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Cavitary lesion and wall thickness ?

Posted by jewel8888 @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

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 21, 2017
In reply to @pamelasc1 "This is a question to the MAC/Bronchi group: has anyone tried to stop using their Symbicort..." + (show)
@pamelasc1

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

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@pamelasc1, The glitch with the Daily Digest has been corrected. Are you receiving it daily again?

REPLY
pamelasc | @pamelasc1 | Mar 22, 2017
In reply to @pamelasc1 "This is a question to the MAC/Bronchi group: has anyone tried to stop using their Symbicort..." + (show)
@pamelasc1

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

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yes, the Digest is now coming in each day - thank you for fixing this! Pamela

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jewel8888 | @jewel8888 | Mar 23, 2017
In reply to @katemn "@jewel8888, Julie, PLEASE keep us posted! We will help in any way we can .. we..." + (show)
@katemn

@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

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Thank you again Katherine. I will keep everyone updated about my April 4th visit with CARDIO/THORacic surgeon on April 4. It was difficult getting the ct scan, i wasnt feeling well from a hip/bursitis injection last Friday, where i had an allergy to it. I experienced extreme itching, cortisone flare, swelling along ankle and on top of right hand. Seems like ive gone down this journey with lung and increased inflammation, food allergies since i had several injections over a year ago. Its hard when so many things make it complicAted for doctors to diagnose and treat. Im picking up a short azithromyacin zpac today for new sinus infection. Im venting but know everyone understands.

Ill get the results tomorrow of ct scan and will definitely come here with the news. Is this thread in the mac group, i mzy have put it in wrong spot? Sincerely, jewel8888 julie

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Linda | @llwortman | Mar 24, 2017
In reply to @jenblalock "Hi. I have two cavitary lesions. Left lower lobe and upper right lobe. I also had..." + (show)
@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.

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Hi Jen:so glad you reached out to Connect!
This is a great group!
linda

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oldkarl | @oldkarl | Mar 25, 2017

With both psoriatic and rheumatoid arthritis, and lung lesions, you are in the zone where it is realistic to have yourself checked for some form of amyloidosis. There are a great many signs which relate to you, so the first step is a SERUM FreeLite(C) chain assay. Any top clinic can do it. Mayo, City of Hope, Brigham & Women's, etc. And do a 24-hour urine collection and protein measurement. If either of these shows ANYthing, have one of those top clinics start doing some testing, genetic and histological. But if the doctor you see is not experienced with amyloidosis (there are a thousand or so different mutations) find a doctor who is. Call the amyloidosis foundation or Mayo for a referral. And repeat things every few months. It has taken me two years to even find a doctor who could say the word properly.

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Katherine, Alumni Mentor | @katemn | Mar 29, 2017
In reply to @katemn "@jewel8888, Julie, PLEASE keep us posted! We will help in any way we can .. we..." + (show)
@katemn

@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

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jewel8888 Hi Julie, sorry I have not answered sooner .. I have been dealing with a family situation .. but I'm back now! You are posting to "Cavitary lesion and wall thickness ?" If you wanted to post to my MAC and Bronchiectasis group (which of course I think is a WONDERFULLY supportive community 🙂 .. you could post at the bottom "Post Reply" at https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=32#post-255827

Hugs and good luck on your appt! Katherine

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jewel8888 | @jewel8888 | Apr 3, 2017
In reply to @katemn "@jewel8888, Julie, PLEASE keep us posted! We will help in any way we can .. we..." + (show)
@katemn

@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

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I appreciate your checking on me!

I didnt know if our above posts could be moved to the MAC group or if i needed to start new thread

I go to Dr tomorrow, with report in hand. Its looking good with the lesion not increasing. It does say there is ground glass increasing bilaterally, likely from atelectasis and hypoventilation. Also that this is stilll of unknown origin....., neoplasric, infectious, imflammatory. Its hard trying to remember what to ask but i think with all ive learned from you and the group i will be ok. This surgeon is chief of the medical univ. Of South Carolina.

Thank you. Again, i will make sure to share afterwards.

Julie

REPLY
Jen_b | @jenblalock | Apr 3, 2017
In reply to @katemn "@jewel8888, Julie, PLEASE keep us posted! We will help in any way we can .. we..." + (show)
@katemn

@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

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Hi Julie, I also go to MUSC. I used to work for the Department of Surgery. Do you see Dr. Flume for your lungs? He did not recommend surgery for me although I have two cavitations. I also see Dr. Huitt at National Jewish who was leaning toward surgery but decided to cancel/postpone since the lesions are remaining stable.

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Kay Strand | @kaystrand | Apr 3, 2017
In reply to @katemn "@jewel8888, Julie, PLEASE keep us posted! We will help in any way we can .. we..." + (show)
@katemn

@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

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Jen BWe are in the same boat! My doc was all for surgery which they do more for cavities, but since my Ct showed my cavity had gotten so thin walled it looked almost disintegrated she said the surgeon and she(pulmonary doc) would not want to do surgery. As good as VATS surgery is, I guess never have any surgery if there are less invasive treatments. At one time I was hoping for surgery, now relieved I didn't have it, nor did you.Yay for us! Take care Jen....Kay S

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jewel8888 | @jewel8888 | Apr 3, 2017
In reply to @katemn "@jewel8888, Julie, PLEASE keep us posted! We will help in any way we can .. we..." + (show)
@katemn

@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

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Your reply means so much. As i replied above im hoping to reveive antibiotics and see if they continue to make ne feel better. Im glad the decisions are in our hands! My vest wishes uou contonie to feel better.

Julie ,⚘

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