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The importance of asking Questions !

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Posted 5/18/2011 4:38 PM (GMT 0)
Well yesterday was my second 3 monthly visit to see my urologist and i was a little more firm with my line of questioning.Firstly i was interested in signing up to a clynical trial for phase 3 drug Ipilimumab but he informed me that i couldnt get on it because ADT hadnt failed me.I forgot to mention that ive been refered to the head of the urology dept since my last visit and thought it might be a good time to get more imfo.I asked if isotope scans could show false readings due to the presence of Arthritis as id worked my body hard in my younger days in cold wet environments and had previously shown arthritis in my toes several years earlier.His answer was Yes !! its possible BUT, and a big BUT, not in your case and he then proceeded to show me my skeletol scans on the computer.AT this point i realised that id had not been thourough enough with the previous urologist who had only mentioned bone mets in my spine and pelvis.Well i always felt he was trying to lighten the blow but i could see he was having an hard time delivering the devastating blow to a man of my young age.SO yesterday i asked for the complete picture and i was shown that i also have mets in 2 ribs and also in the vertebrae in my neck.Although this was more bad news i feel somewhat relieved today because i now know the whole story and i could sense that id been kept a little in the Dark previously.

IN CONCLUSION !!!!!! ASK ASK ASK and educate yourselves to this desease because the more you learn the more you can do to beat the darn thing !!!

Posted 5/18/2011 6:27 PM (GMT 0)
I call that less than full disclosure and holding back information from a patient, that you actually paid to know all this....that is not in holding to the Hypocratic Oath as far as I would say. I assume you realize the risk scenario you are dealing with....is there any oncologists you could see, do you have any money on your own perhaps to see a PCa oncologist? Have you tried contacting www.paactusa.org   (Rick Proffitt.) maybe they can be useful, they do help alot of people.  We hope you can deal with your disease in some sort of on going fashion.  Dr. Myers found a renewed optional (after other failures in single drugs) a 70% response rate in people whom were hrpca patients by adding leukine + ketoconazole  (this is pioneering by him), this would be costly on the leukine but could be bought through Canada for alot less. Just an example of what some of the pioneering docs already know and have found out in PCa. For bone issues: zometa, denosumab I think just got approved, Toremifen is in trials and some other options exist. (fyi)

Post Edited (zufus) : 5/18/2011 12:37:01 PM (GMT-6)

Posted 5/19/2011 8:37 AM (GMT 0)

Many thanks zufus,i probably should of mentioned that im a uk citizen so im lucky enough to be treated by the national health service which is very good.I am receiving zometa infusions every month at the moment and just realised recently that some of my aches and pains have gone away.I look to the USA for imformation as i feel you guys really are privey to some of the top urologists and treatment centers in the world.Here in the UK its very strange but we seem to be given limited imfo on the extent of our desease progression.I asked the urologist when i would next be scanned and he said that there was no need as the psa was the indicator to as what was going on.I also asked a nurse at the hospital if it was ok to read my notes and she told me that i wasnt supposed too.Thanks for the other pointers that you posted as to leukine and keto ect... ive made a note of that for the future.

                             regards Lee.

Posted 5/19/2011 11:12 AM (GMT 0)
Your uro-doc is not correct on PSA alone as the indicator of your disease progression, it is one of them, but far from the only. If you read Dr. Strum's book and maybe some other onco-docs whom know about the actual biology of PCa in patients, there are numerous additional testings to check for disease progressions. Some PCa's morph to get more aggressive and don't even give off PSA's to measure....so perhaps a patient could have progression and it would not reflect so in PSA values (might be a rarer event, but shows how complex PCa is). Is there any reasons you could not try: DES, emcyt or estradiol patches???? They may benefit you in various ways, as to bone density, slowing hrpca and easing your side effects on casodex or zoladex...it cancelled my side effects on ADT drugs when I had them overlap. Ketoconazole is another drug for hrpca but is tricky to some degree and has caveats as to a regiment of food and 8 hour time frames strickly adhered to and can counter act with certain drugs in a bad way...so it is tricky...but may help you to and is actually inexpensive....but perhaps in the UK you have little to no choices...which I think is outrageous...it is biased enough here too. Perhaps in the UK it is all about saving $$$$ on the Gov. side, here it is all about making $$$$$$ on the patients, which gets proven time and again. Best to you.
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