C Scan timing and scheduling

Great question. I have been curious about this as well since I’m in the group that hasn’t been able to produce a sample. I asked my ID Dr what the follow up/monitoring will be once I’m off the meds (most likely not until Feb 2026) but he said we’ll discuss it later. Results from my bronch weren’t back during my last visit which is why he might have been vague. It would be helpful if this was also part of the standard of care to have a framework and know what to expect or advocate for. I did also read the article about C scan risks so have to balance out the risk vs need for the information. That being said my first two scans were done at the hospital outpatient facility. The second at a stand alone as this is all insurance would cover. The reports from the stand alone are much less detailed so I am concerned about information not being conveyed.

I produce a sample every month., not once have they said it couldn't be accepted when I send it in. I have a need to constantly clear, all day long, what is sitting at the back of my throat. So, the "good and the negative of overproducing or underproducing. Go figure!
Also, "why he might have been vague". Hard to understand why we do not get what I would consider full communication from the doctors to help understand all and to help educate us. I have said to myself, they weren't trained to be 'teachers' and we haven't been medically trained to help us to know what to ask etc. nor are we trained in the skills to effectively gather client/doctor feedback such as a sales person is trained to do in asking probing questions to elicit valuable insights for the client/doctor to understand our needs for specific communication from them with answers and as well build a really good rapport. Then there is the time factor that the doctor has for each patient which limits our time with them.
Looking forward to hearing from others also.
Barbara

There is a difficult balancing act. When I've had nodules above a certain size it's been recommended to do follow up CT scan in 3-6 mos.
Earlier in my bronchiectasis my first pulmonologist would sometimes skip the annual routine CT scan in favor of PFTs because my bronchiectasis was stable then (pre-MAC days), and I had a very minor thyroid cancer some yrs ago & radiation is one of the biggest risks/ causes for thyroid cancer so I wanted to guard against recurrence. On the other hand, my current NYU bronchiectasis specialist team is more aggressive w the CTs because any cancer history means nodules of a certain size need to be monitored & with MAC, my bronchiectasis is no longer stable. So ... there's not always just one answer.

Thanks. Glad you shared your experience and reasons why or why not for tests/C Scans, timing etc. etc.
Food for thought for us and for the doctors to know and understand our medical history to give full consideration as to how to go about tests/testing etc. Interesting, nodules of a certain size and testing, C Scans.
Again, it is that balancing act as in so many things.
As I think of it all now when I think of myself or sometimes verbalize to others "It's just me with my BE and MAC that has decided to live inside me." 😁 I have not agreed to....as yet.... the antibiotics. Also waiting on last results of the sputum vile submitted for testing. I will be seeing pulmonology doctor this month.
True, "there's not always just one answer and then there is "we are all different."
Hope your day has gone well.
Barbara

I looked at guidelines and it says the frequency should be individualized and based on patient symptoms. I had one
March 2024 and doc didn’t order one before my scheduled Oct visit either. I seldom produce sputum, cough only occ. and my good PFT’s had even improved. He does check PFT’s at each visit.

Thanks for your reply and thinking to look it up to see what is said as a standard, per the information you found.
It appears it is up to the individual pulmonary doctor and what they prefer to base it on per the patients symptoms, test results etc. etc.
Yes, PFT each visit for me also. Truth is I finally realized that after having had it the only way I knew it was good was because the technician said it was off the scale in the right direction. I realized that the doctor during our visit(s) never indicated one way or another the results of the PFT with me. We have to be so on our toes all the time to ask and ask the questions we need answers to. Some doctors run out of the room when you start asking questions to understand matters etc. etc. and then send in the nurse to answer and take over. Very disappointing and not the same thing as the doctor responding. So many decisions, and sometimes compromises, we have to make for various reasons.
Barbara

At this point, my CT scans will be every two years unless my situation changes. That's a good thing for me, since on the "off years" they can do my heart CT's (I asked and they cannot be combined 🫤)
My PFT's are checked at every visit too.
The only thing lacking at this point are 3 sputum samples good enough to culture, I could only produce one and it was negative - will try again when I get back to MN.

Thank you Sue. I don't know if you read where I posted about my decision to see a cardiologist due to the heart/lung relationship. Found out I have a leaky mitral valve.
So, interesting the way it is being handled for you with the heart testing and lung testing...alternate years. It was just this week that I truly gave greater thought to this C Scan testing. So much to know and think about....and discuss with doctors.....as YOU truly know.
I am seeing new pulmonologists this month to decide where and who it will be best for me to go and see for my BE since McShane moved on. With all I have learned, verses what I didn't know before early on in this journey, I now am prepared with questions to help somewhat in my decision, thanks to you and this Mayo site. Hope all goes well with my now knowing a bit more and wanting to be proactive in my decision making. Wish me luck...😉😂
Barbara

Every six months

That was me for the first 2 years after diagnosis, then annually, and because my BE is stable, now 2 years.