Hi everyone, I'm new here and just looking for some support and advice.I've been getting chest pain, shoulder blade pain and pain behind my sternum and sometimes my neck feels tight, everything is on the left side and this has been happening for about 10 months.
I have been to my GP a few times last but felt I wasn't really being listened to until a few weeks ago when she sent me for a chest xray and did my bloods. Both came back normal but this week I have felt really out of sorts so managed to get in last night again and she's now concerned about my symptoms despite the chest xray and is sending me for a CT scan on the 2 week urgent referral pathway. She also weighed me and I've lost 5kg since June last year.
My mum and dad both passed away in their 50s from lung cancer (I'm 46 and a smoker)
I'm absolutely terrified and convinced I have it, my anxiety is through the roof.
My chest pain feels like burning and throbbing it's very mild and intermittent and always in the same 4 places (side of left breast and around armpit, above left breast and front of my shoulder, around the lowest rib and near my collarbone while the shoulder blade pain is like a dull ache and behind my sternum feels like a trapped gas type of pain that comes and goes and I feel like something is behind there)
Does anyone know whether the chest xray would miss cancer if I've had symptoms for this long or has anyone had similar symptoms?
My son has autism and he completely relies on me and all I can think about is if I die like my mum what will happen to him
Would the GP urgently refer me like this if she didn't strongly suspect cancer?
Any advice would be so appreciated. I've been reading online a lot and all my symptoms point to lung cancer which is really frightening me.
Thank you
Nic
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Moosmum77
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Welcome to the forum where I am sure you will find support and encouragement. We spoke yesterday and I hope you hear from others in the forum.
You are welcome to contact us on the details below if you would like to chat ,our ask the nurse helpline number is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at lungcancerhelp@roycastle.org
Hello, thank you for replying and for the chat yesterday.I have such bad anxiety today and thought posting might help me.
I have noticed today that when I'm speaking my sternum feels bruised I'm not sure whether it's a symptom or not but it's another thing worrying me now.
oh gosh it’s the waiting that’s the hardest - can the GP give you anything to help with the anxiety is really bad? Worst case is you have cancer, if so read all the amazing stories of people with lung cancer on the Roy Castle Website - hopefully they will give you hope as the treatments that are around now were not when your parents unfortunately passed away! Wishing you all the best and hopefully it’s nothing to do with cancer xx
Thank you for replying I really appreciate it, talking helps somewhat as I just have this massive fear of the worst happening. I have been reading the forums and there are so many brave and wonderful stories it's good to see so many people that seem to have successful treatment as when my mum died she wasn't offered many options apart from chemotherapy and radiotherapy as they said surgery wasn't possible and although her tumour shrank significantly it spread to her brain very quickly and this is what I keep thinking about.
I will keep coming on here and reading, thank you so much
Bless you that’s understandable- if the worst happens and you are diagnosed ask for a brain MRI straight away. My oncologist was straight on it and I had cyberknife to the brain and only needed one round. It’s very clever what they can do. But you might not have it and I I hope not I’m just saying what I would do if you hear the worst as it’s not as bad as it was xx
so sorry to read of your understandable anxiety especially after losing your parents to lung cancer. Many symptoms overlap with many other conditions and your GP can request a CT even if the chest x-ray is not abnormal if you have other symptoms. Putting patients through the 2WW pathway is as much about fast tracking investigations to eliminate it as a potential cause. There are now many treatments for lung cancer - which all take time - that can impact the treatment that may be offered if it is that, that symptomatic patients are put on this to ensure they are 'in the system'. it doesn't mean somebody has lung cancer despite a family history just that they're being investigated due to suspicious symptoms. There is little evidence that lung cancer is hereditary/genetic for most patients although some may have had similar lifestyles or exposure to certain carcinogenic substances during their lives. Research is underway for some specific rare mutations as it is for what causes lung cancer in never smokers yet many smokers never develop it. There is a lot still to learn about it but there are treatments and many of them.
Many of the symptoms you describe including chest pain and weight loss can also be worsened by anxiety as can breathlessness. The lungs do not have any pain receptors so pain is more often from bone/muscle (often referred to as muscular-skeletal pain) which can have many causes.
Even if tumours don't show on chest x-ray for example if they're behind the heart, the other tests usually show something amiss like blood tests and the next step is usually a CT image. It's good you're being referred. However be aware that investigations take time and a lot of waiting for the tests themselves and the results. They tend to gather a variety of results f something is found on the CT more tests will be requested then discussed by a multidisciplinary team before a consultant sees the patient to talk through the findings. Many who enter the 'clinical pathway' are discharged as their symptoms turn out to be something else for which they're offered referral to appropriate departments or treatment to resolve symptoms.
Finding a way to cope with the many long waits is important as I've learnt over many years - results will be what they will be whether you make yourself ill with anxiety or try and distract yourself so it doesn't dominate your thoughts. Macmillan and Roy Castle lung cancer foundation run a nurse led helpline for anyone impacted by lung cancer at any stage of their situation - including pre-diagnosis so it's good you've connected.
Your thoughts about what happens to your son are naturally dominating your thoughts after losing both parents at a young age. have you ever had counselling for your loss? Have you any provision for him if you became ill with anything anyway - i.e. social care support or continuing care support from your health team?
Lung cancer despite recent campaigning for the right to die by 1 patient has tens of thousands of patients every year diagnosed with it at different stages including advanced and a mass of different treatments. Many survive years and many I've met since becoming involved in cancer research in 2013 survived years before some of the most recent targeted agents and immunotherapy even existed. My own diagnosis was in January 2011 (I was 52 and a never smoker) . I've had similar symptoms to those you describe in the last 18 months and after almost 3 weeks in hospital and various investigations since it appears from specialist imaging that I may have a hiatus hernia - i.e. nothing to do with my previous lung cancer diagnosis. Try not to google as that will add to your anxiety as much of the information that comes up is woefully out of date and inaccurate. Roy Castle lung cancer foundation has trusted and regularly updated information on its website that hopefully may reassure you whilst you wait for the next stage in your investigations. good luck. thinking of you.
Hi Jeanette,The 2ww referral has really made me worry so it's good to know that it's also done as a precautionary measure, I am just so worried about my son because I have no help for him and nobody to rely on if the worst was to happen. I couldn't sleep last night for thinking about this and although I'm dreading the CT on Monday I just want to get there ASAP and get some answers.
You are right about about reading online too much, I have stopped myself doing it as there's just so many horror stories out there it's very easy to jump to the worst conclusion.
My mum wasn't offered many options and she passed within the year so that's what I keep imagining, lung cancer was just a death sentence at the time and then my dad had small cell lung cancer and passed away even quicker as his treatment options were even more limited than my mum's.
I spoke to a lovely lady on the phone at Roy Castle and she was very understanding and reassuring it did help me to calm down somewhat and I have been reading the many stories on here of people successfully completing treatment so I'm trying to hold on to that at the moment.
I am so glad that you have gotten through your own diagnosis and to see that you are still here since 2011 is absolutely wonderful, such inspiration to be taken from that. I am trying to stay positive.
I have been out walking the dog and the chest pain has gotten worse while I've been out, it's like a stitch type pain behind my left breast and on breathing out I can feel it more. Sat down with a cup of tea and 20 minutes later it's still there but has eased off.
Do you know whether a haitus hernia would show up on a chest xray? I keep trying to tell myself that it could be all these different things causing the pain but I'm not sure what actually can be seen on an xray, I was just told it's come back normal.
The GP did a full blood count and said I was also checked for arthritis and inflammatory conditions so seeing as though nothing has shown up it's sort of made me worry more as I was telling myself it could be arthritis etc but obviously that can't be the case.
I definitely will keep coming on here and talking as much as I can while I'm waiting for results as like you say that in itself is really hard, it's the not knowing that's really getting to me.
Thank you so much for taking the time to reply Jeanette, I really do appreciate it.
It's fantastic news that your recent symptoms are not related to the lung cancer, I wish you all the health and happiness in the world.
good that you took the dog for a walk - no, a hiatus hernia cannot show on a normal x-ray. I was hospitalised in October as wheezy, extremely breathless and giddy - I'm not asthmatic (although I did have it as a child until I was about 40) having had tests 3 times in 3 different Trusts over the last 8-9 years but those are the treatments they tend to give people who are admitted as an emergency, I was sent home after 6 days but readmitted by ambulance 2 days later after stopping breathing. the same thing happened in hospital 2 nights later and again the next day so a camera was put up my nose and into my throat to see what might be happening as I kept choking and having difficulty swallowing as well as breathing. whatever they found (evidence of acid reflux) led to them sending me for a barium swallow x-ray which was done mid November but as it was requested by a general ward doctor whilst an inpatient and nobody seeming to coordinate results from tests referred as an inpatient, despite my chasing up since, only when I asked the respiratory consultant who I see once a year what the results were, he looked at the system and said the results were on there but it wasn't his area of speciality but it showed I had a hiatus hernia which might well explain the symptoms I was experiencing despite them jumping to conclusions it was asthma/COPD (I don't have either) related. A CT was done whilst I was in hospital and there was no evidence of malignancy in the lungs so even with a cancer history, not all symptoms that cause chest pain or breathlessness are lung related. I asked my GP to refer me to a GI consultant so somebody could discuss the results with me and I had a letter to say the hospital had received the referral and to phone by 15/2 if I hadn't heard. I phoned 16/2 and told they had received it but were deciding whether to accept it or not!! I asked my GP what this meant and asked if he could chase it up but he said I'd have to wait due to the backlog! I've had different scans and investigations in November and January since discharge from AMU but still awaiting tests hence my advice to try and get on with life as there seems no rushing answers unless you're on a 'fast track or 2week wait' pathway. Even if not malignant, stopping breathing 3 times and readmission by ambulance felt like urgent but almost 6 months on since my almost 3 weeks in hospital and nothing has happened - worrying about it won't make it happen any quicker..
I've also experienced shoulder pain in the last 2 weeks but my GP says if I notice a rash (in case shingles returning as I had that during pandemic) to call the practice for anti-virals. My similar symptoms to yours are having a very different pathway/treatment so I wouldn't be jumping to any conclusions just yet. I had a chest x-ray last February which I requested after several chest infections that didn't respond to 'rescue packs' of steroids/antibiotics which showed an enlarged heart but blood tests didn't bear that out. During the intervening months my GP has suggested it could be heart issues, blood pressure or something else - it often feels like 'guess the condition' whilst weeks and months go by.
Sadly small cell lung cancer if not picked up earlier can rapidly advance although some are responding to combination immunotherapy/chemotherapy with better results than in the past but not everyone responds in the same way.
We lost a very dear friend suddenly whilst I was recovering - I often wonder if his was small cell as it was such a rapid deterioriation. Losing him prompted me to raise funds for Roy Castle foundation by returning to swimming after my surgery and building it up, increasing each visit to recover my lung health. I went on to swim far more than the 130 lengths I'd done previously several times a week and returned to full time work, active life and travel within a few months of my surgery.
Whilst you're so anxious it may be really difficult to think straight about anything as it's likely you're not sleeping well either. Regarding your son, it's worth exploring options even if you were to become ill or need hospital for anything as an inpatient. Do you have family that could step in? Are there any local care services or day centres he could attend?
My surgeon told me to sort things out and whilst awaiting for surgery I wrote my will and the solicitor encouraged me to arrange a power of attorney in case anything went wrong. I don't have any kids but still felt a sense of relief at doing that even though the Power of Attorney wasn't filed with the authorities, (still at the solicitors), it was there just in case.
Having lost my younger sister aged 40 in 2001 leaving 2 daughters aged 12 and 15 (a single mum) then her eldest daughter (33) in 2019 leaving behind an 11 yr old son and then my older sister 18 months ago (66) - all suddenly and none from cancer whilst my dad (94) who cares for mum (92) at home with alzheimer's has survived 3 primary bowel cancers as have I with my lung cancer.
I also said in February that I felt 'really off' and my blood pressure was through the roof despite not having had any BP issues previously. I think some of my symptoms have been worsened by various medications I've been prescribed in the last 12 months. Blood pressure, heart and many other things can create symptoms similar to those you describe but I guess it's automatic to assume the worst after losing your parents to lung cancer even if they were different types. Even within the same type, there can be different mutations, stages, and patients can have different health profiles that might change treatment. Hang on in there.... can you lose yourself in a good film, boxed set, DVD, music collection, book, jigsaw, activity with your son, busy yourself clearing out a cupboard or drawer or rearranging a wardrobe? I know that sounds quite banal but sometimes occupying ourselves with a routine activity enables our brain to get off that broken record of returning to the same anxious track!
Life is not promised to be a long one even if we always assume it will be. Having had to unravel the affairs of my partner's parents not leaving a will nor my sisters or niece, it's led to some difficult issues and family fallouts with us not certain of any of their wishes. I'm not saying this to be morbid or scare you but often we think we'll go on forever but with those who depend on us (kids or parents), it can be a help to all to consider how our affairs could be sorted out if anything were to happen to us. Making such arrangements doesn't hasten our end as many survivors have discovered.
Live life whilst you can, as best you can.... thinking of you and your son.
Hi everyone, sorry I haven't updated all week, I've been in such a state of panic I've been barely functioning.. I'm even more worried now as I have just checked my nhs app and it's updated to say that I'm awaiting treatment due to to be started (estimated) June 2024Rang the GP but they have no results so I rang the CT scan department and they said they haven't got anything on their system as yet but try not to worry.
I'm now terrified that I have it because what other treatment could it be?
Does anyone know if the NHS app can say this even if the results aren't back?
Please, anyone have any experience or advice of this I'd be truly grateful
Try not to panic - easier said than done when we don't know what's happening. I remember being similarly shocked when I received a letter booking me an appointment with a surgeon when I hadn't had results back from PET scan that had hurriedly been organised after waiting months after mine had been found on a CXR. some centres especially specialist centres tend to book appointments that might be needed then cancel them if not rather than getting results then trying to slot people into already full clinics/investigations. As it states an estimate, that would no doubt be cancelled or confirmed once results come through. There is no real connection between many IT systems in hospitals and if like me you end up going to different hospital trusts as well as different sites for different examinations/tests/scans, they cannot join them up but rely on phone calls/emails between staff to coordinate. Many have tried to work round this shortcoming by arranging appointments in advance so try not to worry. Once you're in a clinical pathway at a hospital, it's really under their system not the GPs and often it's when somebody is discharged or the consultant or whoever gets around to writing a letter that gets sent to the GP/patient often some time later that it gets put on the GP record. The idea that it's one wonderful national health or social care system tracking every process or movement sadly is a myth. It's a real shortcoming that those with access to records online often see results without any clinical context or reassurance of what might be normal so invariably start googling and make themselves worse. This may help explain the many tests and timelines involved and there is other information on the website that may help.... roycastle.org/about-lung-ca...
Investigations take time and there can be several so getting in a panic or over anxious will likely make your health worse - they have their processes and tend to gather results then discuss them in a team if anything untoward is found all before advising the patient in a consultation - over the years I've learnt that waiting whether for the tests to be done, results to be posted on systems or communicated to me can take an inordinate amount of time... so try and keep your mind distracted, keep busy (works for me) so your imagination has something else to focus on.... good luck...
Hi Janette, I have rang them this afternoon and my results have gone to the chest clinic and I have to wait for an appointment to see them. Does this happen even if you get a clear result or does it mean that they have found something?I'm really sorry to keep asking you it's just that I am extremely worried and really don't know who else to speak to and you seem to be so knowledgeable and helpful.
Chest clinics with all manner of conditions including cancer so if the results have gone to them for review, it means that's their process. As explained previously, results are sent to the appropriate team for review/discussion then usually an appointment is booked with the patient to explain these - either in person, online or by phone dependent on what it turns out to be. Try not to worry - unfortunately we tend to worry when things take too long, happen too quickly or not at all - catastrophising seems a default on our minds at such times.... whereas it will take its time whatever the results and whether you work yourself up to experience even worse symptoms or try and distract yourself.
I know that's unlikely to relieve your anxiety and many hospitals have different waiting times/backlogs at present dependent on their staff availability that can impact such things so hang on in there a while longer. hope you get some answers soon - in the meantime, try and do something nice for yourself over the weekend or whilst you're waiting. take care
Hi Janette, thank you so much for replying once again, you really have been such a help.I am trying to stop myself thinking the worst, as silly as it sounds I'm praying it's copd or another lung issue that isn't cancer, anything but that... I rang the GP again and they have told me that when I went for the initial appointment about my symptoms that my doctor referred me to the respiratory medicine clinic then so hopefully this means it's going through that pathway for this reason.
I am going to try and busy myself over the weekend as much as possible, you are right about catastrophizing it's just so easy to jump to the worst conclusions.
I've found out tonight that my daughter who is pregnant is having a little girl so I hope and pray that I am around to see her grow, I've been praying so much as my mum always brought us up in the Catholic faith as she was Irish and it's always been a comfort to me throughout life so I hope for God's mercy.
You are so kind Janette, I truly appreciate every bit of advice you have given me, the kindness of strangers is amazing sometimes.
Thank you again and I hope you have a lovely weekend
how wonderful about your daughter - something positive to focus on and even prepare for - do you knit? maybe you could knit something for her or crochet? Although it's understandable to say anything but cancer not all cancers have a negative outcome despite headlines and media saturation at the moment that make us think that way as if every diagnosis has a poor outcome.
When I was diagnosed in 2011 and sites like this and social media did not exist, when I googled I came to the same conclusion that it was dreadful news - but getting involved I met patients who were years out even with advanced cancer - well before today's modern targeted treatments. One I know is 34 years out from his diagnosis... and others I met were many years out with different treatment....
I knew from my dad surviving 2 lots of bowel cancer in his 50s when I was in my 20s despite us being told he might not reach 60 (BTW he was 94 last month and had another primary bowel cancer and surgery in 2016 at the age of 86) helped me view the big C or however we want to talk about it differently.
There has been and continues to be so much global research focused on cancers in general and lung cancer in particular that the landscape has truly changed with its different treatments.... COPD, asthma and other respiratory conditions increase year on year and more research and changes in treatment for those too.
Whatever it is, hoping you get answers and treatment before too long..... no doubt your faith will support you, it's good you have that.
Take care of you - get some fresh air if the weather permits, see the spring coming on, new shoots everywhere, yellow daffodils and other flowers and plants to help us see the hope of new beginnings....
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