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Awells
01-02-2009, 08:30 AM
It all started with a cough that wouldn’t go away....back in Sept. Diagnosed and treated for Bronchitis for 2 weeks which of course didn’t help..then treated as if it was simple post nasal drip for another couple of weeks...finally my doctor did a chest xray which showed a "spot" in my lung...a CT on 10/31 showed a tennis ball sized cavititating mass wrapped around my bronchial tubes and pressing hard into my right lung. Because of it’s location it was difficult for anyone to get a testable sample...they were afraid to open me up because cancer was the assumption from the time of the CT forward....2 bronc scopes, a fine needle biopsy, a thoracic scope all failed to get anything that could tell us what it was...finally on 11/23 they opened me up and got something they could work with....luckily cancer was ruled out but they still had no idea...many tests were being run but everything was coming back negative...the thoracic surgeon was in my room telling me that there were only a couple of tests left and they didn’t expect anything to come back positive...he was telling me that the only thing left to do was to try to remove it and run more tests if they were able to successfully remove it...his phone rang during our conversation with the positive result of Wegener’s...(this was on 12/1)

crackers
01-02-2009, 07:28 PM
welcome awells.this is the place to be for wg.i'm john,i've only been a member myself since november though i was diagnosed 2 years ago.non sufferers find it hard to understand what it's like to have wg so to have somewhere to come to vent your frustration or to ask advice is good.once again welcome.
john.

andrew
01-05-2009, 05:21 AM
Welcome to the site :-) That must have been a very stressful time wondering if you had cancer or not. Did they end up taking the mass out or did it deplete with WG Medication?

Awells
01-05-2009, 12:00 PM
It was extremely stessful, the CT on 10/31 said most likely malignant....they told us it was inoperable a couple of days later and that even the biopsy was going to be difficult...so, Wegener's was actually a blessing compared to what they thought. they can't remove it safely...I started treatment on 12/1 when they finally figured out what the mass was caused by...they are guessing 1 year to a year and a half before it is disolved enough to remove the balance....it was growing at a very fast rate...4.5cm on 10/31, 5.6cm 2 weeks later.

crackers
01-05-2009, 12:29 PM
strangely enough i do have something to thank wg for.my rheumy has always been of the opinion that there must be an infection however small causing my white cells to behave the way they are.i spent 2007 having a different test every week,in sept 2007 i went for a colonoscopy where they found a tumour.within a few days the tumour was removed but my colon perforated resulting in emergency surgery and a week in intensive care.i finished a 6 month weekly course of chemo in june and had a stoma reversal in sept 2008,and up to now all is well.as it turned out the cancer and the wg were not related but if wasn't for my rheumy sending me for tests the cancer would not have been discovered at such an early stage.every cloud eh.
john