Re: Scans

[Guest guest]

Does anyone know the effects of ultrasounds? I had several on 2 of my

3 immune challenged children. Jerry?

Lorna

[Guest guest]

Marietta,

You don't give any particulars about the progress of your CLL/SLL, but this

doesn't sound right! What's the rational for 8 CT scans and more scheduled?

How on earth is that going to make you keep " on top of things? " How often

have you been getting the CT scans and what do they do for you?

I was dx 12/5 and my onc insisted on a CT scan " for baseline. " Dr. Hamlin

at the ACOR list pointed out that the CT is not necessary for staging. I

refused the CT scan. When my onc kept hammering on the issue, I agreed to

do a MRI, but not a CT scan. There was a lot of pressure. They kept

telling me that a CT scan is what I really need. I stood my ground and

finally had an MRI which produced a picture as good as a CT scan would have.

End of the story - for now.

You need to read up on the issue and question you doctors closely. They

aren't God and some of them may know less about CLL than their patients.

They may also not know about the harmful effects of the CT scans - or don't

care. A CT scan exposes you to many times the radiation involved in a chest

X-ray which itself is dangerous if done too often. The iodine solution they

make you drink before each CT scan harms the kidneys. Some doctors never

heard of Hippocrates' " do no harm. " Some doctors order unnecessary tests

because they have a financial stake in them. There is no lack of caring,

knowledgeable doctors out there, but make sure that yours is one of them.

Andy Gach 76, dx 12/06, asymptomatic, unmutated

Re: CIG notification of Oct. 21 Lymphoma Conf. - Judy

> Date: Tue, 5 Sep 2006 17:59:19 EDT

>

> , will you wear a red carnation so I know it's you? LOL Hope to meet

> you

> there, Judy

>

>

>

>

>

>

>

[Guest guest]

Thanks so much, . Just a nother question - do you think it's reasonalbe for me then to say to my oncologist that we should only do scans if my other lymphs seem to be growing? thanks!

Marietta Brill cell: 718-938-8712

From: jb50192@...Reply- To: Subject: Re: ScansDate: Thu, 7 Sep 2006 11:42:04 EDT

Let me add my two cents -

There is no doubt, and full agreement, that CT scans should be minimized.

Other side of the coin, doctors and radiologists will tell you that they see the lymph system better with a CT than with an MRI.

So the truth lies somewhere in the middle.

I don't agree that no scan is required for staging, whichever scan it is. How can you tell what the lymph system looks like inside without that? And one should have a baseline.

I think the trick is to take that one CT at staging, and then MINIMIZE the number of rechecks. It is not necessary to look at your nodes all the time to see how you're progressing. There is plenty of other evidence for that. Besides, if you have nodes inside your body, the likelihood is that you also have palpable ones (armpit, groin, etc.) and the doctor can check those at staging. Then, he can tell your progress by physically feeling those, without another scan.

If your palpable nodes are stable, it is not likely that your internal ones are growing like crazy. Therefore, no need for another scan.

[Guest guest]

Andy,

You are a perfect example of how you have to stand your ground as a patient and protect yourself. There just isn't any significant difference between the size of lymph nodes or tumors that can't be measured either by Ultra Sound or MRI Scan. The only other reason for a CT Scan is simply convenience for the doctor, insurance co and the office staff and perhaps timing. However there is no hurry in 99.9% of all cases that would require an immediate CT Scan. If a person were that sick, then of course you would take a CT-Scan, but not until.

There is nothing more definitive than an MRI scan period, end of story! The only difference is that it's a still set of thousands of pictures whereas a CT Scan is a moving picture. Again, simply convenience and easy to view. Again, at what cost? The patient is the one paying.........in every way you can imagine. The doctors stand behind the radiation screen and go home at night to dinner free from any harm that comes our way. We are the recipients, we also have the final word as to what we will or will not do. Bottom line is that we want the docs and the techs to work a little or even a lot harder to read our results, thereby protecting us from possible future harm.

We must all be like Andy and stand up for ourselves.

Good luck to all, Kurt

Original message from Gach unclewolf@...

Marietta,You don't give any particulars about the progress of your CLL/SLL, but this doesn't sound right! What's the rational for 8 CT scans and more scheduled? How on earth is that going to make you keep "on top of things?" How often have you been getting the CT scans and what do they do for you?

[Guest guest]

Thanks for your kind words, Kurt. We're of one mind on this. People who blindly follow doctor's orders shrink their responsibility for their own health.

Ideally, physician and patient should form a team where the physician is the advisor and the patient is the decider. Of course, one needs to do his or her homework for this to work. Being a competent patient is a job no less demanding than being a competent physician..

Andy

-- Re: Scans

Andy,

You are a perfect example of how you have to stand your ground as a patient and protect yourself. There just isn't any significant difference between the size of lymph nodes or tumors that can't be measured either by Ultra Sound or MRI Scan. The only other reason for a CT Scan is simply convenience for the doctor, insurance co and the office staff and perhaps timing. However there is no hurry in 99.9% of all cases that would require an immediate CT Scan. If a person were that sick, then of course you would take a CT-Scan, but not until.

There is nothing more definitive than an MRI scan period, end of story! The only difference is that it's a still set of thousands of pictures whereas a CT Scan is a moving picture. Again, simply convenience and easy to view. Again, at what cost? The patient is the one paying.........in every way you can imagine. The doctors stand behind the radiation screen and go home at night to dinner free from any harm that comes our way. We are the recipients, we also have the final word as to what we will or will not do. Bottom line is that we want the docs and the techs to work a little or even a lot harder to read our results, thereby protecting us from possible future harm.

We must all be like Andy and stand up for ourselves.

Good luck to all, Kurt

Original message from Gach unclewolf@...

Marietta,You don't give any particulars about the progress of your CLL/SLL, but this doesn't sound right! What's the rational for 8 CT scans and more scheduled? How on earth is that going to make you keep "on top of things?" How often have you been getting the CT scans and what do they do for you?