Bulge on chest X-ray.

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hi, am new here so will give a little background. I was diagnosed with sarcoidosis in 2008. Had a biopsy taken from lung which confirmed it. I didn't have any bother from it just annual X-rays and to monitor things. Anyhow fast forward to 2016, had my chest X-ray the other day and dr called to say I need a ct as there's a bulge on the xray! He thinks it's scarring from the sarcoidosis, also had a bad case of bronchitis last xmas. I've been worried sick incase it's cancer!! I'm thinking the fact they said "bulge" and not "mass" is a good sign? And the fact that they're sending an appointment through the post. I dunno, just wondered if any of you fellow sufferes had experienced anything similar! Thanks!😜

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  • Posted

    Hello Claire.  Ive had sarcoidosis of the lungs for approximately 5 years.  I was first treated for pneumonia and bronchitis.  When i was referred to a pulmonologist he performed a procedure that introduced a solution into my lungs.  When the solution was analyzed, it was a confirmation of sarcoidosis  Ive had times of remission and times of terrible coughing that interrupted my sleep.  Im on a tapered dose of prednisone just now.  Started with 30 mg, will soon taper to 20 then 10.  Dont be afraid.  Sometimes they use the term "hilar'. Try to exercise, eat healthy, when you can.   I'm 64 years old.  Try to research breathing exercises.  Yoga is also very helpful.    Some only suffer from an initial episode, then it never comes back (this happened to my stepson).  He had a swelling on the left side of his neck.  He was given steroids and never had another episode.  Good luck to you.  If you are a person of faith, place your worries in the hand of your higher power.  

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  • Posted

    Hello Claire, yes I was diagnosed in late 2008 whilst visiting my thoracic specialist for asthma which I have had since 1982.

    Looking on the X-rays, he saw the signs of lung scarring and diagnosed sarcoidosis. At that stage, it was a very small cluster, in fact too small to treat.

    5 years later......

    October 2013, my right eye was painful and bloodshot, told by my optometrist I had stage 4 uveitis and she booked an urgent appointment at an opthalmologist. Given prednisolone eye drops and it cleared.

    December 25th 2013, I wasn't feeling well at all that day and my left eye had blown up the same as the right eye. Next day I had an emergency booking at the hospital eye clinic. Diagnosed with stage 4 uveitis and given a chest X-ray.

    At that point I didn't connect the dots and had no idea that uveitis is a sign of sarcoidosis elsewhere in the body. In my case it was my lungs.

    The sarcoisosis had spread to the rest of my lungs causing very tight breathing and general feeling of malaise, fatigue and lethargy.

    Two long courses of prednisolone starting at 50mg/day in 2014 and 2015,

    (the first course worked but it returned in 2015) I have been sarcoid free for about a year.

    I won't bore you with the side effects I suffered from the prednisolone, but there are many.

    The sarcoidosis is also responsible for a range of nasty symptoms too.

    If you want to have a reasonable idea of what to expect, try looking up my previous posts in other threads.

    I wish you all the best for the future, Claire.

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    • Posted

      Thanks for replying guys. Since my last post my dr phones to say the xray showed soft tissue density. I have a cat scan (with contrast) booked for next week. The symptoms this time seem to be mainly the pain in my lung which is effecting my lymph nodes around the chest/armpit. Dr has said based on my history and the xray he suspects it'll confirm its sarcoid and he will see if it's active (it bloody feels active!!) I'm trying to relax, I'm a very anxious person at the best of times and in the last 6 months I've had surgery (c-section), then we moved house and have 3 crazy boys at home.....its been a very stressful time and I think it's triggered the sarcoidosis. Hope you are not suffering too much!😜

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    • Posted

      Hello Claire, I made a mistake when I said I was "sarcoid free".

      I only realised this after I had posted it and there is no editing to correct it.

      What I meant to say was, the sarcoid hasn't spread further or worsened. The fact is, there is no cure, it can only be controlled.

      I am not convinced enough to say I am in remission. I keep getting uveitis flare ups and this alone causes me anxiety because of the possiblility of the sarcoid reactivating.

      You have my full  sympathy Claire. Please try to releive your stress, try yoga or if the weather isn't too cold, go for a walk.

      My thorasic specialist told me exercise is important. I was already doing my daily walks, even if I didn't feel all that well. As I live near the coast, the beach, the sea breezes and sound of the beach had a theraputic effect on me.

      If your breathing gets tight and painful, try doing diaphramatic breathing.

      You will need to be given a bit of slack as it were. If indeed you have sarcoid and take medication, you will suffer side effects. Other members of your family will need to understand this. Fatigue and constant tiredness, depending on the medication you have will be your constant companion.

      What side effects and of what severity varies with everyone.

      I sincerely hope you only have the sarcoid that clears up completely. I'm one of the sufferers that has the chronic type.

      All the best. 

      Emis Moderator comment: I have removed the link as users can easily find the information using a search engine rather than linking to a specific website. If users want the specific link use the Private Message service to exchange.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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