Regular CT Scans?

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Blue

New member
I'm 30 and have been at the same CF clinic for the past 10 and was at another CF clinic for the previous 20. This past visit my doctors told me they needed to do my regular CT scan. Huh? Never had one of these before, but was told they have every CF patient having a CT scan every 3-5yrs. Apparently I've slipped through the cracks.

I have a chest x-ray annually so I was interested in what the CT scan will reveal (that is different from the x-ray) and how this might change their regiment with me. I was told it may reveal more plugging in which case they would recommend more airway clearance or possibly bronchiectasis (which comes with pretty significant symptoms, which I don't have). Otherwise, they will change nothing.

Hmm, I think to myself; this test will cost me upwards of $4800 out-of-pocket for you to tell me to increase airway clearance, possibly? I've had a stable FEV1 of 55% for at least the last 10 years, with the exception of my pregnancies. If this test isn't really diagnostic for irregular symptoms or decreased FEV, is it reeeeally necessary considering the cost/benefit ratio (not to mention the perceived unnecessary radiation exposure)?

My questions:

Do you have REGULARLY SCHEDULED CT scans at your clinic?

If not, under what circumstances (regarding your lungs) have you had a CT scan?
 
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debs2girls

New member
My daughter doesnt have a CT scan at her clinic but she does have them when admitted. It was 4 a year but they have decided that is too much exposure so now it is only 2 a year.
 
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ajlindsley

New member
The clinic that my kids go to are doing regular CT scans every 3 years, no annual xrays. Our dr explained that they can see "trouble" much sooner on CT scans than they can on xrays. For example, some mucus plugs that might show today on an xray have shown up 3 years ago on a CT scan.
 
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Melissa75

Administrator
I think the most useful reason to have a CT scan is if you culture an NTM like M. Abcessus or MAC. MAC is concentrated in the right middle lobe and lingula, and M. Abcessus can cause cavities. Sometimes drs choose not to treat it -- the antibiotic regimen is intense-- and they do periodic CT scans to see the progression of the disease. When drs do treat it, CT Scans with sputum cultures can help determine what's going on in there.

CT Scans can also help drs to have an idea of your lung damage at present in order to make judgements when something big happens in the future. Here is a scenario I'm making up... If your FEV1 drops a bunch and it's been a while so they do a second CT Scan, which shows the same amount of bronchiectasis and plugging, but maybe it shows more emphysema-like changes. That might indicate maybe you need a COPD med or nothing, rather than a round of IVs.

I'm not a fan of a ton of radiation, but every 3-5 yrs is not a big deal imo. I don't have CF (non-CF bronchiectasis) so when I started presenting with repeated pneumonias, pleurisy, pericarditis and all sorts of internal weirdness in my twenties, I was subjected to a gillion CT Scans. They didn't want to miss cancer or pulmonary embolisms or I don't know what. I eat a lot of antioxident foods and tell them "no thanks" as much as possible nowadays.

GET A COPY OF THE CT SCAN ITSELF on CD in addition to the REPORT. Absolutely the most useful thing about a CT Scan is being able to compare it to another CT Scan, and if you have it in your possession, your life is much easier. And get the earlier ones back from the radiologists who do the comparing! :)
 
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Ratatosk

Administrator
Staff member
Our local CF clinic was never able to get a clear xray on DS and reports would come back questionable, so his doctor in the city ordered a CT scan. More recently he's gotten lung scans -- he's nebs something with radioactive isotopes and then they run a scan. It's apparently a better way to view the small airways to get a better idea what's going on. I'm amazed at what a clear picture they get.
 
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stephen

Guest
I’ve been treated at three Adult CF centers in the New York area over the past eight years. (I was very satisfied with them all and switched only for my convenience.) None of them prescribed routine CT scans as they did years ago. Annual chest X-rays are the norm. If the X-ray or something else indicates an abnormal change, they would then do a CT scan.

Years ago, before being diagnosed with CF, I would have a CT scan every year or so to track my Bronchiectasis. I believe that this is no longer the norm, and that CT scans are recommended only if changes in breathing tests, bleeding, or something similar have occurred.
 
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Deb

Guest
Melissa is correct. CT's are very importatnt if you have or are suspected of having NTM. Also CT's scans show problems long before they show up on an xray.
 
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Printer

Active member
I have a CF Clinic that has never done a CF scan, ever. I also see a CF-GI Specialist. When he first saw me he ordered a scan of mt GI track, later by a MRI. This was 10 years ago. Nothing since.

Bill
 
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JENNYC

New member
I was always told only do a CT scan if there is something to be looking for and never just because. Abby has had 8 CT scans and she is 7...all of these were necessary to be treated. But I am very cautious with doing them and always make sure that they have to be done. I have turned them down many times knowing that they were not necessary. Good Luck with your decision :)

Researchers found that a typical patient who visited the emergency room received a cumulative radiation dose of 40 millisieverts over a five-year period. Ten percent of patients ended up with a staggering 100 or more millisieverts. Both levels are well above the safety threshold for lifetime radiation exposure. Exposures above the threshold leave patients vulnerable to increased long-term risk of cancer. As a point of comparison, one chest CT is around 10 millisieverts of radiation and a traditional chest X-ray only 0.02 millisieverts.
 
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lilmac1177

New member
my CF doc always told me that a CT scan is much more detailed and can show more than a regular chest x-ray ... if i'm not mistaken, i think i have a CT scan once a year (or i might be thinking if it's been a while since the previous admission but doesn't necessarily come out to every year)...
 
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nmw0615

New member
I get a chest X-ray at least four times a year. These happen during my hospitalizations; one when I go in and one before I leave. Ever 2-3 years, I have a CT scan to get a more detailed picture of how my lungs are doing. This is been my routine for over ten years now.
 
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Wendy

Guest
I have been wondering the same thing. I am almost 37 (this week), have gone to the same CF clinic since my diagnosis at 9 mos. old, and have never had, nor even discussed a CT scan. Why do some clinics do them and others not? Does age have anything to do with it? I only have x-rays every six months or when I go in the hospital.
 
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bloggymom

Member
Now that I have MAC I have to get a CT scan every 6 months to see if and when the hole will close up. They can check my previous scarring while they are at it. I imagine that I will be doing this from now on. MAC is a part of my life!!
 
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MichaelL

New member
Related to comments above, I get CT scans twice a year because I have mycobacterium abscessus. In addition to my CF doctors reviewing it, I take the scans with me to my NTM doctor for his review. The cost of the scan is covered by the provincial health plan (I am in Canada), so I don't pay anything out of pocket for it.
 
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piggylu

New member
Bloggymom:
What antibiotics are you on to treat the MAC? i have been trying to get rid of it for a year now. Its been a hard one to treat!!!
 
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