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Bazza update

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User
Posted 21 Nov 2014 at 10:42
After six months of ADT and a switch to Prostap from Zoladex, my testosterone is still above 1 and slowly rising along with my PSA, now 1.87 from a low of 0.13 in January this year. My recent bone scan was clear but alas, two lymph nodes in the pelvic region have been located and confirmed as cancerous. My ONCO has put me on maximal androgen blockade with three weekly Prostap injections and once a day 150mg Casodex but the outlook is not good and I have been given a statistical probability prognosis of between 18 months and 3 years.

I simply cannot believe how I could have had a da Vinci in 2010, been undetectable for 18 months then undetectable for a further 14 months after salvage radiotherapy and now be facing death so soon. Nor can I understand why my testosterone level will not fall to castrate level on hormones.

Edited by member 22 Nov 2014 at 09:05  | Reason: Not specified

User
Posted 22 Nov 2014 at 06:29

Hi Bazza

Sorry to see that you have new problems to contend with but don't listen to

prognoses , they are often very wrong and you will completely spoil the rest

of your life by worrying about them. There are some members of this 'club'

who have mets on their bones for years and are still going strong. You haven't

reached that stage yet, so try to enjoy your life as much as possible.

Incidentally, what is a 'promo ability prognosis' ?

User
Posted 22 Nov 2014 at 08:44

Hi Bazza, I replied to your email .... did you get it?

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

User
Posted 22 Nov 2014 at 09:04
Yes Lyn I did, sorry. I will get back to you following my second opinion shortly.

Barry

User
Posted 22 Nov 2014 at 10:05
Hi Barry

As Roly says DONT listen to the prognosis, you are an individual and not a statistic, it sounds as if you are already seeking a second opinion which is wise. Did they say why it's not possible to remove the affected lymph nodes. The testosterone can be coming from elsewhere such as the adrenal glands so the Casodex may block it from reaching the cells.

Roy

User
Posted 22 Nov 2014 at 10:08
Hi

ONCO said the nodes were deep in pelvis and were they to be removed, my legs would swell like an elephant.

User
Posted 22 Nov 2014 at 10:48
Hi Barry

Yes I was told the same, in that it would cause lymphodema, I had a second opinion and removed 32 of them during RP with no problems. I'm not saying you should follow this path but it's worth asking at your second opinion if you are seeing an Urologist and not an Oncologist.

Ps out of the 32 removed non were cancerous, so it shows they don't always get it right, did they biopsy them or are they going on an assumption due to the size and shape, or was a PET/CT scan done.

Roy

User
Posted 22 Nov 2014 at 16:55

Hi Barry,

 

I had my bladder and prostate out two years ago and a few lymph nodes into the bargain.  They were all PCa negative thank heavens, but I was left with lymphodema.  It is a nuisance to have a bit  of a bulge in my inner thigh, some fluid carried on my belly and a tendency during the day for fluid to gather at ankle level  Only my left leg seems to be affected.  It hasn't affected anything I do, just necessitates keeping my feet up sometimes when seated, but the fluid dispenses with activity anyway.  It will be a nuisance, no more, if you keep fit.  Don't let it worry you.

 

All the best

 

OC in Northants

User
Posted 22 Nov 2014 at 19:11

I think we need to bear in mind that Bazza's cancer has not behaved 'normally' and so comparisons with other people's similar stories might not be as helpful or reassuring to him as intended.

Bazza, I do think you need to press the second opinion specialist to see whether you can be biopsied again and/or to confirm that you have adenocarcinoma and not one of the less common types. I also hope that you are persisting with the CBT or have been able to access more specialist counselling since we last spoke?

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

 
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