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Life Planning with the family

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User
Posted 08 Jan 2024 at 12:24

Dear All, 

I have been diagnosed very recently with Prostate Cancer, had my RARP on December 14th, and now I am heading towards the first post-op PSA measurement set on January 18th.  My personality is pretty much feet on the ground and I do not like to be optimistic / pessimistic unless there is a good reason, so I am approaching this date with obviously some hope but without expectations. 

As all of us are going through regular checks, I wonder how you manage the day to day life with your Dear ones when it comes to planning things to do together beyond the day or  beyond few weeks when they are in between,  through or beyond  the PSA check-up time. 

Do you expect the PSA result to make plans until the next check-up? Or you try to ignore these due dates when comes to planning ?

The first approach is more realistic but also lets the dates of the PSA check-up dictate your time and choices (in fact they do it anyway, but...) which obviously introduces an element of constant pressure in anything you want to do also for the people around you.

The second approach is less realistic but has the benefit to release the pressure to people around you. It has the negative element of having to cancel your plans if the check-ups show things are not good. 

I would really appreciate any advise and experience from how is going through this. Thank you!

 

 

User
Posted 08 Jan 2024 at 13:03

Hi Fed69,

I would say Live for Today and Get on with your life. I long for the day when I don’t have to organise my life around HT injections(every 13 weeks) and I will certainly not be letting PSA tests get in the way of having fun. I already move them about slightly  to suit my times abroad but moving the HT jabs is a big No! No! And it just so happens my dates for jabs fall around awkward dates like New Year, Easter and early summer, when I’d like to be away. Anyway would it REALLY matter if you were a bit early or late with your PSA test? Maybe if it was months it might but I don’t know if you’re planning long trips

One thing having this disease has taught me is to live every day as your last, don’t put anything off, and just have as much fun as you can😊

Derek

User
Posted 08 Jan 2024 at 13:11

Everyone will be different. In the 1st few weeks after my op I did not arrange anything. Physically I was not up to it and also mentally I had issues with incontinence. After my 1st post op PSA test and once I’d returned to work then as my fitness and confidence returned I started booking things and going away. My ok was April and my 1st trip away was in September. Since then I’ve booked weeks away every month. Now I’ve just had my 2nd post op result (.001) I’ve booked holidays to September this year. I’ve not yet had my date for the next consultation and PSA check but if I’m due to be away then I will change the appointment. Life goes on!! Good luck with your recovery. Be patient take it easy and listen to your body. 

User
Posted 08 Jan 2024 at 13:51

Hello mate,

I like to think of myself being pretty resolute, but perhaps my wife would disagree. πŸ™‚

Despite having PSA checks for many years and much more frequently over the past 3 years, they still bug me.

I'm lucky my kids are grown up and live away from home so the checks cause little disruption to our family life.

I'm a great believer in what will be, will be. I know how important the checks are, but I still find they're a constant reminder of the disease.  

You make a very poignant point of how the disease can effective your loved ones, it's the thing that concerns me most. I find it a lot easier to deal with my health issues than dealing with a loved one's. I'm sure my wife feels the same.

Edited by member 08 Jan 2024 at 13:59  | Reason: Not specified

User
Posted 08 Jan 2024 at 14:19

I had prostatectomy many years ago but I still remember the extreme anxiety and stress waiting for the first PSA result as well as the subsequent 6 monthly and yearly blood tests.  In many ways it was equally tough for my wife who never showed her real anxiety but provided support 24/7.

What was the result of your pathology report? Did it say anything about the margins. My annual anxiety waiting for the results gradually decreased over the first 10 years but I still keep my fingers crossed! I did not like to talk about my anxiety to anyone which did not help. Good luck.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 08 Jan 2024 at 14:40

Hello Pratap, 

thanks for your post. 

Margins were negative in the pathology report; also no metastasis on the Lynphonodes, and stadiation is T2c, localized. PSA pre-OP 5.1. PET SCAN PSMA before the OP with no metastatis. same as MRI. 

The tumor was located in the TZ mainly left side and it has been completely removed (R0 in the pathology report). 

The problem is the Gleason Score upgrade from the biopsy from 4+4 to 4+5, they found 5% of 5 in the tumor and 95% of 4. 

So I do not have reason to be overly optimistic about the developments...

Thanks for asking and thank you for your answer and support

Edited by member 08 Jan 2024 at 14:45  | Reason: Not specified

User
Posted 08 Jan 2024 at 16:38

Hi Fed69

Negative margins is a good reason to be optimistic. My diagnosis was not all that different from yours but we are all different. You seem to be starting this unwelcome journey from a good place and all you need is luck. Let us know how you get on. 

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 08 Jan 2024 at 21:51

How you prioritise your PSA tests will reflect how you prioritise life events. At the moment your cancer diagnosis and treatment is probably very high on your priority list, and quite rightly your first post op PSA test should be. So no surprise that you want the test as soon as practical and a post surgery consultation as soon as possible after that.

Hopefully it will be all OK, then each subsequent one becomes less important. I am five years post treatment and signed off from the hospital. Six monthly checks is appropriate for me. I can walk into my GP and get a PSA test with about a week's notice, so sometime in July I will get a test, but if it ain't convenient I'll get one either in June or August. Having the app on my phone means I get the results in about two days. Most people find the days between the test and getting the results the most stressful, so the app is very important in relieving that.

Of course if the PSA results are not good then your diagnosis and treatment will be back at the top of your list, and you will want to be more precise about when they get done.

At the moment PSA tests are no more important to my life than booking a dentist appointment.

 

Dave

User
Posted 09 Jan 2024 at 21:36
After my operation we still went ahead with a pre-planned holiday (to fit with daughter's school half term) just six weeks after. It was a bit early to be doing that but psychologically it was a huge boost. Since then we have largely planned family activities as we want and scheduled things like appointments for PSA bloods around that.
User
Posted 10 Jan 2024 at 00:34

Wow it has been full on for you. Congratulations on your wedding.

As for the upgrade to G9 as I was told many times it doesn’t matter what the G score is if all the cancer has been removed, and it sounds like a very good chance yours has. 
It was different with my husband as we already knew it had spread to a lymph node before his op.

I booked his post op PSA tests and always wanted them fairly consistent but would change a bit if we had plans.

Best of luck with your test 

User
Posted 11 Jan 2024 at 20:51
Fed69, that's a story and a half! Not many of us have been so ambitious so quick.

I assume it was partly adrenaline that saw you through those very active first few weeks, in which case it is no surprise you now feel the need to take things easier in the way most of us did earlier. Prostatectomy is a bigger operation than the few small scars make it look, your body has an awful lot of healing and recovery from the trauma to do.

I can see you are feeling pressured by your first PSA test post-op next week. I doubt it will be a big deal, and as other have said there isn't really a "right" date for getting future tests - you should make sure there are some recent results every time you have a follow-up appointment but you can get the blood taken to suit your other activities.

If I were you, I would be taking things gently but feel very happy to plan. Start looking at possible things to do with the family (e.g. holidays) during 2024 even if you don't actually book until you have the reassurance of your first test result.

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User
Posted 08 Jan 2024 at 13:03

Hi Fed69,

I would say Live for Today and Get on with your life. I long for the day when I don’t have to organise my life around HT injections(every 13 weeks) and I will certainly not be letting PSA tests get in the way of having fun. I already move them about slightly  to suit my times abroad but moving the HT jabs is a big No! No! And it just so happens my dates for jabs fall around awkward dates like New Year, Easter and early summer, when I’d like to be away. Anyway would it REALLY matter if you were a bit early or late with your PSA test? Maybe if it was months it might but I don’t know if you’re planning long trips

One thing having this disease has taught me is to live every day as your last, don’t put anything off, and just have as much fun as you can😊

Derek

User
Posted 08 Jan 2024 at 13:11

Everyone will be different. In the 1st few weeks after my op I did not arrange anything. Physically I was not up to it and also mentally I had issues with incontinence. After my 1st post op PSA test and once I’d returned to work then as my fitness and confidence returned I started booking things and going away. My ok was April and my 1st trip away was in September. Since then I’ve booked weeks away every month. Now I’ve just had my 2nd post op result (.001) I’ve booked holidays to September this year. I’ve not yet had my date for the next consultation and PSA check but if I’m due to be away then I will change the appointment. Life goes on!! Good luck with your recovery. Be patient take it easy and listen to your body. 

User
Posted 08 Jan 2024 at 13:47

Originally Posted by: Online Community Member

Hi Fed69,

I would say Live for Today and Get on with your life. I long for the day when I don’t have to organise my life around HT injections(every 13 weeks) and I will certainly not be letting PSA tests get in the way of having fun. I already move them about slightly  to suit my times abroad but moving the HT jabs is a big No! No! And it just so happens my dates for jabs fall around awkward dates like New Year, Easter and early summer, when I’d like to be away. Anyway would it REALLY matter if you were a bit early or late with your PSA test? Maybe if it was months it might but I don’t know if you’re planning long trips

One thing having this disease has taught me is to live every day as your last, don’t put anything off, and just have as much fun as you can😊

Derek

Thank you for your advise Decho! It was more a generic question based on experience from whom has already gone through a part of the journey. I am still under heavy emotional pressure...28/11 Diagnosis, 14/12 OP Pathological Report received 2 days ago, and 18/1 PSA. No reason to delay it, I am trying to understand how to replan my life without making it too miserable also for people around me. 

 

User
Posted 08 Jan 2024 at 13:51

Hello mate,

I like to think of myself being pretty resolute, but perhaps my wife would disagree. πŸ™‚

Despite having PSA checks for many years and much more frequently over the past 3 years, they still bug me.

I'm lucky my kids are grown up and live away from home so the checks cause little disruption to our family life.

I'm a great believer in what will be, will be. I know how important the checks are, but I still find they're a constant reminder of the disease.  

You make a very poignant point of how the disease can effective your loved ones, it's the thing that concerns me most. I find it a lot easier to deal with my health issues than dealing with a loved one's. I'm sure my wife feels the same.

Edited by member 08 Jan 2024 at 13:59  | Reason: Not specified

User
Posted 08 Jan 2024 at 14:19

I had prostatectomy many years ago but I still remember the extreme anxiety and stress waiting for the first PSA result as well as the subsequent 6 monthly and yearly blood tests.  In many ways it was equally tough for my wife who never showed her real anxiety but provided support 24/7.

What was the result of your pathology report? Did it say anything about the margins. My annual anxiety waiting for the results gradually decreased over the first 10 years but I still keep my fingers crossed! I did not like to talk about my anxiety to anyone which did not help. Good luck.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 08 Jan 2024 at 14:40

Hello Pratap, 

thanks for your post. 

Margins were negative in the pathology report; also no metastasis on the Lynphonodes, and stadiation is T2c, localized. PSA pre-OP 5.1. PET SCAN PSMA before the OP with no metastatis. same as MRI. 

The tumor was located in the TZ mainly left side and it has been completely removed (R0 in the pathology report). 

The problem is the Gleason Score upgrade from the biopsy from 4+4 to 4+5, they found 5% of 5 in the tumor and 95% of 4. 

So I do not have reason to be overly optimistic about the developments...

Thanks for asking and thank you for your answer and support

Edited by member 08 Jan 2024 at 14:45  | Reason: Not specified

User
Posted 08 Jan 2024 at 16:38

Hi Fed69

Negative margins is a good reason to be optimistic. My diagnosis was not all that different from yours but we are all different. You seem to be starting this unwelcome journey from a good place and all you need is luck. Let us know how you get on. 

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 08 Jan 2024 at 21:51

How you prioritise your PSA tests will reflect how you prioritise life events. At the moment your cancer diagnosis and treatment is probably very high on your priority list, and quite rightly your first post op PSA test should be. So no surprise that you want the test as soon as practical and a post surgery consultation as soon as possible after that.

Hopefully it will be all OK, then each subsequent one becomes less important. I am five years post treatment and signed off from the hospital. Six monthly checks is appropriate for me. I can walk into my GP and get a PSA test with about a week's notice, so sometime in July I will get a test, but if it ain't convenient I'll get one either in June or August. Having the app on my phone means I get the results in about two days. Most people find the days between the test and getting the results the most stressful, so the app is very important in relieving that.

Of course if the PSA results are not good then your diagnosis and treatment will be back at the top of your list, and you will want to be more precise about when they get done.

At the moment PSA tests are no more important to my life than booking a dentist appointment.

 

Dave

User
Posted 09 Jan 2024 at 21:36
After my operation we still went ahead with a pre-planned holiday (to fit with daughter's school half term) just six weeks after. It was a bit early to be doing that but psychologically it was a huge boost. Since then we have largely planned family activities as we want and scheduled things like appointments for PSA bloods around that.
User
Posted 10 Jan 2024 at 00:09

For me it was kind of dramatic: my diagnosis came on Nov 28th, surgery scheduled on December 14th in Berlin. And my wedding scheduled already since few weeks on December 22nd in Denmark. I spoke to the Doctors and asked if there was any chance for me to make it, they said yes but for sure they could tell me based on my situation on December 20th only. On December 20th I was discharged from the hospital and the day after flew to Denmark, to get married. Did not do too much than going to the City Hall and back and took it easy for the rest of the time, but I made it. 

And as well made a short holiday at the end of the year in Poland, taking it easy. 

All this was very intense, and now I feel all the mental pressure to find a way to live in this new normal. 

User
Posted 10 Jan 2024 at 00:34

Wow it has been full on for you. Congratulations on your wedding.

As for the upgrade to G9 as I was told many times it doesn’t matter what the G score is if all the cancer has been removed, and it sounds like a very good chance yours has. 
It was different with my husband as we already knew it had spread to a lymph node before his op.

I booked his post op PSA tests and always wanted them fairly consistent but would change a bit if we had plans.

Best of luck with your test 

User
Posted 11 Jan 2024 at 20:51
Fed69, that's a story and a half! Not many of us have been so ambitious so quick.

I assume it was partly adrenaline that saw you through those very active first few weeks, in which case it is no surprise you now feel the need to take things easier in the way most of us did earlier. Prostatectomy is a bigger operation than the few small scars make it look, your body has an awful lot of healing and recovery from the trauma to do.

I can see you are feeling pressured by your first PSA test post-op next week. I doubt it will be a big deal, and as other have said there isn't really a "right" date for getting future tests - you should make sure there are some recent results every time you have a follow-up appointment but you can get the blood taken to suit your other activities.

If I were you, I would be taking things gently but feel very happy to plan. Start looking at possible things to do with the family (e.g. holidays) during 2024 even if you don't actually book until you have the reassurance of your first test result.

 
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