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6 week check with Urology nurse

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User
Posted 03 Dec 2019 at 16:37

 

Post Radical Prostectomy. Gleeson 4+3

Having been told that the prostate cancer was contained in the capsule we were told it was a T3a which had broken through the capsule. Lymph nodes  sample clear also bladder neck sample clear and the margins were clear.  PSA test in 6 weeks and consultant appointment. Hopefully the PSA result will be low and no more treatment will be needed. Does this look likely? If further treatment needed what would it be?

Husbands Incontenence slowly improving during the morning dry at night and in the morning a bit and more improvement hoped for in the next few weeks. 

Anyone else finding this process harder as it is the winter time? 

 

We are discussing about this change but it has thrown me. I like certainty.Husband is very stoic and  accepting of the positives. Though he did remind me firmly that he was the one with the disease! 

 

Onwards and upwards.

 

 

 

 

Edited by member 04 Dec 2019 at 19:45  | Reason: Not specified

User
Posted 03 Dec 2019 at 21:34

B

There are various forms of salvage treatment, the common ones are Radiotherapy, hormone therapy or a combination of both. Have a positive attitude until you are told  there is a problem, you could be many years before additional treatment is recommended.  Yes the  cold weather can have an effect on the bladder irrespective of any medical intervention.

Thanks Chris

User
Posted 03 Dec 2019 at 23:21
It's not unusual for the staging to go "up" after RP. The good news is you still have a great opportunity for a durable remission. A key figure will be your first post op PSA. Until then clear margins and lymph nodes are all good indicators.
User
Posted 04 Dec 2019 at 07:01

Thanks Chris.

User
Posted 04 Dec 2019 at 08:54

Ah OK we did not know that. Yes we have some positives. 

User
Posted 04 Dec 2019 at 10:16

Hi B,

Thanks for raising this important issue which highlights another step into the unknown. You've highlighted the difficulties and uncertainties faced by everyone involved, particularly our partners.

I'm post-op but creeping towards that 6 week check, and as has been pointed out here, staging could go up (or down) followed by possible further treatment? (Who knows). Whilst I find myself surprisingly accepting of what will be, this has knocked my other half for six and I often find her crying. It's a bit like the diagnosis all over again (or waiting for biopsy results), where just as my scars are healing, those subtle psychological ones start to open up for those who matter in my life.

Thanks again and Good luck!

Kev.

User
Posted 04 Dec 2019 at 10:44

Hi Kev T

I am like your other half rocked by the un certainty My husband is being accepting but that is his way. Hug each other and take each day as it comes. 

 

Edited by member 04 Dec 2019 at 10:48  | Reason: Not specified

User
Posted 04 Dec 2019 at 11:51
"PSA test anxiety" never goes away, but you do learn to live with it. The only advice I can offer is to try to put it out of your mind and get on with life!

Best wishes,

Chris

User
Posted 04 Dec 2019 at 11:55

Easier said than done ! 

User
Posted 04 Dec 2019 at 11:57
We all need to realise that the older we get the more uncertainty we can expect.

The important thing is still being here AND having QOL. If you have that nothing else matters, if you don't have QOL do what you can to restore it but accept none of us are getting any younger.

User
Posted 04 Dec 2019 at 12:01
Oh, I know it's easier said than done, but it's something everyone has to come to terms with in their own way, and over time people do find a way to do so. Cancer becomes the "new normal" and a part of your life. In my own case, my cancer diagnosis made me realise just how precious life is, and I took early retirement to live life to the full.

Best wishes,

Chris

User
Posted 04 Dec 2019 at 19:42

Life is indeed precious. Life changes do make you realise this when a diagnosis is made. 

 

 

 

User
Posted 07 Dec 2019 at 16:20

Is the first PSA reading the one we should go by or is it likely to change in the first year. 

T3a grade post op Lymph nodes badder neck and margins clear. 

User
Posted 07 Dec 2019 at 16:23
Hopefully it will be undetectable and stay there
User
Posted 07 Dec 2019 at 16:25
The important thing is how the PSA reading changes over time. That's much more important than what the actual number is.

Best wishes,

Chris

User
Posted 07 Dec 2019 at 16:32

Thanks both. 

 

User
Posted 07 Dec 2019 at 17:04

Originally Posted by: Online Community Member
The important thing is how the PSA reading changes over time. That's much more important than what the actual number is.

 

That is almost but not completely true. if the first PSA result is over 0.2 I would expect the surgeon to make a referral to oncology as it suggests they didn't get everything out. If it is below 0.1 (or whatever is the lowest reading in your area - might be 0.03 or 0.04 for example) that's a good outcome but they will monitor closely to make sure the PSA  stays low. If the first result comes in at somewhere between 0.1 - 0.2 then they may suggest re-testing in a couple of weeks in case it was just some PSA hanging around after the op. 

 

In many regions, the monitoring approach for an undetectable PSA (<0.1, <0.03 or whatever) is:

3 monthly PSA test for the first 2 years

6 monthly PSA test for the next 3 years

Annual PSA test forevermore

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

User
Posted 07 Dec 2019 at 17:40

Thank you Lyn. 

User
Posted 15 Jan 2020 at 09:58

A week till the first PSA results with the consultant. Both feeling nervous now. Hubby off to get the blood test done. Not helped by not being listed on their system for the test and having to call around to sort it the consultants Secretary and the Urology nurse to get the test done. Anxiety. Hubby not sleeping at the moment. One good thing is that the incontenence is getting  much better down to one pad now. 

Edited by member 15 Jan 2020 at 13:50  | Reason: Not specified

User
Posted 15 Jan 2020 at 13:21

Great news ref continence.

i tend to get bloods done by GP surgery nurse. Almost walk in/out. Takes the local hospital out of the loop which is busier so more delays etc

hope all goes well on your review.

TG

User
Posted 15 Jan 2020 at 13:34

Thank you TG let's hope so.  The hospital and GP systems are not linked so we did what we were told first test post op. I understand the pressures the NHS are under. Hubby expected a problem.

User
Posted 15 Jan 2020 at 13:42
I get my blood tests done when I want at my local chemists. The GP gave some PSA test forms eighteen months ago and I have a photocopier...

I get the results next day on this here IPad via the EMIS patient access app. Unfortunately my situation doesn’t seem to obtain through the UK. Don’t know why.

Best of luck with the test.

Cheers, John.

User
Posted 23 Jan 2020 at 12:18
O.01 today at 3 month check. Next sppt 6 months so July.
User
Posted 23 Jan 2020 at 12:24

Great news.

Ido4

User
Posted 23 Jan 2020 at 15:16

Thanks to all for the support and advice here and to the wonderful nurses for their phone support. On with our lives. 

User
Posted 23 Jan 2020 at 17:58

Originally Posted by: Online Community Member
O.01 today at 3 month check. Next sppt 6 months so July.
Great news. Hope it continues

 
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