Quick history: Chest infection started last September, and gradually got worse at Christmas again, then again 2 months ago. GP stated xray clear, and I didn't meet NICE Guidelines criteria for CT scan when I asked for one. And so, after much persuasion (and asking for GMC number) I managed to get a CT scan.
My Gp called on Wednesday to tell me the following from my medical notes which I [and other patients] have online access to. Apparently there aren't any respiratory hospital appt's available at the hospital, and I have to wait until 7th September before they can give me a potential date to see a specialist. Can anyone shed some light on this for me please?
There is evidence of a subpleural nodule measuring 9. 4mm. The, margins are well-defined. This most likely represents a post, infective granuloma, however this is not conclusive on a single, imaging instance., There is a ground glass nodule measuring 3mm in a subpleural location, in the lateral segment of the left lower lobe. This is also most, likely a granulomatous focus., No pulmonary masses evident.,
Thanks
B
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Its unusual to have cancer in lower lobes if thats what your worried about.
Cancers have ill-defined shapes .. Ground glass could be fibrosis not yet calcified thats why talk of granulomatous
Could be active infection pockets as there still juicy and not calcified .
I guess they are going to observe and give antibiotics
I would be quite happy with 7 sep and ct results.
My ct scan showed oblong nodule about 12 mm in upper quarter of left lung.
My doc said it had calcified but given my latest xray was all white lines all over.
My nodle was on old calcified lung damage fibosis or .granulomatous stuff.
Am still here cancer free AND 3.5 mm nodle could be just infection BUT is good your seeing lung docs as gp's don't really manage lung conditions to well
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It's not unusual if it's Neuroendocrine cancer!
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Never heard of that i was 3 times told had cancer last time was that oblong nodle doctor said was tumour.
Anyway it resoved its self but my lungs are full of granulomatous tisue.
Thanks for heads up
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It's what I have and I was told for years I had granulomas in my lungs. It was only when I had a surgical biopsy that the truth came out
I have DIPNECH which is a form of neuroendocrine cancer. The tumours secrete peptides which are destroying my lungs. They have remodelled my airways via obliterative bronchiolitis. I also have bronchiectasis as a result and emphysematous changes too!
No there is no mention of it so please don't panic. Just make sure you grill them on ground glass changes and the nodules. Don't be fobbed off the way I was- for years I took them at their word
Am I being referred to the correct team (respiratory?) or do I need to see a lung consultant (or are they the same) I'm so blind to all this...
I don't know what ground glass and nodules are. I've googled, but most of it appears quite vague, and states ground glass is likely to become cancerous - not sure of that's correct?
Yes respiratory should ensure you see a lung doctor. Nodules are little growths on your lungs. But that doesn't mean they are cancer. They can be scarring or granulomas which is a type of scarring after an infection. no ground glass doesn't always equate to cancer. Eg other patients with DIPNECH have the ground glass changes but they are considered benign xx
Seems a long winded process so I'll ask to go direct to Lung team. Thanks for your help, and taking the time to reply. I have a lot more avenues for them to explore now. Warmest B xx
Best of luck! Yes I can be long winded with various different tests but it will give them a full picture. Or they may decide they know enough from the scan and just monitor you. Either way, hope you get good news and they can give you some peace of mind xxx
Thank you xx I'm unsure if it's related, but I keep getting a recurrent ulcer at the back of my throat, so I will check that out with the gp again tomorrow. I'm wondering if it comes following a succession of coughing up phlegm...I'm going to give my gp a call again tomorrow to get it checked out again.
Do you suffer with reflux which could be causing the ulcer? Reflux and lung problems often go hand in hand.
You could ask for a referral to an ENT to look at the ulcer.
I sometimes get small ulcers all over the roof of my mouth that look almost like cigarette burns. My ENT said it was autoimmune. They come and go for no reason!
Have reflux, yes. I have been given a number to ring to book a camera down the throat, initially because of bowel issues, and haven't called the number yet but will do it tomorrow from work. xx
I was a few years into my lung issues before I was told they are often related!! I've had a few cameras down, just mild sedation and even did it once without (never again!) lol My Lung doctor said sometimes with reflux particularly when you're lying down the acid can go up and down into your airways so definitely something to ask about xx
I was observed for years with nodules in my lungs and told they were granulomas and had the ground glass attenuation on CT. 10 years on I have been diagnosed with DIPNECH (classic sign is ground glass pattern) which is a form of neuroendocrine cancer (NETs)
I have other illness' so symptoms can crossover, but symptoms are:
chronic fatigue, severe headaches, constant coughing up green gunk, nausea, tightness in chest, short of breath, weakness in arms and legs (but could be due fibromyalgia I have) some weight loss - but big bloated stomach (look 7 mth pregnant!).
What's the long term care plan for your cancer? Are you terminal, or are they treating it?
This is all such scary stuff!
My symptoms started when I began a new job last September...everyone in the office had colds and flu, and because my immune system is low I picked it up, and stupidly carried on working instead of taking the time to recover. 900mg of 2 types of antibiotics, and it appeared to clear for a few months. It came back again at Christmas and so more antibiotics, which calmed it down again. Then I ended up with another chest infection (but the xray showed clear). I had more antibiotics, and had to demand a CT scan, as my other GP said it was post-nasal drip due to my ongoing sinusitis, but I needed reassurance and insisted on CT. My daughter is a DR, but I don't want to worry her by showing her the results as she has exams coming up - plus (for some reason) my GP said [when he rang me with the bad news] "not to tell my daughter about this" which has made my mind run away with me...why on earth would he say that, so, are they hiding something...I have all these thoughts running through my head, and feel in limbo until I see the respiritory team.
Your doctor shouldn't have said that, that's shocking! You need support not isolation! And your daughter may be able to help give you some peace of mind xx
Please don't think you have cancer. I only mention it as I was misdiagnosed and ive since learned that many people are as it's a sneaky cancer. Just make sure no stone is uncovered.
I am stage 4 but you can live for a good few years with this cancer, it's not like typical lung cancer. It's incurable. I've started injections to try slow it down
Keep pushing until you get answers you are happy with x
I had already decided not to tell my daughter the outcome of the scan, because she's currently studying for her surgical exams, and she's seen so much over the past 12 yrs with my health. I have other sources of support, so for now that's the way I want it to be, but I was so angry that the GP said that to me. I asked him why he said that and challenged him. He said, "she doesn't need to know because she will worry because she will worry based on the information"
I'm sorry to hear about your diagnosis. I cannot beigin to imagine how you must feel, and cope with it xxxx
Can you advise what tests I need to ask for so I can leave no stone un-turned
Well he hasn't helped your peace of mind by saying that and then bit explaining further. I'm sorry, you must be very stressed. I think sometimes waiting for answers is more stressful than the bloody answers some times.
Thank you very much. It is a bitter pill to swallow after being so diligent for years monitoring my lungs, but it is what it is now and not a lot I can do about it except get on with it and make the best of each day.
I would imagine they will do a full run of lung function tests to see if your function is below normal which could indicate lung disease. These are standard blowing into tubes, holding your breath etc. Have you had a bronchoscope? They may suggest that to take some biopsies (it's just a day ward procedure with sedation) or they may choose to just monitor you. Hard to tell with doctors these days. They all seem to want different things done!
Make sure you mention all your other symptoms too. If you have a phone with a camera, take photos of the stuff you cough up. Even record videos of the breathlessness etc. I often find showing them pictures etc is better than me just saying I coughed x y and z up. And have a list of questions ready. Don't worry about any questions you ask, no question is silly. Make sure you come out happy and with some peace of mind xxx I'm glad you found us here
Hi Billiejean_2, how are you keeping? I'm doing ok thanks. Started shots to try to slow it all down and have some bad side effects but if it works it'll be worth it. Still off work (thankfully as I'm so weak) so loads of time with my little lunatic. She is my rock xx
Good and bad Niamh, you know yourself. I spend a lot of energy convincing myself that I'm doing OK. Your responseto the OP here has reminded me that I still haven't asked anybody to translatethe gobbledygook on my last CT report. And I needn't tell you that nobody has offered. Getting them to discuss anything is like trying to get blood out of a turnip. It's just treat the symptom of the day and get you out the door. Maybe I shouldn't be so cynical because on a one-to-one level, the doctors I deal with are all fairly sound but the state of the health system right now isn't very beneficial to patients or doctors. Glad to hear your little girl has achievedlittle lunatic status. She's obviously developing well
BeeBees the BLF helpline will open on Tuesday morning. Why not give them a ring? The number is 03000 030 555 and they are open office hours on weekdays (not Bank holidays). They all work for the British Lung Foundation and can be a great source of advice and reassurance.
BeeBees,i am surprised that your GP has given you what appears to be a consultant radiologist report on your scan without referring you back to your respiratory consultant for a consultation to discuss the findings on the report.I would suggest that anybody on this site who is not a qualified Oncologist may inadvertently be giving you advice and guidelines that at the best will only raise your anxiety.I might add that i have the greatest sympathy with fellow forum sufferers who actually have cancer diagnosis and appreciate their desire to advise and support you............best wishes skis and scruffy
I have access (as do other patients at my practice) to my medical reports via an online service, which is fab because it enables me to order repeat scripts and check bloods etc without the need to call the surgery. The report is from a radiologist who did the CT scan, and I'm due to see a respiratory consultant within the next month (hopefully NOT an Oncologist...).
Rather than giving advice and guidelines that at best raise anxiety as you state, I was attempting to give a broad picture based on my own experience of having CTs for years and followed by a pulmonary specialist for years with some of the above mentioned and yet misdiagnosed for years as it was overlooked by both consultant and all the radiologists who interpreted the reports. All i wanted was for her to go meet the respiratory team armed with as much varying degrees of information as possible so the right questions could be asked and the same thing not happen another patient. I will considered my wrist duly slapped however!
nfanning,your wrists are in no way slapped,unlike yourself who does have a diagnosis of cancer there are members on this site who have in the past made various statements regarding cancer which have no basis in reality.none of them are qualified to make these statements and they are often based on google based nonsense,All of which could frighten or cause alarm to recipients seeking guidance and information.Unfortunately the way i penned my post has dragged genuine people into the equation and i apologise for that.............skis
No apology needed. I would hate to scare someone. But equally knowing what I know now and being a member of many patient groups, the type of cancer I have is a tricky little git and hides and masks itself for years before diagnosis. The average time for diagnosis is around 9.2 years. I myself joined this site as a bronchiectasis patient. I always queried all the reports with all my doctors and even radiologists I met but unfortunately as mentioned was misdiagnosed. It's just a fecker of a cancer to diagnose! Can't really blame the doctors as none of them came across it before. Even most oncologists don't know a lot about it.
My intentions were just to share the info so that people question everything! I unfortunately trusted my doctors too easily and didn't push enough- but I do now!
I love this reply skis so true and I have to totally agree with you on the above to many people have been replied to by drucillas army and it's damaging xxx
Aww thank you. Information is power I think. I've learned over the last few years to read and question everything although I tend to stay away from google as that's terrifying. I stick to patient groups. You learn so much from other patients xx
Great,he hopefully will be able to explain all,i very much doubt you will need to see an Oncologist.My dear wife used to work in radiology and i know that if a consultant radiologist had any great concerns you would have been processed(excuse my terminology)well before the end of next months appointment,,,,,,,,,,,,,,,,best wishes skis
thanks. My daughter is a DR, but I don't want to worry her, so have decided not to tell her - cheating myself out of expert advise so no stone is un turned (and other Consultants will listen as opposed to thinking I've googled things to death...) but i just don't want to worry her
BeeBees, insist on everything. I had x ray followed by CT scan then PECT scan lastly lung biopsy. They found a large Thymoma which I had removed and although malignant didn't have to have chemo etc. Not enough is known about this so being monitored very closely. Regular x rays and scans
scary but in good hands. I didn't make enough noise about my initial tests and only had op after seeing good surgeon. Had op same week as seeing him.
A PET scan=It uses a radioactive substance called a tracer to look for disease in the body. A positron emission tomography (PET) scan shows how organs and tissues are working. This is different than MRI and CT scans. These tests show the structure of, and blood flow to and from organs.
It is disappointing but to be fair, if I'd known I wouldn't have had my little girl and she is my ray of sunshine. So for that reason alone I'm glad I wasn't aware xxx
First of all, welcome BeeBees! Secondly, I'm no doctor, and can only speak for myself about my own experience. I personally have lung cancer and have had it since 2011. Don't panic...but it is possible to have cancer in the bottom of the lung. Mine was in the upper part of the left lobe and was surgically removed. I took 4 rounds of Chemo. and was cancer free for nearly 4 years. I live in the USA and when you have something such as cancer or another serious illness, there is no waiting. It is like a whirlwind once they diagnose you. I'm hoping if you are in England or where there is socialized medicine, they will be swift with you. I had a recurrence nearing my 4th year. The CT Scan picked up a new nodule in the bottom of the other lung. A biopsy was done and it was the same kind of cancer. The surgeon tried to remove that lobe and he had to abort the procedure. My copd was too bad in that lung. So I then took 5 rounds of radiation. Now, here in 2017, I have another " new" nodule in the bottom of the R lung. It was found on 6/30. I go back the end of Sept. for another CT Lung Scan and they will compare the scans.(90 days) If the nodule has grown any----my doctor says it indicates cancer, so there will be another biopsy. Now, that's how it is done in America. Should mine come back cancer, I'm not sure what my options will be. I know I can't have anymore Chemo due to the long term side effects. I have stage III Chronic Kidney Disease, (CKD) now. So, Chemo is out. I'm not sure how much radiation I can have either. I know there is a limit. I don't know how far apart treatment has to be nor how much radiation you receive before you are at the limit. So, with all this said BeeBees, try not to worry. Technology has come a long way and people are living longer. Besides, who knows what you have? Sometimes they will just watch a nodule for a while. Unless it starts growing, there's really no reason to worry so much. Many people have nodules who have and haven't ever smoked. All nodules are not cancerous. Early detection is key and at 3mm it is very small. We are one united support group here and we share a lot of the same health issues. I'm wishing you the best and like I said....not all nodules are cancerous. Keep that in mind.
Thanks for your message. I'm sorry to hear about your diagnosis. I won't leave any stone un-turned, and will ask to get these removed, as I am not willing to take any chances with my health, because I was misdiagnosed with another serious and rare congenital illness until it nearly killed me in 2005. I also had radiation, so when I was told over a rushed 5 minute call from my GP a few weeks ago it brought the old feelings back of being informed while by myself in a hospital bed about the congenital diagnosis. I have had to deal with so much with my health, and am not prepared to 'listen' if the consultant wants to wait and monitor - not a chance!
I see the respiratory consultant on Friday 8th September, and with a huge thanks to everyone who has messaged me and provided me with a little more ammunition to have a productive consultation. My daughter is a DR, but I don't want to tell her anything at this stage - slightly shooting myself in the foot because she will be able to guide me and discuss with the consultant what to do for the best, but I don't want to worry her.
I keep you all updated.
Thanks again. I wish you a lovely sunshiny day! xxxxxx
I'm very resilient due to my professional, but it's important that I recognise that I'm only human, and have to consider my own needs as opposed to my job role at this time.
Dr's, Consultant's etc. often miss symptoms, and don't fully investigate as a result. I always challenge them not to go by 'the medical book rules' regarding symptoms etc. so I'm keeping my fingers crossed that I have a good, understanding consultant, as opposed to some that I have met who enjoy the 'God Complex' with patients.
I haven't read all of your replies but.... what did your GP have to say. My GP gave me my results and told me it wasn't cancer and was bronchiectasis. We read the results together. Your GP should be helping you whilst you wait for your referral. Also .. if it was cancer you would be being seen quickly. I know all of this is very scary. Talk with your GP. Good luck!
GP has offered me no support, his response to every question I had was, "It's out of my knowledge base" He also told me not to discuss with my daughter (she's a DR). I'd made the decision not to tell my daughter, and he had no right to say that to me.
I've fixed an appointment within 3 wks of getting a brief call re results from GP.
I saw the respiratory consultant yesterday. He said he wants to keep an eye on the granulomas and nodules for 2 years with 6 monthly CT scans...obviously not the healthiest thing to expose my body too, but he said he wouldn't remove them due to the risk of surgery. I'm not sure why he didn't suggest a biopsy. I asked for a bronchioscope test but he said no. He states he needs "to ponder" and think about what he needs to do because my constant cough and ongoing green phlegm does not relate to what they've found on my lung.
SO...the next move is to have a breathing test, and go back to see him to discuss the results in 3 months time. The next scan will be in 6mths as I have only had one within the last month.
He was really nice and took the time to listen to me as I read out pages and pages of notes I'd made, and asked him bluntly if I had any of the things that I've read on here.
I also asked if the granulomas and nodules would turn sinister, he said "ALMOST unlikely" stating "I cannot say the chances are nil, but there is a chance they could turn sinister, hence the reason for keeping an eye on them"
He said he thinks I have bronchitis, and is concerned about the cough as it doesn't relate to what they found, stating the lung issue is asymptomatic re the coughing (or maybe the other way round - I can't recall).
I'm not sure how I feel about just having a breathing test...my chest (believe it or not) is clear despite the phlegm and horrific (and embarrassing) cough, which sounds like I've smoked 100 cigarettes all my life (which I haven't)
I feel like I could have sat there all day asking questions, as I really need reassurance, but he was really honest with me and said he needs to monitor growth and then will take action etc. He was initially going to scan me every 3 months, then changed his mind to 6 monthly...not sure how I feel about that because I'm a 'deal with it' person and just want them removed. I fear they might become sinister in-between scans and then it might be too late for me. I told him how scared I was, and that I can't leave any stone un-turned due to previous history of misdiagnosis with a life threatening illness I had - resulting in having radiotherapy. He was very understanding.
He was also very empathic when he saw on my notes that I have chronic fibromyalgia on top of epilepsy etc. he said he has a keen interest in fibro, and said it's a 'horrific disease' and warned me it will get progressively worse, which I'm well aware of, but it was nice to have a conversation, and feel understood by him as my Neurologist diagnosed it and basically told me to get on with my life, and to look after myself during relapses (great help!!!).
So, although we went off track a little, it was good to feel heard by someone with a keen interest in further studies with fibro.
One thing I did ask him was if I had a pulmonary AVM (arteriovenous malformation). I was diagnosed with one following a grand mal seizure 12 yrs ago - hence reason for radiotherapy to the brain. He said it wasn't PAVM, so that was a great sigh of relief.
OK, waffle over I'm sure I will have another book of questions by the time I see him again, and want to thank you all who have replied to my post - you've been a great help, and my Consultant was pleased that I'd contacted BLF.
I'd really welcome your thoughts on my consultation, and whether you feel I have been fobbed off, so please feel free to comment, as you have all been through so much, and may have experienced this type of consultation.
I have decided to inform my daughter now following the appointment. She's a DR, so I'll probably get a slap on the wrist for not telling her, but I feel it was something I needed to do on my own yesterday - I was so prepared for being told it was cancer.
My daughter will be able to answer my thoughts about whether I should contact him to ask for a biopsy? He seemed more concerned about getting to the bottom of the cough and phlegm - stating the granulomas and cough don't relate...I'm a bit confused about that.
Wish me luck as I prepare for a slapped wrist from my girl lol.
I have been through a tough time in the last few months and now diagnosed with a pulmonary sequestration with a 6mm nodule attached which they don’t think is cancer after a CT scan! In my opinion (which will not be as good as others so correct me if I’m wrong) they normally biopsy nodules if they give cause for concern. I think September is a long time to wait if you at worried. I paid for a private CT chest scan and was £350 well spent. Included a 40 minute debrief with some of the best resiratory consulatants in tbe country. I know it is expensive but so worth it for piece of mind xxx good luck xxx
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