Hi all. Reading what you are all going through makes me feel a bit dubious about posting here again. I have had the most amazing support from people on this forum particularly from Loimie and Zac and want to say thank you so much for helping me through since I was first diagnosed with Adenocarcinoma in my top right lung . I'm not going to go through everything again (!) because it's all in my profile ! I just wondered whether anybody has had problems with Oesophageal infections and lung infections and has that led to lung cancer returning ?
As some of you know, I have 2 fractured vertebrae and was, initially, told that it was cancer and then a week later was told that it was Osteoporosis. With my hospital's record of misdiagnosis I don't trust them and the spine pain is getting worse. For the past 3 or 4 month's I have been waking in the middle of the night coughing non stop and then being violently sick with a lot of clear fluid and then thick yellow stuff....really sorry ! I did sputum test's and a few times it has shown Thrush and then a lung infection. Since that was diagnosed I was given antibiotics, which were awful but I still don't feel as though the infection has cleared. Also have a ' huge ' hernia plus other problems and had misdiagnosis for 15 month's when the tumour was on an Xray so have been left with multiple health problems. I'm a bit worried about these infections that I keep getting also that the Spinal pain is worse and I have swelling above my knee's which are so painful plus I have lost a bit of weight. That's it .... promise! Actually, that's the shortish version!! Am I worrying too much ? I don't feel well at all and I just don't understand why I keep getting infections and am also finding it a bit hard to take a deep breath. Anybody had any of these symptoms or advice? Apart from .... buck up ! Loimie and Zac are helping me so much and I think the world of both of you.
Wishing everybody here all the very best and to let you all know that I think that you are all amazing.
Love and hugs, Danni xxxxx
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Danni54
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So very sorry to hear that you are having such a tough time just now with your symptoms.
Chest infections do not cause cancer, but can be for some people ongoing symptoms of their lung cancer, or from surgery, up to 6 months. It is understandable that you are worried about your change in symptoms and it would be good if a doctor could examine and listen to your chest sounds.
If you have not had a doctor review your symptoms, do contact either your GP or lung cancer nurse specialist. If you feel you are unable to trust the hospital, you are entitled to a second opinion on the NHS and this can be requested through your GP or oncologist.
You could ask for a scan of your spine, and as your pain is getting worse then this needs to have a doctor reassess it and have your pain better managed.
It may be helpful for you to have clarification from the doctors if the change in pain is from the fractured vertebrae or osteoporosis. Osteoporosis will show up on a DEXA scan.
It can be quite isolating if you feel that you are not being listened to and given your experience in the past, I would hope that this will improve greatly for you.
I assume you have had a recent Covid test just to check.
Do get checked out and if you would like to discuss anything you can either email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
Hi. Thank you so much for the advice and support. I don't know what I would do without the help and advice I get from you all and I am so grateful. I have one friend here that I talk to but my Dr. is impossible to get hold of . As for our hospital...I trust my Thoracic Consultant who dealt with my tumour after the 15 month misdiagnosis and his Specialist Nurse is wonderful so I might phone her.As for my spine, my Dr rang last year after I had had an Xray and he said that the Xray had been sent to Australia because there weren't enough Radiographer's in our hospital. They had emailed back to say that they had seen cancer where I had 2 vertebral wedge fracture's. My Dr. said that he " would be with me till the end " . All a huge shock although having gone through lung cancer I suppose I had had a niggle. He then rang back 5 day's later to say that our hospital had reviewed the Xray and they decided that it was Osteoporosis...no cancer. Ordinarily a huge relief but this is exactly what happened with the lung tumour. Australia saw a tumour, our hospital let it go for 15 month's until I got pneumonia and my lovely Thoracic Consultant asked me why I hadn't had anything done for the tumour I didn't know I had !
My spine pain has got so much worse in the last few week's and I requested a DEXA Scan last year but my Dr. has only just referred me and he told me that the waiting list for DEXA is 8 month's. I barely eat, have lost a bit of weight,keep getting oral Thrush infection's and had a lung infection about 3 week's ago for which I was given antibiotics which were horrible but I took them. I still have a bit of a chest crackle and have had to phone the Surgery today for more Fluconazole. The Dr. has sent sputum samples which showed up the infections. I have Opioid painkiller's and take Oramorph once a day or twice if the pain is really bad.....today is so painful I don't know what to do with myself. My Dr. is away for a week and booked up for the following 2 week's. The other Dr.s are reluctant to treat me because they say that he knows me the best ! So sorry to chunter on. I will phone one of the number's you gave me tomorrow. I'm too shaky today and in too much pain to speak to anybody but thank you so much again. I must admit to being desperate with the pain .
So sorry to read your post, and I have to say that even though your GP is not available, the other doctors should be able to address your pain management.
It may be worthwhile calling your nurse specialist with all your change in symptoms, especially your pain, no one should be in that much pain. You could also call your local pharmacist for advice on pain relief.
If at any time you feel acutely unwell or the pain is unbearable, call NHS 24 on 111 or an ambulance if needed.
Our helpline nurse will be more than happy to talk to you when you feel like it.
That is great news if it is osteoporosis and although there is a waiting list, I would imagine you should be priority and hopefully the oncologist can speed this up for you.
Hope you have plenty support or someone that could stay with you if you are in pain, especially if you are feeling shaky. Please do not hesitate to contact the services to help you.
I meant to add that your shakiness could be a number of things, including a low blood sugar if you have not been eating very much. Perhaps try some sweets or chocolate, a sweet drink if you can manage it (unless you are diabetic) and if you are diabetic, to check your blood glucose level.
If you are not eating because of nausea let the nurse specialist know, and sometimes people find that having small frequent snacks helpful, or dry salted crackers.
If you have a temperature with your chest infection, you may feel shaky, shivering, cold and hot.
It could be pain or all the emotions that you are feeling. Hope you feel better soon and please do not hesitate to call us on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
Hi Danni,I’m thinking about you, and l hope they start to investigate further for you, especially if the antibiotics have not worked.
Sometimes taking your husband along to fight your corner can help, l know you live remotely in rural village, is there not a big NHS facility near they can send you to, turn up at A&E that can get you through the door quicker.
Hi you. Will message you later. Thank you for your support . You have helped me so much and I don't know how I would have got through the last few month's without you and Loimie. Just amazing friend's! Love,
I’m not as far down the road as you but I don’t think you’re making a fuss at all. Not knowing what is causing your infections must be very challenging, especially with your other health conditions. If I have any infections after my lobectomy I’ll certainly be pushing for answers if it doesn’t clear up.
I’d certainly push hard for further investigations. Others have said you are entitled to a second opinion, so go for it.
In the meanwhile, I’m wishing you all the best and hope they sort it for you.
Hi. Thank you so much for your support. I can't think straight just now because of the pain in my spine. I rang our Surgery today and am getting a prescription for Fluconazole for the oral Thrush.....again! I have been told to phone our Surgery next week to try to get a cancellation phone call with my Dr. otherwise I have to wait 3 week's to speak with him.Good luck with the Lobectomy and I will be thinking of you.
Sorry to read of your situation Danni. This vicious cycle can get very wearing. I had a lobectomy in Dec 2010 (open not keyhole) and initially recovered well.
I had a couple of episodes in 2012 - breathlessness, wheezing then developed chest infection. My thoracic consultant (amazing) said there was a limit to what he could do as a surgeon and referred me to his colleague (a respiratory physician) so they sort of 'double handled' my appointments. I lost a load of weight without trying (6 stones!) which set off all sorts of investigations.
I don't think there was an 'oligist' in the hospital that I didn't see - gastroenterologist (my dad has had bowel cancers - two in his 50s - I was 52 when diagnosed with lung cancer) , cardiologist ( 'echo' showed my heart wasn't functioning properly) , endocrinologist, uro-gynaecologist, (stress and urge incontinence when coughing) - it went on for months and months. All tests came back as 'not sinister' then thankfully eventually my health improved...
in 2015 I had similar symptoms and the walk in centre sent me for a chest x-ray at the hospital who kept me in for 5 days with a chest infection.
That started a bit of a run. During that stay a nerve became trapped affecting my left hand (tumour was left side) so I was referred via GP to see a hand specialist who months later referred me back to lung cancer team in case a tumour was pressing on my nerve - it wasn't.
I had surgery to reposition the nerve but then annually I ended up in hospital with chest infections - pneumonia, pseudomonas and RSV (isolated in hospital with gowns/masks in 2019 - way before they looked 'normal').
I tell you this not to say I've been unlucky (I'm thankful for every day) but as explained to me, we developed conditions before our diagnosis and will afterwards but our minds tend to think everything must be related to the cancer. I've had more frightening and worse symptoms with some infections than my initial situation which can be scary. Touch wood, so far all eventually resolved with the correct medication.
I'm wondering whether you were given some sort of inhaler for your breathlessness ? It's common to develop oral thrush on these and many of them can make you shaky so do consider that and maybe ask to change to a different one. The opioids can also contribute to shakiness. I had an inhaler changed in my RSV stay that affected my heart (negatively) and general health for months until I stopped taking it and asked the respiratory consultant to revert it to the previous one. The heart issues, breathlessness, fatigue all eventually improved.
A poor experience can lead us to lose trust in hospitals, people and establishments as yours did but I also think it can mean the doctors once you explain that to them can make an extra effort to keep an eye on you which is probably what yours meant when he said 'I'll be here for you until the end' - not meaning the end of your life but whenever it is time to discharge you in the pathway.
Chest infections (as has been shown in covid) can take weeks and months to recover from and particularly if the pleura (lining of the lung) is infected can cause pain in the back area. How you sleep can also affect this - if you're lying flat, this might be a problem and why you wake up coughing - I tend to sleep propped up with pillows when I have a chest infection to prevent the mucous gathering on my chest...taking a deep breath can be painful if you have an infection. Have you tried breathing exercises to help this? have a look at the link on breathlessness tips.... roycastle.org/about-lung-ca...
If you have osteoporosis you should be prescribed calcium to supplement your intake which will take time to slow this down. I hope you get some relief soon as anxiety can make things worse. If you read you might find the book 'cancer is a word not a sentence' by Dr Rob Buckman helpful - it certainly helped me reframe my thoughts and keeping active also helps distract .
Thank you so much and I'm so, so sorry to hear what you have been through. This sounds awful but I will reply properly later. I am feeling really ill but I've been up for a while and have overdone thing's and now I f feel really awful and the pain in my spine is terrible! I'm also feeling very sick and my chest feels really tight. Have to phone the Surgery tomorrow. My mouth is disgusting and sore despite Corsodyl toothpaste and mouthwash! Have 4 pillows. No support from the medical profession and my Dr. actually told me that the spine cancer was terminal which is why he said he would be with me till the end ! More later. I just wanted to say thank you so much for your support. It means a lot. Best wishes,
No worries - no need to reply 'properly' - I'd hoped explaining some of my experiences may answer your question about whether it's normal or not after lung surgery... I don't think it is but I do think if whatever caused the issue isn't dealt with, it can feel like these things go on forever.
Sorry if I misunderstood but thought what had been initially suspected as bone mets is actually not cancer but osteoporosis?
Hope you can get the pain under control and rest as pain can be exhausting. take care.
Hi again. Have had a bit of a sleep so am feeling a tiny bit better! I get a bit muddled when I'm telling my story! My Xray was sent to Australia because our hospital didn't have enough Radiographer's and my Dr. rang to tell me that they had found cancer at the fracture site and I was a bit shocked and the Dr. knows me well and realised that I was shaky having gone through lung cancer. I asked him how long I had and he said that I would have to talk to the Oncologist about that but possibly a year but he would " be with me until the end " !Haven't told anybody that "year " bit before! 5 day's later he rang to say that our hospital had reviewed the Xray and they said no cancer and I had 2 vertebrae which had wedge fracture's due to Osteoporosis. So....wonderful news in that it wasn't cancer according to our hospital. What still worries me is that this is what happened with the lung cancer where, again, my Xray had been sent to Australia and they had seen the tumour but our hospital ignored it for 15 month's till I was ambulanced to hospital with Pneumonia and my wonderful Thoracic Consultant asked me why I hadn't had treatment for my tumour. I said " what tumour " and he then showed me the original Xray and even I could see the tumour! After that it was all go! I am in such pain with the fracture's, am on a huge amount of Opioid's and morphine and the pain is spreading. My knee's are swollen and the pain there is pretty awful. I am now waiting for a DEXA Scan which will be in 6 month's! I can't help but wonder whether our hospital have made another mistake because how could they ignore a lung tumour for 15 month's? That is part of my long story !You have, also, gone through so much and I really appreciate what you are saying. I haven't been given an inhaler, I have only just been referred for a DEXA Scan and haven't seen anybody, apart from my G.P. about Osteoporosis and he is reluctant to give me Osteoporosis medication because I have a " huge " hernia , Diverticulitis and reflux despite the fact that I have contacted the Royal Osteoporosis Society nurses and I have shown him their information where I could have medication by injection or drip and it bypasses the stomach so I have no idea what is happening or why and quite honestly I just don't trust our hospital apart from my Thoracic Consultant but I don't see him now. My right handed tremor was diagnosed as an essential tremor. I am pretty sure after last night waking up and being sick again that the lung infection hasn't gone so I am going to phone the Surgery in the morning. I had a phone Consultation with a Dr. last week who has prescribed Fluconazole for what I thought was Thrush but I now think is the lung infection. When you get that , do you have hot sweats ? I have a slight temperature tonight and my temperature is usually below normal.
Thank you again for taking the time with me. I really do appreciate it because I am a bit concerned now because I keep getting these infections and today I have had bad pain in my right shoulder which I had before with the cancer I don't usually suspect cancer with every twinge but the spine thing does niggle me. I saw my brother in law go through bone cancer and it does worry me a bit.
Sorry, again, to be so long winded ! How are you now ? I hope that thing's are more peaceful for you now and it must have been awful watching your Dad going through cancer. Too many people have cancer now. My husband's brother died 5 month's ago and I have lost 2 dear friend 's this last year but saying all of that there have been some incredible cures for cancer. Please take care and keep safe from Covid!
so glad you managed some rest - yours sounds quite a story. Overall I'm well - increasing my swimming, continuing to work and see people and thankful for every day. However that doesn't mean when things happen I don't struggle, I do - like everyone else - but have come to appreciate that I'm stronger and have far more resilience than I'd ever imagined and also that health is something to look after whilst we can. Thanks for your kind wishes about my dad - he's a trouper - he had bowel cancer in his late 50s and had surgery to resect part of his bowel but kept complaining it was back and he was having monthly blood tests at the time at a major cancer centre. They kept telling him he was imagining it but after 6 months were forced to admit 'it was back and had spread'. He had another major resection and took part in a surgical trial meaning he didn't have a colostomy bag but 'irrigation method' i.e. a stoma to flush out daily. We hadn't expected him to reach 60 he was so poorly and was in hospital for weeks. However he rallied around, returned to work and in the end an accident and angina forced him to give up work due to ill health at 62. He was 92 mid February and for at least the last 18 years has cared for my mum at home as she has Alzheimer's. He had another primary bowel cancer in 2016 and yet more surgery at the age of 86 when nothing more than a bag of bones. He has recovered and still cares for mum at home, evidently frailer than before but in spirit, still fighting.
His example when I was in my mid 20s framed my approach to cancer - returning to work, swimming and general life as soon as I could. I've become very involved in lung cancer research since late 2013 and the transformation in lung cancer knowledge and treatments have been amazing globally. Yes, there's more to do but public and GP awareness haven't caught up with the reality of the hope that's available to many now.
Yes, the recent infection I had in February I experienced a temperature and felt awful - tested for covid but negative but using the antibiotics/steroids and over the counter meds, it eventually resolved even if still tired. Flucanazole is given for anti-fungal conditions including thrush so will not be for your chest infection. It's worth contacting your GP regarding lack of response to meds for the chest infection in case they can offer something else although sadly most of these meds and especially if you're taking multiple meds for other conditions do come with side effects.
I'm on national committees for cancer and there is a recognised shortage of radiographers in the UK and people to read the images so sending images overseas has been happening for years especially for a 'second read'. Currently some areas are considering using machine learning for that second read.
The national cancer taskforce recognises the shortages in certain specialist areas that support cancer services including imaging and pathology. These roles take years to train people into. It can sound as if it delays things but digital file transfer is done electronically so can actually speed things up in getting results to clinicians quicker. In recent years a UK national optimum lung cancer pathway was introduced and Trusts are working towards achieving this. Also the 28 day faster diagnosis target has been introduced which charges hospitals with determining whether somebody has cancer or not within 28 days. These initiatives are designed to reduce delays or situations like yours (and mine) had but sadly the pandemic has delayed progress on some of these especially where there are staff shortages due to covid.
There have been other cases where tumours showed up on images when investigating for other conditions especially emergency admissions where patients went onto have their heart, bowel or other condition treated but findings on chest x-ray or CT scan when admitted can often be delayed for treatment. It's not good enough as you say but they tend to prioritise clinically. I've heard presentations at conferences about how to deal with this through 'safety netting' of imaging.
The prediction is that 1 in 2 of us will develop a cancer in our lifetime so there's a need for public awareness on how to prevent it, deal with lifestyle to reduce the odds and also understand treatments can help people live for years with it.
Sorry to read about your brother in law and friends - I've lost several colleagues and friends in the last couple of years - several of whom had cancer but the majority didn't die from it but of other conditions like stroke and covid.
You mention you're hardly eating - but with all the meds, it's important that you have nutrients to absorb them so maybe something in this information will help you with hints and tips on how to eat with lung cancer.... roycastle.org/about-lung-ca...
I hope you can get some suitable answers and pain relief before too long. good luck.
Hi. Thank you so much for being so kind. It's awful that lovely people like you are going through this horrible disease! I think the worst thing is that I don't know whether to believe Australia Radiographer's or the one's here because of what happened with my lung cancer. I feel ' dumped ' because I have no medical person to talk to although this morning I rang our Surgery because my lung infection has come back. I spoke to a nice lady Dr. who listened (!) and she is going to give me more antibiotics and said that if these don't work then she will refer me back to my Thoracic Consultant. Someone who understands...at last and my Thoracic Consultant is wonderful. Thing's are a bit brighter today ! I am worried about having repeat infections and the Spinal pain is horrendous! Thank you again and I'm thinking of you and hope that all goes well for you.
Hi DanniI am pleased you have spoken with your GP and do hope she refers you back to your thoracic consultant as that seems perhaps the best action, even if the antibiotics do work.
Also I hope the spinal pain is treated.
I have a lot of spinal and leg pain. both of which are treated with pain medication.
Hi scrapping! Who thought up that name for you ?! I felt better mentally after speaking to the Dr. because I really don't feel well and my chest feels heavy, coughing more etc. so I hope that I will get the antibiotics tomorrow as our Chemist should deliver them. I can't catch my breath and my throat is sore and I'm so tired and keep nodding off ! Good grief!How is your treatment going? I have been on a Fentanyl patch, 12 mcg , Dipipanone and Cyclizine 3 or 4 times a day and 5 ml Oramorph but by midday the pain is unbearable. Do you find that your painkiller's don't work the same over time ? Will write tomorrow. Going to try to sleep. Sweet dreams....I hope.
So sorry! I have that stupid Predictive Text and sometimes it doesn't like what I've written so it changes the word which it did with your name and I didn't check it ! How are you today? I'm having to have half a day in bed after last night being so sick. I can't keep doing this because I'm worn out. A friend picked up my antibiotics this morning so hopefully they will work soon . My stomach is also so sore after last night being sick for an hour and a half ! I left a message for the Dr. about what happened last night because this has happened a few times now and I've told her that I can't keep doing this because I'm worn out and in such pain.
Anyway....I hope you are alright today. I can't believe how beautiful it is outside....and I'm stuck in bed! My friend is outside doing some gardening for me. I am so lucky. Take care.
Dear DanniGlad you got antibiotics OK, and hope they really help.
Don't worry about your predictive text, I don't like it much either! The name scraapi was chosen because I used to do digital scrapbooking with my photos.
My bloods showed elevated results for liver function so I am not to take cancer meds at the moment. They took more blood yesterday and I am waiting to hear. Being off cancer medication has made me feel better! I am on steroids for about 3 weeks and they are helping my appetite and the pain.
You were asking about pain. I have morphine 24/7 and also top up with oral morphine when I need it during the day / night.
I also have a different medication for the pain in my legs caused by spine compression.
Hi again. Have the medic's tried you with a Fentanyl patch? I have an Opioid pill which has been banned in America and other countries but I have been on it forever and it doesn't work as well as it did so they topped it up with the patch and since I had the Spinal fracture's I am now on 5 ml Oramorph in the afternoon and at bedtime. I , also get pain in my leg's and I've been wondering whether that was because of the fracture's. My knee's are swollen and very painful. I so hope that the medic's can get you back on track soon although a friend of mine , also, had to have a break from cancer meds and Chemo and she was so relieved to stop for a few week's and she is back on them now ..... not a very happy bunny but she knows that she has to do it .
Really interesting that you do digital scrapbooking with your photo's. I tutored adult Art Classes for 25 year's and we raised a lot of money for different charities at our annual Exhibition's. I paint watercolour, oil and wax and I did try to paint on my tablet but I just prefer painting with a brush in my hand but with photo's it must be amazing. Do you play around with colour and light? I love some of the incredible colour contrasts that people get on photo's . Are you still managing to do it ? I haven't painted for a long time but my head really wants to get back into it.
Let us know how you get on and I wish you nothing but the best.
Hi DanniNo, I haven't discussed any patches, and my pain is about manageable at the moment but I will keep a note of the name and discuss with my doctor if my pain gets a lot worse. By the sounds of it I do take more morphine than yourself.
You mention pain in your knees, I don't get pain in mine during the day but they are really quite painful in the night, but not always. I was told by my physio that the body does a lot of its healing during the night and that is probably why.
It must have been extremely rewarding tutoring art classes. I don't do digital scrapbooking any more but I do like photography. Being in a wheelchair, ufortunately, doesn't help when wanting to photograph moving objects (birds, etc.), so I don't do it so much now.
The main thing I do with the photos now is I create audio visuals (AVs), so you have a piece of music (or several) and put photos to the music, using different transitions between the photos. I was working on one before I was diagnosed but have not done any since. Sometimes my concentration span isn't long enough before I fall asleep!!! I hope to finish it one day, and hope that you are able to paint again.
You mention your friend who had a break from her cancer medication, I know I have to do the chemotherapy but at the moment I am not taking any cancer medication because of the result of the liver function from my blood sample, but I am feeling pretty good. The steroids are helping my appetite too, which has added to the 'feel good'. It is such a shame that you feel good when nothing is fighting the cancer, but feel awful when it is!!
Why is it that when I write back to somebody, I keep pressing a key and it vanishes! My right hand has a bad tremor which they call an essential tremor....doesn't seem that ' essential ' to me! Wanted to hear more about your photography but I will write later as I decided to get up and went nuts trying to tidy the bedroom and now I'm in agony so, the Oramorph is calling! Idiot! I am so hopeless about ' pacing ' !All the best,Danni xx
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Lobectomy 
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