Share this:
jewel8888
@jewel8888

Posts: 79
Joined: Jan 10, 2017

Cavitary lesion and wall thickness ?

Posted by @jewel8888, Mar 15, 2017

Hi there, im new to this groip. Last year i had a 3 month review for an upper left lobe cavitary lesion. Bronchospy couldn’t reveal any information, the lesion isi5n difficult spot to get enough sample. Three months ago thr next CT scan revealed the size was the same but the wall thickness is a bit smaller than before. My next CT is soon and i want to be prepared with questions but dont know where to begin. I have RA and psoriatic arthritis, and also suffered a fall before all this started. Please let me know if you have any suggestions….i see the cardio/thoracic surgeon in a couple weeks and he said if not smaller they want to get me in surgery….thank you

REPLY

Dear @jewel8888 .. Julie, I do not have cavitary MAC but we have several Forum Members who do .. I am hoping our Members @laneyk .. Elaine, @kaystrand .. Kay, @jewel8888 .. Julie, @jenblalock and @Paula_MAC2007 will jump in and help you with some thoughts/potential questions you might write down as you prepare for your appointment. From my File Cabinet I have some good information from Member @Paula_MAC2007 re: MAC and NTMs with Cavities
I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC — nodular which is prevalent in thin, middle-aged white women, and cavitary which is more prevalent in men with underlying lung disease. And then there are those with a combination of the two. Your question of causing “cavity to leak or break” may be related to the THIN WALLS in the cavities of an upper lobe.
I also rely on information from a few websites – one is the NTM Research & Info group, a non-profit organization formed on behalf of patients with pulmonary nontuberculous mycobacterial (NTM) disease for the purpose of patient support, medical education and research.. . . https://www.ntminfo.org/
They have an online support group, but also they provide phone nos. & email addresses so you can contact them directly. Perhaps they can answer your question or refer you to a knowledgeable physician who can. I think a further explanation from another physician is a good idea.
Here are a few more sites with info about your type of NTM, that state “In upper lobe cavitary form, thin-walled cavities with overall volume loss and fibrosis are the dominant feature, often also with features of endobronchial spread with tree-in-bud opacities seen elsewhere.
* https://radiopaedia.org/articles/pulmonary-mycobacterium-avium-complex-infection
* https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4823187/
* http://maclungdisease.org/frequently-asked-questions

Also below from my File Cabinet in case you might find it handy:

This is the question form I use when I see my MAC/Bronchiectasis doctor. This is merely the form I put together for myself .. cut/pasted from numerous sources .. use it .. redesign it for your own needs or whatever. You could easily copy/paste/ADD SPACES FOR NOTES/redesign it for your own use. Hope it helps someone! Hugs! Katherine
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
Questions to Ask Your Doctor-LUNGS-MAI- Bronchiectasis
DOCTORS’ NAME: PHONE #: FAX #:
_______________________________________________________________________________________________________________________
Questions To Ask Your Doctor
DOCTOR: _________________________________SPECIALTY______________________ DATE_______________
1. Where is the MAI/Bronchiectasis located currently? Are there new areas or new changes? At what stage would you say it is on a scale of 1 to 10? How does it compare to my last appointment for each.
2. Are the drugs I am taking currently effective for the two mycobacterium/Bronchiectasis ?
a. Are the dosing level for each medication effective or do they need to be adjusted? b. What period of time before one of the medications can be adjusted or eliminated?
3. Based on the current progress how long would you project that I would me to be on the medications?
4. What monitoring will I continue to need? When will I need my next:
a. Follow up appointments with you? b. X-rays/ CT scans
c. Monthly Lab work
d. Hearing testing
e. Vision testing
f. Monthly salt induced Sputum Cultures (Hypertonic Saline Induced Sputum Culture)
5. How long would you anticipate the side effects of night sweats/sleep disturbance/fatigue/oral thrush/dry mouth/geographic tongue to continue? a. Do you have any suggestions for coping with the less serious side effects?
6. Do you agree with the current Medication Schedule I am following?
7. Do you suggest any other lung clearance devices? How often/when?
8. Can I still take my stated over the counter medicines/vitamins/supplements?
IF SUGGESTED NEW Medication:
1. a. Spelling of new drug I will be taking b. dosing level of each new medication c. what period of time before the next medication d. how long do you expect me to be on the medications e. any new monitoring will I need f. any side effects will I likely to have g. which side effect should be reported immediately h. when/how do I take each of these medications/ what schedule should I follow
TESTING RECOMMENDED FOR ANTIBIOTICS:
IMPORTANT! https://labtestsonline.org/understanding/analytes/susceptibility/tab/test/
Make sure your Pulmonologist is doing a ‘susceptibility panel’ IN ADVANCE of going on that particular antibiotic to tell EXACTLY what your MAC will respond to and WHICH one of the few drugs that will work on that particular mycobacterium. This panel is done from a positive sputum culture or lavage of lung. Susceptibility testing is often ordered at the same time as a culture.
Susceptibility Testing for Mycobacteria
http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=A&unit_code=34805
http://cid.oxfordjournals.org/content/31/5/1209.full
http://www.mmmig.nl/static/filebank/d073522b5602729078139d641a4cf987/antimicrobial-susceptibility-testing-drug-resistance-mechanisms-and-therapy-of-infections-with-nontuberculous-mycobacteria.pdf
TESTING-baseline and periodic 1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin – CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY
OR TESTING:
BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)
MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)
**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase – LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE – KIDNEY
TESTING-AFTER ANTIBIOTIC TREATMENT ENDS I can ONLY speak for myself about what testing is correct after going off antibiotic treatment. Personally I had quarterly check ups with my doctor including sputum cultures initially .. then as he put the ‘puzzle’ together based on the results of the sputum culture/Xray/Pulmunary Testing ..deciding when to go to semi annual .. then to annual .. sometimes then back to semi annual. It is ALL up to your GOOD Infectious Disease doctor who is KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up check ups to CONFIRM that the MAC in your lungs is STILL negative/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still negative! Those nasty critters DON’T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene! Hope this is helpful. Katherine
TESTING RECOMMENDED FOR VITAMIN LEVELS 1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH doubled the VD I take to 4000 units a day… my lab test showed I was at 50 and she said she likes to see it at 100.
2. Ask for your B-12 level to be checked .. they can get too low
3. Personally I always purchase the brand Nature Made vitamins for it’s quality .. ‘ Nature Made is the first brand to earn the USP Verified Mark on one of its products, an independent certification for quality and purity.’
THINGS TO CONSIDER:
• Keep copies of all your lab work
• Keep your x-ray/CT scan films yourself, or consider having them done where they can be put on a CD http://ntminfo.org/files/QuestionsToAskYourDoctor.pdf http://ntminfo.org/index.php?option=com_content&view=article&id=50&Itemid=52

Hi. I have two cavitary lesions. Left lower lobe and upper right lobe. I also had NonTuberculosis Mycobacterium which has cleared up and have mild bronchiectasis. I went to National Jewish Health where they talked about doing surgery to remove the left lower lobe or section but after my second CT scan decided against it since the lesions are shrinking a bit now that the infection has cleared up. My local pulmonologist never wanted to do surgery. He says if I am feeling better (I am) that surgery was too aggressive just to prevent another infection since the surgery was serious and I can never get that part of my lung back. I have decided that there is no hurry to make any decision one way or another since I feel good and the lesions are no longer growing now that the infection is gone.

I would ask your doctors why they want to do surgery and what happens if you wait and see awhile. Have they done a bronchoscopy or sputum culture yet? I would also get a second opinion.

@jewel888. I had a cavity in my upper right lung which was found when I had pneumonia 15 months ago. They watched it and it got smaller at one point and then when it went back to the original size they did a biopsy and diagnosed me w MAC. The biopsy was not of the cavity which they could not get to, but a lung lavage. . So I don’t know what was in the cavity, which became thinner and thinner walled and now is just a weird spot they think is dead debris. I’ve been on MAC drugs since August.
Anytime mine got thinner walled the doc said that was good. I guess the wall is the infection part, but not sure.

Keep asking your doc what the thinning wall means. The Mayo told me not to fly, but now they said I’m ok being that the cavity has sort of disintegrated.
Hope that helped.

Kay S

@kaystrand

@jewel888. I had a cavity in my upper right lung which was found when I had pneumonia 15 months ago. They watched it and it got smaller at one point and then when it went back to the original size they did a biopsy and diagnosed me w MAC. The biopsy was not of the cavity which they could not get to, but a lung lavage. . So I don’t know what was in the cavity, which became thinner and thinner walled and now is just a weird spot they think is dead debris. I’ve been on MAC drugs since August.
Anytime mine got thinner walled the doc said that was good. I guess the wall is the infection part, but not sure.

Keep asking your doc what the thinning wall means. The Mayo told me not to fly, but now they said I’m ok being that the cavity has sort of disintegrated.
Hope that helped.

Kay S

Jump to this post

Kay, I believe you are right that a thinner wall is a positive sign.

@jenblalock

Hi. I have two cavitary lesions. Left lower lobe and upper right lobe. I also had NonTuberculosis Mycobacterium which has cleared up and have mild bronchiectasis. I went to National Jewish Health where they talked about doing surgery to remove the left lower lobe or section but after my second CT scan decided against it since the lesions are shrinking a bit now that the infection has cleared up. My local pulmonologist never wanted to do surgery. He says if I am feeling better (I am) that surgery was too aggressive just to prevent another infection since the surgery was serious and I can never get that part of my lung back. I have decided that there is no hurry to make any decision one way or another since I feel good and the lesions are no longer growing now that the infection is gone.

I would ask your doctors why they want to do surgery and what happens if you wait and see awhile. Have they done a bronchoscopy or sputum culture yet? I would also get a second opinion.

Jump to this post

@jenblalock, do you have a first name .. more personal. Thank you SO much for jumping in .. that is just GREAT advice .. ESPCIALLY about getting a second opinion .. I so agree with you! I am with you all the way! Thanks for all the help .. since I know zero about this! Hugs! Katherine

@kaystrand

@jewel888. I had a cavity in my upper right lung which was found when I had pneumonia 15 months ago. They watched it and it got smaller at one point and then when it went back to the original size they did a biopsy and diagnosed me w MAC. The biopsy was not of the cavity which they could not get to, but a lung lavage. . So I don’t know what was in the cavity, which became thinner and thinner walled and now is just a weird spot they think is dead debris. I’ve been on MAC drugs since August.
Anytime mine got thinner walled the doc said that was good. I guess the wall is the infection part, but not sure.

Keep asking your doc what the thinning wall means. The Mayo told me not to fly, but now they said I’m ok being that the cavity has sort of disintegrated.
Hope that helped.

Kay S

Jump to this post

@kaystrand, Kay, thanks for jumping in here .. any help we can give @jewel888 Julie before her appointment .. hints .. thoughts .. advice will be a lifesaver. She is in a tough spot. Hugs! Katherine

@jenblalock

Hi. I have two cavitary lesions. Left lower lobe and upper right lobe. I also had NonTuberculosis Mycobacterium which has cleared up and have mild bronchiectasis. I went to National Jewish Health where they talked about doing surgery to remove the left lower lobe or section but after my second CT scan decided against it since the lesions are shrinking a bit now that the infection has cleared up. My local pulmonologist never wanted to do surgery. He says if I am feeling better (I am) that surgery was too aggressive just to prevent another infection since the surgery was serious and I can never get that part of my lung back. I have decided that there is no hurry to make any decision one way or another since I feel good and the lesions are no longer growing now that the infection is gone.

I would ask your doctors why they want to do surgery and what happens if you wait and see awhile. Have they done a bronchoscopy or sputum culture yet? I would also get a second opinion.

Jump to this post

My name is Jen Blalock.

@jenblalock

Hi. I have two cavitary lesions. Left lower lobe and upper right lobe. I also had NonTuberculosis Mycobacterium which has cleared up and have mild bronchiectasis. I went to National Jewish Health where they talked about doing surgery to remove the left lower lobe or section but after my second CT scan decided against it since the lesions are shrinking a bit now that the infection has cleared up. My local pulmonologist never wanted to do surgery. He says if I am feeling better (I am) that surgery was too aggressive just to prevent another infection since the surgery was serious and I can never get that part of my lung back. I have decided that there is no hurry to make any decision one way or another since I feel good and the lesions are no longer growing now that the infection is gone.

I would ask your doctors why they want to do surgery and what happens if you wait and see awhile. Have they done a bronchoscopy or sputum culture yet? I would also get a second opinion.

Jump to this post

Welcome Jen .. just the first name! I’ve been using @jenblalock, .. didn’t want to assume Jen .. some people use many variations of names! Hugs! Katherine

Thank you everone so much. I see my rheumatologist tomorrow and ct scan scheduled on Tuesday. I had been participating in the MAC support group several months ago but a dying phone kept me off for a while. The info everyone has given me really helps.

I am a little concerned, still need a sputum test and did have a broncoscopy last summer but the surgeeon i was later refered to said he couldnt rule out cancer, but we will review it and make decision in April. What i dont understand is this all started at ladt year same time i developed a uti which caused sepsis as it went into bladder infection (more than 4 baterium found in labwork). It kind of sounds like i should have been given long term meds from what i see in the responses. Ive had severe weakness before and after the chest xray. The pulmonologist i saw who did my broncoscopy didnt know what to do so at least he moved me to this surgeon for another opinion. Being immunocompromised already has helped to confuse things, and im certain an open biopsy is not something ill decide lightly. Im off to review the links you offered Kate. Julie8888

@kaystrand

@jewel888. I had a cavity in my upper right lung which was found when I had pneumonia 15 months ago. They watched it and it got smaller at one point and then when it went back to the original size they did a biopsy and diagnosed me w MAC. The biopsy was not of the cavity which they could not get to, but a lung lavage. . So I don’t know what was in the cavity, which became thinner and thinner walled and now is just a weird spot they think is dead debris. I’ve been on MAC drugs since August.
Anytime mine got thinner walled the doc said that was good. I guess the wall is the infection part, but not sure.

Keep asking your doc what the thinning wall means. The Mayo told me not to fly, but now they said I’m ok being that the cavity has sort of disintegrated.
Hope that helped.

Kay S

Jump to this post

Thank you Kay. I havent had a chance to talkbwith anyone else who understands so feeling much better. Im so glad to hear they can reduce as yours did.

@jenblalock

Hi. I have two cavitary lesions. Left lower lobe and upper right lobe. I also had NonTuberculosis Mycobacterium which has cleared up and have mild bronchiectasis. I went to National Jewish Health where they talked about doing surgery to remove the left lower lobe or section but after my second CT scan decided against it since the lesions are shrinking a bit now that the infection has cleared up. My local pulmonologist never wanted to do surgery. He says if I am feeling better (I am) that surgery was too aggressive just to prevent another infection since the surgery was serious and I can never get that part of my lung back. I have decided that there is no hurry to make any decision one way or another since I feel good and the lesions are no longer growing now that the infection is gone.

I would ask your doctors why they want to do surgery and what happens if you wait and see awhile. Have they done a bronchoscopy or sputum culture yet? I would also get a second opinion.

Jump to this post

Many thanks for your response. I feel better understanding some of this now. Also, im so happy yours decreased and infection is gone. I replied below with a few answers to the questions you raised. Again, im so appreciative for your reply. Julie8888

@jewel8888, Julie, PLEASE keep us posted! We will help in any way we can .. we are NOT doctors .. but will try to help. Keep asking questions! Sending you hugs and LOTS of positive energy! Katherine

Liked by jewel8888

This is a question to the MAC/Bronchi group: has anyone tried to stop using their Symbicort for any length of time to see if it really makes a difference? I know this is best decided by ones doctor, but I just read in the little book on Bronchiectasis by Pecaut that the use of steroids on a regular basis wrecks havoc with the immune system by suppressing it. I wrote awhile ago that taking the 2 puffs twice a day really does not make me cough much. I have been on the Symbicort now for about 3 years. Why would anyone want a suppressed immune system?! Also, as an aside, I did not get my Connect today.. does this sometimes happen with any of you? Thank you, Pamela

@pamelasc1, Pamela interesting that you should ask this question! I asked this VERY question re: the use of Qvar a steroid inhaler on my March 7 appointment. I have been using Qvar for quite a few years .. 2 puffs 2x per day for my MAC and Bronchiectasis .. questioning how it could be affecting my immune system. Dr. Aksamit’s answer for me? That dealing with MAC or Bronchiectasis .. the risk/reward was worth the continued use of a steroid inhaler. SO… I continue to use Qvar because I trust my Pulmonologist at Mayo Clinic .. BUT I think EACH of us must speak to our own Pulmonologist re our own particular health situation. Hope that info helps? Hugs! Katherine

(I will forward your ” did not get my Connect today.. does this sometimes happen with any of you? ‘ to Colleen .. maybe she can check on it?)

@pamelasc1, Pamela, as I was just getting ready for bed .. your post came to my mind .. that ” that taking the 2 puffs twice a day really does not make me cough much ” about your inhaler. My question? Have you tried the Aerobika recommended by other of our members? After reading of their good experiences with the Aerobika I purchased mine .. and have had REALLY good experience getting up much more mucus than without it. I did this because I am so aware of the importance of getting the mucus up and out .. that the mucus becomes a breeding ground for more mycobacterium otherwise.

This is just a thought .. but I found the Aerobika really helpful. Hugs! Katherine

AEROBIKA http://www.aerobika-therapy.com/order-today/ https://www.monaghanmed.com/Aerobika

INHALERS/LUNG HYGIENE/AEROBKA
Below is my particular routine in using my Aerobika
1. use my 2 inhalers PRIOR to brushing my teeth
2. use a “huff” cough at least 3 times .. like you were cleaning your glasses and fog them with your breath .. only MORE forcefully. Then use the Aerobika device per the instructions. Do the huff cough along with the Aerobika until you feel you have gotten up as much sputum as you possibly can. I have found using the Aerobika you are able to ” pull” mucous out of those lower lung airways in a way you cannot without the device. Personally I do this twice a day.
3. using peroxide to dampen my toothbrush and toothpaste to brush (purchased a squirt dispenser for the peroxide)
4. rinse my toothbrush .. then using peroxide for toothbrush storage for sterilizing
I think this routine will help oral thrush by keeping my Sonicare toothbrush

Please login or register to post a reply.