So Scared

[Clark410125]

This is my first post and to be honest I feel a bit silly posting because having read most of the stories on here I as of yet have not received a diagnosis of lung cancer.

I'm a 41 year old male who started coughing up blood at the start of January. This has happened to various degrees every single day, initially I didn't think it was coming with a cough as it would just seem to fill in my mouth or appear if I sucked in my cheeks over and over again. I buried my head in the sand for the first week and a half before bucking up courage to tell my wife. Before that I made the mistake of Googling my symptoms which also included being short of breath plus a horrible constant salty taste in my mouth I am sure you can picture the results that were returned from Google.

I went to an ENT appointment at the hospital and they couldn't find anything wrong but said they would write to my GP as the cough, blood and arm ache (although I didn't have the arm ache until after I googled symptoms) were cause for concern.

Saw my GP who sent me for an urgent Xray (that was 8 days ago) and at the same time referred me for a CT Scan which is happening this evening. I am just so scared I have convinced myself that I have lung cancer and already have gone through so many stages of grief even before the diagnosis. Too scared to phone the GP to find out if my chest xray results are back and just cannot concentrate. I know most of you on this forum have much more pressing issues but I am so scared, each day is difficult to face. I have been a smoker for 25 years never really trying to give up and I seem to have come to terms with the fact it will be bad news.

I just cant imagine how I will cope, even after reading your posts on here and taking so much courage from them, I don't feel I have any fight in me. I just want to sleep and wish I had just ignored the symptoms and carried on as normal. Things just don't seem to be moving fast and I jump every time the phone rings. I have four young children and worry about them all.

I'm sorry for posting. I don't expect replies but have found this good to rant a bit.

Clark

[Stevewhite81a]

Hi Clark,

First of all, don't feel sill about posting here, when I originally posted I did not have any diagnosis either. There is obviously something not right that you need to get to the bottom of. If the ENT consultants have had a good look and couldn't find anything, it makes sense to check out the respiratory side.

Google helped me to get to my diagnosis, so personally I can't say that it is a bad idea. Your doctors seem very proactive, so you might have an answer sooner than a lot of people. I think that it is only right that you should be worried, I was when I knew things were not right. From what others have told me, you would hear pretty quickly if your xray was abnormal. I'd give them a call. I've also done a little bit of what we are often told not to do, and looked at Google. From an article in a journal of clinical medicine I found this:

"in a review of bronchoscopic

records of 41 patients who had presented with

haemoptysis and a normal CXR found a diagnosis

of bronchogenic carcinoma in 4 patients"

this seemed to be the worst case scenario as reports from other studies showed most other studies where haemoptysis was present with a negative Xray article showed much smaller numbers of cancers being found. The article also said

"The low

probability of finding carcinoma in a patient

with haemoptysis and a normal CXR reflects the

fact that haemoptysis is usually a late symptom

of lung cancer by which time most of the patients

would show abnormal chest X-ray findings."

Good luck with the scan later today, and try not to diagnose yourself with the worst possible outcome. It is sometimes hard enough to get a diagnosis after a series of in depth tests.

Steve.

[Clark410125 in reply to Stevewhite81a]

Thanks for the reply Steve. I'm ust worried because of this urgent two week referral scheme that is in place i.e that I should have a consultant appointment where all the results would be discussed. So part of me is thinking that they are just waiting until the CT Scan results are in and then will just deliver the news all at once. Plus its constant on the news about the pressure the NHS is under so I'm thinking 8 days isn't going to be unusual even for a bad result. I'll buck up the courage I am sure, eventually.

[Clark410125 in reply to Clark410125]

So bucked up the courage to call the surgery today and was told that my xray results had been transferred to the lung specialist for which I am waiting for an appointment through. No other information.

[Alexandra_JGW]

Hello Clark, once you have had the CT scan they should then decide if they will biopsy the mass if one is found. It is imperative you keep on to ensure they review your results as quick as possible. I lost my partner at just 29 to small cell lung cancer and I just know how important it is to push and push and push until you have the answers you need. The hospital told my J that it was all in his head and the shadow looked like a chest infection. Please please please take care.

[Clark410125 in reply to Alexandra_JGW]

Thanks Alexandra - I am so sorry for your loss. I am still keeping everything crossed.

[GlynnBar8 in reply to Alexandra_JGW]

Well said Alexandra. I was trying to look for information to help put Clark's mind at rest. But you are so right, you need to push for answers. I too was told my symptoms were in my head for a long time. Thinking about it, I kind of accepted it as that is what I wanted to believe. Although I did push the docs, it wasn't hard enough, as I backed down every time they "reassured" me that everything was fine. When I got the diagnosis everything made sense and I think should have been ringing alarm bells. One good doctor who I spoke to for advice told me that I shouldn't be looking for a diagnosis, that was the job of the doctor. Unfortunately I was not under the care of the good guy, but when your doctor doesn't do his job, you are on a wing and a prayer.

So sorry to hear about your partner, I can only wish that in time you can move on but always remember your J with happiness.

Glynn

[Stevewhite81a in reply to GlynnBar8]

Hi everyone,

I hope you didn't think I was being flippant or trying to stop Clark from pushing for an answer. That wasn't my intention. Clark, I hope you get an answer soon.

Steve

[Clark410125 in reply to Stevewhite81a]

Thanks Steve yiur post actually pushed me to call them in the first place so definitely a help

[Alexandra_JGW]

Please keep us updated and if you have any questions just ask. I wont have all the answers, depending where you are in the country I know some good doctors and private health care I would recommend definitely. Has anyone tried the gene testing? This is done privately but the NHS can refer you. Bloods are sent to America to be tested and rather than treating the C word they can treat the defected gene. Trials are also meant to be good. Unfortunately J never got to his but if I can point just one person in a half right direction I will x

[Clark410125 in reply to Alexandra_JGW]

Thanks again Alexandra. I'm an ex Londoner who moved to North Wales many years ago. I think the gods are against me as I took a chance and changed jobs two years ago, leaving a place with fantastic health insurance to join a small company with very little perks. just didn't get round to taking up a new policy so now trusting the NHS to deliver. In fairness the staff who I have met so far (CT Scan) really put me at ease and it gives me great hope. Just annoyed that my gp didn't give me any information just felt like I have been chucked over the fence and have no contact numbers or anything to call the specialist. Have had some distressing symptoms over the last few days with my throat. I never make a fuss and I need to get my head around becoming a pain and badgering people. Have had a friend offer to send me for a private consultation but I won't take that up as it would be a one off and don't want it to push me to the back of the queue with the NHS.

[Brogan-12 in reply to Alexandra_JGW]

Hi have you got a link for the gene. Testing my partner was diagonosed in september eith sclc he his on his final chemo. This week just getting wotried now wot next so sorry you lost your partner he was far to young. To have this horrid illness take care xx

[michelle1hatch1 in reply to Alexandra_JGW]

I am sorry to hear about your loss.

You say the Nhs can refer you did gene testing. Is this something your GP can do.

My GP has been great and has referred me for a 2nd opinion which just endorsed the first diagnosis. Even though the guy I saw was a professor he did not suggest gene therapy.

I am in the early part of my cancer journey, but want to have all options open to me.

If you feel able to reply I would be grateful but fully understand that you are dealing with your grief about the situation.

Michelle

[Alexandra_JGW]

I completely understand that. Trust me when I say you won't be a burden to anybody. My J felt he was and if you have people around you who love you they will be by your side every step of the way. Forget being the 'Man' for a while and concentrate on your health. What I can't understand is my J was coughing up blood and admitted to hospital and was not allowed to be released until they knew what was wrong. Unfortunately it was never TB like we hoped. Just stay strong and we are all here if you need us. As I say I don't have all the answers and I'm still dealing with grief so if I sound negative at all I am very sorry. I just know the system all to well and I wish I could help you all.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Clark 410125

You have had a lot of advice and support from all on HealthUnlocked. Once you have had your scan, test results and hospital appointment please don’t hesitate to call out free nurse Helpline 0800 358 7200 or email [e-mail] if you feel you would like to talk to someone.

Kind regards,

All the team at the Roy Castle Nurse Helpline

[Aarony in reply to RoyCastleHelpline]

Hi Roy Castle,

Do you have any information on the chances of the PET/CT not picking something up if lung cancer was the cause of my ailments over the last two years? I am worried about the symptoms being related to paraneoplastic effects or early symptoms of small cell lung cancer.

thanks

Aaron.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Aarony]

HiAarony

18 F-fluorodeoxyglucose positron emission tomography (FDG-PET) is used to evaluate suspicious pulmonary lesions due to its diagnostic accuracy. In this study (Deppen,et al,2012) examined the diagnostic accuracy of FDG-PET in patients with known or suspected NSCLC treated at their institution. Findings revealed that Overall FDG-PET accuracy to diagnose lung cancer was 81%

Available: ncbi.nlm.nih.gov/pmc/articl...

In another study[Available:grandroundsjournal.com/arti...]

The diagnostic accuracy for the staging of lung primary and nodal disease using integrated PET-CT was found to be 86% and 84% respectively in a recent study including 106 patients with non-small cell lung cancer

Some info of interest

cochrane.org/CD009519/LUNGC...

apepressco.com/apjcp/apjcp_...

Regards

All the team at Roy Castle Nurse Helpline

[Aarony in reply to RoyCastleHelpline]

Thank you for replying team. Not sure if this is good or not! I thought 81% accuracy was about the same as x rays. Really king of you to look this up.

[Brogan-12]

Hi when my partner went. For. A chest xray they. Rang him that same day to say he had a shaddow on his lung. Which turned out to be lung cancer but he wad diagnosed within a week after the chest xray and he has never coffed up any blood so your symtons could be a number of things you will worry until you get to the bottom of it. I hope all goes well for you.

[Aarony in reply to Brogan-12]

Thank you Brogan, I just need to keep pushing until we do get to the bottom of this.

[Clark410125]

So I thought I'd post again with the latest on what is proving to be a very scary journey. I know a lot of you have been through such a journey but I am really struggling to cope. I had a call today from the hospital to be seen by a respiratory consultant on the 3rd March. That's two weeks ago and will be a total of almost 5 weeks since the urgent referral by my GP. I don't know what the ct scan showed and at the moment I don't want to know but another two weeks of this is going to drive me completely insane. Sorry for the self pitying post just in a very dark place at the moment

[Mum2charlie07 in reply to Clark410125]

Hello there, I understand your concern and no one can bring any real comfort until you know what's what. If you ring your GP they will have details of all of your scans. If they say they haven't they are lying. I work in a GP surgery and results are sent through asap. Please God it's good news for you but if not please do not give up hope. They're so many treatments available now. Take care.

[Clark410125 in reply to Mum2charlie07]

Thank you for your message. Had a letter from the hospital today to say my ct came back and showed nothing abnormal whatsoever. Confused now as I am still having blood every day although very small amounts. Mind in overdrive to think it must therefore be oesophagus related. Never been one to worry about my health but now am so paranoid about everything.

[Mum2charlie07 in reply to Clark410125]

So pleased your ct scan came back clear but I understand your worries until you ring out what it is. Do you still have your appointment at the respiratory clinic this week?