I was going to title this post as Pi***d Off. However, that would be rude even if it is true. The result of my lung biopsy are out and, basically, there is no result. The two good core samples I was told had been taken have really shown nothing of any consequence. So, after rafts of blood and sputum tests, a CT Scan a PET/CT Scan and a CT guided lung biopsy and waiting since December 16th 2015 I still do not know what this nodule/lesion in my lung is. I have an appointment with the Doc on Wednesday at 9 and I think they are going to say I need another biopsy done. Any more radiation I will glow in the dark. Are we likely to get a result from this one - any more than from the last one? If they carry on doing biopsies they can take the whole darn thing out little by little - lol. To cap that we were away since Thursday at a Wedding and then called in on my stepson and his girlfriend. We would have liked to stay longer and make a nice break of it but rushed home yesterday after only staying there one night because I had an appointment with the physio to start my bronchiectasis breathing exercises. At 9 this morning she phoned to say that she couldn't do anything until they knew what the lesion was. Why that has any bearing on the breathing exercises I do not know. We could go on for months before we find out what this darn thing is and so i can't do anything until then? Really fed up. I know there are worse things but I feel very frustrated at the moment.
Sian
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freefaller
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Such a shame - you must be so fed up - however it's good that they are still trying to get to the bottom of it and not just giving up so I hope you get some good results soon. Try to stay positive. x
Hi Sian, stay with it. That was me from November to March this year when I had a bronchoscopy then it was diagnosed. After my biopsy I was told not sure could be could not be. Frustrating and worrying but keep pestering until you know. Love Suzyxxx
Apparently a bronchoscopy would be useless for me because the nodule is too deep in the lung. They seem to have changed their tune now too as the nurse said yesterday that another option would be to wait 3 months and have another CT Scan to see if anything has changed. 2 weeks ago they said that if anything was going to change it would have already changed int he preceeding 2 months? I know medicine cannot be an exact science but I would like to know how the last two weeks has made a difference. What has really made me fed up is that my other half, bless his heart, has told a lot of his family and friends every detail. I have not even told most of my family as I see no need to until I know exactly what is happening. Some of my family have far worse worries than I have (like a 2 year old born with a terminal illness) so think it daft to tell them anything until I know something definite. Also it means that every time I have an appointment we get a lot of phone calls asking about it and I end up telling a half a dozen people the same story all the darn time. I am bored with the whole situation just living it I really don't need to tell the world and his wife all about it a dozen times a day. Mind, at the same time I am also amazed by the ones who don't ask or even telephone who you thought would be concerned - it is at times like this you know who your real friends are eh? I always say when the going gets tough - the tough talkers get going - you can't see their heels for dust. lol. Anyway how are you feeling Suzy? Hope things are a little brighter for you? Take care of yourself.
Thanks Sian, Not too good at moment but still positive. My Husband did same thing. When diagnosed I told my Husband and Son it was my life I would tell who I wanted to know. Next thing I know a few people on meeting them said I'm so so sorry to hear this. I blew my top. I hadn't come to terms with it myself. Must be a man thing. Still haven't told many people.
True I had to tell my Sons ex partner as they share the school run and with my Hospital Appointments and him coming with me to Chemo as Husband doesn't like Hospitals he would have days he couldn't do it. I put it off and off because she has never been one to keep a secret or trust. So now I don't have any idea who knows.
Yes it must be a man thing Suzy! Yet they say you can tell your husband/partner any secret because chances are they are not listening but when you actually want to tell them not to tell anyone at all they tell everyone! Anyway he had totally forgotten that we fell out about this 8 years ago when I told him my health was my business and I would tell the people who needed to know. I think only one friend and one relative actually knew about that. Apart from everyone Des told. Seen Doc. decided to go for other biopsy at hospital further away where the actual Doc (I think) will do the biopsy. He is quite hopeful that this will tell him more. They already had a date of 1st July for this biopsy. So, if it definitely is an aspergilloma then I will try my utmost to have a referral made to the National Aspergilloma Centre in Manchester even though the Doc has also referred me to a surgeon and the nodule will be taken out whatever it is it is just that if it is an aspergilloma he will need to take more care removing it than if it were sort of "any old" tumour. As for getting work projects finished my elderly Uncle (93) died yesterday so that may hold us back a little again! there has t be a post mortem and a Coroner's Inquiry as he had been released from hospital just hours before. so may have time to go away and finish some of the work as nieces away on holiday and my cousin's wife is going away at the end of this week too so probably nothing will be happening as regards a funeral for a couple of weeks. Got to go as my Aunt is being assessed by the psychiatrist - both her and her husband who have just died have had advanced dementia for years so this happens every so often. I am the only one who is capable of attending as no one slept last night which is understandable as it was such a shock. It was a shock for me too but I am not sad. Talking to my cousins is difficult because I can hear the sadness and feel the sadness in them and it is them I am sad for but really it was a great release for their Dad. To be honest I wish their Mum would die soon too as she doesn't realise most of the time that her own Mother is dead and she died over 60 years ago and Auntie Lil is distressed that no one told her. Whereas the truth is that Lil nursed her poor Mum for years when she had small children to look after. Anyway got to go now. Take care of yourself and hope you are OK and coping well with things.
Love and hugs and my thanks for your kind thougths
I do hope so. At present my life is on hold as I can't commit do doing much as I am always waiting for some appointment or other to come through. I would love a week or two free with no appointments whatsoever.
I really feel for you ,it's So frustrating and Annoying . it so hard when you don't know what your coping with . Keep fighting on they will get there if you keep on at them . Chin up girl we are all thinking of you .kookie
Thanks. Seeing the Doc early tomorrow morning, and am going to write out a load of questions for him today. So, no housework will get done! ha ha
Sian
No wonder you are fed up!!! What a bloody nightmare. The only bit of advise I could give is possibly ring the helpline they may be able to help - You can call the helpline on 03000 030 555 Lines are open Monday to Friday from 9am to 5pm. They may know a way to quicken things up! The very best of luck and much love, xxxx
Glad I did this as the BLF nurse has told me that I can get a referral to the National aspergilloma centre in Manchester on the blood tests results and the fact that I have a cavitating lesion that has been known to be in my lung for over 3 months. It will have been known to have been there for 3 months on June 28th. Now think I am going to cancel the second biopsy and get referred there asap as I think the specialists in Manchester will possibly have the experience to diagnose without further exposure to radiation and invasive tests that can and did give me an infection. I hope so anyway as that really concerns me almost as much as the lesion itself. I don't even care if I have to pay for a consultation there myself after all your health and well being are priceless. Funny but talking to a retired dentist friend of ours tonight whose wife, an anaesthetist, had a carcinoid lesion in her lung and has had a third of her lung removed sort of cleared my mind as his (sort of) medical reasoning and way of thinking helped clarify my thoughts. so glad he phoned this evening after I had got back from visiting my god daughter serendipity!
I am puzzled by this as I was given a ct scan and told it would be followed up with another scan in eight months time, no reason given. After the second ct scan was told your nodules have disappeared! didn't know I had any, just as well, saved some of the worry. I wonder if some nodules look more suspicious than others? Or some consultants are more thorough? Or maybe if you are 81 like me they are not so invasive? iris x
I know what you mean, it is been kept like a mushroom? I have lung and heart problems plus a few other bits thrown in for fun. I do understand why they want to confirm the lesion before treatment. I have RLD and fibrosis which if I over expand my lungs could cause tears or damages that would in turn give me more scaring that restricts the lungs even more. My last visit to hospital they did the usual obs in a nice comfy chair and then after some time called me into a room not far away for an ECG. The Doctor was opposite and followed me in and watched them do the ECG and saw how out of breath I was after the short walk. It changed his thinking on my conditions and it's affect on me.
It took me over 2 years to get a spirometry test at my GP sugary.
Your situation - playing the waiting game is similar to my husbands . Life now revolves around hospital and Dr appointments. Their job seems to be like being a detective - still haven't got to the bottom of my husband's constant mucus producing cough, swollen ankles etc.
Also understand your frustration of people ringing to check after every appointment same happens I our household.
Am so sorry that you are so frustrated at the moment, you must want to scream. Let's hope that it gets sorted out, sooner rather than later. Take care xx
Thanks Elaine. This is what I am thinking. The nurse has told me that the Docs quite often are over protective and want to do things straight away but sometimes things sort themselves out on their own. Fingers crossed.
I sympathise with you and so much frustrating time when you could spend it with your stepson. Oh I do hope something come of it. Exercise are usually good to improve health! There's a chap in the US who has based a whole motivation system based on imagery (seeing oneself well) and exercises).
I hope you can do some exercise to get you going. Most of all, enjoy the warm weather. Best wishes for your doctor's visit. Mic
Hi, so sorry to hear about your ordeals. I am just 71, and 10 years ago was diagnosed with copd, now classed as severe. I had just retired, and was looking forward to an active old age. Anyway, the care I have received till 18 months ago has all been with the gp. Last November was taken to hospital with pneumonia, and was there for 2 weeks. At first, they thought there may be a blood clot in lung, so did a scan. Very soon after, there were 4 round my bed saying there was no clot, but they found something in right lung. Next day, just one of them came. We agreed to call it cancer, and he was very relieved. After coming home, I had a PET scan and saw the cancer man 22 Dec. He showed the picture....red...looked like an old comic illustration...needed "splat" next to it. They can"t say 100% it is cancer. My copd is too severe to allow them to perform a biopsy. Also, I am too fragile for radio therapy. My hospital, in the NE is producing groundbreaking work, so if I can get stronger, I may be considered. This is not to make you more depressed. I have decided that because this was found by accident, and they assure me it is too small to be affecting me, to try to ignore it. Hmmm...debating moving..what do I do .
You are much younger than me. I think from your post. Live life to the full, and only go to scans if they will help in your treatment. This is what I am trying to do. The very best of luck to you, Pauline.
Hi hillview, keep positive and try to stay as healthy as you can. I'm 73 and have known since March cancer. Having chemo at moment. Not curable but told treatable.
Move or not to move? Oh dear give a lot of thought to it. Do you have a good support network where you live at the moment and if so would you have the same if you moved?
Thank you for your kind reply. Sorry to hear about your situation. Also it was good that you pointed out the pros and cons of moving. It is to a brand new purpose built complex with assisted living. I would keep the GP and medical people who help me now. The benefit would be having someone to do small jobs, lightbulbs etc, and even get a meal if I'm not up to it myself. The only change would be the local authority, as I live right on the border, and I have 2 perching stools, and a battery operated chair which is in the bath, and a huge help. But will not need it as everything will be designed to suit the needs of the not so mobile. Problem is it is massively popular, and so have no idea if I stand a chance. The problem is, selling my house, and just don't have the strength. Have 2 daughters, both working, one a single parent. She is a midwife, and works long and various shifts. mostly nights. If this happens through the week, Chloe stays with me, and is collected and taken to school the next morning. She starts secondary school in Sept , and will be able to walk to me in the new place. The other daughter has a toddler who is nearly 2, a part time hairdresser, and an on/off relationship. They both help me in different ways, but it is not regular, and I hate asking.
It also means I need 2 bedrooms, and don't know if they would allow it.
Sorry, just getting things off my chest...wish we could get rid of all things chest related! I do hope the treatment helps you and you are able to get enjoyment out of life.
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Still no diagnosis
Feeling overwhelmed and scared
feeling down…..and still confused about diagnosis….
Suspected lung cancer
