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

Interested in more discussions like this? Go to the Lung Health group.

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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@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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@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

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@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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@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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@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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@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 was wondering who you see at MUSC. Also, do you live near Charleston? I live in Mount Pleasant.

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@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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Kate, yes we do seem to be traveling a similar path in our diagnosis. I have a CT Scan scheduled in about a week and a half then a visit with my local doc followed by a visit to NJH, May 1. If CT Scan is still good I hope to be set free for awhile since meds stop April 30th. Whoohoo!

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@katemn

@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?)

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I”ve been using saline since I never feel like I know when to stop with the Aerotbika. I don’t see using the saline for the rest of my life though so this is good info. If I only have to do it a couple times, twice a day, then that is doable and something I can live with.

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@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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Dr Denlinger, go at 12 today. Sorry thought i said that last night, guess i was groggy. Lol.

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@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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@jenbalock. Ill be seeing Dr. DENLINGER, chief cardiothoracic surgerym. This will be my second visit with him. Im in Myrtle Beach, he travels this way to see patients but surgery is at MUSC if needed.

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@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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Yes. I know Dr. Denlinger. Good guy. I was going to ask him about my condition when I worked there but never did. Best of luck today! Let us know how it goes! – Jen

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