Any advice for me?

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Hi there,

I'm new to this site, and I'm worried about what's coming next. The medics identified areas of opacity on my lungs through an X ray taken an A and E. I was recalled for as further X ray in October, and subsequent CT scan.  I've now been referred for a PEP scan and full lung function test and have been urgently referred in for a referral for the respiratory team at the hospital.

I thought it was a broken rib! Does anyone have any advice for me? I'm not in too much pain. I'd welcome chatting to anyone else who has been through similar.

I'm trying not to second guess the results of the next tests, but it is hard not to think of worst-case scenario. How do you stop your head falling off in the circumstances? It's all happening so quickly but not quick enough if you see what I mean. Not knowing what is wrong is the worst bit. Any advice gratefully received. 

  • Hi  and a welcome to the Online Community but so sorry to see you joining us.

    Going through diagnostic tests is such a stressful and challenging time but you have done the right thing in reaching out to a place where you can ask questions and getting support from others who have been on the ‘exact’ same journey.

    Although I have been living with and treated for an incurable type of Non Hodgkin's Lymphoma for over 23 year........ I also have Asbestosis so do understand the whole lung investigation journey. Put your trust in the respiratory team as they will guide you through everything.

    The not knowing is indeed very difficult but at this point in time you are a passenger on the journey, try and relax as best as you can, let the system do it's thing, don't do random google searches as this will completely confuse you and let's look for you to get clear answers soon.

    The Community is divided into support groups (discussion rooms) so if you do eventually find that you are diagnosed with a type of cancer you can look through this list where you will find all our many dedicated cancer support groups listed. These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

    The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support or just connect with a listening ear.  We also have our Ask an Expert section but do allow a few working days for a reply.

    Do get back to me if you need further help or just want to chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks Mike, just trying to go with it for now. Good advice on being a passenger, thank you. Slight smile

  • Hi,I’m sorry you have all this uncertainty.I found keeping as busy as possible helped and not thinking too far ahead.I just concentrated on one investigation at a time.It is hard though but I think you will feel better once you know what is wrong.Try and avoid google its easy to frighten yourself.It is difficult when all the tests are coming up at once.I hope you find the Macmillan community helpful.Best wishes Jane 

  • I have had lots of CT scan's.... but surprisingly never had a PET scan.

    The Lung Function test could be as simple as blowing into a machine or the ones I had required me to be sitting in a sealed perspex booth with a mouthpiece (like a scuba-diver) and various tests are done....... very easy and no problem whatsoever.

    I have had a CT Guided Lung Biopsy and on the whole this was straight forward although for me it was rather uncomfortable as I have Spinal Osteoarthritis so lying face down on the CT table with my arms above my head for a long-ish time was a challenge but these things have to be done.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you Jane. I just think we'll crack on to give the medics the information they need to figure out what is going on. Slight smile And Dr Google can do one!!! 

  • It all sounds frightening - I was a bag of nerves with the CT scan, it's not something I've had to do before. But like you say, these things need to be done. Slight smile

  • Hi 

    Just to say I’ve had a PET scan, and while it’s a bit different in terms of the time it takes, it’s really ok. You are injected with a tracer and then need to sit quietly for around an hour while it works it way round your body. The scan itself is much the same as a CT scan, and doesn’t take long. 

    It’s very hard not knowing what’s wrong, but the PET scan will add to the results already available and should give you the information you need. You just need to take things a day at a time for now, although from experience I know that’s difficult. Definitely keep away from Dr Google! 

    Sarah xx


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    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thanks Sarah. I'm having it tomorrow and had a full lung function test today. Best to get it all done to give the medics what they need and not give myself time to think! Thanks for your kindness. xx

  • Hi 

    I hope it all goes well tomorrow for you. If you have a cancer diagnosis, then please be assured that there will be lots of support within this community for you. Uncertainty is so hard to deal with, so I hope you’ll have a fuller picture very soon.

    Sarah xx


    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Good luck for tomorrow.I hope it all goes well.Love Jane xx