Incredible and difficult rad choices in the PC journey

I have yet to have a doctor tell me this is what I want to do? There are always these options on the table and I pick. In my case I have 3 path reports, a 7 from Texarkana, 2 (4+5) from MDA and
1 (4+5) from John Hopkins. So Dr Jobola says if I believe myself to be a 9 then this is a very aggressive cancer. So he suggested everything including the kitchen sink. That is ADT(Casadex 10 days) and Lupron 2 years, and 4 weeks of Protons and 4 weeks of Photons. and handed me about 6 pages of side effects! My choice he says! If I think I'm a 7 then just ADT and Protons.
Now MDA does Not offer Photons with protons back to back. They said the side effects are heavy and the statistics are not warranting the extra radiation. so in my case they were offering ADT and Protons(8 weeks). My surgeons are backing off saying 9's are not good surgical candidates? But it is all a gamble isn't it. Noone knows how an individual will react to treatment and how heavy the side effects will be.

and In both cases medicare/Blue Cross have not signaled a go ahead. so I wait. I have a nice room rented down the street from Loma Linda for $250 a month. kitchen priv and laundrey. But my daughter lives 45 minutes away so I have that too.

So its all about side effects? If ya read the entire list it is ghastly!

Berdo - first of all - hugs!
-what a confusing mess you have been handed.
-if you are a 9 it is my understanding that surgery will not be of benefit to you in the short term or long term - at that stage the PCa usually has gone visiting other sites so you might as well keep your innards intact while you choose other methods to slow down / kill off the PCa -

I am not well versed in that avenue of action - so am handing it over to our HW buddies ( and buddettes) for that info.

-wishing you peace and contentment and a path for action and recovery that is best for you.
hugs again,
Bronson
.........

Back in 2002 I searched out some options for radiations as my primary therapy, surgery was too much of a gamble with my high stats and Dr. Menon refused surgery in my case (he was correct too). So, I got the most potent form of external radiations obtainable and signed off for accepting those high parameters and risks. I got Neutron rays 10 sessions and 24 session thereafer of IMRT-photon rays...it went well and here I am 10+ years later without any serious issues known from that. Neutron rays are the most potent and work differently on the cells, Proton is next and then Photon. Not many cyclotron machines running in the USA to make Neutron rays or docs whom know how to use them safely enough is my guess. Main thing is getting an expert in radiation and with newer technology machines for targeting and delivery.

Since you have high volume disease all 8 cores positive, just my thoughts is hit hard as hell asap, consider using ADT3 up front prior to radiations or ADT2 (see Bolla study abstracts and similar studies, showing better survival with drugs first, later radiation, continued drugs thereafter). My nadir psa level was 6 months afer radiations (I did monthly psa tests). I had 12/12 biopsies all loaded 80-95% vol. PCa...and total urinary blockage from PCa...Gleasons found 7,8,9's (2-sets like that) Bolla studies were the best chance I could find in 2002. I did ADT3 for like 4-5 months before starting radiations as per Bolla concepts.

Post Edited (zufus) : 3/7/2013 11:38:53 AM (GMT-7)

my doc is recommending everything including the kitchen sink!!

speaking of sink does that $250 a month room have a toilet ?

ed

 

yup, my rental is a room in a 3 bedroom house, she rents 2 rooms, the big room for me, dressor and new bed. yup nice bathroom and a shelf for me. lots of fridge room, but being san bernardino tons of eateries. lots of hot rod guys around and plenty of musicians to jam with. Loma Linda said I could pick a time slot from 6am to 11pm so I'll do a low traffic slot. noon is horrendous over by the hospital. traffic city. but so is houston, it is a massive jam. I need to find out why MDA does not believe in the addition of radiation to protons/adt?

hey quincy how is the symptoms? I'll be on that stuff for quite a while. and I only do 10 days of casadex then the shot? weird how many ways there is to treat this monster.