Shadow on my lungs

Recently I have had 2 CT scans, one with contrast, and they have found a 'shadow' on my lungs. I am now waiting for an appointment with a Lung doctor, the 'C' word has been mentioned!! I have Scleroderma with lung involvement, has anyone else been through something similar? I know I should wait be it is horrible waiting (3 weeks now!) My Lung function test remain the same (crap but stable), I do cough a lot, can have pains in my chest but not constant. How unlucky would I be to get SSC and Lung Cancer!!! all before my 40th birthday, on the plus side, since I got the call to say they had found a shadow I haven't been watching what I eat! it's so liberating, so what if I get fat!!! lol, strange emotions life throws at you.

25 Replies

  • I can understand how you are feeling. I am going on tuesday to the oncology department for blood tests. They rang me completely out of the blue 2 weeks ago to say i had to go. I have no idea what they are looking for. All they would say is they have found something in my blood which may or maynot be connected to the scleroderma. It is all very worrying, the not knowing and waiting is the worst.. on top of that i went to my doctor last week wiith a suspected prolapse and i have got appointment for scan tomorrow. It is very quick so i am worried about that as well. I hope your results are good it really is an awful disease

  • Well, I have had a prolapse and of all the things we can and do get with Scleroderma, that was pretty much the easiest and most straightforward to repair. My repair was done 20 years ago this year and I have had another small hitch-up in 2004 . The worst time of all was the 10 years before I had the nerve to ask what the problem was. I didn't know I had Scleroderma until 2003 so being young and uneducated I just didn't understand all those years ago what I was putting up with.

  • I have had the C word thrown at me too. I am loosing weight, size 10 too big now but they are still looking. I have had an endoscopy with samples taken, told duodenum ok! A scan of my lungs, abdomen and pelvis but gastroenterologist appointment not until end of September so bought a new dress and am off on holiday. Seriously at not yet 40 you have my sympathy at 74 I look back and remember the time at 40 when they said the same thing to me. Good luck, you have my sympathy or is it empathy?

  • My shadows turned out to be the mosaic pattern of interstitial lung disease that is common with Scleroderma,I have had Scleroderma for 14 yrs. and this was discovered 2 years ago. My pulmonologist prescribed 2 different inhalers,both made my breathing worse. Hopefully yours won't be the C either. Good Luck!!

  • I had a ct scan a few weeks ago and also had the call to say there was something. I am going down to London to see the lung Drs in about 10 days. I have had lung involvement for 10 years and am 45 now. Good luck to you, fingers crossed for us both. My cough now is very bad and have had it since December and like you my lung function tests have remained the same.

  • Sounds very like me, please let me know how you get on, I have been struggling to deal with it, can't seam to stop thinking about it, will get my lung biopsy 3rd week in Sept!!

  • I honestly think you'll be fine I had the same thing andmonths later had hundreds of spots. It's called Lung Fibrosis, they told me its scar tissue on the lungs. I honestly feel no different no shortness of breath, nothing. I don't use an inhaler either. It's common with scleroderma I've had it for 14years. I hope it all turns out okay. :)

  • I already have fibrosis, which has got worse, this is an unexplained shadow, I get severe shortness of breath which is getting worse month by month. I suppose I will just had to wait, my appointment is for the 3rd Sept!!!!!

  • I have Lung Fibrosis as part of the Scleroderma. I would have thought you would have heard something before now regarding your diagnosis, considering the seriousness of what your worries are.

    The waiting and uncertainty is the worst time.

    Chin up, things may not be as bad as you think. Take care.

  • I have just been in today to see my doctor and he gave me the bad news of something unusual on my lungs after my scan. I am to go as an emergency, within 2 weeks,cancer referral for my lungs. Quite what the outcome will be we don't know but he mentioned broncoscopies and perhaps more chemotherapy. It is nice to know I can share this with somone else.

  • It is so good to share, sorry about your results, I will keep my fingers crossed for you, I have had my appointment through today and it is for the 3rd September which surprised me as Cancer was mentioned, that will be 6 weeks after the CT scan I see the consultant!!! hate the wait.

  • My orininal appointment was September 30th but my G.P changed that.

  • I now have 4 appointments. One on friday ,one on Monday one on Wednesday and one the end of September!

  • Wow, that's full on and scary, I have just had a call and I have an appointment today at 1pm, they have had a cancellation!!! not prepared!! going to have to close my shop to attend but it's better than waiting. Please let me know how you get on, we are not alone in all this but sometimes it feels like it. I have just told my partner, sister-in-law and best friend, haven't plucked up the courage to tell my Mum yet, if it is bad she will fall to pieces!!! she struggles as it is with what I deal with now!! added burden. I keep it all in as it is easier than dealing with other peoples emotions.

    I will keep my fingers crossed for you, be strong, just take what they throw at you and fight on.


  • Thanks for your kind thoughts. Good luck with your appointment.

    I haven't told anyone but my husband and you. A level results today ! Taking up their worries at the moment. I have a friend who seems to be aware of changes in me but there will be something to tell after these appointments.

  • One appointment down. Bronchoscopy next

  • had a cancellation appointment yesterday, they want to do a Lung Biopsy using CT guidance, small lump/mass in the bottom of one lung!!! can't agree what it is so it needs testing!! I am flying out to Amsterdam on the 8th Sept so they are happy to wait till after that as there is a real possibility the lung and leak air or collapse!!! So at least I get a 3 day holiday before possible health hell!!! Good luck with your Bronchoscopy, will Google it. xx

  • If they can't get a result with my bronchoscopy I have to have a biopsy the week after. I have to have a brain scan too because of the headaches and on Monday I have to see a specialist about the results of my gatroscopy. They did blood tests today, all 9 files of blood!! I' ve lost another 2 lbs since 2 weeks ago so my size 10 looks looser. I was a size 16 and had never been thin but I have no bust now and was DD before, thats the worst bit oh and the spare skin. Keep eating and enjoy your holiday. Let me know how you get on.

  • I am a very good size 16, love my food, I have had trouble with swallowing etc, bringing food back up as it sits in my wind pipe, they put me on Domperidone which has helped a treat. They had to stab me 5 times yesterday to get just 4 file of blood, 3 in my hand!!!! not good when you have tight skin coz of the scleroderma. I am also a DD, probably really and E!!!!! it would be weird being a size 10!!!! shame we have to get ill to get there! Just took the dogs for a walk and it took me 15 mins to get up a small but steep hill, thought I was going to pass out!!!! and there was no one around and I didn't tell my other half which way I was going!!! very scary, have just learnt a lesson.

  • Good for you. I ended up in A &E 2 weeks ago when I collapsed in a shop! My husband shadows me now at times so I am more careful.

    I saw a speech therapist about my swallowing and she said that the soft pallet wasn't raising and to sit bolt upright at a table, tilt my head forward then swallow. I still use a straw for fluids but also all my food, with some exception is liquidized to a porridge like consistancy.

    They use the smallest needle now to get my blood and I wear my gloves until she is ready.

  • Good luck to you both. I had a bronchoscopy on Monday at The Royal Brompton and they took a small sample/biopsy it was a walk in the park although I have felt as though i have flu since but this is normal. I also have lung fibrosis and have had it for 10 years. I had a full lung biopsy about 10 years ago- in through the ribs, high dependancy unit and a long long recovery afterwards - so in comparison your bronchoscopy will be ok. The main thing is to get a diagnosis and treatment. My cough is the worse thing now and it does worry me and my children. I just have to wait now for the results and blood works. I had 14 files taken as i Had signed up to research tests too. My parents worry too because we lost my sister in 1997. Please be positive i am certain it helps. They also struggle to take my blood as the veins are so small and the cold causes problems. They had several goes and they eventually put the canula in the outside of my left arm.

    Take care, thinking of you all

  • Thanks for your words, I am having a CT guided Biopsy, I hope I recover quickly, they say if my lung doesn't collapse I can go to work the next day!!! I also suffer from virtually NO VEINS, it took them 5 goes last week and now my poor hands are all bruised, looks awful, really worried about needing a canula in when I go for my Biopsy, almost more worried about that than the biopsy!!

    I feel for your parents, my Mum is making a mad dash up here today, to Scotland from Manchester, as she thinks I am on my way out!!! My partner has no Family as well so if I go, he will have no one, that really worries me, we are close and he doesn't really have any 'close' friends, lots of people we know, but not close friends. So much guilt goes along with being ill.

  • I have had my bronchoscopy and am waiting for the brain scan. My PET scan is on Saturday . I feel calmer now but need the answer.

  • Hi, I had my PET scan yesterday, it was fine, easy enough, just all seamed so very serious and made me quite emotional and fearful of what lies ahead. I do feel a bit better though as I am one step closer, although I want to know the answer, in a way I don't, if I don't know it might not be real!! weird things go through your head. I haven't done any ordering in the shop since this all started and it's looking empty now, very sad putting eveything on hold, in a few days, depending on the results, I may be putting up closing down sale!! I dreamt of having this shop for so long, it would be extremely sad to have to give it up, then the money issue comes in to play, I can't afford to be ill.

    Don't worry about the PET scan, it is easy, I watched 'Homes under the hammer' while I was waiting the the stuff to works its way around my body.

    Fingers crossed for us both xx

  • I had my PET scan on Saturday. On Friday I had been told that my shadow was a non small cell carcinoma and I now go for a head scan to check for secondaries then see the oncologist on the 5th or 12th to discuss treatment. It is all so quick all in just 5 weeks. Its a lot to take in. I am fortunate that I do not have to make any major changes in my life like Basset. I have a supporting husband who has been taking me back and forth for my Scleroderma appointments for the last 2 years so he will continue as long as necessary.Hope is a good thing and you must have hope, new plans and determination to fight it.

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