whatsinaname in reply to ARIES294 years ago

"They have to make money out of you or they will not talk to you" ----Seems to me, living in Bombay, India, that at least 80% of doctors are that way, maybe more.

Patrick-Turner in reply to ARIES294 years ago

Hi ARIES29,

Depending on where you go to talk to a doctor, their attitude to money varies, and doctors who operate as private enterprise companies are not willing to give you one second of their time for free to anyone. They tend to prefer $250 per hour or more.

Such doctors are not charity organisations willing to give their time to cash strapped Pca sufferers.

But doctors employed in Australia's public hospital system are paid a wage by a Government owned entity, so they get paid each day regardless of whether anyone comes to talk to them or not. Usually the pay rate per hour is lower than doctors who are also businessmen, and the average patient is poor, but many doctors don't mind the ease of such an existence without having to worry about $$$$$ every day. The medical skill differences between private or public doctors is possibly nil. But because ppl have to pay private doctors more than public doctors, more try to get medical treatment from public so the queues for medical services is a lot larger with longer waiting times and delays compared to ppl who can afford the private doctors and who pay more for the same services.

I heard that it will always be impossible for our Oz Medicare system to be adopted in USA for one horrible reason, the doctors will never allow their services to be any cheaper so the biggest expense of a USA Medicare would be doctor's earnings, and these are upheld by active lobbying and supporting of Democrat or Republican pollytishans who are always having to seek funds to support being re-elected.

I had chemo when that was the standard next step after Zytiga failed. There as nothing else, except Lu177, but I had to fail chemo before being able to buy Lu177. Lu177 has no Phase 3 approval, and so a vast number of men cannot demand it before the normal procession of treatments have failed.

But my oncologist ( in public system who costs me 0.0$ ) said chemo was unlikely to work on bone mets, and maybe not on soft tissue mets either, and this relates to the fact of the early description of my Pca cells being aggressive. I have slow growing Pca, but none the less aggressive, so maybe others get a huge benefit from chemo, I probably never could, and I surely did not after 4 shots when Psa had quadrupled. So my dear oncologist didn't hesitate to refer me to Lu177, as he said he would if chemo didn't work.

So, there not very men getting Lu177 in Oz, and the doctor in charge of main provider of Lu177 here, Theranostics said he'd done 700 patients in 3 years since he began this business. That averages about 4.7 patients a week, and when I went to Lu177 administering hospitals in Sydney, there were a maximum of 4 patients, but on first 2 sessions there were 2. I know TA's home site is in Perth, and maybe they get 4 a week, and as popularity of Lu177 increases and more acceptance of it, there is a bigger demand. Lu177 therapy is nuclide therapy, and injection of one of many radioactive things that kills cancer cells, and the theranostic principle behind its use involves a ligand chemical which makes nuclide therapy targeted to cancer cells, and maybe far safer than other forms of radiation such as EBRT which uses high energy X-rays and which is only target in its direction, like a beam of light from a torch, so that all things in that path of the beam cop a dose of DNA damaging radiation. I suspect the problem I am having with my right hip is due to effects of EBRT that was used on me as primary treatment with beams directed to PG in 4 directions, up and down vertically, east and west horizontally, with the later beams going through my hip joints which did my joint cartilages no good at all, so said one doc.

I've seen chemo seem to work very well for some men with Pca, but often not for long, and after 3 infusions, Psa may have fallen from 40 to 2.0, it then stays level, and after 10 chemos its back up to 40 with a large number of long lasting side effects. Then what?

One guy then began getting Pca lesions in his liver that didn't generate PsMa avidity, so Lu177 would be useless, so docs tried DNA analysis and PARP inhibitors and Psa shot up from 40 to 432 so fast that it outpaced any further thing they tried. and so he died. He had about The Worst form of Pca that all the things I tried didn't help him last longer than 3 years after diagnosis.

So there is no predictable outcome once a man gets to chemo time.

One man here was so frightened by Pca after diagnosis and so aware that an RP would probably fail like it so often does that he begged a private surgeon to do a far more radical operation where PG is removed, penile urethra cut short at possible away from PG, bladder is removed, and both ureters from kidneys are brought together to a stoma hole in lower left abdomen for insertion of a plastic connector that allows a urine collection bag to be fitted.

Ten years later he is alive and well because it seems there was no Pca spread to other places in his body, and he was lucky that was not the case, because 12 years ago there was nothing to detect small mets, and even now a man can have hundreds of microscopic mets for years before they grow big enough to be seen by any available scan or search by a microscope.

This man with a pee bag joins the other 45,000 ppl in Oz with pee bags, or maybe solids bags, or both, and they never have to get up 5 times a night to pee, and can pee a liter at a time, so maybe 3 times day, while I pee 10 times a day. Of course this man has complete ED, but had he wanted, he could have had an penile prosthetic inserted that allows

erections or none, and because he has full amount of testosterone he'd respond to erotic stimulation and be able to have pleasure.

His wife is a very understanding woman. None of the side effects of ADT have occurred.

The problem with RP is that the surgery site is not very far away from where the Pca has occurred in PG, hence some Pca cells remain after surgery. of some healthy PG cells remain, and in time, they develop Pca, and this may explain how some men see Psa fall from say 7 before RP to less than 0.01 afterwards, but then 2 years alter, Psa is 0.02, then 3 months later its 0.03, and so on, and that may lead to a 10 year battle costing the man or Medicare maybe $150,000.

How many men vote to have bladder out with PG and 100% ED? almost none, its very expensive, but it works well with men having low gleason scores.

One sister died of Oa, other got a Brca lump in one breast. She went straight to double mastectomy. She escaped the progression of Brca and is OK now 10 years later but had a major side effect of ruining her desire for any man, which had been high before her op.

But she and I have learnt that being asexual and without a partner is not life threatening. We are both not needy, and fairly robust, and we know that having a partner can bring a larger list of problems than being alone. Anyway, its been easy for me to stay partner free when I asked myself how much better off would I be, or a prospective partner be or both of us be if we lived together? If I could not see a yes to such simple questions, then just be friends, which of course is often impossible because so many possible partners want vibrant intimacy, and their minds have not moved on from being 30. My mind has.

For years I loved cycling around this town, and a 2 hour ride was maybe more rewarding than being 2 hours with any lady. Not one lady I ever met could spend 2 hours on a bike ride with me, not even 25 minutes.

One who did last 25mins had rich parents who thought I was a bum, too poor for their precious daughter, so that relationship ended fast. So if not one thing its another...….

So, I do know life alone is quite good, and is as good as being in a happy relationship, which I have seen as being hugely rare amoung the older couples I have seen around.

Lunch was nice today. To reduce hip pains I am taking 1 x Panadol Extra with small amount of codeine in morning and night, and one Voltaren 50 with diclofenac. I'll probably have to up the dose as time goes by.

it will be at least 3 months until any surgery could be done on hip, if it is at all possible due to previous radiation.

Take care everyone,

Patrick Turner.