i have since few weeks pain in the fingers and a bit in the toes, nausea and chestpain. also a bit of breathing problems and a bit wheezing when i sleep.
I visited a pulmonologist and got checked by him and got an x-ray which was fine. Since my Symptoms did not go away, He sended me to thorax CT (without contrast, cause I am allergic to it), which was fine too.
But my Symptoms are still there. Can it be that they missed (the pulmonologist and the radiologist something in my CT?
Because I worry that I have sclc because of this symptoms I have and have not no idea what to do.
sclc is very aggressive and spreads very fast, then it is no operable anymore.
Anyone has any advice for me what to do now?
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hih1233
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I had paraneoplastic symptoms leading to diagnosis of NSCLC , my symptoms were painful knees and legs .Tumor was found on CT and thankfully I had successful surgery. I would have thought a CT scan would find any tumour in the lung , Your symptoms could be unrelated to SCLC and require further investigation.
Sorry to read of your anxiety about your current symptoms. If a CT has shown nothing then it's likely to be due to other causes. Do you have asthma or COPD anyway? anxiety can itself cause many symptoms including breathlessness, nausea, other gastric issues, headaches, chest pain and others? Are the pains/tingling in your fingers and toes on both sides or just one? Having had lung cancer (NSCLC 7cm tumour diagnosed in 2011), I've also had a trapped ulna nerve in my elbow in June 2015 and had surgery to correct that... all was recovering well until I had a chest infection (RSV) that hospitalised me into isolation in January 2019 and the cannula was botched inside my left elbow where the nerve had been repositioned to. During lockdown my investigations were paused but I eventually spoke to and saw a rheumatologist last December who said if things happen on one side they're more likely to be something specific like a trapped nerve or mechanical but if on both sides, more likely systemic like rheumatism or arthritis but blood tests and other investigations can show what it is. I've recently had x-ray of the neck, MRI of the neck and ultrasound of the elbow after nerve conduction tests showed residual entrapment of the ulna nerve - but recent scans etc show very little damage... so I'm awaiting a referral back to my original hand consultant... as it's my dominant hand and affecting writing, driving, holding things etc, it's quite debilitating but only painful when the sudden spasms kick in but at least I've been referred to specialists who know things. It can be too easy when we have very general symptoms to google, self diagnose or worry due to our past medical history so do get checked out by your GP if you can and referred to whatever service might be appropriate if it isn't cancer.
It took me a long time after my unexpected and sudden diagnosis of lung cancer to stop thinking that every symptom might be recurrence or something else sinister or serious but I found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me put things into context. As he explains, we have illnesses and conditions pre diagnosis and will continue to have them during and after. good luck with your investigations.
I have the pain in the fingers on both hands, but more on the right one. And seldom in the toes. The pain comes and goes and is not permanent.
What is more disturbing is that I also developed nausea apart from the wheezing and breathing problems.
I somehow feel like my body is getting worse daily and I have no clue why it is this way.
Since it is Christmas everything is closed or on holiday. My GP has holiday since January the 2nd.
I also had a very bad hot flush today in the morning which I read could be because of lung cancer.
I can somehow not believe that my CT is completely fine and I have this horrible symptoms since weeks now, and them getting worse. That's the problem. I would not worry if my symptoms would get better again with time.
It's always difficult when GP practices are closed - have you tried talking to a pharmacist at all? they may suggest something whilst you cannot speak to a doctor. My pain from the trapped nerve came and went - it wasn't there all the time (even now) but comes in spasms without warning. Try keeping a diary of your symptoms i.e. whether things are worse at morning, night or when doing anything in particular - and what type of pain (gnawing, dull ache, sudden shooting pain etc) as this will be of enormous help to anyone you're eventually able to see. The hot flush could also have other causes - even if not menopausal .
Many of the current infections doing the rounds are leaving people with unusual symptoms - and having been floored with one lately (for 4 weeks) I heard sounds in my lungs that I had not had before (despite some really serious chest infections between 2015 and 2020 and asthma from 6 - 40 although clinically proven since my LC diagnosis that I do not have asthma but do have bronchial hypersensitivity and another condition which has warranted and responded to relearning how to breath through my diaphragm as my breathing had become distorted and dysfunctional since my lung surgery. I've often had CTs that were ok but had nasty chest infections including pneumonia, pseudomonas and RSV - all with far worse symptoms than my lung cancer so it is possible for systemic responses to be caused by the body's response to infection as it tries to mount an immune response. good luck.
I didn't have a cold first with many of the infections I had - just went straight into sudden onset symptoms which is how/why my lung cancer was misdiagnosed and mistreated in the first place so as you can imagine I tended to be a bit super vigilant!
It reads as if you're convinced that you have SCLC yet nothing showing on a scan which any form of lung cancer would show - so am unsure why you believe it might be SCLC rather than NSCLC or anything else? Is there something in your family background leading you to this conclusion? Even if a small lesion is found on a CT (and they do show up all sorts of things) there are definite pathways to follow up if classed as pulmonary nodules. Now we have targeted lung health checks in parts of the UK, we are seeing many more with nodules in their lungs which is why the protocol has been so well defined in all the pathways.
You call your consultant a pulmonologist - a term mostly used in Europe and USA - which country are you in? They have quite different responsibilities from chest physicians in the UK where if somebody does have cancer, the multidisciplinary team would be involved. Your reference to ER also suggests you're not in the UK so am unsure how your health system works - in the UK we cannot go straight to consultants as GPs are the gateway to getting referrals to specialists.
Where would you usually go with ill defined general symptoms in your country? If a GP, is there holiday or emergency cover on at their surgery/practice?
Even if male, a hot flush can be a sign of infection or virus affecting your body temperature... not all women experience them during the menopause. Do your pharmacies have minor ailments clinics that you could visit? They may be able to offer some advice but although I know you haven't had the answer you want (SCLC?) from your scans and specialist appointment, it sounds as if the symptoms are from some other cause that warrants treatment of some sort. good luck. hopefully things are opening up today wherever you are based?
And here is everything closed or on holidays till January 2-9 th
No matter if Specialist or GP.
I am convinced that I have SCLC because I have smoked a lot in my youth and young adult years.
I quit smoking 12 years ago.
And because of my different paraneoplastic symptoms like strong pain in the fingers and a bit pain in the toes and wheezing while lying in Bed and very bit of breathing problems, in one point where I have chest pain in the right chest and a nausea.
I am super convinced that this can only be SCLC since my natural immunesystem is weak.
I can not imagine what else could really do this nasty symptoms?!
I still can not understand how it comes that my Thorax CT was super clean (commented by Pulmonologist and radiologist).
I worry that because the CT was without contrast (I am allergic to contrast) maybe the SCLC nodules were too small for the CT to get catched.
And since my symptoms get worse in the last few days (which is typical for cancer)
I think that I have lung cancer, especially SCLC (the smoker lung cancer).
As far as I know the NSCLC does not do this paraneoplastic symptoms, there you have more a cough or mostly no sypmtoms when the NSCLC is very small.
So I am in a very bad situation. The ER in Germany is only for people in emergency condition like heartattack, stroke or really bad breathing problems, else they will not accept you as patient and send you back home.
Thanks for explaining your rationale and where you live. Well done on quitting smoking 12 years ago - that's a great achievement.
Not all smokers develop cancer and many develop non small cell too including adenocarcinoma but these would show up on imaging as your specialists explained.
Many never smokers develop lung cancer but the best detection method is by CT so nothing shows on the CT, that leaves nothing to biopsy which would be the other main investigation. Exposing people to unnecessary radiation with too many scans can itself cause harm to cells. It's an issue in lung screening where some people have pulmonary nodules that may or may not develop into something but are too small to biopsy but still show up on a CT. Therefore if nothing on the image -commented on by the experts you saw, it would seem very unlikely to be lung cancer.
I had some really nasty symptoms during the pandemic and saw my GP in March 2021 and my GP referred me for no end of tests - including seeing my chest physician and requesting a CT of thorax but the consultant sent me for a chest x-ray which was exactly the same as the one some months before so he said whatever was going on was not in my lungs which then prompted other tests. My own lung cancer took several weeks/over a month to get a CT even after the lesion had shown up on chest x-ray and I'd been in hospital for a week as my other symptoms meant lying still in the scanner wasn't possible, then when called for appointment, the scanner had broken down and parts had to be ordered. It was over 2 months before my treatment but even so, I was back at work and swimming 3 months after surgery. We imagine with cancer that every minute we're not seen, it must be wreaking havoc on our body even if we already have been told we are suspected for lung cancer which isn't the situation for you.
Symptoms can get worse with many conditions not only lung cancer - I've had far worse exacerbations of symptoms when diagnosed with pneumonia, pseudomonas and RSV and hospitalised with each of those and others between 2015 and 2019 - all of which were worse symptoms than my actual lung cancer diagnosed in 2011 after the 7cm tumour and half my lung were removed in the December (I'm a never smoker). I've met and worked with many lung cancer patients whose symptoms didn't worsen every day - indeed it's often commented on that many people 'look so well' even with lung cancer. cough isn't the only symptom for non small cell cancer and the tests undertaken to investigate any suspected lung cancer are the same initially then once results show any differentiation, the pathway to treatment may differ as there are many targeted treatments dependent on the pathology results if particular types non small cell cancer. The majority of lung cancer patients are detected at advanced stage in the UK when symptoms may differ but other European countries have more access to specialist s, don't use GPs to gatekeeper access to specialists, we use Chest x-rays before CT and many are often treated for their symptoms (especially never smokers) which can waste weeks/months as lung cancer is never suspected.
The situation really has changed in the investigation and treatment of lung cancer in recent years so I'm curious why you are 'super convinced' of your self diagnosis despite experts' investigations.
I hope you can get some reassurance and appropriate treatment for your current symptoms. Anxiety and worry can worsen any symptoms and create new ones so if you can distract yourself with some activity this may help reduce your constant thoughts on this if health services aren't available as you'd wish currently.
Do your community pharmacies offer any sort of service where you could explain your concerns? they may have some treatments suitable to relieve your current symptoms whilst you wait for your GP practice to reopen after the holidays. good luck.
Many many Thanks for your very long and kind answer.
I am very glad that anyone is caring and writing such detailed answers!
Your tumor was really big and I hope that you are doing well now!!!
My problem is that I read a lot about the sclc after my Symptoms began few weeks ago.
That SCLC is doing paraneoplastic symptoms like low level Natrium (which also makes nausea) and arthritis like symptoms in the fingers and toes.
Then my Chest pain and wheezing and mild breathing problems was also matching to lung cancer and SCLC especially.
That was the reason why I went to a pulmonologist to check up what is wrong with me.
And He let the hospital do the chest x-ray and the thorax CT (without contrast) and the CT was checked by him and an radiologist.
The Thorx CT was around 10 days ago. And since then my symptoms got worse on daily basis. I am shocked how this can happen that my symptoms are getting worse that fast.
Because of many internet pages telling SCLC does this endoctrine stuff and paraneoplastic symptoms.
That's why I am super convinced that I have SCLC. I never had such symptoms in my Life and they really scare me. Since they are getting worse altogether and daily?!
I really really can not understand how my CT was complete fine with me having this incredible cluster of bad symptoms.
Because of this symptoms my anxiety is also getting worse, this too!
No pharmacists do not offer any sort of service apart selling and giving medication. They do not comment on symptoms. Only doctors do this in Germany.
So I tried to call today different lung clinics, but on doctor was available to tell me anything and new appointments are hard to get.
I also read that SCLC is really very aggressive and does spread very very fast. It is the worst lung cancer type. So thats why I also am convinced that my symptoms are getting worse that fast, because of the SCLC being that aggressive (even not have been diagnosed or suspected with cancer).
But I do not understand my different symptoms and the pain I have.
That's why All in All I am in a very strange and desperate situation (and this during a winter holiday season where doctors are not available) and I am very glad that in this place I get any reaction and detailed answers.
sounds as if you're worrying yourself into quite a state with your symptoms - yes I'm fine now - I have been left with a weakness for developing chest infections although having had my tonsils removed before the age of 4 meant that happened well before my cancer diagnosis and treatment. However they do tend to be much worse now - but with the right medication and investigations to check that the cancer hasn't returned, I recover each time - even if it can take weeks/months to recover my fitness. I've worked, swam and travelled continuously since my diagnosis and treatment.
I had a nasty cold 4 weeks ago that went to my chest - and in the UK our hospitals are overstretched, ambulances take hours to get to you and Accident and Emergency departments overwhelmed - getting an appointment with a GP is extremely difficult (often only a phonemail) and I had new symptoms for me - I could hear bubbling fluid in my lungs and had a pain beneath my sternum that I'd not had before. My older sister has recently died from an undiagnosed condition (she had a heart attack and fell downstairs) so my mind raced to wonder if I had what she'd experienced but then logic/rationale kicked in - knowing I had no voice to speak to anyone (to call an ambulance), the news had reported people were waiting over 10 hours on trolleys in ambulances or hospital once they got inside so I just took my inhaler, opened the rescue pack I have (antibiotics/steroids), used my Apple Watch to take an ECG and check oxygen sat levels and thought I'd prop myself up in bed and hope to get some rest. I tested for covid but it was negative (I've tested twice a few days apart thinking it must be wrong) Like you, I googled the symptoms and it described it might be pneumonia or pleurisy so having had pneumonia in 2016 and knowing what the hospital gave me at the time, I took the course of both tablets for a week and it's now week 5 but little by little I'm much better each day. There are many people with viruses and viral infections in the UK so with warm shops/houses and germs circulating, it can be easy to pick up something even if we stay in our home, if somebody delivers something who's been out or somebody visits, we can be exposed to germs that can develop further. There are many conditions with symptoms worse than cancer and many that overlap with lung cancer which is why the covid pandemic was such a strain for its detection and treatment. Hopefully when you can access medical help, somebody can investigate for potential other causes as your imaging shows it isn't lung cancer. Do your symptoms ease if you take anti-inflammatories or paracetamol? That might be worth taking if you have changes in temperature and general symptoms and see how you respond.
I often find it better to distract myself with something I can lose myself in - like a good book, film or helping somebody out, sorting out a cupboard/drawer or something to stop my mind from going to such places if there's little I can do about the situation at the time. also deep breathing exercises can help reduce anxiety and may help your wheezing too. hope you find a way to cope with it until you can see somebody when services resume. best wishes.
Sorry to hear of the worry with your symptoms. JanetteR57 has provide a very comprehensive and detailed reply, of which there is not much to add.
It is reassuring that your CT scan is clear and your symptoms could be pointing to many other reasons, e.g a viral infection. Obviously for your peace of mind and to have an answer, it would be good to go back to the doctor when they are available as you have said.
There is a lot of information on the internet that is inaccurate and not up to date, and the more you look at this, the more anxiety it can cause.
You may wish to contact the European Lung Foundation or you can look at their website: europeanlung.org/en/
If you would like to discuss anything you can email ask the nurse at lungcancerhelp@roycastle.org
Yeah many many great answers from you gusy here! Many many Thanks!!!
At the moment I am worrying a lot about my symptoms getting worse and that my CT was (without contrast) and maybe something was not shown there because of this.
The pulmonologist and radiologist told me they would still see a lot,
But I asked another doctor today and He told me without contrast is not enough.
What should I do now?
I have no clue. I can not do once again a CT since I am allergic against the contraststuff.
My last CT was 2 weeks ago.
And when I go next in one week to my pulmonologist, the 4 the time in last 4 weeks (first 3 time was check up, lungfunction test and then x-ray, then CT and then CT results appointment) he will think me crazy.
Already anyone around me thinks me insane and only fixed on SCLC because of my crazy anxiety.
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Living with a Diagnosis
Goodbye and thank you
When will I feel a bit better?
Irressa, anyone taken it before? 
