RE: Peanuts, was - do we ask for radiation.

[Guest guest]

You also need to keep in mind that many countries have FREE health care, in the US we do not. What is your life worth to you? Is it worth shelling out 5k that you may not be able to pay back for many years? Is it worth not having to endure substandard care? Is it worth having your catheter removed in 6 days rather than getting an infection while it is in longer? Yes, we are able to write a check and pay off the bills that our insurance company did not pay. But, even if we were not we would have found a way to get this surgery done properly and with the best facility and care that we thought we could get. We would have traveled to the moon if the care were better. We would have found a way to pay for things we could not afford. For us it was much better to have the damn thing removed then to deal with anything else. If you do your research there are many doctors and hospitals that have pro bono work for robotic

surgery. The man in the hospital room next to my husband has his surgery done for free. You need to do your research, there are options out there if you find the right facility. By "settling" for lesser care you may risk years of follow up and additional treatments. Ask doctors if they do pro bono....let them know your situation if you cannot afford the surgery. All they can do is say no...so move on to the next. Never say never.darrylmit@... wrote: --- Ann Meili <AnnInBolivia> wrote: Whilewe will have to pay about $5000 that was peanutsbecause of the superior care he got in Houston.Not to berate Ann, but as a note of support for thoseon this list on low or no incomes. To an elephant, apeanut is a little thing....to an ant, it is a yearsworth of food. Unfortunately, there are many men inthe States, under age 62, without health insurance orhave health insurance and simply do not have the wearwith all (or is that, where with all) to finance carethey deserve, even with free air flights, etc. Certainly, there are many who read this list fromlesser developed countries or lesser developedneighborhoods/parishes of our "developed" countries,while sitting in internet cafes with dicey electricityand for whom many medical interventions are often outof reach. Again, not to berate Ann, but, just toreverently

remind ourselves that not all have thecapacities that many of us take for granted. Cheers,Darryl__________________________________________________

[Guest guest]

Point well taken Darryl. Mick darrylmit@... wrote: --- Ann Meili <AnnInBolivia> wrote: While we will have to pay about $5000 that was peanuts because of the superior care he got in Houston. Not to berate Ann, but as a note of support for those on this list on low or no incomes. To an elephant, a peanut is a little thing....to an ant, it is a years worth of food. Unfortunately, there are many men in the States, under age 62, without health insurance or have health insurance and simply do not have the wear with all (or is that, where with all) to finance care they deserve, even with free air flights, etc. Certainly, there are many who read this list from lesser developed countries or lesser developed neighborhoods/parishes of our "developed" countries, while sitting in internet cafes with dicey electricity and for whom many medical interventions are often out of reach. Again, not to berate Ann, but, just to reverently remind ourselves that not all have the capacities that many of us take for granted. Cheers, Darryl __________________________________________________

[Guest guest]

No matter how many ways you say it or slice it, IMO the vast majority of men diagnosed with PCa are not able to afford the so-called "artists" of the trade, period. Yes, there are some doing pro-bono work, I assume. Finding one may be another thing altogether. I mean, let's be realistic here

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Yahoo, in it's infinite wisdom, cut my posting into two pieces. Please scroll down to read the entirety. Go Yahoo! Duh...

[Guest guest]

I guess pro bono work is something you have to believe exists. You are right, maybe people have lost thier insurance due to downsizing...lets see..we lost out retirment plan thanks to bankruptcy of the company my husband works for. Gee, lets see again, will he even be able to go back to work? Cancer in his industry puts a big black X on his employment record. My thing is..if you believe you can get it done...then do it. After all of this I have limited sympathy for folks who don't even try to look for pro bono or check with the airlines or Angel Flight about free air transportation. There are hotels that also provide free accommodations after surgery....we got it in Houston. You have to ask, if you don't you will never know. If you are a naysayer, then so be it. If you want to fight this thing fight it with all you have, with every ounce of energy...but the "oh poor me" just

doesn't cut it when there are indeed other avenues to explore. Kimble wrote: Yahoo, in it's infinite wisdom, cut my posting into two pieces. Please scroll down to read the entirety. Go Yahoo! Duh...

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Amen…

Cam Bishop

Re:

Peanuts, was - do we ask for radiation.

No

matter how many ways you say it or slice it, IMO the vast majority of men

diagnosed with PCa are not able to afford the so-called " artists " of

the trade, period. Yes, there are some doing pro-bono work, I

assume. Finding one may be another thing altogether. I mean, let's

be realistic here

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feedback on the new changes to Groups

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[Guest guest]

IIRC, there are two rules on this list and one of them is being bent pretty far. If I want political discussions, I know where to go to find them and Prostrate Cancer Support isn't it.

Might be time for a few people to take a deep breath or two.

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Ann MeiliSent: Friday, July 07, 2006 5:20 PMTo: ProstateCancerSupport Subject: Re: Peanuts, was - do we ask for radiation.

I guess pro bono work is something you have to believe exists.

You are right, maybe people have lost thier insurance due to downsizing...lets see..we lost out retirment plan thanks to bankruptcy of the company my husband works for. Gee, lets see again, will he even be able to go back to work? Cancer in his industry puts a big black X on his employment record. My thing is..if you believe you can get it done...then do it. After all of this I have limited sympathy for folks who don't even try to look for pro bono or check with the airlines or Angel Flight about free air transportation. There are hotels that also provide free accommodations after surgery....we got it in Houston. You have to ask, if you don't you will never know. If you are a naysayer, then so be it. If you want to fight this thing fight it with all you have, with every ounce of energy...but the "oh poor me" just doesn't cut it when there are indeed other avenues to explore. Kimble wrote:

Yahoo, in it's infinite wisdom, cut my posting into two pieces. Please scroll down to read the entirety. Go Yahoo! Duh...

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

I am not the one who started the political discussion. So please do not hang it on me. I am trying to PUSH that there are other options, there are avenues that can be explored for pro bono surgery, free flights, free hotels, discounted air fares and payment plans. Prostate cancer patients should not have to "settle" for substandard care. No cancer patient should have to settle. It is unfortunate when someone insurance limits them to only a specific hospital. What I am TRYING to get across is that don't give up, explore absolutely everything. If you don't like any airline giving free flights, then look into the people who donate their airline miles for cancer patients. I had a drug test today for an airline job. When I was in the office for the drug test there were brochures and posters all over the main office about ANGEL FLIGHTS... these pilots fly people for FREE, they pay for the

fuel, they use their own planes. They give their time so that someone can get the care they need. Lots of people, agencies and companies want to help. You need to do you research if you cannot afford the surgery, travel or accommodations. Look for it, it is certainly out there. wrote: IIRC, there are two rules on this list and one of them is being bent pretty far.

If I want political discussions, I know where to go to find them and Prostrate Cancer Support isn't it. Might be time for a few people to take a deep breath or two. From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Ann MeiliSent: Friday, July 07, 2006 5:20 PMTo:

ProstateCancerSupport Subject: Re: Peanuts, was - do we ask for radiation. I guess pro bono work is something you have to believe exists. You are right, maybe people have lost thier insurance due to downsizing...lets see..we lost out retirment plan thanks to bankruptcy of the company my husband works for. Gee, lets see again, will he even be able to go back to work? Cancer in his industry puts a big black X on his employment record. My thing is..if you believe you can get it done...then do it. After all of this I have limited sympathy for folks who don't even try to look for pro bono or check with the airlines or Angel Flight about free air transportation. There are hotels that also provide free accommodations after surgery....we got it in Houston. You have to ask, if you don't you will never know. If you

are a naysayer, then so be it. If you want to fight this thing fight it with all you have, with every ounce of energy...but the "oh poor me" just doesn't cut it when there are indeed other avenues to explore. Kimble wrote: Yahoo, in it's infinite wisdom, cut my posting into two pieces. Please scroll down to read the entirety. Go Yahoo! Duh... How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

Sneak preview the all-new Yahoo.com. It's not radically different. Just radically better.

[Guest guest]

You are right that it would be good if folks can reread their posts before they hit send.

I must say that it is difficult to come up with the perfect system. In the UK we have the National Health Sevice, but this is not perfect. Sometimes waits for non urgent operations etc are very long. I do cringe and worry about cancer sufferers in the States who can't afford the payments., especially for regular drugs. In the UK we wouldn't have that worry.

I think it has been useful to air these concerns, but it unless members have some answers perhaps we ought to start to run this thread down

B

RE: Peanuts, was - do we ask for radiation.

IIRC, there are two rules on this list and one of them is being bent pretty far. If I want political discussions, I know where to go to find them and Prostrate Cancer Support isn't it.

Might be time for a few people to take a deep breath or two.

..

[Guest guest]

Thanks .

I guess there is no perfect system.

In Canada we kind of sit in the middle. We have a pretty good basic medical system where you generally don't have to wait too long for anything, but there are some pretty big holes in it, particularly around costs for prescription medication.

OTOH, its pretty much a single tier system where you can't generally pay extra to get better services. If you want to do that you go to the US and pay the going rate. ly, India looks pretty good for some types of treatment.

We can choose to go to a different doctor, or seek treatment in a different region. I've done that personally by going to a larger centre for advice and likely for surgery later this year.

I've lived and worked for many years in the UK, much of the rest of Europe, Canada and the US. They all have their good and bad points.

Personally, I wish they'd plow some more resources into PCA research so we had some better defined and researched options. But that's just my opinion... <grin>

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of MetcalfSent: Friday, July 07, 2006 7:28 PMTo: ProstateCancerSupport Subject: Re: Peanuts, was - do we ask for radiation.

You are right that it would be good if folks can reread their posts before they hit send.

I must say that it is difficult to come up with the perfect system. In the UK we have the National Health Sevice, but this is not perfect. Sometimes waits for non urgent operations etc are very long. I do cringe and worry about cancer sufferers in the States who can't afford the payments., especially for regular drugs. In the UK we wouldn't have that worry.

I think it has been useful to air these concerns, but it unless members have some answers perhaps we ought to start to run this thread down

B

RE: Peanuts, was - do we ask for radiation.

IIRC, there are two rules on this list and one of them is being bent pretty far. If I want political discussions, I know where to go to find them and Prostrate Cancer Support isn't it.

Might be time for a few people to take a deep breath or two.

..

[Guest guest]

>there were brochures and posters all over the main office about ANGEL

>FLIGHTS... these pilots fly people for FREE, they pay for the fuel, they use

>their own planes. They give their time so that someone can get the care they

>need.

Actually, Anne, no. Corporations pay for thei executives' planes and fuel. We

consumers pay for the products that pay the corporations. ANd I suppose the

corporations charge the flights for patients as chirable donations and take a

tax deducation.

Has anyone ever taken one of these Corporate Angel flights?

I have links to these services on my site. For a selction see bottom of this

page:

http://www.psa-rising.com/caplinks/livingwell.htm

Yet I feel dubious about them. Maybe the system has improved but in the mid

1990s my husband tried more than once to coordinate such a flight with his

necessary trips from Midwest to New York where he was enrolled in a clinical

trial. We were going broke fast keeping him in treatments. Even worse, flying

on the regular airlines, the crowds, the delays, the cancellations, the cramped

seating was fast becoming a nightmare of hassles for a man dealing with things

edema and on drugs that made him vulnerable to infection and a tad paranoid.

After a lot of effort on his part to get somewhere with Corporate Angel

Network, he gave up on them. The flights are at the convenience of the flight

donor. Pick up and drop off points, ditto. You might luck out but Norman got

nowhere. I doubt he was the only one. The person needing a flight is probably

doesn't have the stamina to deal with all the fooling around. Meanwhile

advertising this service makes for great publicity for donors, people who own

corporate jets. They feel they're good people. As they fly above the crowds

they don't have to eat their hearts out over the 46 million US citizens without

health insurance, and such.

Not to be ungrateful - but let's add, " free " hotels. Not always free. We did

stay in free overnight lodging in Chicago associated with Northwestern

Hospital, wonderful. And once stayed overnight in student housing at U of

Chicago, also fine (spartan but fine). At MSKCC you can try to book a room in

the Leona Helmsley Medical Tower, close to the hospital, at a cut rate - still

pretty darned high. We ended up moving to NYC and renting a small working class

apartment so that Norman could remain in clinical trials. We didn't regret it,

but cancer impoverished us, no question, even though Norman was lucking having

relatively good health insurance though his workplace

best

Jacquie

http//psa-rising.com

[Guest guest]

Amen, . Thank you for posting.

RE: Peanuts, was - do we ask for radiation.

>there were brochures and posters all over the main office about ANGEL>FLIGHTS... these pilots fly people for FREE, they pay for the fuel, they use>their own planes. They give their time so that someone can get the care they>need. Actually, Anne, no. Corporations pay for thei executives' planes and fuel. We consumers pay for the products that pay the corporations. ANd I suppose the corporations charge the flights for patients as chirable donations and take a tax deducation.Has anyone ever taken one of these Corporate Angel flights?I have links to these services on my site. For a selction see bottom of this page:http://www.psa-rising.com/caplinks/livingwell.htmYet I feel dubious about them. Maybe the system has improved but in the mid 1990s my husband tried more than once to coordinate such a flight with his necessary trips from Midwest to New York where he was enrolled in a clinical trial. We were going broke fast keeping him in treatments. Even worse, flying on the regular airlines, the crowds, the delays, the cancellations, the cramped seating was fast becoming a nightmare of hassles for a man dealing with things edema and on drugs that made him vulnerable to infection and a tad paranoid. After a lot of effort on his part to get somewhere with Corporate Angel Network, he gave up on them. The flights are at the convenience of the flight donor. Pick up and drop off points, ditto. You might luck out but Norman got nowhere. I doubt he was the only one. The person needing a flight is probably doesn't have the stamina to deal with all the fooling around. Meanwhile advertising this service makes for great publicity for donors, people who own corporate jets. They feel they're good people. As they fly above the crowds they don't have to eat their hearts out over the 46 million US citizens without health insurance, and such.Not to be ungrateful - but let's add, "free" hotels. Not always free. We did stay in free overnight lodging in Chicago associated with Northwestern Hospital, wonderful. And once stayed overnight in student housing at U of Chicago, also fine (spartan but fine). At MSKCC you can try to book a room in the Leona Helmsley Medical Tower, close to the hospital, at a cut rate - still pretty darned high. We ended up moving to NYC and renting a small working class apartment so that Norman could remain in clinical trials. We didn't regret it, but cancer impoverished us, no question, even though Norman was lucking having relatively good health insurance though his workplacebestJacquiehttp//psa-rising.com

[Guest guest]

My apologies for sending out an unspell-checked missive. I had a full week and

didn't realize how tired my writing was. Still, every word is true :-). I

cvonfess to sharing Norman's bias against " blame the patient. " Most cancer

patients take more than their share of responsibility in the effort to survive.

best

Jacquie

>there were brochures and posters all over the main office about ANGEL

>FLIGHTS... these pilots fly people for FREE, they pay for the fuel, they use

>their own planes. They give their time so that someone can get the care they

>need.

Actually, Ann, no. Corporations pay for their executives' planes and fuel. We

consumers pay for the products that pay the corporations. And I suppose the

corporations charge the flights as charitable donations and take a

tax deducation.

Has anyone ever taken one of these Corporate Angel flights? I have links to

these services on my site. For a selection see bottom of this page:

http://www.psa-ris ing.com/caplinks/livingwell.htm

Yet I feel dubious about them. Maybe the system has improved but in the mid

1990s my husband tried more than once to coordinate such a flight with his

necessary trips from Midwest to New York where he was enrolled in a clinical

trial. We were going broke fast keeping him in treatments. Even worse, flying

on the regular airlines, the crowds, the delays, the cancellations, the

cramped seating was fast becoming a nightmare of hassles for a man dealing

with things like edema and on drugs that made him vulnerable to infection and a

tad paranoid.

After a lot of effort on his part to get somewhere with Corporate Angel

Network, he gave up on them. The flights are at the convenience of the flight

donor. Pick up and drop off points, ditto. You might luck out but Norman got

nowhere. I doubt he was the only one. The person needing a flight probably

doesn't have the stamina to deal with all the fooling around. Meanwhile

advertising this service makes for great publicity for donors, people who own

corporate jets. They feel they're good people. As they fly above the crowds

they don't have to eat their hearts out over the 46 million US citizens without

health insurance, and such.

Not to be ungrateful - but let's add, " free " hotels. Not always free. We did

stay in free overnight lodging in Chicago associated with Northwestern

Hospital, wonderful. And once stayed overnight in student housing at U of

Chicago, also fine (spartan but fine). At MSKCC you can try to book a room in

the Leona Helmsley Medical Tower, close to the hospital, at a cut rate - still

pretty darned high. We ended up moving to NYC and renting a small working class

apartment so that Norman could remain in clinical trials. We didn't regret it,

but cancer impoverished us, no question, even though Norman was lucky in having

relatively good health insurance though his workplace.

best

Jacquie

http//psa-rising.com

[Guest guest]

Ann,

FYI, I have nothing special against airlines. My husband and I flew United and

US Air out of Indy, occasionally Delta. Sometimes the service was OK, sometimes

poor (for everyone, healthy and sick). Either US Air or United was one of the

most hated airlines in the region, forget which.

For information on Corporate Angel Network (that is its name) go here (linked

from a page at PSA rising:

http://www.corpangelnetwork.org/

" using the empty seats on corporate jets. "

" generosity of 530 ... corporations. "

Angel Flight America Network and Angel Flight Samaritans are excellent

organizations. I do know of one family in Maine who benefited from one flight

to take the husband, who has advanced prostate cancer, to Dana Farber one time

for his chemotherapy.

However, far as I know Angel flights are not designed to have any significant

impact on men like those you, Ann, are addressing - men who lack means to fly

to distant hospitals for first or second diagnostic opinions and for primary

treatment. One stipulation of Angel Flight is:

" Have received a medical diagnosis that requires you to be treated at a

hospital specializing in that disease or ailment. "

I doubt any doctor would say, for example, that your husband's diagnosis

required him to be treated in the specific hospital he chose.

I'm not bitter I'm realistic . I've been an activist for 15 years on behalf of

prostate cancer patients, as was my Norman, my husband, an activist from 1991

until his death in 2002. If your husband ever needs Taxol, Carboplat in,

Taxotere, or Erbitux you can thank men like my husband for taking those and

other drugs as guinea pigs before FDA approval.

You and your husband, in doing whatever it takes to get him well, are doing

what my husband and I did in 1991 after his diagnosis. He was dx'd in

Indianapolis and we flew to Mayo, Chicago, and subsequently to MSKCC in NYC. I

make a point of encouraging men to get the best treatment possible. But I can

see a lot of room for more organized efforts to extend access to quality

medical care.

As a related aside - Norman's father spent the second half of his career as a

radiologi st serving women with breast cancer. He ran the first clinical trial

for mammograp hy in the 1960s and opened and ran the first free breast cancer

diagnosis clinic in the world in Greenwich Village NY (the Guttman Institute

, since taken over by MSKCC). Among other honors my father in law and his

coworker, statisti cian Sam Shapiro, were awarded a General Motors Cancer

Research Foundatio n Kettering Prize. " In addition to his accomplis hments as

a physician , he possessed qualitie s that set him apart as a humanitar ian.

He cared little about money and much about people. He was quick to lighten up a

situation with his wonderful sense of humor. He was dignified and humble

about his accomplishment... "

http://radiology.rsnajnls.org/cgi/content/full/213/2/621

Norman's cousin Tommy Strax is another outstandi ng excaplme of how to help

without preaching to others. Born with cerebral palsy, Tommy Strax became a

doctor and is currently Professor & Chairman, Department of Rehabilit ation

Medicine at the UMDNJ-Rob ert Wood Medical School, and Medical Director

of the JFK Rehabilitation Institute in Edison, NJ.

See:

http://tinyurl.com/3sw6a

http://umdnj.edu/umcweb/marketing_and_communications/publications/umdnj_magazine

/spring2004/5.htm

http://www.westernu.edu/xp/edu/cdihp/tstrax.xml

Ann, you are preaching to the choir as far as telling me not to be bitter. In

1997 I created a website, PSA Rising, to provide prostate cancer patients and

partners with news, information and support and to put pressure on the

professions for better diagnosis and treatments. I have worked on PSA Rising

virtually every day for the past 9 years and help thousands of people a day at

no cost to them.

I would suggest that you, Ann, have some terrific qualities for leadership in

the field of prostate cancer awareness. Especially, you care about QUALITY.

Please don't try to persuade people set aside realistic and just demands for

fair access to quality medicine for all.

best

Jacquie

http://psa-rising.com