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One month check up

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User
Posted 18 Jul 2019 at 11:49

Hi guys

So I went for my one month post surgery check up yesterday I came away feeling really confused.

He basically told me my cancer has been cured but the pathology report showed it had broken out of the capsule and of 19 lymph nodes removed they confirmed cancer cells in one node.

So in one breath he's saying I'm cured but in the next breath he's saying it may of spread and suggests I see oncology again as further treatment will probably be needed.

Why do they talk in ifs and buts all the time.

Garry 

Be positive stay positive 

User
Posted 18 Jul 2019 at 11:49

Hi guys

So I went for my one month post surgery check up yesterday I came away feeling really confused.

He basically told me my cancer has been cured but the pathology report showed it had broken out of the capsule and of 19 lymph nodes removed they confirmed cancer cells in one node.

So in one breath he's saying I'm cured but in the next breath he's saying it may of spread and suggests I see oncology again as further treatment will probably be needed.

Why do they talk in ifs and buts all the time.

Garry 

Be positive stay positive 

User
Posted 18 Jul 2019 at 12:32

Garry,

It's better I think to have the mindset, so far so good, and try and get on with life.

PCa can reappear 5, 10, 15 years after radical treatment, perhaps even beyond, which is why being in remission is a better concept. Which is why continuing to have a regular PSA check is important.  Hopefully every PSA check you have will come back "undetectable" which, in time will strengthen the case of being cured.

Good luck

Flexi

User
Posted 20 Jul 2019 at 11:56
His NHS manager who was accompanying him to the Specials concert in our Old Cathedral ruins (they both come from Coventry originally) proudly declared him ‘the top neurological oncologist in Britain today’.

Cheers, John.

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User
Posted 18 Jul 2019 at 12:12

Sorry to hear Garry.

Many here have suggested it's irresponsible to ever refer to the cancer as being cured - you always hope for lifelong remission until you die of something unrelated. A cure would imply no risk of recurrence of the original cancer, and I think that's never the case, however small that risk might be.

Have you had a post-op PSA test yet?

I guess oncology might monitor PSA and see what happens, or they might suggest radiotherapy in any case. They might give you the choice, putting pros and cons of each, so you could starting thinking through those yourself. 4+3 is at the higher end of intermediate and it had already spread, so they might prefer the radiotherapy option sooner rather than later, but just guessing.

User
Posted 18 Jul 2019 at 12:32

Garry,

It's better I think to have the mindset, so far so good, and try and get on with life.

PCa can reappear 5, 10, 15 years after radical treatment, perhaps even beyond, which is why being in remission is a better concept. Which is why continuing to have a regular PSA check is important.  Hopefully every PSA check you have will come back "undetectable" which, in time will strengthen the case of being cured.

Good luck

Flexi

User
Posted 20 Jul 2019 at 01:38

Hi Garry

Consultant doesn't have enough info !   Can you ask him next time on what basis has he made those statements ? 

What assay/ Dec places are your PSA blood been provided ?  PSA 'half life' (each person will have differing rates anyway)  - at 4 weeks (did you have an 'early' PSA test then ?) may not be  0.01 or lower anyway. 

You need a test at 6 weeks (or thereabouts) and this hopefully should be as low as possible (ie * 0.05 or lower ) as I'm sure you will have been told.    If you see some recent posts on here, some 'post RP' values have been quite high.

It could be 12 weeks (ie 3 months) where you (and your consultant) hopefully sees a value of 0.01 or lower  (it might be < 0.1 or undetectable)        Maybe he's seen your PSA bloods already and they are undetectable, and therefore great news, which he should have explained clearly and not confused.   

User
Posted 20 Jul 2019 at 04:05

I bumped into a top neurological oncologist (£350 a consultation) in the pub last week, and he told me that as my post-op PSA is undetectable, I am cured. Moreover, he stated ‘Anyway, cancer won’t exist in five years’.

I was so thrilled by the wonderful news that I looked him up on the internet in case he was an impostor and a bullshitter. He is genuinely one of the top consultants in Harley Street.

I now wonder if he was p****d!

Cheers, John.

Edited by member 20 Jul 2019 at 07:39  | Reason: Not specified

User
Posted 20 Jul 2019 at 11:56
His NHS manager who was accompanying him to the Specials concert in our Old Cathedral ruins (they both come from Coventry originally) proudly declared him ‘the top neurological oncologist in Britain today’.

Cheers, John.

User
Posted 20 Jul 2019 at 12:54
I am fascinated by this. You were in a pub, met a stranger, found out he was a brain tumour specialist so you told him about your PSA????? Surely not?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Jul 2019 at 13:56

I was in a pub. Two former Coventrians arrived for the Specials concert after years away.

We were reminiscing about old Coventry, and they asked me my occupation. I asked them theirs, and oncology cropped up, and at some point I must have mentioned my recent PCa experience, (he works at the same London private hospital within the Shard as Professor Whocannotbenamedhere ), whereupon the Consultant came out with the statements above.

These things happen in life.

Cheers, John

Edited by member 20 Jul 2019 at 19:01  | Reason: Not specified

 
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