Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Are lung nodules ever related to CREST?


  • Please log in to reply
6 replies to this topic

#1 Wohali

Wohali

    Senior Bronze Member

  • Members
  • PipPipPip
  • 72 posts

Posted 06 November 2008 - 05:21 PM

I just got the results back from my CT. It showed a marble size glass nodule in the right lung and also a nodule in the right breast. Does anyone know if this could be related to CREST? The whole reason I had the CT was because of having severe pain at the bottom of my ribcage so the dr thought it might be calcinosis or sclerderma issues. Now he is going to evaluate me for cancer, TB and sarcoidosis based on the CT results. I'm not sure what to think.

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,261 posts
  • Location:Minnesota

Posted 06 November 2008 - 05:35 PM

Hi Wohali,

I'm sorry to hear of your results. Please keep in mind that I'm not a doctor, I have no medical training at all. These don't sound like scleroderma things to me, so you would definitely want to find out what is causing them.

However, you will find those of us who also have or have had lung nodules or breast nodules; but that does not mean they are caused by scleroderma.

I have lung nodules (among many other things) for example, but they were stable after being followed for several years so they are a not a problem. Also many breast nodules are not cancerous. It might be a benign thing they can remove, and you'll be just dandy! Hold onto that comforting thought while you bear up under the testing.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Wohali

Wohali

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 72 posts

Posted 06 November 2008 - 06:01 PM

Hi Shelley,

Thanks for replying so quickly. I've been researching online tonight and discovered another possibility the dr didn't really mention. Ok well he did say the lung nodule might be "a fibrous scar from an old infection". However I ran across several articles mentioning Valley Fever, which is a not uncommon fungal infection in the SouthWest, can cause nodules. I live in a very dusty, windy part of Arizona...so I'm going to bring this up with him.

I'm debating now what is the best course of action. I am very leary of exposing myself to excessive radiation as many articles have come out how the medical community overexposes people to way to many unneeded catscans these days. So I am leary of getting a PETscan done. Also it occurs to me that the CT didn't "see" a lump in my left breast that I had bioposed several years ago yet it shows a nodule in the right side now. Could it be simple cyst that is showing up now on the right that can go away on its own as apparently what was on the left side is now gone.

I'm going to pick up a copy of the CT report and blood tests to look over myself.

#4 betty32506

betty32506

    Silver Member

  • Members
  • PipPipPipPip
  • 120 posts
  • Location:Pensacola, FL Extream NW FL_

Posted 06 November 2008 - 07:19 PM

2-3 years ago (lousy memory) I developed a cough that would progress until I would loose my breath. A lung doctor did a CatScan and found multiple, too many to count, in both lungs. Next he did a lung biopsy. The biopsy said they are calcified nodules. He did scans on 3 month time, then 6 months. Nothing has changed. The cough must not have been from that. It took a few weeks to clear up but it did.

He is checking me every 6 months. Last time I was there I asked how long before we could forget about them. He said he wants to follow them on a 6 month time for a while.

Incidentally, that is the doctor that did the autoimmune tests. He said take those labs to the rheumatologist. I did and she didn't even know what they were. The lung doctor said go to a different rheumatologist. That was where I got the sclero, and others, diagnosis. I even found that my diabetes was an autoimmune problem and not type 2 as had been supposed.

I fuss enough about bad doctors that I will add I am very impressed with this lung doctor.

I hope yours goes as well as mine have. I was exposed to asbestos so that is a reason to keep an eye on them.
Betty

#5 Wohali

Wohali

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 72 posts

Posted 07 November 2008 - 02:03 PM

Here's the latest- The doctor is concentrating on the nodules being of an infectious nature considering my history. I don't know if I mentioned it on here before but besides the CREST I have a history of Lyme disease, Rocky Mountain Spotted Fever and chronic viral infections-EBV, HHV6, HH7 and B19. Also have had pneumonia like 6 times in past 15 years and pertussis twice in past three years even though its supposedly impossible to have pertussis more than once because a normal person should build up antibodies after the initial infection. :blink: They finally just re-vaccinated me for pertussis a few months.

Today he did a TB skin test also blood tests for Valley Fever and "assorted tuberculin type infections". He also run some other tests which I am not familiar with though I remember one detects sarcoidosis.

My ANA was actually lower than usual at 1:320 which I find odd since I've been getting increased skin tightening in the past few weeks. How come I feel so awful when my ANA is low and when its super high I feel better? :mellow:

#6 canon

canon

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 312 posts

Posted 07 November 2008 - 07:41 PM

Hi Wohali,

Sorry for the news on your lungs but your doctor sounds cautious and concerned.

I was told my lung nodules are not related to scleroderma. They are being watched ever so slightly and was also told most older people have lung nodules. Depending on your symptoms and your doctors medical opinion is what treatment or non treatment or testing is based on I guess. My pulmonologist thinks one way and my Rheumatologist thinks another way. They will need to battle it out, I am too tired. I am ok with monitoring but not ok with no monitor since they are a relatively new find. My repeat chest CT is in December.

As for labs I am the same way; when the ANA is negative I feel pretty sick, when they are high I have felt good. Mine are either negative or high. Don't recall them ever being a low positive. The only other positives I've had are anticardiolipins.

With gentle thoughts.

Judy
A happy heart is good medicine.

#7 Wohali

Wohali

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 72 posts

Posted 08 November 2008 - 08:26 AM

I read up on Valley Fever last night and I have all the symptoms. Now I am on edge waiting for my blood test results. I'm a little angry that my doctors repeatedly dismissed me for the past 18 months while I complained of constant coughing, trouble breathing and coughing up bloody and black rubbery lumps. :angry: No wonder I have a lung nodule. Obviously I have had some kind of infection in my lungs.