I’ve been reluctant to join a forum as I don’t feel like a lung disease patient yet, I guess I’m in a bit of denial still. I don’t suffer from many symptoms really, and the ones I do have seem really mild compared to others.
Last summer I had a CT scan on my heart which incidentally showed three pulmonary nodules on both of my lungs, one of which showed cavitation, and a few of cysts. I also have an area of what could be fibrosis. All my blood tests for infections and other common causes have all come back negative and my immune system is fine. I had a bronchoscopy done in October which showed I had a high leukocyte count but not much else. My doctors are all very stumped, I’m in my early 30’s and have never smoked, and apart from a little bit of a cough and some occasional breathlessness, I don’t have any symptoms. They are fairly confident I have some sort of ILD but are not sure. So I was referred for a surgical biopsy so we could perhaps get some answers.
I had a VATS wedge resection and lung biopsy done just over 4 weeks ago. The surgery went fine and they removed two of the nodules for testing. I’m all recovered now and back at work.
I haven’t heard anything at all, and obviously the wait is excruciating. I understand the NHS is under pressure and haven’t wanted to bother my doctors, I imagine things are moving forward. I was just wondering if anyone has had any experience waiting for surgical results, particularly for a potential ILD? I have no idea if 4-5 weeks is a long time to wait, should I have heard something by now? When would be an appropriate time to ring my consultant and see where things are at?
I feel really guilty about bothering anyone, but although I felt absolutely fine about it all before, my anxiety is now through the roof. I can’t sleep or concentrate on anything else, and feel bad about talking about it to anyone, just in case it all turns out to be nothing. But at the same time, I feel like my future is currently on hold until I know for sure, I feel unable to plan anything. I can’t leave my phone alone just incase it rings. If anyone has been through this I’d love to know how you coped.
Many thanks for reading!
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TheArm
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Hi and welcome. I haven't any experience of post op results but it does seem rather a long time for you not to have heard anything. You could try phoning your consultant's secretary, they are usually very helpful. Another option would be to phone your GP surgery to see if they have had any results sent to them. Best wishes.
Thankyou! I rang my consultant’s secretary earlier after all the advice and unfortunately it went to voicemail, I did leave a message and will ring back tomorrow if I’ve not heard anything. My GP had nothing on their system when I saw them a week ago, he wasn’t able to provide much help which was obviously no fault of his own! He seemed to sympathise with the situation.
If you still don't get through via the phone, try emailing the PAL's department at the hospital. Explain you are trying to get through to the secretary with no luck and could they possibly help. I have had to resort to that before now and you usually get a reply very quickly! PAL's is Patient Advice and Liaison Service. nhs.uk/nhs-services/hospita...
Hi, sorry to hear you're waiting so long. I had a vats procedure and biopsies last October and the surgeon came to see me the following day with my results. The consultant who made the referral to the surgical team had also arranged for a follow up meeting 2 weeks after the procedure. Unfortunately after 3 days post op I was discharged but taken back into the referring hospital for just over 2 weeks so I was given more information there. I would contact the consultant's secretary and enquire about your results and follow up.
I left a message on the answer machine for the secretary after reading the replies, fingers crossed will get some news soon. Sorry you went through all of those hospital visits, must have been such a scary time for you. Really hope things are going better for you now.
Hi, welcome to our forum. Four weeks sounds too long to me. Phoning your consultant's secretary is a good idea.
Also don't feel bad about talking to people in case it turns out to be nothing. If that happens, anyone you have spoken to will be happy for you. And without the surgical tests your medical people could not have known whether it is nothing or something. Put yourself out of your agony by phoning the secretary. Good luck
That’s too long. I know “no news is good news” but meanwhile you’re understandably anxious. Anyway there might be some treatment you could be having, to maintain things at the present mild stage. Definitely contact the secretary. I usually see if I can find an email address. Less easy to fob you off if you email.
Do NOT feel guilty! This is your health & there’s nothing more precious. We’ve all had to learn that if we don’t advocate for ourselves - even by being pushy if we have to - no one else will! It’s that simple
Thankyou so much! Yeah I’m starting to believe it is a bit too long now, I have given the secretary a call this afternoon, but she wasn’t in so I’ve left a message, if I don’t get a call back tomorrow I’ll try and ring again. I need to be brave and be a bit more persistent with them I think! I’d love to trust that it must be good news if I’ve not heard anything, but the speed they put me straight through to surgery worries me. I’d just love to know what they’re thinking so I can plan my life a little bit!
Hello there and welcome. 🤗 I am pleased they have caught this I think early on. As for bothering anyone when it comes to your health (which is so keenly connected to mental health) bothering a few people is the least of your worries. I live in Japan and things are different here from the U.K. so I cannot advise about procedure it is so different.
I hope you continue to update us on your progress. It really helps to have a forum to turn to. This forum has helped me immensely through my years with lung disease and subsequent transplant. Wishing you all the best.
They say believe in God and worrying is a waste of time but that is easier said than done unfortunately. May be a good thing that they didn't get back to you immediately! Noo news is good news. And after all the worrying in my life, I have found that things always do work out and end well. Pray and be thankful for all you have. Send out good vibes and they will return! Worrying is such a waste and and cant be helped. Keep us posted!
sorry for your wait to know what’s what. I agree secretary in the first instance. But if slow to get any response as happened to me try PALS. They liaised with the respiratory manager and was able to speak to her two days after and arrange a consultation. Best of luck and keep your chin up. You are not just a number
Hi and welcome to this friendly, funny and informative forum. 🙂 Please don't ever feel guilty about bothering anyone. It's your health, physical and mental and someone, somewhere knows the results. As others have said, consultant's secretaries are usually very efficient and good at chasing things.
Hi there my name is Deb, I had a VATS biopsy Nov 21, this was to confirm Idiopathic pulmonary fibrosis . I was sent to New cross hospital Wolverhampton because QE Birmingham had a very long waiting list (it took 8 months in the end). I had an appointment two weeks after to see someone who said it was inflammation so I was some what not too concerned.
I heard nothing from my consultant so thought things were ok . I decided to ring his secretary in the April who was very surprised I had t heard from them and arranged for a telephone consultation on 6th June. I was told I had got IPF, I felt gutted. I was put through various tests for lung transplantation .
My case had to be put to a multidisciplinary team who came up with the diagnosis .So my advice to you is ring your consultants secretary and get an answer because I know the wait caused me great anxiety.
Hi, to add my best wishes, agree that 4 weeks is too long - no wonder you're getting anxious - In my experience in Gloucestershire it takes ages to transfer anything digitally to my medical records at the surgery. When living in SW London I also received copies of consultants emails to the gp which I obviously keep.
You are absolutely right to be proactive in your own health, in our postcode lottery it's essential.
if I was anxious I'd be doing deep diaphragm breathing to de-stress, it's amazing as well as being brilliant for the lungs. Thinking of you and wishing all the best.
PS the members here have one or more of various lung diseases at various levels from very mild to severe. I have asthma and Small Airways Disease healthy diet, healthy weight and exercise are pretty important for most of us. Good luck TheArm, P
I hope the other posts you've received show you that you have every right to ask for your results. They must be in by now and probably have been for some time. (I'm speaking as one who has been waiting a month for a heart test result, which my GP surgery seems to have mislaid. Feel I've been a mug to wait so long.) Welcome to this forum. So you don't feel like a lung patient- good. You need your results to help you stay that way.
Hi there…. In my experience once the results are back they then book an MDT ( multi disciplinary team meeting), with all the relevant specialists, around the table to discuss your case. This is where they formulate the plan of your care, this may be the delay in waiting time, although 4 weeks is way too long. The NHS now has a system called MFT (my foundation trust) this is where you access ALL your medical records and results. You download the App and can see every test result in full detail, CT scans etc. I feel part of my care, it’s an amazing move forward. Check if your Trust is part of this.
You’re very young so you must make sure you’re seeing the best people available. There are centres of excellence in each area I’m at the North West lung centre, depends where you live. Good luck with everything and don’t be afraid to ask. X
Hi TheArm and welcome to the site. You have had some fabulous replies. As everybody has said its your health and you need answers, keep pushing x
hi, I had a partial lobectomy and lymph node removal 5 weeks ago. Had to have this as tumour in location that was unable to be accessed any other way. Same as you no diagnosis as of yet cos no results back. My discharge letter said 7/10 days so even allowing for delays this for me is unacceptable. I have and am hounding them as you should to, this is your life and the uncertainty of things is horrendous. In the end after trying several hospital avenues I contacted the Patient Relations Department, I’m sure each health authorities has them. Lo and behold within hours I had more responses than in weeks. Should have my results within days now. Suggest you do the same, don’t worry about bothering them your health comes first. Good Luck!
I’m so sorry you’ve had to deal with the waiting too, I’m so glad you managed to push things along and fingers crossed your results come back in a few days and are good news for you.
I had wonderful replies to my post I’m so grateful. I did ring my consultant but I’m the end managed to get in touch with another one of my doctors, who gave me results then and there. It was a huge weight off, but unfortunately the biopsy just created more questions so more tests are upcoming (in my case it’s not cancer they’re looking for but a potential interstitial lung disease/infection. My biopsy was negative for cancer anyway, which was expected but still good!). I’m at the ILD clinic on Monday so will hopefully know more then, it’s going to be a very long journey for a diagnosis I think.
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