I've been told over the phone today (by my gp because I wanted to know my results)that one of my three lung nodules has grown from 6mm to 7mm since my first scan three months ago. I'm really worried, I phoned the respiratory secretaries to ask what happens next, to be abruptly told that the consultant will phone me at some point! He has only phoned me once since I was referred in March, never met me once.
Lung Nodule advice please?: I've been... - The Roy Castle Lu...
The Roy Castle Lung Cancer Foundation
I have 3 lung nodules on my left lower lobe and next Thursday morning I'm going into hospital for a operation to remove the lower lobe. They said I could wait and keep an eye on them but if they spread they may not operate. So I decided to get rid of the cancer and hope it doesn't come back anywhere else. There is no cancer visible anywhere else so get rid of it. You didn't say whether the consultant was an oncologist or surgeon. Usually in your case they will have an mdt. meeting and work out what's the best treatment. My cancer is a spread from my bowel 6 years ago. I've had 3 operations so far . Bowel resection a section of lower left lung removed and a debulking in my windpipe. I know it's a very worrying time but you learn to live with it. A lot of distraction helps. I run and cycle and I'm still a very fit 67 year old. My advice is to get to know as much about what's going on and what might happen and be prepared. Keep fit and active. If you do need surgery in the future you will bounce back faster. I know everyone will say not to worry but you can't help it. It's all over the tv reminding you all the time, thats why you need plenty distractions to take your mind off it. Best of luck for the future and I hope everything goes well. Tom.
Good to know of your recovery and attitude from your surgery - my dad had bowel cancer in his 50s twice and two resections and returned to work until he was 62. He had another bowel cancer and major resection 3 years ago and was 90 in February - like you he remained active and mentally agile too. I think distracting yourself and keeping active, helping others where possible to help yourself mentally are great approaches as well as learning about whatever conditions you have. Worrying about conditions you might develop as a result of some early markers may be less good for mental health - I now try and deal with the 'what is' not the 'what if'. and like you, learn to live with the situation. keep up the good progress you're making....
Thankyou very much for your kind reply. The Consultant is Respiratory only, he first phoned me March and briefly said "I'm not concerned about the nodules, we'll repeat scan in three months" before he could hang up I asked what he can do about the breathlessness that I was experiencing at the time "he said we'll do some tests after covid" that was my one and only contact with him. I'm not under the care of Oncology. I have a nurse friend who works closely with a variety of Consultants so she's going to ask for a recommendation for me, as I really need a better Consultant team. I'm a nurse myself and it's been an eye opener with the poor attitudes and lack of care that I've experienced since December, it's nothing to do with covid either.
That sounds awful - they at least should reassure you why they're waiting 3 months for observation - hopefully the guidelines I sent the link for show the waiting/observation recommended gaps - I've had severe breathlessness on several chest infections that have hospitalised me since my lobectomy.
I initially recovered well but in 2015 ended up in hospital with a chest infection, that resulted in a trapped ulna nerve in my elbow that required surgery in Nov 2015. I developed pneumonia in Dec 2016 then pseudomonas (whilst in hospital) which hospitalised me for 14 nights in May 2017, Jan 2019 put into isolation with RSV. Last year breathlessness was awful after RSV - I'm usually fit and active, and work all over the country but could only manage a few steps. It was affecting my work and being self employed, there's no sick pay so tried to muddle through but it was getting me down as I couldn't accept having had major surgery from which I recovered lung function and then some...through swimming, that I was reduced to a few steps.
I was referred to A&E by locum where chest x-ray showed enlarged heart. GP put me on water tablets and referred me for echocardiogram. I requested allergy tests which proved nothing new (indeed some had reduced) .
I realised a preventer inhaler had been changed whilst in hospital from Symbicort to Fostair. I looked at the leaflet and it said breathlessness was a side effect so googled to find lots of reports. I told my GP I was going to stop it as I was due to see consultant 3 weeks later and had a reliever if needed. I did and consultant reverted to Symbicort.
Happy to report my breathing recovered and heart too. Sometimes medications given can impact negatively on us too.... I agree with your observations about medical staff - some are wonderful but others could do with learning empathy and emotional intelligence. good luck.
I know it's worrying but there are strict guidelines for managing pulmonary nodules that all hospitals have to follow. Many people have nodules in their lungs in the same way many people have moles on their skin but very few actually develop into anything sinister. Many thousands of people will never meet a consultant - and many are discharged back to GP so please try not to worry. In the UK the lung health check pilot schemes are detecting many people with lung nodules - and most others are found 'incidentally' whilst investigating other issues - many will never affect them.
Most respiratory consultants have been working their socks off due to the pandemic as well as their backlog of patients already in treatment. Until it's determined whether there is any further investigations necessary, your case wouldn't be discussed by an MDT or be allocated to a surgeon or an oncologist in the UK. I never had an oncologist - the surgeon was my main consultant but I have seen a respiratory consultant after my first hospital episode and in years since for various serious chest infections and follow ups. For most people even if nodules increase slightly in size the recommended treatment is still 'watch and see' with regular imaging.
Many nodules can inflame with infections and subsequently reduce so if every nodule was 'surgically removed' you'd be left with limited breathing capacity as the surgical standard is to remove a lobe of the lung if badly affected. Respiratory services are slowly resuming in centres that are covid free and elsewhere appointments are being done by phone or videoconference if face to face isn't needed. Therefore think you'll have to hang tight and wait for the 'phonecall.
My own tumour was 7cm (not mm) and was removed with half my left lung in Dec 2010 several months after it had been found when I went to A&E - I waited over a month for even a scan. I was back at work and swimming 3 months later. I'm now involved in a lot of lung cancer research in the UK and Europe so the links I"m suggesting are trusted sources - there is a lot of outdated information on the internet/Dr Google so if you want to go looking at information, would direct you to Roy Castle lung cancer foundation, the UK"s only charity dedicated to lung cancer or British Lung foundation especially as at this stage, it is not confirmed whether your nodules are potentially harmful or not. good luck
I've enclosed a couple of links to try and reassure you in the meantime - radiopaedia.org/articles/br...
Thankyou very much for your great reply. Yes, I agree that the respiratory teams will have been hit hardest with covid for sure, other departments have been a postcode lottery tbh, it's not been manic in every aspect of the nhs, I know from what my colleagues have told me. My trouble is that I've not had one GP that's truly believed my symptoms, I've had to battle for each investigation I've had done including my chest CT, my bloods that I requested was a godsend because my vit d was only 27 (should be nearer 100 ideally), I've had paramedics (I felt near collapse and really unwell at Christmas) talk down to me until they found out I am a nurse, there hasn't so far been one dr that has really wanted to get to the root of my symptoms, they just want me on an anti-depressant, I'm not depressed, I'm low because of how they're making me feel and I've had to give up my job and home because of being unwell for so long.
Thankyou for trying to reassure me, you're quite right with what you say. I think I need to get a good consultant and take it from there. Well done to you, you sound to have done amazing and cracked on, you do right.
I often think it's harder when you show some sign of knowledge/awareness or persistence - I was chair of community healthcare services and non executive director in a primary care trust when I went to A&E feeling dreadful with some v. worrying symptoms for me. The triage doctor was the only person to treat me for the symptoms I presented with and a chest x-ray was done - he agreed I was in a bad way and gave me steroids/antibiotics and nebulisers (2 agents) however 5 hours later the emergency doctor wanted to discharge me as my sats/obs were ok! Having watched drunken people come in and be treated or sports injuries (Friday 10.30pm when I arrived) I felt quite aggrieved by her attitude, not taking me seriously etc. I refused to be discharged until I had the chest x-ray results to which I was interrogated as to who had sent me for a CXR, she wouldn't have sent me for a CXR etc so I told her to check with her colleagues, not me the patient! She returned 10 minutes later sheepishly telling me there was an anomaly on my left lung and when I pressed her for more information, she said it was a 'lesion' at the top of. the left lung but proceeded to discharge me. The next day I was readmitted by ambulance (worsening symptoms) and kept in hospital, misdiagnosed as uncontrolled asthma and told to return for a CT when written to. I'df taken a salbutamol inhaler in with me as I have severe allergy to cats but not had asthma in decades and knew it was completely different. Appointment was made for 2 weeks later but then had a call to say the scanner had broken down and parts had to be reordered. The Trust operates on a split site so I asked for the scan at the other site and told to ring the secretary to arrange this, when I called I was told only the consultant could change the appointment and he was on a fortnight's holiday so it was 5 weeks or so before I actually had the CT scan that showed the 'large mass'. 2 days later was sent for a PET scan and just days after that called into see a surgeon (a week before appointment was actually due) and told I needed urgent surgery. I had the surgery over 2 months after my A&E visit when it was found.... but when recovered, vowed to change the system and try and improve communication. I'm quite articulate and confident but at the time was working with people with physical and learning disabilities and could only wonder who on earth would advocate for them in such situations. I've found very few GPs understand lung cancer - I now am part of a CCG and unless they have a special interest, they are often out of date with treatment and research development for lung cancer. I had one patronisingly tell me when I had a lot of symptoms back again within 18 months of surgery - well it's your condition that's making you like that..... he never did elaborate on what my condition was (especially as the cancer had been removed) to which I replied that I'd had a lobectomy not a lobotomy and didn't appreciate his attitude. You have the right to request a referral or a second opinion - so suggest you find a respiratory consultant who specialises in lung nodules/cancer rather than one specialising in sleep disorders, asthma, COPD, TB etc. Agree about not all departments being busy - my own surgeon told me on a recent committee meeting we're on that his surgical team are twiddling their thumbs - as the cancer surgical site they've established for the area does not have the dedicated capacity they had in their tertiary respiratory/thoracic centre and also patients who would previously have been considered for surgery are not always opting for surgery even if it would be safe for them at this time. agree services are always variable at the best of times but worsened when we can't even see GPs or consultants. My respiratory physio appointment was moved from April to last Monday when it was changed to a telephone appointment. When I asked the physio how she was going to observe my breathing - she had previously had me walk around the hospital corridor and upstairs so she could see where my diaphragm/lungs/chest were functioning, she suggested we rearrange it into a video call a few days later. In that call, she observed my breathing and said we need to start again!
You sound to have experienced a similar disjointed time to me...i too have wondered what on earth happens to those who do not have a voice or knowledge or persistence??? Like yourself, I know I'm not right healthwise and feels its dreadful the attitudes that we're experiencing. Covid is going to do more damage than the virus itself as it will be used as an excuse in the coming months for delays and lack of time-appropriate treatment...the repercussions will be astounding I fear. It seems that my drs have documented on my notes that I'm a nurse too, which is not important...the paramedics who came to me at Christmas asked my why I never told them I am a nurse (I told them when they spoke down to me, as they questioned if I'd read the patient info leaflet of an antidepressant my gp had put me on two days prior, they told me they're just doing a tick-box exercise of side effects!!) I told them it shouldn't matter that I'm a nurse...
I am on a number of groups and committees and remind other members that not all patients are seen in specialist cancer centres despite the large number of professionals from such sites on the committees and being pushed around a healthcare system that is fragmented by IT systems, management cultures and geographical locations would test many people never mind that I live in a very diverse population for whom English isn't always understood in a written format, many people are not online or use computers/mobile phones, many do not have high literacy never mind health literacy levels and many are used to different types of health systems elsewhere in the world. My mum has dementia but my parents are from a generation that never asks questions of authority figures even if it involves taking medicines into their own body! I want to understand what's happening and what options might be.
I don't reveal my employment - sometimes I'm asked due to questions I ask but say I'm involved in health research. It shouldn't matter what people do, we all deserve the best care and much of it comes down to approach .... you could always try another GP at your practice or visit a walk-in centre for a different opinion.... good luck...
Welcome to the forum where as you can see there is support and encouragement, but so sorry to hear of the experience that you have had with your nodules and how frustrating this must be for you.
There have been excellent replies and advice given to you.
If you wish to discuss anything you can either email us at firstname.lastname@example.org or call our freephone nurse led helpline number on 0800 358 7200
I have sent you a private message.
The Roy Castle Support Team