CT Scans...the benefit???

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Diana

New member
Here is a question for those who have CF but also for the parents of those with CF. How do you feel about the progression to now have annual CT scans performed? As a mother I am quite worried about the long term effects of these procedures and I am seriously contemplating (unless I can locate better information demonstating the benefits of CT scans for Cfers) not allowing my daughters to undergo a CT scan until they are much older.

In the case of both of my daughters they are both very healthy. Granted Elisha is only 12 weeks old but Mikayla is almost 5 and she has not stayed in hospital for over 18 months. I cannot see where the CT scans have some form of preventative nature. Does anyone else share these concerns?

Here is an article of interest I received today:
<a target=new class=ftalternatingbarlinklarge href="http://today.reuters.co.uk/news/newsArticle.aspx?type=healthNews&storyID=2006-01-27T171839Z_01_COL762345_RTRIDST_0_HEALTH-CYSTIC-FIBROSIS-DC.XML&archived=False">CT scan risks in cystic fibrosis likely to rise</a>

I would luv to know others opinions on this subject.
 
D

Diana

New member
Here is a question for those who have CF but also for the parents of those with CF. How do you feel about the progression to now have annual CT scans performed? As a mother I am quite worried about the long term effects of these procedures and I am seriously contemplating (unless I can locate better information demonstating the benefits of CT scans for Cfers) not allowing my daughters to undergo a CT scan until they are much older.

In the case of both of my daughters they are both very healthy. Granted Elisha is only 12 weeks old but Mikayla is almost 5 and she has not stayed in hospital for over 18 months. I cannot see where the CT scans have some form of preventative nature. Does anyone else share these concerns?

Here is an article of interest I received today:
<a target=new class=ftalternatingbarlinklarge href="http://today.reuters.co.uk/news/newsArticle.aspx?type=healthNews&storyID=2006-01-27T171839Z_01_COL762345_RTRIDST_0_HEALTH-CYSTIC-FIBROSIS-DC.XML&archived=False">CT scan risks in cystic fibrosis likely to rise</a>

I would luv to know others opinions on this subject.
 
J

JazzysMom

New member
I dont see the need for a ct on a regular basis unless your health is in ??? or a problem is difficult to treat or dx. I already wonder about the number of chest xrays & other xrays performed in the 30 years since my dx. I dont dwell on it, but it makes U wonder!
 
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JazzysMom

New member
I dont see the need for a ct on a regular basis unless your health is in ??? or a problem is difficult to treat or dx. I already wonder about the number of chest xrays & other xrays performed in the 30 years since my dx. I dont dwell on it, but it makes U wonder!
 
A

anonymous

New member
How often are doctors having kids do CT Scans these days?? I'm in my 30's and have only had one. How about other adults here, how often are you getting chest CT Scans?
 
A

anonymous

New member
How often are doctors having kids do CT Scans these days?? I'm in my 30's and have only had one. How about other adults here, how often are you getting chest CT Scans?
 
2

2005CFmom

Super Moderator
I don't see the benefit either. When they were in the process of diagnosing my daughter they ordered many test, including a CT scan and sweat test. Well, she was diagnosed with CF before the CT was preformed. In fact, we canceled the CT so we could meet with the CF specialist, so I asked him about rescheduling the CF scan. He said there was no need. Yes, the CT scan will show better what damage has occured. But the bottom line was that they already know what is happening in the lungs, and that there is some damage. If they found out through the CT scan that there was more/less damage than they had assumed it would not make a difference. The treatment would be the same no matter what the CT showed. He said that they only use CT when things don't match up (like having low PFT's and not seeing any factors that would cause them to be low). I hope that makes sense.
 
2

2005CFmom

Super Moderator
I don't see the benefit either. When they were in the process of diagnosing my daughter they ordered many test, including a CT scan and sweat test. Well, she was diagnosed with CF before the CT was preformed. In fact, we canceled the CT so we could meet with the CF specialist, so I asked him about rescheduling the CF scan. He said there was no need. Yes, the CT scan will show better what damage has occured. But the bottom line was that they already know what is happening in the lungs, and that there is some damage. If they found out through the CT scan that there was more/less damage than they had assumed it would not make a difference. The treatment would be the same no matter what the CT showed. He said that they only use CT when things don't match up (like having low PFT's and not seeing any factors that would cause them to be low). I hope that makes sense.
 
D

Diana

New member
Maybe it is a trend starting in Australia. Our CF doctor made the passing comment that a CT scan would be done at the same time as Elisha's bronch on Feb 17. Either way I think I am going to have to speak with him and request further information but I don't see any reason at this point to allow it.

Thanks everyone.
 
D

Diana

New member
Maybe it is a trend starting in Australia. Our CF doctor made the passing comment that a CT scan would be done at the same time as Elisha's bronch on Feb 17. Either way I think I am going to have to speak with him and request further information but I don't see any reason at this point to allow it.

Thanks everyone.
 
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IG

Guest
...
I've had a few CT scans. Usually if a CT scan is done before a bronch that's because they have a clearer idea of what is in there, what places are obstructed, etc which makes going down there with the cam easier. It's probably in conjunction with the bronch. If it's not it's still the same concept.. Gives you a clearer picture of what's mucked up down there. Now I wouldn't suggest having one every 6 months or every year... but I have had a few and yet I don't glow in the dark. Yet.

Also concerning the article, I would just bipass it. Honestly what made you healthy the day before yesterday will kill you today and the day after tomorrow will make you healthy again. At the rate the 'news' and 'progress' is going health-wise anyway. Performing CT scans biannually reduced the associated mortality risk by half. That means every 6 months, I've only had it done maybe a total of 6 times.

''Studies of the potential survival benefits, preferably randomized controlled trials, therefore now need to be initiated so that any future risk of cancer will be justified by the benefits of the test," basically saying they don't know if it causes cancer or not but it's a theory. I hate to say it but you're probably at more risk of getting cancer if you stand out in the sun, with no shade, for 3 hours. Just my view though.
 
I

IG

Guest
...
I've had a few CT scans. Usually if a CT scan is done before a bronch that's because they have a clearer idea of what is in there, what places are obstructed, etc which makes going down there with the cam easier. It's probably in conjunction with the bronch. If it's not it's still the same concept.. Gives you a clearer picture of what's mucked up down there. Now I wouldn't suggest having one every 6 months or every year... but I have had a few and yet I don't glow in the dark. Yet.

Also concerning the article, I would just bipass it. Honestly what made you healthy the day before yesterday will kill you today and the day after tomorrow will make you healthy again. At the rate the 'news' and 'progress' is going health-wise anyway. Performing CT scans biannually reduced the associated mortality risk by half. That means every 6 months, I've only had it done maybe a total of 6 times.

''Studies of the potential survival benefits, preferably randomized controlled trials, therefore now need to be initiated so that any future risk of cancer will be justified by the benefits of the test," basically saying they don't know if it causes cancer or not but it's a theory. I hate to say it but you're probably at more risk of getting cancer if you stand out in the sun, with no shade, for 3 hours. Just my view though.
 
R

Rokiss12

New member
i've had 5 or 6 head CT scans, im 16, and my parents have never expressed concern. i/we don't really think about it, because hopefully the positives outweigh the negatives in the end. the only problem i have is the tight quarters :p
 
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Rokiss12

New member
i've had 5 or 6 head CT scans, im 16, and my parents have never expressed concern. i/we don't really think about it, because hopefully the positives outweigh the negatives in the end. the only problem i have is the tight quarters :p
 
A

anonymous

New member
I only get Chest CT's and not x-rays anymore. This all began because I had atypical mycobacteria when I was 11, and a CT scan is the only accurate way to identify the growth of mycobacteria on film. (Cultures too, but a ct scan can detect it even before a culture can). For about 8 years I got them every 3 months! That is a lot, but the damage I had from mycobacteria was worse ( I lost my left lower lobe). Now I get them once a year. My doctor's feel that the monitering the small changes on CT scans are better than waiting for something to show up on an xray, because often by then it is worse.

However, I do not really see the reason for young children who are fairly healthy with CF to get them, unless some other kind of bacteria had come into play, other than the normal things.

As far as the radiation etc., goes, it is like that with CF all the time, you trade one thing for another etc., and you are right to question it.

Caitlin
 
A

anonymous

New member
I only get Chest CT's and not x-rays anymore. This all began because I had atypical mycobacteria when I was 11, and a CT scan is the only accurate way to identify the growth of mycobacteria on film. (Cultures too, but a ct scan can detect it even before a culture can). For about 8 years I got them every 3 months! That is a lot, but the damage I had from mycobacteria was worse ( I lost my left lower lobe). Now I get them once a year. My doctor's feel that the monitering the small changes on CT scans are better than waiting for something to show up on an xray, because often by then it is worse.

However, I do not really see the reason for young children who are fairly healthy with CF to get them, unless some other kind of bacteria had come into play, other than the normal things.

As far as the radiation etc., goes, it is like that with CF all the time, you trade one thing for another etc., and you are right to question it.

Caitlin
 
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