Connect
Ion robotic bronchoscopy next week, MAC?
Hey there, I'm new to this group. I had bronchiectasis diagnosed about 6 years ago. I have undergone 3 CT scans in the last 4 months showing worsening of lung nodules. Radiologists on all 3 reports suggest MAC. I have had 2 previous bronchoscopies that were negative for MAC. A recent sputum test did show positive for AFB. Because of the abnormal CTs my pulmonary doc is doing the robotic bronchoscopy for clearance and biopsy. I had a bad flare last month that took 2 courses of antibiotics and 4 weeks to get me back to baseline. I do not tolerate antibiotics well and this time I lost 7 pounds. There are so many things I cannot tolerate now (smoke, perfume, gas, cleaning products, some foods) that will trigger me to a flare. I'm worried at this point as my pulmonologist is pretty sure it is MAC. About 9 years ago I also had breast cancer with bilateral mastectomies, but they assure me the lung problem is not related to that. I have been reading a lot of your posts and have found a good deal of information that I may be able to use in the future. Thanks for listening.
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
Sorry you are going through all this, you will find a wealth of information on this site. Interesting they are doing a broncoscopy since you were able to produce a sample, typically this is reserved for those who are unable to or need a lavage. Since you stated it’s robotic that sounds like an advanced facility so hopefully a care center which specializes in BE and NTM. I had read about airway clearance in this forum as it was not brought up by my pulmonologist or ID until my last visit, but only in passing with no specifics. As you don’t tolerate antibiotics well, I would highly recommend you ask your doctor about airway clearance and start this, if cleared and recommended right away.
Thanks for your reply! I have been using a nebulizer off and on for about 6 years following with an
Afflovest. I also use an Aerobik and Mucinex. I am thinking the doc wants to make sure the nodules are not cancer related. We have no facility that specializes in BE and NTM, but my pulmonary doc has become skilled at performing this procedure and MAC treatments. Initially the sputum culture was reported to the doctor as negative, but for some reason the lab held onto it and watched it grow AFB. We were discussing the new drug that might be come out for BE in the near future, so maybe there is hope for us?
Happy to share things that I have learned along the way! Regarding holding onto the sample as it’s slow growing it often takes 4-6 weeks to determine if the bacteria is present. I just got results back from my 2/24 bronch. The lab can also determine what antibiotics any findings are susceptible to which can assist what your provider can prescribe if you do treat with antibiotics (3x weekly or daily). I believe the new drug might get approval as soon as as August per this forum but not sure who will be eligible. I’m sure a lot depends on the drs knowledge and insurance coverage. Looks like you are already an airway clearance ‘expert’, many people are nebulizing with hypertonic saline so something you can talk to your pulmonologist about.
@lnduh72
I'm sorry to hear that you've been going through this for a while. I wanted to offer one story about why an ion robotic bronchoscopy was recommended for me. After seeing nodules on multiple CT scans and other apparent masses, my pulmonologist explained that the robotic bronchoscopy is capable of getting all the way deep into every part of the lungs, even the lower lobes. It also allows for biopsies and fine needle aspirations and multiple lavage opportunities that can yield a lot of good material for the lab to analyze.
He explained that this is much more than we're likely to get from a sputum sample or even from a regular bronchoscopy.
And in terms of how long the lab needs to keep things, I have experienced that they will perform initial testing on the samples, but then in many cases they will put them in a culture to grow and depending on what particular type of bacteria or fungus or mold, it can take many weeks in some cases to grow to the point of them being able to identify species and subspecies.
Good luck to you.
Thank you so much for your reply. I have been doing some research on the ION today and understand why my doctor chose this option. I think he is pretty sure there is infection, but still cannot rule out cancer since I have already had breast cancer with bilateral mastectomies. I know the type of infection that goes along with bronchiectasis takes weeks to diagnose (I did the 6-week wait after 2 previous regular bronchoscopies), but am wondering if he will be able to tell if there is cancer on the day of the procedure. Thanks again!