New Here Pulmonary Fibrosis

New Here Pulmonary Fibrosis

Hi I've had a time of it healthwise since the end of 2012. Had bilateral pulmonary embolism Oct 2012 from this I was diagnosed with breast cancer, had all treatment which finished in June 2013- got more short of breath during radiotherapy where it was suspected that they had skliffed my left lung. Ongoing issues with SOB - I was diagnosed with pulmonary fibrosis which had been deteriating quite quickly- had a CT scan in May followed by a broncos copy last Wednesday - consultant took images & 2 biopsy's of each lung- he said they are trying to find out why my fibrosis is still progressing as my CT scan showed new inflammation on both lungs & by now radiotherapy should be long gone from my system. I've to go onto steroids to see if they can stabilise it.

Very worried think they may be looking at idiopathic pulmonary fibrosis.

Is there anyone who has this & could give me some advice please.



9 Replies

  • hello Ella,

    Welcome to this lovely friendly site. You have had a very hard time of it, and you are such a beautiful young lady. I have a different condition, so can't give advice, but you will get lots of help on here. I have a young friend who had breast cancer and the radiotherapy left her with bronchiectasis, which is my condition. Not sure where mine came from, could have been pleurisy as a baby in 1934, no antibiotics then.

    Try to keep positive, you have youth on your side, and sounds like the medics are trying to find the answer. Love Iris x

  • Thx Iris so kind if you to reply. Good to speak to others with lung conditions - still trying to get my head around all this.

    E x

  • Hi Elaine

    A very warm welcome to you, although I am so sorry you have had and are having such a rough time. My lung conditions are also different to the one you have but I hope one of our lovely members with pf will be along soon.

    I hope the steroids do stableise the condition for you.

    Please let us know how you get on.

    love cx

  • Hello Elaine. Welcome to this site. I don't write very often because by the time I get round to it someone has already said exactly what I was going to say or they have given better advise. I mostly read everyone's input and this puts a smile on my face and sets me off for the rest of the day. I have been diagnosed with IPF back in 2005. I am 67 and you are still quite young, so that is a positive for you. What hospital are you attending? I'm at the Brompton in London and they are considered one of the best for lung problems. You have been through so much, so I am sure you are in good hands. The doctors will try to stop or lessen the inflammation and that is why they will give you a course of steroids. It might be a good idea in the meantime for you to join the pulmonary fibrosis uk support group on facebook. There are many people there who have the same disease and will share their experiences with you. Do keep coming back here though as this site is a tonic.

  • Hi sorry to hear about all your problems .. Might be worth asking you docs about radiation fibrosis

  • Hello Ella, very bad ride for you, looking at your photo your gorgeous, plus look so well and healthy, not sure when this was taken. Try to keep strong and positive I also have different problems, but the key is as advised. Hope you do well

  • Awwww thx June this was taken in 2013 - 3 days post breast surgery WLE. Looking more tired now & put on a bit of weight with my hormone treatment which is my anti cancer drug- have lost a bit again, I know this is a symptom of IPF.

    D3nis my consultant is aware of the radiation fibrosis but said as this was 2013 it shouldn't be still causing inflammation. He has taken biopsy's from both lungs to try & determine where it's coming from- so hoping he finds an answer that is treatable. My GP has said it could be the radiotherapy that has triggered an underlying problem.

    Thx Little Lung Lulu- cute name he,he, he - I will look on FB for the IPF site & join.

    I will keep in touch with you all with any developments.

    Thanks again.

    E x

  • The site on Facebook is Pulmonary Fibrosis Uk brilliant site for all us IPF sufferers,over a thousand members on there we all support each other,I really do hope it is not IPF ,not a good outcome,but if they find its PF that is much better as they can usually treat it.If it is IPF you will need to be seen at a specialist centre,although I live inBirmingham I travel to Papworth in Cambridgeshire,This site also has links to IPF as the BLF is fighting our corner,I wish you well.Sooki.

  • Thanks Sooki I have joined the FB site & just introduced myself with a very long post lol- had so much going on. Will hopefully catch up with you there.

    E x

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