More Scan Opinions

September 12, 2002

I have been reading all the PET Scan information and have decided to

put in my two cents. Here goes: I would never tell anyone not to

have the scan done, not to consider having it done and I would never

discourage anyone from looking into having it done. Just because

someone else chose to have a PET scan and another person made the

decision not too should not be considered. Pam is on the right track

in sharing information about the tests and what they might be able to

do for us, Deborah is on the right track in sharing information about

the tests and what they might be able to do for us. Informed

decisions are always the best decisions. The cost of the test,

whether your insurance will pay, the length of the test, how hard the

scan table is, how exhausted you are, how frustrated you are because

of lack of dx., how far you would need to travel, should be the

personal things you consider and should be questions you ask of your

physician and of yourself when making an informed decision.

New technology, new uses of old technology and future technology will

cause us to make decisions today quite different than those made by

persons in the past, even the recent past. To say that someone two

years ago decided against a technology because it was not definitive

or proven is a foolish reason for you to not consider it today. To

say that it is still not definitive or proven is also a foolish

reason not to have it done. I only hope that by having a PET Scan at

North Shore Hospital three years ago, for an MSA diagnosis, my

husband helped the doctors that are reading scans today. When people

tell you there is no hope, there is no cure, there is no definitive

dx until death then I believe we must all embrace the latest

technology in hopes of not only helping ourselves but of helping

others years down the road. A pioneer leads the way for others and by

doing so may also help himself....we need leaders. We need people to

step forward if they can and be pioneers of new technology. I am a

breast cancer survivor because some brave women years ago agreed to

procedures that were not proven and not definitive. So if you can

tolerate, afford and want a test done, go for it. If you can not

afford it, fight to make it happen. Maybe two years from now it will

be a proven test, you will still be alive and you will benefit from

your own past scan. And maybe you won't be here and maybe it won't be

proven or definitive but what do you have to lose? If you are too

tired, in too much pain, can't afford it or simply don't want to do

it than cheer on those that do, don't discourage them.

Jan

September 13, 2002

Dear Jan.

AMEN. You have expressed it perfectly. The PET scans have been

available for a long time, and each patient should make the decision as to

its value for himself with the help of his physician. Our Neurologist

discussed it with us years ago, and I attended a very informative workshop

showing what they can do. We decided that we didn't need it because the

treatment we were doing was working very well. However, Ken's SMA diagnosis

was not confirmed on autopsy, and I sometimes wish we had followed through

with the PET scan. It would have made no real difference in the treatment Ken

received, however. What has concerned me in this discussion here is how few

of the people have been told about this by their physicians. Our doctor felt

it was her obligation to let us know of all options although she did not seem

to think it would be very helpful for Ken. As I said earlier, I think it is

totally irresponsible for a doctor to perform surgery without suggesting a

PET scan first.

Barbara

September 13, 2002

Thanks Jan, these are very wise words.