Story of PC : I am 80 years and never... - Advanced Prostate...

Advanced Prostate Cancer

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Story of PC

Karmaji profile image
39 Replies

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...

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Karmaji profile image
Karmaji
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39 Replies
pjoshea13 profile image
pjoshea13

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.

Best wishes, -Patrick

Karmaji profile image
Karmaji in reply to pjoshea13

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....

tango65 profile image
tango65 in reply to Karmaji

Best of luck on this journey.

whatsinaname profile image
whatsinaname in reply to Karmaji

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.

Don_1213 profile image
Don_1213 in reply to whatsinaname

They're not always callous and indifferent.

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.

whatsinaname profile image
whatsinaname in reply to Don_1213

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.

Don_1213 profile image
Don_1213 in reply to whatsinaname

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.

whatsinaname profile image
whatsinaname in reply to Don_1213

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.

Don_1213 profile image
Don_1213 in reply to whatsinaname

Sounds PERFECT to me.

whatsinaname profile image
whatsinaname in reply to Don_1213

Remember it was you who barged in with your gratuitous advice.

in reply to whatsinaname

Anger will get you nowhere. Think in a linear fashion and you will be much better off.

Karmaji profile image
Karmaji in reply to Don_1213

Well said....

We cant change the mind set of these guys...

But we can look for a doc and environment which is more caring...

Please do not rush and choose the protocol best suited....double or triple opinion is a must...

Even my Uro says if I wish take second opinion...

When I did he felt a bit insulted...the ego..

This forum is an in place for sharing...

billy1950 profile image
billy1950 in reply to Don_1213

Hi Don_1213’

Could you let me know the name of the major cancer treatment facility in NYC. Thanks, Billy

Stegosaurus37 profile image
Stegosaurus37 in reply to pjoshea13

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.

in reply to Stegosaurus37

That’s Bs..!

Stegosaurus37 profile image
Stegosaurus37 in reply to

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.

in reply to Stegosaurus37

I too waited until I was stage #4 .but I was only 53 . I was saying that to stop testing at 70 is bs...

Stegosaurus37 profile image
Stegosaurus37 in reply to

Correct - my error in interpretation of your comment.

monte1111 profile image
monte1111 in reply to Stegosaurus37

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):

squareone.chrisbeatcancer.c...

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!

WXYZ123 profile image
WXYZ123

Go for quality over quantity

Sounds like you already have that...

Getting into the belly of the beast is a nightmare and only prolongs the inevitable...OK if you don’t mind living with all the side effects.

Wish you good doctors if you go that route

tarhoosier profile image
tarhoosier

I know not what your treatment issues are. One of the top prostate people in the world is Karim Fizazi at Villejuif near Paris.

grandroundsinurology.com/au...

If not now then perhaps in your future.

Karmaji profile image
Karmaji in reply to tarhoosier

Thanks

I am in contact with Karim team and his colleague Dr Gravis is top ONCO in Institut Paoli Cormette in Marseille.

I am consulting Prof Cussenot in Paris more experienced in Grass root therapies.

Personally my protocols is quite simple....

Firmagon and then IMRT... excellent guys in Toulon.

My interest is mainly Metabolic and diet supplementary follow up using Off label drugs so as to make PC cells quiet....

Any suggestions...

I find sweating and hot flashes are well controlled by a bit strong exercise....

Strange I feel tired but I am not tired when active..

in reply to Karmaji

Stay active..

DrWrite profile image
DrWrite

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.

monte1111 profile image
monte1111 in reply to DrWrite

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.

tarhoosier profile image
tarhoosier

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.

Karmaji profile image
Karmaji in reply to tarhoosier

Thanks

Sometimes words mean different things

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...

cajeffrey profile image
cajeffrey

Bonjour Karmaji

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.

Bonne Chance Mon Ami

Catherine

monte1111 profile image
monte1111 in reply to cajeffrey

I love it when you speak French.

cajeffrey profile image
cajeffrey in reply to monte1111

Tu me fais rire. You should hear it with my "throaty" husky voice. :)

Catherine

GeorgesCalvez profile image
GeorgesCalvez

Hi there,

I also live in France and I was diagnosed with a T3b PSA 130 prostate cancer around two years ago.

I have since undergone a radical prostatectomy, radiation and hormone treatment and I am doing OK.

Best wishes,

Georges

Karmaji profile image
Karmaji in reply to GeorgesCalvez

can u tell which treatment centre ...Paris or some other place

GeorgesCalvez profile image
GeorgesCalvez

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.

Karmaji profile image
Karmaji

Merci

J ai 80 ans...moins grave

Je suis à Hyères...

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.

Karmaji profile image
Karmaji in reply to

Hello Lulu....a very french name

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

===========

All that Jazz ....

Bye bye life

Bye bye happiness

Hello Loneliness

I think I am gonna die

I think I am gonna die

Bye bye love

bye bye sweet caress

Hello emptiness

I feel like I could die

Bye bye your life good bye

bye bye my life good bye

Bye bye life.... Good bye....

================

Never forget art of living and art of dying....

Love of life as it is

in reply to Karmaji

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 ..

Karmaji profile image
Karmaji

Let us take the leaky ship to shallow waters....

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