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my 4th onco

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User

Posted 12 Jan 2016 at 15:48

Well been for my onco visit

In 8 visits seen 4 different ones

None have seemed that intresred

The one today said

'well you only have bone mets'

goodnews is PSA is 0.03

As thursday is my last chemo we asked if their would be any comparison scans

Answer was nobas it would be a waste of time as my PSA is that low their would be nothing to see

Next visit will be in 6 weeks followed by 3monthly ones

Still not got any answers re my staging

Regards

Nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 12 Jan 2016 at 16:47

Hi Nidge
Sorry your treatment doesn't seem that satisfactory. I would be angry seeing 4 different Oncos so I can see where you are coming from. If your PSA is 0.03 that is fantastic news and you just have to hope it doesn't start rising again , and that the HT continues to work on top of the chemo. Did they offer you RT at all ?
As for staging , if you have bone mets then you are T4 -- its already spread outside the prostate yeh !! And you know you are G9 ?? We will all be keeping our fingers crossed for you
Chris

Edited by member 12 Jan 2016 at 16:49 | Reason: Not specified

User

Posted 12 Jan 2016 at 17:09

Told them about tingling and pins n needles sensation in leg

Said if that keeps happening then they may givevme RT

Regards

Nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 12 Jan 2016 at 17:33

Which hospital Nidge, although I am presuming Doncaster, as I know they have their outpatients appointment there on a Tuesday...
Only reason I ask is that I did once post about the attitude and as I saw it the experience of the person I once saw.

So you only have bone mets eh....well everything is hunky dory then....that kind of response really disappoints me as it makes me think they are not considering us as individuals it also comes across as uncaring.

They are probably right about the scan though

Bri

User

Posted 12 Jan 2016 at 17:36

Also have a big wart on left arm this has been caused by the chemo was told by my 1st onco once chem finished we will get it lanced

So asjed tge onco today about it he was totally unintrested said nothing

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 12 Jan 2016 at 17:38

Hi Nidge

I've had 3/6 monthly visits to the oncologist since January 2014, I first saw the 'head' oncologist, then her registrar, then the nurse specialist followed by two other oncologists and I'm seeing a different one again on the 21st of this month.

Having said I've been very fortunate as they've all been very good.

I hope the 'service' you get improves

Arthur

Edited by member 12 Jan 2016 at 17:39 | Reason: Not specified

User

Posted 12 Jan 2016 at 19:17

yep it was Donny, considering seeing about moving elsewhere as I do not feel confident with them

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 12 Jan 2016 at 21:10

It's strange isn,t it that individual experience can be so different but I can honestly say that, though I also have seen four oncos at the same place they are part of the same team and seem well informed about what is happening to me. The main consultant is on maternity leave so you may have got her replacement and I met him for the first time a week or so ago and though his style was different he acted decisively. So it's just another perspective from my own experience.

As other posts have said though you are missing out in the celebration which the PSA news should bring. The chemo has brought you some respite and that will be the oncos main concern. Maybe holding onto that fact would help shift your thinking. Anyway just my thoughts!

User

Posted 13 Jan 2016 at 05:38

hey up york hull
you may be correct in what you say, at the end of the day it has been nearly my 1st year but the echos of the urologist prognosis keep going through my head and none of the oncologists have given any answer to the same question

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 13 Jan 2016 at 08:49

Nidge,

Like any other aspect of life the NHS has good and bad staff, and this good and bad staff have good and bad days. In the ideal world you would encounter a good member of staff having a good day and you will leave delighted. But if you get a bad member of staff having their bad day, you will leave not as happy as you could.

I remember one appointment I had where the member of NHS staff informed me in error that my PSA had doubled, he got the decimal point in the wrong place, and when I expressed my concern and alarm, he said "There's no need to jump off a bridge yet".

Oh how I chuckled and immediately felt reassured at his delightful manner. Actually I thought cooking tawt, and wrote a letter of complaint to my GP. My GP then called me and explained the real reading and did reassure me.

If you feel sufficiently aggrieved write in and make a complaint. What is the worst they can do, treat you badly, again? Letters of complaint tend to focus people's minds on the person in front of them, not the NHS patient number.

Good luck.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 13 Jan 2016 at 18:04

Hi Nidge,

If there is one thing that makes my blood boil is some of the prognosis that people are given.

When i was diagnosed there was not many here that started in a worse place than me, but with the spread i had and gleason score Jamie still gave me 3 - 4 years. Now i have reached three he is buying the beer and when i reach 4 its a meal.

If you haven't seen my scans there here;

http://community.prostatecanceruk.org/posts/t9698-Simon-Story-Chapter-2#post117233

Just scroll down to them

I really do not get these prognosis sometimes.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

Good luck with your last chemo

Don't deny the diagnosis; try to defy the verdict

User

Posted 13 Jan 2016 at 21:17

Hi si
Just read through your link
Feel kn****rd just reading it never mind what u been through
Am lost for words

Regards and respect
Nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

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