant who told us it was as effective as surgery, and I knew this because I had researched it.

As Brachy is as good as surgery I had just assumed that once the seeds were in and doing what they were supposed to, then it was job done. I took into consideration that sometimes surgery fails and so it might be with Brachy but that was a vague possibility in the future, the same with Bowel and bladder cancers further down the line. They aren't a given, just a possibility so no point in fretting about them

He warned us about the "bounce" after about one year and said we weren't to worry about it as the PSA was bound to go up.

Well, I (I would say we but John only remembers what he wants to remember!) was quite happy about the bounce, after all if it goes UP and it's bouncy then it must come DOWN? I know Kennt was also warned about the "bounce" so it must be a common expression.

At no time did that original consultant tell us it was a "holding" option and that it only treated the core of the prostate.

We then started talking about the young man we saw on Thursday. He was a lovely, jolly young man but.. but ..but, I came out of there with questions still unasked because I was still taking in the "not a cure" bit. No major queries but would have liked answers.
He admitted himself that he was training to be a surgeon so perhaps he isn't that familiar with the procedure and was making it up as he went along, thinking he was being helpful!!

He was interested in the ED issue, and seemed to downgrade the fact that we had written on the form that occasionally, very occasionally maybe but it does happen, John gets an erection without the drugs. It cheers John up enormously so we don't dissect the quality. However, the doc wanted to know about it so we had to be honest. Whether he then thought he was cheering us up I don't know, but it was at this point he stated that there would ALWAYS be ED with both surgery and Brachy the same as there would ALWAYS be incontinence and he said that SilDeFaNil would always have to be used.

I was so distracted by the fact that he couldn't say the word properly the rest went right out of my head. On the train home I was even mulling over whether he was an actual doctor!!

Lyrical it's helpful to know the first recipient of the procedure is still going strong and Countryboy I really could appreciate the analogy of the dolls house. We've used the expanding foam and it goes everywhere and when you've got the bulk out it is still caught in the cracks and creases.

As far as John dealing with it in his own way, I have already posted elsewhere about out experiences with close family cancer and he was badly affected by our then 13 year old grandson having inoperable nasopharyngeal carcinoma and we spent a lot of time at the hospital with him. I think in his mind he feels that what he has been through is nothing compared to that so it isn't worth making a fuss about.

We will be having the 6 monthly checks for 5 years so that is helpful and reassuring.

We have to live with what we've got, enjoy it while we've got it. As long as we are fit in our minds then I'm sure we will cope with any problems our bodies give us.
Thank you all for your input. Much appreciated

Edited by member 18 May 2015 at 10:02  | Reason: Not specified

We can't control the winds - but we can adjust our sails
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User
Posted 15 May 2015 at 22:54

Hi Sandra,

I havn't got anything constructive to add to your post but I did want to take the opportunity to say how very impressed I am with your replies to others, you are always so kind and constructive. 

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 May 2015 at 08:37

That's sweet of you Julie, thank you.

I do always try to see somebody else's point of view, even when it's difficult and I always re-read my posts before submitting them. Sometimes I press "Post" with trepidation for fear that I am offending.

I'm a worry wart!

We can't control the winds - but we can adjust our sails
User
Posted 16 May 2015 at 09:34
Sandra

I feel a bit inadequate as I cannot really say much about your consult, I know very little about Brachy (well that isn't strictly true I know of it and a ittle bit about how it works etc.)

As Julie says you always seem to give other people such caring, informative and reassuring responses which obviously take a lot of time to think through, write and then post. I know just how much those posts are appreciated. So I really would love to be able to do something similar for you but I can't.

Your registrar consult does seem a bit weird though.! A rather odd thing to say that Brachy is not a cure and follow it up with the line I have grown to hate hearing , the "die with it not of it" one. Surely Brachy is a curative treatment just as surgery and RT can be. I know the term "Cure" is probably never a true description but there is remission and long term at that. In my naievity I thought Brachy was an alternative to surgery and RT but offers the same outcome just with different or less side effects and that the only time it cannot be offered for a T2 cancer was in those cases where PSA is above 15-20 at diagnosis?

Did he even mention what your options would be if the outer area of the prostate got more active and the PSA started to rise significantly?

I think I would have come away from that feeling less than satisfied.

Best wishes

xx

Mo

User
Posted 16 May 2015 at 10:02

Sandra

Regardless of weather Brachy is a cure or not, the long term situation is excellent. I would just say to the 2 of you, relax and get on with enjoying your lives. Easy to say, not so easy to do, but we know Topgun's mantra, and this definitely applies in your case!

Paul

Stay Calm And Carry On.
User
Posted 16 May 2015 at 10:40

Thank you Mo and Paul.

My other half is more than happy with the chat and happily accepts the comments. He feels fine and doesn't let the future bother him, well not in respect of cancer anyway.

The doctor saying we'll monitor you for 5 years was brilliant as far as he was concerned because that takes him to 80 which he feels is a good age. (Whether he expects to suddenly pop his clogs at 80 I haven't been able to work out!)

The doctor was a young chap, very good looking even to a grandmother like me ! and very jolly.

I do feel sometimes, that my husband's attitude is reflected in how we are dealt with. He's never gloomy when we go in and always finds something to joke about, usually causing fits of laughter. Even the day the nurse told us he had cancer, he was joking with her so much that she stopped to asked whether we had taken in that she said he DID have cancer and had we understood

John has never read anything about his cancer and has relied on me to provide that info.
He's never, and never will, looked at this site so has no knowledge of whether end results should be 0.1 or 0.5 or anything like that so it isn't going to bother him. I explained it to him on the way home and then he was saying well, Royal London has new equipment so it will be the latest, completely dismissing the fact that they hadn't done the PSA test

As far as Brachy not being a cure, before we made a final decision I did look into it and all the info suggested that the results were as good as surgery and less invasive and since we fitted the criteria it seemed the obvious choice for us.
The actual consultant told us before the procedure that there would be a "bounce" at a year post op and not to worry about it. I suppose I took that to mean it will appear and then disappear, so to be told it will appear and actually continue to rise was a big surprise.

I did understand the reasoning behind it, the prostate having a margin of tissue, but that was the first time it had ever been said.

Well, I shall definitely take Top Gun's mantra to heart. There is little point in worrying about something beyond our control, and there are many men on here who would just love to be in our situation so I am thankful for small mercies.

My husband is happy, our sex life is improved on what it was before the procedure, albeit with help from Sildenafil, so we have a lot to be thankful for. (He is currently singing his head off and distracting me !)

Thank you all for your comments. Much appreciated

We can't control the winds - but we can adjust our sails
User
Posted 16 May 2015 at 16:19
Hello, well you have worried me now.! Our consultant said only a 10-30% chance of it recurring in 10 years. He said that he actually gets less than 10% of patients back, if you look online it says 33% chance of returning which is the same odds as prostate removal. So your consultant is very different in his views to ours! I will ask ours next time. So definitely conflicting advice.

We do have friend that had brachy 4 years ago and his psa is still 0. something, can't remember exact figure.

That does sound worrying when my other half is still in his 50's he is seriously regretting brachy as he is still having such bad side effects. He wishes he stayed watching and monitoring.

Ah well...can only wait and see. All the best.

Edited by member 16 May 2015 at 16:34  | Reason: Not specified

User
Posted 16 May 2015 at 18:29

Sorry if I worried you sjtb.
I think part of the problem was his age. I know what we all say about policemen etc but the same can be said of doctors.

I'm sure that when we saw the original consultant his view was different. He also said to us about the results being the same as surgery. Obviously we were aware of the possibility of bowel cancer further down the line but were assured that it is only a possibility.

I wouldn't place too much emphasis on what we were told, I think it was a question of they had to fit us in because I made a compliant about the cancellations so we got the inexperienced one.

All our men are different and there is nothing to say that yours will not have a lower PSA than mine, indeed, your hospital may well measure it differently anyway.

Your other half is a fit young man at 50 with an active job whereas mine is 75 this year.

Try not to worry about it. What will be will be and you worrying yourself half to death won't solve anything.
(See - I know you are a worry wort just like me!!)

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 17 May 2015 at 16:26

Hi Sandra

 I found the comments made by your hubby's consultant at odds with what I was told by mine. I had my treatment in January at Leeds, where Brachythrapy was pioneered in the UK in 1995. Last year they did their 3000th procedure and have an excellent success rate. The first man to receive the implants in 1995 is now 92 and quite fit for his age and has been cancer free since. The fact you were told that it only treats the inside of the prostate and not the outside was interesting. My seeds were on a thread which is wrapped around the outside of the prostate and some were implanted inside so hopefully they will have got all the cancer wherever it is. Obviously there is always a chance the cancer can return but that is the same whatever treatment we have and a bridge we hope we will not have to cross. But from the information I have been told or read about, it is as much as a cure as the other treatments. 

I will say that the thing that has struck me since my diagnosis has been the conflicting information given my different doctors and consultants either face to face or online. Also the conflicting information given in different parts of the UK, which is very worrying.

At the end of the day though we have made our choice and only time will tell whether we picked the right one. Hopefully I will be here in 20 years telling newcomers how great my treatment has been.

Warm regards,

Alan

 

 

User
Posted 17 May 2015 at 20:07

Hi Sandra,

My post may provide some reassurance for you, and you can pass this on to your OH?

A 75 year old chap I know had brachytherapy several years ago, about 4 or 5 at least I think, but not sure exactly. He has had no issues or recurrence at all. He is tested annually. No issue with PSA readings. Touch wood. Fingers crossed. Pinch punch etc etc. Not that he is superstitious, he is just normalstitious.

When I was diagnosed I was offered brachytherapy as a cure option, in as much as anything is a cure once you have cancerous cells in your body.

Many years go I watched part of a tv programme in which Gunther von Hagens did a PM. As far as I can recall, the subject (the cadaver used) had died from cancer. GVH explained the impact of cancerous cells within the body and attempts to get rid of them in a simple but effective way. He got a dolls house, no idea why, and squirted expanding builders foam into it. He then began to cut way at the foam with a Stanley knife, other makes of knife are available. He cut away for a bit and then stopped and said that no matter how much he cut there would still be traces of the foam remaining within the body, ergo, there would be traces of cancerous cells with the body.

I have come to terms with this suggestion and no longer worry about PSA tests, my longevity, or perhaps my "Shortevity"? None of these are things that I have any can control over.

Maybe your OH takes a similar view? What ever he chooses as a way for him to deal with his cancer, if it works, good luck to him. And may I also join in saying well done to you for the help that you, and to so many others who give to so many on the site? Those of you who are dealing with partners with PCa and to those who's partners have moved to a better place. You all chip in. I am in awe of you all.

While PCA may be a male, MOSTLY male suffered with disease, the power and strength and sheer ydoolb dogged persistence of the ladies on this site giving hope, help and encouragement to any and everyone is really amazing. I won't name you girls for fear of causing blushing. Okay, I am worried I might forget a name and end up shunned. Did I mention I am Amish and tend to shun regularly and without reason?

Seriously girls, you all do a great job and I hope you all had a good weekend?

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 18 May 2015 at 09:59

Thank you Lyrical and Countryboy.

We were discussing the appointment in bed this morning over a cuppa. We talked about the original appointment with the Brachytherapy consultant who told us it was as effective as surgery, and I knew this because I had researched it.

As Brachy is as good as surgery I had just assumed that once the seeds were in and doing what they were supposed to, then it was job done. I took into consideration that sometimes surgery fails and so it might be with Brachy but that was a vague possibility in the future, the same with Bowel and bladder cancers further down the line. They aren't a given, just a possibility so no point in fretting about them

He warned us about the "bounce" after about one year and said we weren't to worry about it as the PSA was bound to go up.

Well, I (I would say we but John only remembers what he wants to remember!) was quite happy about the bounce, after all if it goes UP and it's bouncy then it must come DOWN? I know Kennt was also warned about the "bounce" so it must be a common expression.

At no time did that original consultant tell us it was a "holding" option and that it only treated the core of the prostate.

We then started talking about the young man we saw on Thursday. He was a lovely, jolly young man but.. but ..but, I came out of there with questions still unasked because I was still taking in the "not a cure" bit. No major queries but would have liked answers.
He admitted himself that he was training to be a surgeon so perhaps he isn't that familiar with the procedure and was making it up as he went along, thinking he was being helpful!!

He was interested in the ED issue, and seemed to downgrade the fact that we had written on the form that occasionally, very occasionally maybe but it does happen, John gets an erection without the drugs. It cheers John up enormously so we don't dissect the quality. However, the doc wanted to know about it so we had to be honest. Whether he then thought he was cheering us up I don't know, but it was at this point he stated that there would ALWAYS be ED with both surgery and Brachy the same as there would ALWAYS be incontinence and he said that SilDeFaNil would always have to be used.

I was so distracted by the fact that he couldn't say the word properly the rest went right out of my head. On the train home I was even mulling over whether he was an actual doctor!!

Lyrical it's helpful to know the first recipient of the procedure is still going strong and Countryboy I really could appreciate the analogy of the dolls house. We've used the expanding foam and it goes everywhere and when you've got the bulk out it is still caught in the cracks and creases.

As far as John dealing with it in his own way, I have already posted elsewhere about out experiences with close family cancer and he was badly affected by our then 13 year old grandson having inoperable nasopharyngeal carcinoma and we spent a lot of time at the hospital with him. I think in his mind he feels that what he has been through is nothing compared to that so it isn't worth making a fuss about.

We will be having the 6 monthly checks for 5 years so that is helpful and reassuring.

We have to live with what we've got, enjoy it while we've got it. As long as we are fit in our minds then I'm sure we will cope with any problems our bodies give us.
Thank you all for your input. Much appreciated

Edited by member 18 May 2015 at 10:02  | Reason: Not specified

We can't control the winds - but we can adjust our sails
 
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