1. < MAC & Bronchiectasis

CT Scans vs Sputum Cultures, which is more important?

Posted by mch (Marycarol) @mch, May 31, 2023

I've seen lots of comments focused on sputum culture results as a determinant of whether treatment is successful or not.  I understand the relevance of these cultures, but I'm wondering about the relative importance of CT Scans.  Seems like the sputum culture results can be somewhat erratic, including false positive and false negative potential, and highly dependent on successful sputum production which introduces considerable variability in the quality of the sample.  Can't help but question the reliability of lab results.  I tested positive for MAC based on bronchoscopy, but my pulmonologist seems much more concerned with my CT scan and almost downplays the value of sputum cultures.  I did have 2 small (less than 2cm) cavities on my initial scan so that might be why he's focusing on the scans rather than cultures going forward.  I would appreciate hearing from anyone who's had cavities and what your experience has been with treatment (Big 3 and/or Arikayce) improving (or not) your CT scans.  Thank you.

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tconz | @tconz | Jun 1, 2023

I just got back from NJH and still have one cavity (that has not changed in size) after being on the Big 3 for 4-5 months along with nebulizing Levabuteral and 7% Sodium Chloride. Doctors have added the Vest and Amakacin so I will have another CT in November to check for improvement. My team of Doctors focus on Sputum Cultures and CT since both show different results that pertain to my MAC.

REPLY
1 reply
BlueSplashGirl/ Carolyn | @bluesplashgirl | Jun 1, 2023

Hello, All I can talk to is what happened with me and the cavity I developed. I stayed on the Big 3 and toyed with the idea of Amikacin but after reading about the side effects that could cause hearing loss I decided against it. I stopped nebulizing in November of 2020 and went to Mayo the following February to meet with a surgeon regarding a VAT procedure to remove the cavity. My CT scan showed improvement and the cavity was gone. So, no surgery was required. I had continued to get positive and negative sputum results but my scans looked good and with no change to the MAC clusters. One of the members on here said she had never had a negative sputum test so I stopped that and continue to have CT scans every 6 months. I also stopped taking the medication after 3 years of no change. The azithromycin was also causing hearing loss. I go again this month for another CT to see how things are looking and will not do sputum. I feel pretty good and know that I will stay off drugs until they come up with a better solution. They just didn’t work for me. In the end, I am embracing quality over quantity. Good luck. Carolyn

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3 replies
mch (Marycarol) | @mch | Jun 1, 2023
In reply to @bluesplashgirl "Hello, All I can talk to is what happened with me and the cavity I developed...." + (show)
@bluesplashgirl

Hello, All I can talk to is what happened with me and the cavity I developed. I stayed on the Big 3 and toyed with the idea of Amikacin but after reading about the side effects that could cause hearing loss I decided against it. I stopped nebulizing in November of 2020 and went to Mayo the following February to meet with a surgeon regarding a VAT procedure to remove the cavity. My CT scan showed improvement and the cavity was gone. So, no surgery was required. I had continued to get positive and negative sputum results but my scans looked good and with no change to the MAC clusters. One of the members on here said she had never had a negative sputum test so I stopped that and continue to have CT scans every 6 months. I also stopped taking the medication after 3 years of no change. The azithromycin was also causing hearing loss. I go again this month for another CT to see how things are looking and will not do sputum. I feel pretty good and know that I will stay off drugs until they come up with a better solution. They just didn’t work for me. In the end, I am embracing quality over quantity. Good luck. Carolyn

Jump to this post

Carolyn :

Thanks so much for sharing your experience. That does give me some hope that cavities can improve. If you wouldn’t mind, I would be interested in knowing how your doctor determined that surgery might be appropriate for you. I’m wondering if surgery is inevitable for cavities that don’t resolve on their own or through medication. Also wondering if surgery is limited in area or always involves a significant part of the lobe in which the cavity is found.

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1 reply
mch (Marycarol) | @mch | Jun 1, 2023
In reply to @tconz "I just got back from NJH and still have one cavity (that has not changed in..." + (show)
@tconz

I just got back from NJH and still have one cavity (that has not changed in size) after being on the Big 3 for 4-5 months along with nebulizing Levabuteral and 7% Sodium Chloride. Doctors have added the Vest and Amakacin so I will have another CT in November to check for improvement. My team of Doctors focus on Sputum Cultures and CT since both show different results that pertain to my MAC.

Jump to this post

Thanks for your reply. That’s encouraging to know other doctors also focus on CT scans as being as important as the sputum results.

REPLY
BlueSplashGirl/ Carolyn | @bluesplashgirl | Jun 1, 2023
In reply to @mch "Carolyn : Thanks so much for sharing your experience. That does give me some hope that..." + (show)
@mch

Carolyn :

Thanks so much for sharing your experience. That does give me some hope that cavities can improve. If you wouldn’t mind, I would be interested in knowing how your doctor determined that surgery might be appropriate for you. I’m wondering if surgery is inevitable for cavities that don’t resolve on their own or through medication. Also wondering if surgery is limited in area or always involves a significant part of the lobe in which the cavity is found.

Jump to this post

The cavity was in the upper right lobe and doc felt that a Vat procedure could wedge out the cavity. He told me that as long as there was a cavity I would never resolve the MAC because there is no real blood supply to carry the drugs to the area. He was surprised that it collapsed and I attributed it to not nebulizing. I think Arikace is the only hope so far that may solve a cavity. Not certain. Talk with your doctor to gather all the pertinent info. Good luck.

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2 replies
mch (Marycarol) | @mch | Jun 1, 2023
In reply to @bluesplashgirl "The cavity was in the upper right lobe and doc felt that a Vat procedure could..." + (show)
@bluesplashgirl

The cavity was in the upper right lobe and doc felt that a Vat procedure could wedge out the cavity. He told me that as long as there was a cavity I would never resolve the MAC because there is no real blood supply to carry the drugs to the area. He was surprised that it collapsed and I attributed it to not nebulizing. I think Arikace is the only hope so far that may solve a cavity. Not certain. Talk with your doctor to gather all the pertinent info. Good luck.

Jump to this post

Thanks for the insight.

REPLY
sweethighland | @sweethighland | Jun 1, 2023
In reply to @bluesplashgirl "The cavity was in the upper right lobe and doc felt that a Vat procedure could..." + (show)
@bluesplashgirl

The cavity was in the upper right lobe and doc felt that a Vat procedure could wedge out the cavity. He told me that as long as there was a cavity I would never resolve the MAC because there is no real blood supply to carry the drugs to the area. He was surprised that it collapsed and I attributed it to not nebulizing. I think Arikace is the only hope so far that may solve a cavity. Not certain. Talk with your doctor to gather all the pertinent info. Good luck.

Jump to this post

Hi BlueSplashGirl, thank you. You mentioned "not nebulizing:", meaning nebulizing saline (sodium cloride)?

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1 reply
Rick | @rstel7272 | Jun 2, 2023

Where do I begin. Bronchoscopy, surgical lung biopsy, Cavitation with MAC, 40 months of big 3, round of Amikacin IV, later Arikayce. Got stable after 2 1/2 years only to have a serious fungal infection settle into the RUL cavity. Started Voriconazole. Dec. 2022 had a Super Dimension Bronchoscopy. NJH Dr wants to remove the RUL. I'm not so sure. I went bass fishing, played 18 holes of golf, went to work today and vacationing in Alabama next week..

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jeffsmock regarding my wife | @jeffsmock | Jun 2, 2023

For me both was very important. (CT & Sputum) I had a cavity in my right lung the size of a small coffee cup. I had infusions twice about 2 hours morning 2 hours evenings . Sputum culture take a long time to grow. I had aspergillosis fungus. I then had lower 2 lobes removed. If I wouldn't had both CT& Sputum. I wouldn't be here.

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1 reply
Arlo | @equanimous | Jun 2, 2023
In reply to @bluesplashgirl "Hello, All I can talk to is what happened with me and the cavity I developed...." + (show)
@bluesplashgirl

Hello, All I can talk to is what happened with me and the cavity I developed. I stayed on the Big 3 and toyed with the idea of Amikacin but after reading about the side effects that could cause hearing loss I decided against it. I stopped nebulizing in November of 2020 and went to Mayo the following February to meet with a surgeon regarding a VAT procedure to remove the cavity. My CT scan showed improvement and the cavity was gone. So, no surgery was required. I had continued to get positive and negative sputum results but my scans looked good and with no change to the MAC clusters. One of the members on here said she had never had a negative sputum test so I stopped that and continue to have CT scans every 6 months. I also stopped taking the medication after 3 years of no change. The azithromycin was also causing hearing loss. I go again this month for another CT to see how things are looking and will not do sputum. I feel pretty good and know that I will stay off drugs until they come up with a better solution. They just didn’t work for me. In the end, I am embracing quality over quantity. Good luck. Carolyn

Jump to this post

Hi Carolyn, Thanks for your post. I will be having my CT scan on the 7th. Can you kindly clarify.... CT scans can show MAC clusters? I was under the impression that MAC is only detected thru sputum tests. I am new to my bronchiectasis/MAC diagnosis and, with the help of this group, am getting educated. I am very anxious to get the results of this CT scan and need to know what to ask my pulmonologist. Thank you.

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