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Positive news but some uncertainty

User
Posted 26 Aug 2021 at 08:17

Hi everyone,

This is my first post but I have been following the forum for several months now and found it very helpful through a really difficult few months.

Overview:

Husband aged 60 diagnosed May 2021, grade 2a, gleason 8, psa 2.5

Opted for RP, surgery done in June. All went well, was a difficult few weeks post surgery but things are significantly improved now and getting back to a new 'normal'. 

Results post op were overwhelming positive. Doc reported that surgery went well and that biopsy showed so evidence of lymph node spread. They said its very good news. The part we are a little uncertain of is the surgical margins.

The doctor explained that due to the location of the tumour (being incredibly close to edge of capsule) they could not say categorically that there were negative margins. They assured us that this doesn't mean they are concerned but at the same time cannot guarantee that due to the intricacy of the surgery no microscopic cells were missed. He was very reassuring though and said there is nothing to worry about. 

Psa was done at the appointment so don't have that yet. 

Next check up is on 3 months time but we are obviously now concerned with suspected positive margins more monitoring should be done? Are we reading too much into this? 

Thanks in advance, 

Helen 

 

User
Posted 26 Aug 2021 at 10:23

Hi Helen,

Welcome to the forum, and welcome to the world of PSA anxiety.

I guess I am very lucky, I just take life as it comes. I have had treatment with curative intent. No test so far has indicated that it has failed. I really can't see any point in worrying about something when there is no evidence that it needs worrying about.

Well you are now living life in the new "normal". The first thing you need to know is that worrying about cancer cells won't make them go away. And if worrying isn't making you happy stop worrying, because it ain't helping.

The next thing is try and change the way you view things. In your post you have talked about what the surgeons have said, which is generally positive and a little bit of uncertainty. At the end of your post you have said "suspected positive margins" well that is your interpretation of what has been said, you could equally  have said "suspected negative margins" and that would have been equally valid, as no one at the moment knows what the margins are. So always look on the bright side until you have a reason not to. You will find the new normal a lot more barable if you can reduce your worry. 

So next step is get the psa result. If it is good then just go with the flow, and don't worry that the next one may be bad, because worrying won't change it. 

Hopefully your OH will continue with good results for the rest of his life. If so keep posting the good news here. If things start going wrong this forum will really help you know what treatments are available and what questions to ask the medics. 

Good luck think positive (unless thinking of margins, in which case think negative) 

 

 

Dave

User
Posted 26 Aug 2021 at 15:54

Thanks Dave. That was brilliant advice and much appreciated.

I am definitely going to try to stop the worrying as it really does not change anything.

Thanks for reading and advising. 

User
Posted 26 Aug 2021 at 18:56
Monitoring is being done, Helen. He’ll almost certainly have 3-monthly PSA test for at least the next year, probably changing to six-monthly thereafter. A rise is PSA will quickly be apparent. Should it be necessary, salvage RT is highly effective at dealing with this issue.

Best wishes,

Chris

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User
Posted 26 Aug 2021 at 10:23

Hi Helen,

Welcome to the forum, and welcome to the world of PSA anxiety.

I guess I am very lucky, I just take life as it comes. I have had treatment with curative intent. No test so far has indicated that it has failed. I really can't see any point in worrying about something when there is no evidence that it needs worrying about.

Well you are now living life in the new "normal". The first thing you need to know is that worrying about cancer cells won't make them go away. And if worrying isn't making you happy stop worrying, because it ain't helping.

The next thing is try and change the way you view things. In your post you have talked about what the surgeons have said, which is generally positive and a little bit of uncertainty. At the end of your post you have said "suspected positive margins" well that is your interpretation of what has been said, you could equally  have said "suspected negative margins" and that would have been equally valid, as no one at the moment knows what the margins are. So always look on the bright side until you have a reason not to. You will find the new normal a lot more barable if you can reduce your worry. 

So next step is get the psa result. If it is good then just go with the flow, and don't worry that the next one may be bad, because worrying won't change it. 

Hopefully your OH will continue with good results for the rest of his life. If so keep posting the good news here. If things start going wrong this forum will really help you know what treatments are available and what questions to ask the medics. 

Good luck think positive (unless thinking of margins, in which case think negative) 

 

 

Dave

User
Posted 26 Aug 2021 at 15:54

Thanks Dave. That was brilliant advice and much appreciated.

I am definitely going to try to stop the worrying as it really does not change anything.

Thanks for reading and advising. 

User
Posted 26 Aug 2021 at 18:00

I'm glad you found it helpful. One of our members signs off with this in her signature:

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

Perhaps a much more succinct way of saying what I typed. 

Dave

User
Posted 26 Aug 2021 at 18:56
Monitoring is being done, Helen. He’ll almost certainly have 3-monthly PSA test for at least the next year, probably changing to six-monthly thereafter. A rise is PSA will quickly be apparent. Should it be necessary, salvage RT is highly effective at dealing with this issue.

Best wishes,

Chris

User
Posted 26 Aug 2021 at 22:51

Thank you Chris. Really appreciate you taking the time to reply.

I have put things into perspective more now :-) 

User
Posted 02 Sep 2021 at 22:02

Hi Helen, I did try to pm you but not allowed! I felt as if I could have written this myself. Husband had robotic surgery in July, horrible first few weeks but like you settling down to a new normal. Saw consultant today, zero PSA , margins and lymph nodes clear. Good news thankfully , hard to take in as we had been on active surveillance for 8 years . Difficult to adjust the mindset. I hope all continues to progress well. How is the bladder training going ?

 
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