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Not great recovery so far post RARP now + Margins

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User
Posted 05 Aug 2025 at 14:53

I had my RARP 30th June this year and haven't had a great recovery so far, 2 UTI's and counting, main wound dehiscced and looks like I have been hit in the stomach with an axe and has to heal as an open wound as couldn't be re-stitched (great pub story in the future I'm sure 😂). I have to have an urgent utrasound scan later today as I've found a large lump on one of my testicles too so the list just keeps growing!

After chasing for the pathology report I got told today by secretary of consultant that they found positive margins. I should get the full letter this week but I now have no idea what the future holds. I know everyone will have a different story to tell who have had same news but this really has side blinded me a bit. Those who have been following my YouTube channel where I have been telling my story to help raise awareness will know I've not had a great experience from the get go from trying to make a GP apointment to discuss my initial symtoms so to hear this news today is a bit gut wrenching.

I would love to hear from anyone who has had the same news.

can find me on youtube under Flashlamacq if you want to take a look at my journey.

Cheers

Flash

 

User
Posted 05 Aug 2025 at 19:54

Haia,

Sorry that you've had some news u weren't expecting.

I was told T2c, contained in prostate.

Post op told it was a T3a with EPE and focal positive margin. 1st, 2nd and 3rd PSA tests after op were all detectable although at the bottom of the range for the assay. Since then I have had 3 undetectable tests. 

However I think I have now got to a point where I expect, given my pathology, that the cancer will likely return at some point in the not too distant future. So, I am trying to make the most of now.

All the best,

Mel

 

User
Posted 05 Aug 2025 at 20:29

Really sorry to hear this Flash , I watched your latest about an hour ago and was gutted to see that you are still suffering and now having to have a further scan , it’s also pretty disgraceful that your only getting bits of information from your consultants secretary and are now having to wait for a letter

not sure if you on the NHS but my initial journey with them was so so bad , they really were horrendous on every level , I used to have private healthcare and am gutted that I let it lapse when I Finished work,  I am now though self funding privately as I just couldn't take anymore with the NHS

wishing you all the best mate ,let us know how you go on 

User
Posted 05 Aug 2025 at 20:57
It doesn't sound like a good experience for you Flash, you have been let down. It happens that patients are sometimes found to have positive margins on pathology when prior assessment was more optimistic (happened to me) but they should have communicated that and its implications without leaving you to chase up results.

The one good thing is that PSA should be zero after surgery to remove the prostate - as long as you are tested regularly even a small increase due to that positive margin can be detected very sensitively. However that is likely to lead you needing a second treatment (again, as happened to me).

Good luck.

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User
Posted 05 Aug 2025 at 19:54

Haia,

Sorry that you've had some news u weren't expecting.

I was told T2c, contained in prostate.

Post op told it was a T3a with EPE and focal positive margin. 1st, 2nd and 3rd PSA tests after op were all detectable although at the bottom of the range for the assay. Since then I have had 3 undetectable tests. 

However I think I have now got to a point where I expect, given my pathology, that the cancer will likely return at some point in the not too distant future. So, I am trying to make the most of now.

All the best,

Mel

 

User
Posted 05 Aug 2025 at 20:29

Really sorry to hear this Flash , I watched your latest about an hour ago and was gutted to see that you are still suffering and now having to have a further scan , it’s also pretty disgraceful that your only getting bits of information from your consultants secretary and are now having to wait for a letter

not sure if you on the NHS but my initial journey with them was so so bad , they really were horrendous on every level , I used to have private healthcare and am gutted that I let it lapse when I Finished work,  I am now though self funding privately as I just couldn't take anymore with the NHS

wishing you all the best mate ,let us know how you go on 

User
Posted 05 Aug 2025 at 20:57
It doesn't sound like a good experience for you Flash, you have been let down. It happens that patients are sometimes found to have positive margins on pathology when prior assessment was more optimistic (happened to me) but they should have communicated that and its implications without leaving you to chase up results.

The one good thing is that PSA should be zero after surgery to remove the prostate - as long as you are tested regularly even a small increase due to that positive margin can be detected very sensitively. However that is likely to lead you needing a second treatment (again, as happened to me).

Good luck.

User
Posted 05 Aug 2025 at 23:16

Originally Posted by: Online Community Member

Haia,

Sorry that you've had some news u weren't expecting.

I was told T2c, contained in prostate.

Post op told it was a T3a with EPE and focal positive margin. 1st, 2nd and 3rd PSA tests after op were all detectable although at the bottom of the range for the assay. Since then I have had 3 undetectable tests. 

However I think I have now got to a point where I expect, given my pathology, that the cancer will likely return at some point in the not too distant future. So, I am trying to make the most of now.

All the best,

Mel

 

 

Cheers Mel,

 

yeah it’s been tough and to hear that today was not great, had the scan today and now gotta wait for that result, I still have no idea when I’m getting my post op PSA test either, hope all goes well for you. Cheers

User
Posted 05 Aug 2025 at 23:22

Originally Posted by: Online Community Member

Really sorry to hear this Flash , I watched your latest about an hour ago and was gutted to see that you are still suffering and now having to have a further scan , it’s also pretty disgraceful that your only getting bits of information from your consultants secretary and are now having to wait for a letter

not sure if you on the NHS but my initial journey with them was so so bad , they really were horrendous on every level , I used to have private healthcare and am gutted that I let it lapse when I Finished work,  I am now though self funding privately as I just couldn't take anymore with the NHS

wishing you all the best mate ,let us know how you go on 

 

Cheers for the reply Niko,

I so wish I had medical cover too as I have to say I’ve had the worst experiences of NHS over past few months it’s just shocking, I think the secretary was trying to appease me a bit as she said she had just written the letter this morning, as I said I was not happy having heard nothing and am constantly chasing everyone up. I forgot to add in all this I have only just got my initial diagnosis letter on Saturday gone that was printed 22nd May after I had to request it 3 times from my specialist nurse, honestly I could write a book on the whole journey. cheers for giving the YouTube a look too.

cheers

User
Posted 05 Aug 2025 at 23:26

Originally Posted by: Online Community Member
It doesn't sound like a good experience for you Flash, you have been let down. It happens that patients are sometimes found to have positive margins on pathology when prior assessment was more optimistic (happened to me) but they should have communicated that and its implications without leaving you to chase up results.

The one good thing is that PSA should be zero after surgery to remove the prostate - as long as you are tested regularly even a small increase due to that positive margin can be detected very sensitively. However that is likely to lead you needing a second treatment (again, as happened to me).

Good luck.

Cheers JB

yeah it’s been dreadful experience, I have no idea when I will get the first post op PSA test either, probably something else I’ll have to chase for too no doubt. I guess I just have to do what I did prior to getting my diagnosis and that’s plan for worst and hope for the best.

 

cheers

User
Posted 06 Aug 2025 at 08:16

Recommend checking the NHS app if not done so as copies of any correspondence should be held with your medical record. Often quicker than backend admin. Also pop into your GP personally and ask for a printed copy of your final histology. I’d be amazed if it isn’t back from the lab. Often it’s sat on pending review by a doctor before it gets released to your medical record. You’ll probably need to take a short letter just to authorise the release of information to you so that data protection reqs are satisfied. 

I had to do this for my post op PSA blood lab report. In person is best as email often gets overlooked. This appeared to be the past of least resistance. My private surgeon was brilliant as he embraced IT so I had all correspondence as it was generated copied to me. My final histology was done in 6 days and I saw it the second it was sent by the lab - very refreshing to see clinicians embracing technology.

 
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