Anxious and Scared - positive help please

Hi, When my 82 year old mother was diagnosed with lung cancer a year ago, I cared for her for the 5 months until she passed away in July 2012 - so when she was gone I decided I really needed to check out my own lungs after many years of thinking it was probably just about getting older that I struggled to climb hills when out hiking with my family. (I'm 57).

After a chest x-ray, followed by a referral to Chest Specialist and a CT scan, Last Thursday I went for the results (my GP practice suggested it could be bronchiectasis, which I had by then researched and was prepared for) but I have now been told that I have scarring on my lungs, but no evidence of cancer. The registrar offered a biopsy or follow up in 3/4 months and said that my lung function tests were OK.

My immediate reaction was, if you don't think it's cancer, why are you offering me a biopsy? Anyway, I left his office rather stunned and went straight home to investigate what lung scarring actually mean't. Since then I have worked myself into a bit of a state. Suddenly thinking that maybe I only have a few years left and feeling tearful and worried.

My husband works abroad and our plans were for him to retire early, in early 2014 and we have so many plans......I feel numb and I really don't know what to do! I just want to talk to my mum, who was my best friend.

I'm probably getting it all out of proportion, but I've been lucky enough to have been pretty healthy all my life and now I just want this problem to disappear. I feel like I'm feeling worse since I had the appointment - but I know it's just the knot in my stomach and the lump in my throat from feeling so worried, nervous, anxious, and every other emotion.

My daughter also works abroad and my son is in London, just feeling a bit lost and don't really want to talk to my family about this as I don't want to upset them.

Would be good to hear any positive experiences you've had to keep my spirits up and stop me slipping (stupidly) into a depression......

32 Replies

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  • So sorry about your mum it is hard caring for someone when you are unwell yourself, but I hope my experience helps you to stop worrying as much.

    I have had a cough since January 2012 non-stop, a total of 12 months, coughing up nasty stuff, been to the doctors who said it was allergies, I am on nasal sprays, anti-histamines, tablets and nothing works, I was losing weight also, so one day I saw a different doctor who referred me straight to the Chest clinic specialist. By then I had lost three stones in weight, I was coughing day in and day out, I had every type off blood test done, sputum tests done for Tuberculosis, everything came back clear, the specialist sent me for a CT full body scan as he thought I had cancer. When the results came back they found nothing at all apart from what he called, slight scarring of my lower lungs which he said he was not at all bothered about. He said he had done everything he could and could not give me an explanation as to why I was losing weight and still had this cough. He has now decided to refer me to ENT as he thinks I may have post-nasal drip. I see them next month.

    I am the carer to my husband who has COPD AND Bronchiectasis and wants everything doing for him. Even though I have been through all this and am still coughing up gunk he tells me that his illness comes first as I have been given the all clear. Our sons don't live near so I am on my own with everything, fetching and carrying for him.

    All I can tell you is to wait for the biopsy result, I wasn't offered a biopsy when I was told my lungs were scarred, and I look at it this way, I have had this for 12 months and if it was serious I would have been dead now. So try not to worry, if you can.

    Good luck and stop reading about your ailments on the website.

  • Sweetthing - you sound just like me before diagnosis. Cough and weight loss.

    I do hope they get to the root of your troubles.

    Marie x

  • Thanks sweething, and I'm really sorry you are having such a hard time. Xxx

  • Hi Millflick, your anxiety is obvious, which will not help your health! Try to stay calm. There are many positive stories on this site but I think you need more than that at the moment. My best suggestion is to ring the BLF help line on 03000 030 555, where you will be able to speak to someone who really knows what they are talking about. Good luck. x

  • Thank you aunty Mary, xx

  • Hi

    I suffer from Sarcoidosis and Bronchiectasis and have scarring in my lungs from both. A biopsy isn't just there to check for cancer. Whilst they are 99% certain I have sarcoidosis the only way they can be 100% certain would be to biopsy my lungs (something they are unable to do because they are in a pretty bad way). The fact that your lung function tests are ok is a pretty good sign.

    Please please try not to worry. You have had a CT scan and the results were ok and its not cancer. it might be bronchiectasis - its not very nice but its manageable. As auntymary says - ring the BLF.

    You aren't helping yourself or your health by worrying.

    Good luck

    Marie x

  • I know I'm not Marie, I'm normally such an upbeat person, this has really knocked me for six. I guess deep down I thought the results would come back as normal! I also think its so soon after losing my mum that I'm not in a good place at present. Xx

  • Hi Millflick.

    Back in August I wrote a blog on what it felt like when I was first diagnosed.

    blf.healthunlocked.com/blog...

    I've had scars on my lungs since my early 20s following TB and up until I was diagnosed with COPD in my mid-50s it didn't particularly have much of an impact on my life. I've just turned 59.

    I know it's difficult, but try not to panic, and take everything you read on the Internet with a pinch of salt.

    One big positive thing COPD has taught me is to enjoy life today!

    Take care,

    Carrie

  • Thanks Carrie, I hope I feel like you soon xx

  • Hello

    Its really lovely to hear from you and I admire that you have been able to reach out rather than worrying and keeping things to yourself. Many people find the forum of tremendous help and support. If you would also like to call the helpline - 03000 030 555 for a confidential chat it would be lovely to hear from you, all calls are in confidence, we have a counselling service (for one off calls or a series of sessions) and also nurses avaialable to answer any medical questions. It can be very therapeutic to be able to talk to someone outside of the family which can enable you to be completely open about your concerns and worries and in time be able to work out a plan of action and also take away some strategies to cope with the feelings of anxiety. You may contact also us direct at the helpline via email if you feel this is easier? Good luck and we look forward to hearing from you.

  • Hello I just want to echo the good advice you've already been given, try not to panic and ring the helpline and come back and chat to us.

    Kim xxxx

  • Thanks Kim, I did what you said. Please read all my other answers below xx

  • Hi Milliflick!

    You have just described exactly how I felt when I was told I had IPF. The symptoms & the diagnosis may be different but I think most people on this site will have had the same feelings of shock, anxiety, disbelief etc.

    I think HelenChinnery's (BLF) suggestion of maybe e-mailing their helpline would be a good idea because I don't know about you but I found I just started to cry even talking about it but somehow writing thoughts/worries down seems easier. CarrieMe's blog is also very uplifting and worth a read.

    I wasn't offered a biopsy but I believe that is the only way that the medical profession can give a 100% accurate diagnosis so don't automatically think it's because they think you have something serious.

    I would urge you when reading anything on the Internet (even this site) to not just home in on the negative stuff & ignore the positive. I have had scarring on my lungs for 5 years now and I still go for walks, swim, do Pilates, have a very active "personal" life :-) despite the fact that I sometimes get out of breath and cough etc. Try to "keep your pecker up" . Hug. X

    Mapal (Syl really but my friend calls me ma (my) pal - get it? :-) )

  • Thanks Syl/Mapal........sounds like you know what I'm going through xxx

  • It's quite natural to panic when test results show something like scarring on the lungs.

    In my case it was the junior doctors at the hospital that got into a panic when they got my results when I was in once following severe breathing difficulties. The put me on 15 minute observations as they were worried that the blood clots they saw on my lungs would detach and head for my heart. I was injected with Warfarin and booked in a for a CT scan, which had to be done at another hospital so I was whizzed over with a nurse checking me all the way.

    I had tried to tell them what it was, but they would not listen. I knew I had scar tissue from having had pneumonia, on an x-ray they look like blood clots, but they're not. The consultant got the CT results and promptly yelled at the juniors for wasting everyone's time ! He wasn't amused.

    As others have mentioned, having a biopsy does not mean cancer is present. It just a means to find out what is going on in your lungs, what cells are damaged, what bugs are causing problems. They may want to know the cause of the scar tissue. I knew what mine was, but it sounds like you don't know how you got yours?

    If you have not already done so, call the BLF helpline and have a chat. They can help go over the situation with you and, if needs be, give you questions to ask your GP or consultant if you are still anxious.

    You've had a CT scan,, they've not put you on any medication or other treatment, but you've a follow-up to come. If there was any concern they would have done something about it, so be assured that they're not worried about you, and they're the experts.

  • Hi Gordon, there are several things that could have caused scarring on my lungs. I had pneumonia and pleurisy about 25 years ago. I smoked for about 15 years ( gave up 27 years ago) I also suffered from SLE (systemic lupus erythematosis) from the age of 18 to 30. I think any of those could be the culprit. I'm just not sure what happens now, whether the scarring becomes one of the diseases that progressively worsens, and if so, how fast? Thanks for your reply

  • Thank you everyone.....waiting for a nurse from BLF to call me back, I will let you know how it went xx

  • Plenty of good positive advice Milflick. The things is you are writing the feelings of almost all of us.

    I was so frightened until I was given my prognosis emphysema but along came the dreaded depression. There is nothing stupid about that it has a will of it's own but I tell myself 'It passes' and it does. Sending hugs and crossing fingers that you may be cancer free and able to cope with whatever life throws your way. Whatever happens you have the support of the lovely people on here.

    Gina x x x

  • Thank you Gina xx

  • Hi Milflick. As so many people say ring the BLF helpline. The experienced nurses there will help and talk you through your fears. They have been of tremendous help to me. I think the uncertainty is the worst. We have all been there with the depression. You will get through it and you are not alone whilst you have the BLF and members. Good luck Katie JJ

  • Thanks Katie.....have you had a definitive diagnosis?

  • Be positive or at least try, things are never as bad as you think. You wll have lots of support and help from this site, I'm sure at a time like this you could do with your husband around.

    i expect you will still be doing some of the things you planned in retirement. I am amazed at what I can do sometimes even with COPd.

    Lib x

  • Thanks Lib xxx

  • I also have scarring due to a very aggressive peumonia but as far as I can tell they only affect the gas exchange too and from the blood. If your lung function shows good then you should be fine. Try not to let your fears get in the way of living your life as you probably have nothing to worry about.

  • I had pneumonia and pleurisy about 25 years ago.....thanks for your response

  • Ha ha.....made me laugh!

  • Thanks guys.....the nurse from BLF was lovely and chatted to me for half an hour. On her advice I rang the hospital and asked for an appointment to see the respiratory specialist nurse. Unfortunately that is not possible at my hospital!! I spoke to the consultants secretary, who offered to get the registrar I saw to ring me, but as he didn't fill me will confidence, I didn't think that would help. Anyway, she offered to send me a copy of the report from the CT scan once it was typed up, (they are behind with paperwork) if the consultant agreed to it. I said its pointless going to see my GP to talk about it then, if the report hasn't been sent out yet. So at the moment I'm back to square one. By the way, for now I've refused the biopsy as several people (including the registrar) told me it was very painful and may even make matters worse!!! So I will take your advice and just carry on as normal until my next appointment in early May. Thank you all.....particularly Booker4......that made me laugh!!

  • Hi I know how scaring it is when you have always been healthy but now your body is letting you down a bit. I hope now that you have some more information you are feeling less anxious. Don't forget you are still grieving for your mum too which makes everything seem worse.

    Bev x

  • Thanks Bev, it seems kind of selfish, but when you've been relatively healthy all your life, it's almost a given that you will stay that way. I guess after what happened with mum, I should have realised these things don't just happen to OTHER people. I DO feel better after reading all your comments, thank you all. Xx

  • I had a lung biopsy 3 months ago and it wasn't at all painful in fact I quite enjoyed the rest in hospital, I was in The Heath in Cardiff and can't fault it, brilliant treatment - even a choice of food. It was my first ever stay in hospital so I was a bit nervous.

  • Was it the type where they make 3 incisions? It's good to hear if it is. Thanks Dully!

  • Millflick

    I had pneumonia twelve years ago which resulted in a scar on the middle lobe of the right lung and I was frightened to death (an understatement to say the least) when the Consultant said they would like to carry out a biopsy to eliminate the possibility of cancer. The day of the biopsy came, it was to be a needle lung biopsy on a day case basis. Terrified, I took some Valium before leaving home and my husband half carried me to the day case unit where I was given a bed and very shortly taken to the theatre. I was put on a special bed which went under a scanner and I was given instructions of when to breathe etc. Firstly I had an injection in my arm - this was a contrast dye to show everything up and it didn't hurt. The Radiologist was going to insert a long biopsy needle into the "scar" (and I'm terrified of needles). I asked him if I could lie on my front so I couldn't see the needle going in if he put it in my back and he was able to do this without ANY pain at all. I was wheeled back to my bed and told to lie flat for at least four hours in case the lung collapsed . Have to say that was the most uncomfortable part lying on this rock hard bed!!! I went home later that day quite happy. Some three months later I had a repeat biopsy after which the Docs seemed happy but I did have frequent X Rays/scans for about a year to check that the scar was not growing - it's still there to this day and hasn't grown.

    There does seem to be differing types of biopsy - the ones I had didn't require any incisions.

    Hoping all goes well for you

    Jemma xxx

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