I am 80 years and never had health problem....last time I saw GP was in 2008.
I was joking with GP of my wife and asked him to give me blood test prescription
Just to give him consulting fees
Surprise on may 15 2019
PSA 30...did not know what it means...
No symptoms whatsoever
Active physically mountain trekking ...days and days..
So starts ugly journey sitting in waiting rooms and docs taking just 15 min before showing you door
URO DID DRE and in 2 min he laughs and says cher ami you are in shit with T3 ....then says I will be your friend in this journey...and out I go
Bone scan cat scan choline pet scan and biopsy of G8
Still as healthy...
Put on Firmgon on july 15
and going for IMRT ...DONT know yet how many seances
Being completely zero on medicine side and learnt a lot about the scorched earth therapies....a shame to medicine...
As an engineer we offer these guys all tools programs IA and docs are mostly ignorant...even in using them...ignorant in protocols...not trusting URO
Consulted prostate Onco
Who suggested Choline Pet
And discovered tiny spots on pelvis not visible in Bone scan...
Amazed by indifference of docs towards patients...human aspects is missing...
What i found is that for all this I did not need a doc...
Robot doc would do a better job of diag...so simple
Firmagon plus Radio...
In a day of internet I came to same protocol...
Where do i need these inhuman money oriented lost souls doc...
I saw top onco of Marseille
Not happy....
Going to see top guy in Paris
Whose secretary seems to be more social..
..in France Heads of a dept are profs as well...so I hope with prof I may be able to discuss openly.
In a way this PC story made me aware of another world even though I worked with these guys as researcher...being patient...I dont wish anybody with these soulless Guys.....no respect for them
Waiting for Robot docs with IA
So I will keep posting
About this unwanted suicidal cancer
Journey...
Written by
Karmaji
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In the U.S., the USPSTF (United States Preventive Services Task Force) long ago advised against PSA screening for men over 70. So cases such as yours would be diagnosed at a much more advanced stage here. And yet, age is a risk factor for PCa.
At age 71, I can't say that I have experienced ageism yet, but I know it exists. Unfortunately, the patient has to break through professional indifference in some instances. Make the doctor interested in your case. Engage him/her in such a way as you will stand out from the hundreds of other patients. Learn the terminology so that you can discuss as an informed patient.
I am amazed indifference of this profession.... they are digging their own grave like cancer cells...Soon IA and robot docs will replace them... Only some elite docs will survive...Thanks for your advice....
As for me I really do not need these guys.....
Sure I will need RO hopefully the operator is in good mood during handling of Machine and he/she knows the tragedy of 2 mm miss....I dont have any confidence in these guys....no professional ethics....
I totally agree with you. My experience in Bombay with the quacks is BAD.
And, I completely agree with you regarding the radiation technicians. Our lives are virtually in their hands and they are indifferent and perhaps even callous.
I chose where to have my radiation therapy - based on two factors.. first was one of my best friends is a radiation tech, and he'd be doing or supervising the treatments. Second was he recommended speaking with his boss - the Radiation Oncologist who is head of the department, speaking with him at a time when I was becoming increasingly anxious due to the remoteness of most of the doctors I spoke to. His boss saw me the next day, and spent over an hour with me and my wife talking about the options for treatment, and what he'd recommend. He's in his late 30's, very accessable (responds to emails almost instantly) and very involved.
The RO directed the treatment, my friend did parts of it, and oversaw the other techs who did the rest. He was never out of the control room when I was on the machine.
I had originally started out seeking treatment at a very prestigious well known cancer treatment medical facility based in NYC that has branches in the suburbs, based on the theory they'd know best and did it day in-day out.
We waited 3 hours after our appointment time for seeing the first MD (a radiation oncologist.) He didn't want to start treatment or even ADT because he was considering me for a study (apparently G9's aren't easy to find). It became apparent that the study was more important to him then my prompt treatment.
Trying to make appointments with the other MD's at the world famous facility (surgical oncologist, medical oncologist) resulted in appointments up to 2 months out. I finally had it - asked for all my records and scans and went to my friend and the local hospital radiation oncology department.
My point of this longish story is - don't put up with arrogance and indifference.
If they're part of a big operation - insist on talking to the heads of the departments and letting them know this. If that doesn't work - start looking elsewhere.
I found better and very caring treatment at a local University Hospital radiation oncology center. I found a caring and extraordinarily bright medical oncologist at a major university cancer research center in NYC - due to a recommendation at the first and only local support group I went to (I found discussion of PSA numbers rather depressing..) I kept my local urologist to give me my Lupron shots. He was the one who found my PCa by insisting on a biopsy when he felt something wrong on a DRE.
Don't put up with it. I think that's the biggest part of this battle - finding people who will take the responsibility to treat you well and with care.
Maybe, you didn't notice that I have clearly written that I am Bombay based, not NYC or US based.
Its not that I have not tried to do something about their callousness. I complained to the Head of Dept (at a prestigious Bombay hospital). He pleaded helplessness and told me to tolerate the indiscipline or things might get even worse.
Maybe, you should have addressed Karmaji, instead of me. He would be able to give you his version of how bad or good things are in the West.
Facts are facts. How someone with influence can get around them is another matter altogether.
Actually - I did see that. My general reply (it wasn't specific to you, just came out that way) applies to any of us who are running into indifferent and calous treatment. Are there no other cancer care centers in India? With Mumbai having a population of over 12,400,000 - is there only the one cancer care center? Are all of them that bad?
Facts may be facts - and you may just be stuck in the worst of worlds - but if I was unhappy with my doctors and/or treatment, I'd continue researching until I found ones I was comfortable with. It certainly isn't uncommon for people in the US to travel to Europe for a treatment not yet available in the US.
I'd rather try to find a solution rather than just complain about the current bad situation. Karmaji said in his reply to me - "we can look for a doc and environment which is more caring".. I think that's a great suggestion.
If you think I am not trying to "find a solution" for my own problem, you don't know me. Anyways, I have decided after reading your replies, to not waste my time further with you.
They stopped screening me at 70 so mine wasn’t caught when something could have been done about it. I’m the new normal - we don’t find it until it’s stage 4.
Unfortunately it isn't. Admittedly, PSA is not a great marker, but it and the DRE are the only ones we have. Stop checking those and how do you find out? Same way as I did: difficulty in urination, go to urologist, biopsy of Gleason 9, bone scan reveals bone mets. You're stage 4.
PSA is a $90 test. By my calculation, the savings of $90 from not making that test has cost them almost $200,000 so far and I am determined to stay alive until it's at last a quarter of a million dollars. If the only way I can get back at those bastards is through the pocketbook, that's how I'll do it.
Quarter of a million? I'm sure you will be a million dollar baby. At least. In two and a half years I'm well over half a million billed. Now, billed and paid are hugely different. Follow the money. That just stinks. So much money involved, if you follow it to closely, you may be assassinated. Great theme for a novel. Are you out there Tall_Allen? Or j-o-h-n can help us, and we'll just bring in the clowns. A Broadway show. Do we laugh or cry? Had my first psa at 66, after going on medicare and getting new doctor. Stage IV prostate cancer. I'm with you Stego.
Here is a good place to look for real help about "quality of life". This is a 10-part series about many other "free" things we can do to help us live longer. It is a whole world of information never mentioned by the mainstream (mainly because they do not know about such things):
These are the things the poor of this world do to avoid expensive treatment, or to minimise expensive treatment. A lot of them will outlive "conventional" treatment too. Worth taking a look and make notes!
Karmaji...yoiu said "DONT know yet how many seances"
If your doc is holding seances to determine treatment, Ask him if he's heard from my Aunt Katty. She died about 40 years ago and none of the mystics I've seen has been able to make contact.
Well, I for one found that funny. There are some of us here who are twisted and who are walking on the Far Side. Notice I said walking and not running. Enjoy.
He is from France and séance means "session" or " a sitting". A much more narrow meaning of the word has come to us in English related to a session with a spiritualist alone.
I meant was the RO WILL look at the anatomy thru MRI/CAT SCAN TO DECIDE the protocol.
....20 or 38 sessions with 2 grays etc...and touching nearby places to be sure..
He will know after capturing the correct anatomy...
Talking about docs...my experience is look around till there is good body language...especially follow up after scorched earth treatments....the key to avoid recurrence...
Here in Canada I have also noticed the indifference of Doctors . I think we must stay on top of things ourselves and not expect too much individual attention from them. All the doctors seem to rely on SOC....standard of care, even if it dates back several years. I envy the Americans who have options (although I'm sure there are some who cannot afford a lot of care). When I asked about bipolar androgen therapy I was told to stop reading on the internet. Between my husband and myself I am the mouthy one (bouche forte) and I intend to continue to ask questions and fight for treatment.
I have gotten some excellent advice from this forum.
Centre Hospitalier de Cornouaille Quimper, it is only ten minutes away from us so it is very convenient.
I must have visited the place around fifty times in the last two years for tests, radiation, etc and if I needed anything from home or a shop my wife would bring it in on her visits.
I am on long term surveillance, three monthly PSA tests, six monthly visits, etc, and I will be for a long time, probably for life.
Je vais voir Dr Cussenot à Tenon pour avoir son opinion...
You’ve had a wonderfully healthy life until 80....I like you Urologist . His compassion is in the right place ...most drs minds are on the $ .. You seem to have a handle on the Bs that we all face .. Good luck ! I look forward to next post .. Scott in Az.
I had wonderful 80 years... love sex and dance of joy....
When I got news of G 8 with T3B or more ....
My URO took 2 minutes of DRE to say
mon ami tu es dans une vraie merde
My friend u r in real shit....
And we laughed the oriental way.....
My wife and myself said may be it is time to shed our robes....
We wont sacrifice Quality of Life in favor of prolonging.....
We had a new awareness of beauty of life....
So I am devoting to seek a path facing PC with joyful mind and employing all health tools to live fully.....and having a human team of docs...oncologiste URO RO ...who do not smell $ but QOL.....we r all having fun with home grown terrorist...
And it is a blessing to be part of this APC fraternity....lovable people...
If PC goes out of control.....
I will leave this world with satisfied mind....Joan Baez song
I like your style Sir.. thanks for that song . “ hello emptiness” I choose to laugh at our irony as much as I can . There is plenty of drudgery to go around . Peace to you Karmaji.. Welcome aboard this leaky ship ..
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End of chemo and CT scan result. 
Advanced PC
My story .. first post 
Successful Pluvicto Treatment
