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The Roy Castle Lung Cancer Foundation
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Concerned - sorry for posting

Hi my name is Kay and I am petrified!

Hello everyone I write this right now with a feeling that I really cannot continue anymore! In January 2016 I developed a cough, the dr sent me for an x-ray and it was normal.

I have developed another cough and pain in my left shoulder, the cough has been persistent since the onset of 3 colds since November last year & I vaguely recall my shoulder aching when I moved house in October last year - however with these two symptoms I read on the web that it is the first symptoms of lung cancer. I went to the Dr about 3 weeks ago and she listened to my lungs said they sounded clear, she said I might have acid reflux with my symptoms and prescribed PPI's & anti anxiety tablets and made another appointment for me on Feb 20th. I asked what are the chances of lung cancer at 36 and she said 1 in a million! I tend to disagree as there are plenty stories of people getting lung cancer in their 30's - quite ALOT actually!

Basically the cough is still here, the shoulder pain is still here, I seem more breathless than ever and I REALLY am suffering here. I am nervous all the time, I weigh myself every fortnight & eat as much as I can... I am so scared I have cancer! I check my oxygen levels, BPM and blood pressure throughout the day...I am literally in tears writing this but it feels like I have no one else to turn to! What do I do when they tell me I have it, how will I cope!

I need some advice or someone that has been through or going through the same thing PLEASE!

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Sorry I forgot to add that I have stopped smoking 6 days ago after smoking for about 13 years - smoked about 8 a day.

Kay

You need to go back to your dr and ask for further blood tests. I do not want to concern you or scare you, but I had very similar symptoms to you. My breathlessness got so bad that I went to a&be in November last year ( after a clear chest ct in Jan 2016), as it felt as though I was having a heart attack. At hospital they took blood and my sodium level was low, which causes breathlessness. I had a chest x-Ray also which then showed I did gave cancer.

Take control Kay and only then can you confront your fears.

I can't say for certain whether you do have cancer but ignorance is fuelling your fears and a very simple blood test, done by you GP will help to allay your fears. The "key" thing I think you need to know us whether your sodium levels are within the normal range. That said everyone us different, and unlike you I am in my early 50's.

M

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Thanks. Im back on Monday a week and ill ask for bloods and a chest xray. Im literally petrified! What other symptoms did you have?

Hi Michelle,

Your story is so similar to mine, and I was told I was a really unusual case. After being ill for over a year I had a normal CT. My sodium was out of range low, but the doctors said not significant. I was labeled a hypochondriac as I was at my doctors so often. All in all I was unwell for well over two years before diagnosis of sclc. Only now am I finding others in similar situations. Be good to hear more about how you got your first CT.

Keep going

Ray

This is making me very nervous now!!!!

Ray

I also has sclc, and gave just had 2nd chemo. After 1st chemo my symptoms improved greatly. Breathlessness gone and energy levels vastly improved.

Went to UCLH in London for 2nd opinion this week, but gave been told chemo us best option.

I have been having various tests since a suspected heart/angina attack in May 2014, which included the chest ct, abdominal ct, camera down throat ( where they found a hiatus hernia), 3 biopsy so taken, camera into the bowel, where they took 8 biopsy's, but nothing found. I have been having night sweats and hot flushes for years which were put down to being menopausal.

The breathing problems were coupled with leg cramps which kept me awake at night and were agony!!

My sodium levels are improving, as are the cramps and all other symptoms because I am restricted to 1litre if fluid a day. This us the worse bit fir me as I am dehydrated and have bad headaches and ver dry skin, lips etc, but I am learning to cope.

My prognosis, because it is sclc us not the best, but I am encouraged by my reaction to the chemo, and I plan to get around for as long as possible.

You did not say whether you are on chemo, and how you are going, but these forums are great to hear how others are dealing with there symptoms, and diagnosis.

Michelle

Hi Michelle,

It looks like we are on similar timelines! It was 2014 when I took ill. I had CT and cameras everywhere and nothing found. I had a lot of gastrointestinal disturbance (did you?) and a colonoscopy was clear. All through 2015 I was really tired, lots of tests proved a blank so they said anxiety and put me on meds. Blood tests showed low sodium, so they said it was likely caused by the meds. Lots of night sweats too. Leg cramps were also blamed on the meds.

All through 2016 I was questioning myself and when I was struggling to cope I went to A and E. Quickly diagnosed with sclc. Managed two rounds of chemo. Doctors said two years of symptoms were not due to small cell?

The sodium seemed to bubble along for over a year, I seemed to not urinate much at night but in the early morning my bladder was full to the brim. Don't know if you had this too. I think it is always worth letting others know.

If I think about the first signs it was gastrointestinal disturbance, sleeplessness, sweats, dysfunctional urinary symptoms and fatigue. Do these ring any bells with you?

At the moment it is just a case of keep going on.

Good to hear from you,

Ray

All of what you say rings bells!! If you google symptoms though it says cough and breathlessness nothing really about the sweats, which as I said were put down to my menopause!!!

It does seem strange that ct scans and biopsy's were clear and only the trip to a&be on 23rd November last year found the problem, with cancer diagnosed on 24th November. Chest ct was booked in quickly with further conformation and biopsy done 31st December. Confirmation of sclc delivered on 10th Jan this year and chemo started 19th Jan.

My oncologist was very kind, and told me what I wanted to hear, but said 12 months tops😥😥 2nd opinion dr said he does not give "time lines" as everyone is an individual. My sclc is stage 4 and has spread to lymph nodes.

Professor Seckl has said I should have a brain MRI and bone scan plus radiotherapy to brain and chest (list chem) but I gave decided that I don't want this, I am fighting lung cancer and I can't cope with a 2nd huddle and I would rather not know to be honest!!

Hair has now fallen off which for a woman us a "biggie" but I take it that the chemo is working.

Sclc us a bigger, much better to have nscls but hey ho.

Professor Seckl believes that a positive mental attitude works, and I try to remain upbeat, with a desire to beat the 12 months I gave been given.

Good to "talk"

Michelle

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Had a FBC which included sodium test beginning Jan and it was normal (just checked)

That is good.

Kay it really is about knowledge, and pushing your GP for answers.

You are frightened, which I understand, but request another chest x-Ray and if that comes back clear, then you should relax and live your life.

You are young, and must not let your fears get in the way of being happy.

Michelle

Thanks. Are you a smoker ? I read about weight loss and fatigue prior to diagnosis, did you have any of these symptoms too before diagnosis? Sorry for the questions

Kay

I am a smoker and have been for over 40 years, smoking over 20 fags a day.

It is too late to turn the clock back on that and all smokers I find can be arrogant and think cancer won't happen to them. I was one of these people, but there again heavy smokers ( my grandfather included) lived to his 90's and he did not die from cancer.

I believe that everyone has the cancer gene and it takes a "trigger". Mine was the stress last year of my son getting divorced and grinding out that my grandkids were being abused by my daughter in laws new partner. To gave social services involved and see my 6 year old grandson giving evident at a police safety unit was heartbreaking.

Smoking or not I did not have that many symptoms other than the breathlessness which did not come on until sept last year and which I put down to being unfit. The cramps did not start until October, but I did not have any Weight loss and to get honest I have always had a smokers cough.

Yes looking back when I went to bed at night I was a bit wheezy but after a few coughs thus cleared. I Beverly coughed up any blood.

I did get a pain in my shoulder in October which I thought was just a crick in my back and I treated thus with test rubs and I ibrofen tablets. This lasted over 2 weeks before it cleared.

As other posts gave said push your GP for answers, and thus will allay your fears.

Michelle

Wow you are so brave.

My mother in law had lung cancer she was 64. They said she had 6 months and she fought for 13 months.

I have been smoking properly for about 18 years, sometimes heavy sometimes hardly like 4 a day, stopped for a few months or so between. My husband smokes alot like 25 a day roll ups for the last 25 years.

You must have been young when you started smoking as you say ypu are in your early 50's but smoked for 40 years?

I agree we all have cancer cells and my stress and anxiety is sky high, im truly very scared to start investigating this cause. When i tilt my neck sometimes i can feel the strain in my shoulder also (freaks me out) so decided to stop smoking.

Im sorry to read about your grand kids, i hope its all settled.

Kay

I have no choice but to get "brave" as sitting in a corner and feeling sorry for myself is not going to change anything just make those around me miserable.

I was 12 when I started smoking, and 16 when I started smoking more (when I started work). My husband has never smoked, and has moaned at me for years to give up. I do feel guilty now that I did not pay heed to him, but I lived in a house where my dad smoked and my in laws both smoked. All my friends smoked and I lived in an era when you smoked at work. Even if I had if given up 29 years ago I would probably still got this.

Please go back to your GP and get your sodium levels re tested, and ask for either an x-Ray or chest ct.

If it us cancer you can start treatment, if it isn't then GREAT😀😀😀😀

I don't want you to get more scared than you already are and I know that what I gave written may scare you - not my intention at all I can assure you.

Stay strong and remain positive us the best advice I can give you at thus stage until you get the tests you want.

Michelle x

Hello Kayanne1980, and welcome to our forum, I am sorry to hear about the symptoms that you have been suffering and the stress and anxiety that they have caused you. You have done the right thing by approaching your GP a persistent cough can be a symptom of lung cancer and you are correct to speak with your GP about this and ask to have it investigated, there are also other causes of cough which are not as sinister and can be easily treated, giving up or reducing the amount you smoke will also help. It is easy to google symptoms the results can be very concerning, shoulder pain as you mentioned can also be a lung cancer symptom and should be looked at, again there are many causes of this type of pain including frozen shoulder or tendinitis your gp will examine you and is the best to advise on the cause of this. As one of the previous replies has said it is about knowledge, it can help to write down all your concerns and discuss them over with your Doctor at the next appoint.

We have a free nurse-led telephone helpline on 0333 323 7200 if you wish to discuss anything.

kind regards Roy Castle Helpline

Thx

Tell that doctor to give you a CT scan of

Your lungs immediately. I don't understand why drs wait so long. She can't listen to your lungs & tell you that

You don't have cancer! Only a scan can do this. Don't take NO for an answer.

I lost my husband to lung cancer in 3 months because of her misdiagnosis.

He kept complaining of back pain after 2 negative chest X-rays! She Never ordered further tests!! Please speak up for ur life!!

Please don't frighten me any further than what i am

Hi Kay,

I do not think that anyone is trying to scare you. It is just that when you have been impacted by cancer and things could have been done differently, people have a passion to try and stop other from suffering the same poor experiences. Unfortunately, because it can be so emotional, we might come across as neurotic scaremongers. As a couple of people have said, it is all about knowledge. Knowledge that would be good if it came from your doctor, but it is not always clear if they have the knowledge or if they just don't think they should share it. The internet can be good for finding information but you need to use only reliable sites. I know my doctor does not like me looking at the internet, but personally I wish I had done it earlier. For reliable information on X ray, I found this from the Torbay and South Devon Trust -Suspected Lung Cancer Referral Form

Up to 25% of chest X-rays can be falsely negative in lung cancer so if the clinical suspicion is high or there is clinical lymphadenopathy or clubbing, refer urgently to 2ww lung cancer service

Again not trying to scare you, but I think that it is knowledge the patient has access to. From the statement, your doctor must have a low clinical suspicion, you could ask him what this is based on. It might just be age or there could be other things that do indeed add to a low clinical suspicion. If you had been given all this information, it might have put your mind more at rest, and in reality, would it take the doctor much time to explain it?

Ray

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