I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

new diagnosis, husband

User
Posted 11 Jun 2015 at 09:30
Hi looking for advice. My husband was diagnosed last night.

He's 61, fit and bmi good. Never had any health issues.

Gleason 3+4 left side, 60%

Gleason 3+3 right side,8%

PSA 11 ft 6%

MRI showed probably confined to prostate.

Has to have ct scan and bone scan to confirm this as PSA over 10?

Prostate to be removed robotically in Exeter in about 6 weeks time if all OK.

Any thoughts please.

User
Posted 11 Jun 2015 at 19:32

Originally Posted by: Online Community Member
Thanks everyone for your help. Removal of prostate recommended last night. We haven't looked into any other treatment, still in shock.

Think husb must be T2c if contained in prostate.

At age of 61 is op best? 60% of left side worrying, and we don't have any previous PSA to compare.

Scary times, main thing I pick up on this site is that there's time, no need to panic in deciding.

Thank you

 

Mrs Fish, 

You are asking the question that no on else can answer, only you and your OH.  Your husband may be a T2c, equally he may not be?  The only way to be certain is post op when the removed gland is looked at in a laboratory dish.  I do not recall anyone who had their Gleason downgraded post op, only up graded, mine included.   

Factors that you and he may wish to consider in your deliberations are:

1. His life expectancy - if his family lineage suggests that he may not live much beyond his 60s then you may both think that an op is not worth having?  If all his relatives live not much beyond mid 60s why go through an op?

2. You have said that he is fit and not overweight, BMI good.  If the PCa is caught early, and it may have been, then the sooner he does something the better, but every treatment option has POTENTIAL side effects, THE most significant of which is LIFE.

3.  Some folks will try to persuade you what to do, what treatment is best for you in their opinion, and they mean well, but, this is such a big decision to make, and in my view all anyone should say is look at every option available, consider all the potential consequences and then make your own minds up.  

Who have you spoken with about treatment options so far, maybe only a surgeon by the sound of things and from your latest post?

This is the most significant decision that you will both make so take time and do your research, and take in what others have to say, but with the rider that this is your decision alone.  One which you will both have to live with and with luck, live with for many years to come.

atb

dave

 

 

 

 

 

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

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

I am the statistic.

User
Posted 11 Jun 2015 at 11:53

Hello Mrs Fish and welcome
Devonlad and Countryboy have given you very good advice.
IT would seem from the expereinces on here that no to men react the same to the same treatments, their experiences can only be a guide.

The toolkit is a set of pamphlets available from Information then Publications. Right hand side of the page is a box "more publications". They can be sent for or you can download them.
Also on page 10 there is a Surgical Support Pack which contains a few samples of the type of pads you can get, as well as a little storage bag and some wet wipes. These packs can be obtained through the Nurse on this site.

My husband was 3+4 but one side only and opted for Active Surveillance which he had for a year.
It gave us time to suss out what was available and for him to make up his mind which route to take, although he was adamant that surgery wasn't one of them.

One year later and he had permanent seed Brachytherapy from which he has made an excellent recovery.

Unless your other half has been advised to get rid of the cancer immediately due to aggression perhaps it might be wise to take a step back and view all your options.

From our own experience of initial diagnosis the surgeon was all for getting it out and was even offhand when we asked about oncology.

Good luck with whichever path your husband takes.

There is much support on here.

Ask ANY questions you like. None are offensive if they relate to your cancer and treatment and somebody is bound to have experience of your question.
All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 11 Jun 2015 at 10:05

Hi

You describe a similar diagnoses to me last August and me and your husband are of similar age. The main difference (if it is confirmed that the cancer hasn't spread) is that mine is only on the rhs (3+4), nothing on the left. My PSA was 13.8 when diagnosed. I also originally visited RD&E who recommended robotic removal but after researching the subject I chose low dose brachytherapy.

If the cancer hasn't spread my advice would be to check with your consultant whether if you wait a few months for treatment is it likely to get worse in that time? If not then make sure you order the toolkit from this site and look at the various treatment options, what is involved and the possible side effects of each treatment. You can then speak to your consultant (and if he/she is a surgeon ask to speak with an oncologist) and your husband can make an informed decision regarding which treatment he would prefer.

It maybe that your husband feels that he just wants to get rid of the cancer ASAP (most men don't wait 8 months before getting treated like I did!) in which case robotic removal in 6 weeks time is probably the best choice for him.

You will get a lot of good advice on the site but you will also find that most men's experiences are different even if they had the same treatment! However there are trends in the side effects of each treatment. For info. personally I found this web-site really useful: http://www.prostatespecialist.co.uk/   - particularly the Treatment Selector.

Let me know if I can help further.

dl

Edited by member 11 Jun 2015 at 10:09  | Reason: Not specified

User
Posted 11 Jun 2015 at 11:07

Hi Mrs fish,

It appears that you and you and your OH are well along your chosen path for treatment having made an appointment for the robot.    

Download the toolkit from this site, even if you have made your choice for treatment there will still be useful information for you both.

In preparation for the hospital stay you may wish to include snug briefs if he dies not wear them already.  Boxers do not hold pads in very well when he gets to that stage, or stop the catheter tube banging about.  Baggy tracksuit trousers, as his was will be expanded due to the gas they inflate the cavity with to allow the robot in to do its work.  This will go down eventually. 

Worth asking now about the provision of pads and kit for when the catheter is removed.  Some people get them on the NHS others have had to buy from shops. 

Good luck with the op.

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 11 Jun 2015 at 12:17

Good day Mrs. Fish,

Your husband's scenario is similar to my diagnosis last November. I am 11 weeks post laperascopic prostatectomy and coping well. I am due to see the surgeon tomorrow for my feedback. Please read my profile and if you have any points I can clarify please feel free to message me.

Regards,

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 11 Jun 2015 at 13:37

Mrs Fish

I am similar to the previous guys who have posted and your OH. 13 months post op life is almost back to normal. As P said click on names to see peoples profiles. Also use the search box to find "awaiting robotic surgery" there are lots of tips in that conversation.

If I had to pick two top tips they would be, do the pelvic floor exercises pre op and do not get constipation post op.

All the best for the up coming op.

Thanks Chris

 

User
Posted 11 Jun 2015 at 19:43

Gosh - I am a bit shocked and depressed that he was diagnosed and the treatment was sorted all in one evening. In my experience, the people that struggle most with the after-effects of surgery are those who went into it without any understanding of what life would be like. You only have to read on here to see men who experience huge distress because they had no idea they would be left incontinent, that they would never ejaculate, that their penis would be smaller, etc etc. Maybe they were told at the hospital and forgot, undoubtedly there are those who just assume it won't apply to them.

My husband was 50 at diagnosis - the advice we got was to go away, think about it for a few months, have a nice normal summer doing the things couples do and then make a decision about treatment. My husband didn't like this advice, had the op in super-speedy time and has bitterly regretted pretty much ever since.If he had taken time, he might still have the same side effects but I don't think he would feel quite so angry and cheated.

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

User
Posted 11 Jun 2015 at 21:33

I am surprised that the dx and treatment option happened at the same time. Having said that dx to treatment in 6 weeks is quick/efficient/competent really. It still gives time for them to research their options and hopefully to speak to an oncologist.

Mr Fish said "Scary times, main thing I pick up on this site is that there's time" I am not a fan of people who have a dx such as this ie probably T2c going away thinking they have loads of time. We have no idea if they do or don't but the consultant may have a view on that having seen the MRI scan.

Bri

Edited by member 11 Jun 2015 at 21:36  | Reason: Not specified

User
Posted 11 Jun 2015 at 23:19

We shouldn't automatically be shocked by or criticise a hospital or medical practice before we have all the information.  I am sure I read this somewhere?  We should not get depressed about it either.

And herein lies the real problem, where contributors are already, intentionally or not, exerting undue influence on a stranger without knowing anything like enough about their circumstances and PCa staging.  

Mrs Fish, I hope that you and Mr Fish are reading elsewhere about PCa and treatments, and aggressive and non-aggressive cancers?

As you have no other PSA readings to assist your decision making, as Brian rightly points out, you do not know if you have a non-aggresive PCA, a so called "Pussycat", or an aggressive or "Tiger" PCa.

Slow and passive, or fast and aggressive, at some point the Cancer will get to a stage where some treatment options may be off the table, and it may become too late to be dealt with.  There will be a tipping point, like a climb up a hill, when you reach the top and start to roll down the other side. Of course that point may come many years down the line, or it may not.

Did your OH have any symptoms of PCa?  Sadly when there are symptoms, it s not an early diagnosis, I am told.  How was it discovered, a routine well man check?

When you read the individual history of people here please bear in mind that most men who undergo treatment do so without airing their experiences online.  "Here" is a very tiny snapshot of men who have had PCa, and dealt with it.

Whatever anyone here says you should do, should wait awhile for, should rule out, steers you towards, only you and your OH will be dealing with the consequences of the big decision.  We men all have regrets and wish that we had not made a choice, but we are all here and alive to moan about it, thank goodness.

atb

dave 

Edited by member 11 Jun 2015 at 23:20  | Reason: Not specified

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 12 Jun 2015 at 00:01

Absolutely agree treatment is a personal choice. Men choose different treatment for their own reasons. Some consultants will give patients some guidance but naturally favour their own discipline. All treatments potentially have side effects and these should be considered carefully along with the treatment differences and what these entail.

There can be quite a wait for surgery so one possibility is to book this and for your husband to cancel it if he decides on a different treatment in the interim.

Barry
User
Posted 20 Jun 2015 at 23:41
Hello mrs fish

My OH is in a very similar position to your, plus eight months. He had Gleason 7 on diagnosis (9 on pathology), psa 9.2, 20% and 3% on biopsy. He opted for surgery, and did this based on one consultation.

He had his surgery on 1st dec, and the surgeon was happy he had removed if all. Nerve sparing on one side.

He has had problems with incontinence- still in two- three pads a day at present, but dry at night (and if he does nothing physical). In the last two weeks, he has started to regain some EF, and we are hopeful on this front.

My advice to you.

Get the toolkit from this site and read it.

Readthis forum back to front

Don't read anything else. I felt like I needed all the information I could find, most of which conflicted, was inaccurate, or related to other countries. My OH is one of those to whom Lyn refers- the shortening, the incontinence, the length of time were all s massive shock to him post op. But I think this is just because we didn't take it in, and we didn't visit this forum.

Best of luck

Louise

Edited by member 20 Jun 2015 at 23:49  | Reason: Not specified

User
Posted 21 Jun 2015 at 12:22
What became apparent to me ( but took its time oddly ) is that PCa is a horrible disease and no matter which option for treatment you decide on it is going to be unpleasant and cause side-effects which hit at the very " heart " of being a man

Choosing became impossible , and so in the end when surgery was my only choice I was kind of glad.

I'm not at the stage yet to see how it has cured me or "damaged" me as a man. I just hope at 47 my life returns to as normal as one could hope for.

Very best wishes to you

Chris

Show Most Thanked Posts
User
Posted 11 Jun 2015 at 10:05

Hi

You describe a similar diagnoses to me last August and me and your husband are of similar age. The main difference (if it is confirmed that the cancer hasn't spread) is that mine is only on the rhs (3+4), nothing on the left. My PSA was 13.8 when diagnosed. I also originally visited RD&E who recommended robotic removal but after researching the subject I chose low dose brachytherapy.

If the cancer hasn't spread my advice would be to check with your consultant whether if you wait a few months for treatment is it likely to get worse in that time? If not then make sure you order the toolkit from this site and look at the various treatment options, what is involved and the possible side effects of each treatment. You can then speak to your consultant (and if he/she is a surgeon ask to speak with an oncologist) and your husband can make an informed decision regarding which treatment he would prefer.

It maybe that your husband feels that he just wants to get rid of the cancer ASAP (most men don't wait 8 months before getting treated like I did!) in which case robotic removal in 6 weeks time is probably the best choice for him.

You will get a lot of good advice on the site but you will also find that most men's experiences are different even if they had the same treatment! However there are trends in the side effects of each treatment. For info. personally I found this web-site really useful: http://www.prostatespecialist.co.uk/   - particularly the Treatment Selector.

Let me know if I can help further.

dl

Edited by member 11 Jun 2015 at 10:09  | Reason: Not specified

User
Posted 11 Jun 2015 at 11:07

Hi Mrs fish,

It appears that you and you and your OH are well along your chosen path for treatment having made an appointment for the robot.    

Download the toolkit from this site, even if you have made your choice for treatment there will still be useful information for you both.

In preparation for the hospital stay you may wish to include snug briefs if he dies not wear them already.  Boxers do not hold pads in very well when he gets to that stage, or stop the catheter tube banging about.  Baggy tracksuit trousers, as his was will be expanded due to the gas they inflate the cavity with to allow the robot in to do its work.  This will go down eventually. 

Worth asking now about the provision of pads and kit for when the catheter is removed.  Some people get them on the NHS others have had to buy from shops. 

Good luck with the op.

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 11 Jun 2015 at 11:53

Hello Mrs Fish and welcome
Devonlad and Countryboy have given you very good advice.
IT would seem from the expereinces on here that no to men react the same to the same treatments, their experiences can only be a guide.

The toolkit is a set of pamphlets available from Information then Publications. Right hand side of the page is a box "more publications". They can be sent for or you can download them.
Also on page 10 there is a Surgical Support Pack which contains a few samples of the type of pads you can get, as well as a little storage bag and some wet wipes. These packs can be obtained through the Nurse on this site.

My husband was 3+4 but one side only and opted for Active Surveillance which he had for a year.
It gave us time to suss out what was available and for him to make up his mind which route to take, although he was adamant that surgery wasn't one of them.

One year later and he had permanent seed Brachytherapy from which he has made an excellent recovery.

Unless your other half has been advised to get rid of the cancer immediately due to aggression perhaps it might be wise to take a step back and view all your options.

From our own experience of initial diagnosis the surgeon was all for getting it out and was even offhand when we asked about oncology.

Good luck with whichever path your husband takes.

There is much support on here.

Ask ANY questions you like. None are offensive if they relate to your cancer and treatment and somebody is bound to have experience of your question.
All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 11 Jun 2015 at 12:17

Good day Mrs. Fish,

Your husband's scenario is similar to my diagnosis last November. I am 11 weeks post laperascopic prostatectomy and coping well. I am due to see the surgeon tomorrow for my feedback. Please read my profile and if you have any points I can clarify please feel free to message me.

Regards,

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 11 Jun 2015 at 13:37

Mrs Fish

I am similar to the previous guys who have posted and your OH. 13 months post op life is almost back to normal. As P said click on names to see peoples profiles. Also use the search box to find "awaiting robotic surgery" there are lots of tips in that conversation.

If I had to pick two top tips they would be, do the pelvic floor exercises pre op and do not get constipation post op.

All the best for the up coming op.

Thanks Chris

 

User
Posted 11 Jun 2015 at 18:04
Thanks everyone for your help. Removal of prostate recommended last night. We haven't looked into any other treatment, still in shock.

Think husb must be T2c if contained in prostate.

At age of 61 is op best? 60% of left side worrying, and we don't have any previous PSA to compare.

Scary times, main thing I pick up on this site is that there's time, no need to panic in deciding.

Thank you

User
Posted 11 Jun 2015 at 19:32

Originally Posted by: Online Community Member
Thanks everyone for your help. Removal of prostate recommended last night. We haven't looked into any other treatment, still in shock.

Think husb must be T2c if contained in prostate.

At age of 61 is op best? 60% of left side worrying, and we don't have any previous PSA to compare.

Scary times, main thing I pick up on this site is that there's time, no need to panic in deciding.

Thank you

 

Mrs Fish, 

You are asking the question that no on else can answer, only you and your OH.  Your husband may be a T2c, equally he may not be?  The only way to be certain is post op when the removed gland is looked at in a laboratory dish.  I do not recall anyone who had their Gleason downgraded post op, only up graded, mine included.   

Factors that you and he may wish to consider in your deliberations are:

1. His life expectancy - if his family lineage suggests that he may not live much beyond his 60s then you may both think that an op is not worth having?  If all his relatives live not much beyond mid 60s why go through an op?

2. You have said that he is fit and not overweight, BMI good.  If the PCa is caught early, and it may have been, then the sooner he does something the better, but every treatment option has POTENTIAL side effects, THE most significant of which is LIFE.

3.  Some folks will try to persuade you what to do, what treatment is best for you in their opinion, and they mean well, but, this is such a big decision to make, and in my view all anyone should say is look at every option available, consider all the potential consequences and then make your own minds up.  

Who have you spoken with about treatment options so far, maybe only a surgeon by the sound of things and from your latest post?

This is the most significant decision that you will both make so take time and do your research, and take in what others have to say, but with the rider that this is your decision alone.  One which you will both have to live with and with luck, live with for many years to come.

atb

dave

 

 

 

 

 

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

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

I am the statistic.

User
Posted 11 Jun 2015 at 19:43

Gosh - I am a bit shocked and depressed that he was diagnosed and the treatment was sorted all in one evening. In my experience, the people that struggle most with the after-effects of surgery are those who went into it without any understanding of what life would be like. You only have to read on here to see men who experience huge distress because they had no idea they would be left incontinent, that they would never ejaculate, that their penis would be smaller, etc etc. Maybe they were told at the hospital and forgot, undoubtedly there are those who just assume it won't apply to them.

My husband was 50 at diagnosis - the advice we got was to go away, think about it for a few months, have a nice normal summer doing the things couples do and then make a decision about treatment. My husband didn't like this advice, had the op in super-speedy time and has bitterly regretted pretty much ever since.If he had taken time, he might still have the same side effects but I don't think he would feel quite so angry and cheated.

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

User
Posted 11 Jun 2015 at 21:33

I am surprised that the dx and treatment option happened at the same time. Having said that dx to treatment in 6 weeks is quick/efficient/competent really. It still gives time for them to research their options and hopefully to speak to an oncologist.

Mr Fish said "Scary times, main thing I pick up on this site is that there's time" I am not a fan of people who have a dx such as this ie probably T2c going away thinking they have loads of time. We have no idea if they do or don't but the consultant may have a view on that having seen the MRI scan.

Bri

Edited by member 11 Jun 2015 at 21:36  | Reason: Not specified

User
Posted 11 Jun 2015 at 23:19

We shouldn't automatically be shocked by or criticise a hospital or medical practice before we have all the information.  I am sure I read this somewhere?  We should not get depressed about it either.

And herein lies the real problem, where contributors are already, intentionally or not, exerting undue influence on a stranger without knowing anything like enough about their circumstances and PCa staging.  

Mrs Fish, I hope that you and Mr Fish are reading elsewhere about PCa and treatments, and aggressive and non-aggressive cancers?

As you have no other PSA readings to assist your decision making, as Brian rightly points out, you do not know if you have a non-aggresive PCA, a so called "Pussycat", or an aggressive or "Tiger" PCa.

Slow and passive, or fast and aggressive, at some point the Cancer will get to a stage where some treatment options may be off the table, and it may become too late to be dealt with.  There will be a tipping point, like a climb up a hill, when you reach the top and start to roll down the other side. Of course that point may come many years down the line, or it may not.

Did your OH have any symptoms of PCa?  Sadly when there are symptoms, it s not an early diagnosis, I am told.  How was it discovered, a routine well man check?

When you read the individual history of people here please bear in mind that most men who undergo treatment do so without airing their experiences online.  "Here" is a very tiny snapshot of men who have had PCa, and dealt with it.

Whatever anyone here says you should do, should wait awhile for, should rule out, steers you towards, only you and your OH will be dealing with the consequences of the big decision.  We men all have regrets and wish that we had not made a choice, but we are all here and alive to moan about it, thank goodness.

atb

dave 

Edited by member 11 Jun 2015 at 23:20  | Reason: Not specified

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 12 Jun 2015 at 00:01

Absolutely agree treatment is a personal choice. Men choose different treatment for their own reasons. Some consultants will give patients some guidance but naturally favour their own discipline. All treatments potentially have side effects and these should be considered carefully along with the treatment differences and what these entail.

There can be quite a wait for surgery so one possibility is to book this and for your husband to cancel it if he decides on a different treatment in the interim.

Barry
User
Posted 20 Jun 2015 at 23:41
Hello mrs fish

My OH is in a very similar position to your, plus eight months. He had Gleason 7 on diagnosis (9 on pathology), psa 9.2, 20% and 3% on biopsy. He opted for surgery, and did this based on one consultation.

He had his surgery on 1st dec, and the surgeon was happy he had removed if all. Nerve sparing on one side.

He has had problems with incontinence- still in two- three pads a day at present, but dry at night (and if he does nothing physical). In the last two weeks, he has started to regain some EF, and we are hopeful on this front.

My advice to you.

Get the toolkit from this site and read it.

Readthis forum back to front

Don't read anything else. I felt like I needed all the information I could find, most of which conflicted, was inaccurate, or related to other countries. My OH is one of those to whom Lyn refers- the shortening, the incontinence, the length of time were all s massive shock to him post op. But I think this is just because we didn't take it in, and we didn't visit this forum.

Best of luck

Louise

Edited by member 20 Jun 2015 at 23:49  | Reason: Not specified

User
Posted 21 Jun 2015 at 12:22
What became apparent to me ( but took its time oddly ) is that PCa is a horrible disease and no matter which option for treatment you decide on it is going to be unpleasant and cause side-effects which hit at the very " heart " of being a man

Choosing became impossible , and so in the end when surgery was my only choice I was kind of glad.

I'm not at the stage yet to see how it has cured me or "damaged" me as a man. I just hope at 47 my life returns to as normal as one could hope for.

Very best wishes to you

Chris

 
Forum Jump  
©2022 Prostate Cancer UK