British Lung Foundation
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Respiratory Clinic referral - SCARED I HAVE LUNG CANCER!

After 7 months now dry coughing during the night and a little now during the day, chest tightness (for the last 3 weeks) and a serious of throat wheezing and choking sensations in my throat, feeling like my lungs do not have enough air in them so inhaling deeper every 5 minutes and accompanied by an icy inhaling air feeling in my throat when I inhale deeply or normally, I have been trialed with asthma inhalers, steroid nasal sprays, strong anti histamines, normal chest x-ray Feb 2016 & Mar 2017, spirometery with reversibility test normal and a peak flow meter reading of 400 the GP has decided to refer me to a lung specialist as in his own words 'I am baffled'.

I am terrified of what they might find at this clinic as they deal with lung cancer and all sorts of stuff - my main worry is that this is lung cancer and it will only be picked up with a ct scan of my chest! Serious of bloods I have noticed my WBC has been increasing all the time - last time it was 8.9 where as last year this time it was 6.1! So that is alarm bells to me that this could be cancer

Has anyone been to this type of clinic before or the symptoms I am describing and what have they done if so or what was your outcome?

Thanks ( I am literally quivering just thinking about it) - I am 36 f ex smoker (stopped 6 months ago) - I am really scared and just want to cry all the time, planning my will yesterday expecting the worst news in a few weeks!

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Yep, most of us on here will have seen a pulmonary specialist in clinic.

Are you in the UK?

I don't follow - normal - but give you steroid nasal spray? And reversibility test?

When you say 'at night' do you mean when you lie down? Have they prescribed antacid like Omeprazole?

You'll probably have another spirometry which gives more info than the surgery one. Depending on that result you may be scheduled for CT scan.

Ask your surgery for a copy of the earlier spirometry results and we can discuss them?

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Hi there

I am in the UK - I have the spirometry test results online - shall I post them?

Yes my spirometry test was normal so not indicating asthma but they prescriped a blue inhaler and brown one and that never helped, GP said I might still have asthma even though the lung function test was normal on that day, I might not have been having symptoms that specific day the test was done. He said my peak flow of 400 was slightly below what he would have expected.

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yep that'd be even better.

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and I added a couple more questions :)

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Sorry never saw them in your first response haha :)

Yes my spirometry test was normal so not indicating asthma but they prescribed a blue inhaler and brown one and that never helped, GP said I might still have asthma even though the lung function test was normal on that day, I might not have been having symptoms that specific day the test was done. He said my peak flow of 400 was slightly below what he would have expected.

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Sorry - I added them in thinking you wouldn't have seen it yet:)

Why a nasal spray? You have PND? Rhinitis? Sinusitis?

And the lying down/antacid?

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They thought it could be PND. Given me lanzoprazole for 6 weeks that never helped and very strong anti histamines still nothing has worked - I had a endoscopy last year to check for reflux and it was normal - posting lung function tests now

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Expected FEV1 3.22 Litres

Percent predicted FEV1 93 %

Vital capacity 3.75 L

Percentage of best ever peak expiratory flow rate 94 %

Expected FVC 3.71 L

Percentage of predicted forced vital capacity 101 %

Forced expired volume in 1 second 3 L

O/E - height 1.7 m (5 ' 7 ")

O/E - weight 126 Kg (19 st 12 lb)

Peak expiratory flow rate 415 L/min

FEV1/FVC percent 80.4 %

Forced vital capacity 3.73 L

Expected peak expiratory flow rate 429 L/min

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Hope this makes sense to you

FEV1 after bronchodilation 3.09 L

Percentage of predicted forced vital capacity 101 %

Expected FVC 3.71 L

Expected FEV1 3.22 Litres

Vital capacity 3.75 L

Percent predicted FEV1 93 %

Respiratory flow rate measured

Spirometry screening

Lung function testing done

Percentage of best ever peak expiratory flow rate 94 %

Expected peak expiratory flow rate 429 L/min

Forced vital capacity 3.73 L

FEV1/FVC percent 80.4 %

Forced expired volume in 1 second 3 L

FEV1/FVC ratio after bronchodilator 81.1

Peak expiratory flow rate after bronchodilation 415 L/min

FVC after bronchodilation 3.81 L

Peak expiratory flow rate 415 L/min

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Yep they look in the normal range.

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It is all very strange - I have realized I had the same issues two years ago

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Sorry to say but the weight could be a big part of your problem, especially when lying down.

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No you are right, I am very overweight and need to loose weight, do you think it could be pushing on my diaphragm? A nurse told me this when I went for my lung function tests.

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Yep and over weight often means lack of exercise, too?

Innerds pressing on the diaphragm interferes with breathing, also presses on your oesophageal sphincter and could cause reflux, many people don't feel it ('silent') doing damage.

Even tho' you've had the gastroscopy, I'd protect against silent acid reflux - taking a Ranitidine (read the leaflet)before bed, no eating/snacking after tea time, cut down on coffee & alcohol & neither late in the day - see if it helps.

Attend your clinic and rule out the sinister stuff, but i'm sure you'll be given the advice you already know:

Stop smoking, get moving, lose lots of weight .... and you'll be fine.

Best wishes, fingers crossed for you.

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Thank you

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I have just been reading the chat. Apart from the weight issue it could be that your symptoms are being worsened by stress.

My husbanddid the 8 week blood sugar diet by Michael Mosley. He lost 1 and a half stone and all his symptoms improved. His breathing improved, his cholesterol went down from 7.1 to 3.4 , his blood pressurewent down and he felt much better overall. It is amazing how good it is. It's not easy but is worth it at the end of the day. Might be worth trying whilst you are waiting for your appointment. Just losing weight is helpful before you go. It's not easy but worth it in the end. He also goes to the gym now.

Hope this helps.

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Hi Diane

Thanks for your response, you could be right but right now I am clutching onto straws and guessing this could most likely be cancer or something far less severe, I really am panicking and everytime I cough or wheeze etc I am reminded that this could be over for me!

Sorry to be negative but I really do not know which way to turn anymore!

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Hi

You must not think like that or you will make yourself even more ill. If you are so upset you should consider contacting your doctor. I know it's not easy as you are very young and you may need support which only your doctor and your family can give you at this time. You may very well be worryingunnecessarily.

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I have contacted them again and he said I need to up my anxiety tablets and use my inhaler WTF they are not working, its so frustrating!

Can being overweight cause back muscle ache as I have had this with the cough also so putting two and two together now as been reading lung cancer causes those pains in the back.

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Hi, many of us here have a pulmonary consultant and attend hospital respiratory clinics. Most of us here do not have lung cancer, though some do. Trying to guess what they will find will not help you. Try to be a patient patient and wait and see. Remember that most people who attend respiratory clinics do not have cancer. :)

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Thank you for your reply I am wishing for some relief, its so hard to try breathe and relax at the same time.

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Hi there is a long list of what it could be and probably the least likely would be lung cancer. I You could be having more breathing problems at the moment due to anxiety which is quite understandable but not helpful to you. Why not google breathing exercises online?

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I will google some breathing exercises, I just hate feeling this way like I am not getting enough air, it makes me so frustrated!

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Yes I get that. There are some very good breathing exercises for those with lung problems and also for anxiety. They should help. Take care.

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Hi 👋 Kayanne just read your posts . I know it's easier said than done but try not to stress worry to much . Speculating about your own health will make you feel worse. wbc is white blood count levels up it's usually infection not or ever heard it signifies cancer so cailm down . Plus inflammatory levels raise fighting I fections or Cronic conditions lungs . Plus form my own knowledge & I could be wrong is that of a patient anyone is suspected with cancer must been seen in 2weeks that a protocol so if you have been longer than 2weeks & a doctor or consultant thought or suspected cancer they wouldn't be leaving you to worry intensionaly . Hope you are put at ease soon am sure hope its good news . Best wishes & hope hear from you x Bernadette x

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Hello Bernadette

Thank you for responding to me.

I am just looking back on my previous bloods and my WBC seem to be rising the whole time and they never constant, they do not seem to be going down so that is also worrying me now!

I was referred on Aug 4th and have not received the referral letter yet to make an appointment so I will continue to wait.

I stress then have anxiety and then I feel worse, I wake up thinking about it and go to sleep thinking about it, its a horrible place to be in!

Thank you for replying to me again, I will post back when I know a little more

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Aww Kayanne sometimes I can worru So I know how you feel & sympathise . Just keep it in perspective or make yourself iller & relax try listen to music distract your thoughts & be positive x 👍🏻Bernadette 😘

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I have just recently been through a similar experience although slightly different symptoms and I was also convinced I had lung cancer , despite being told repeatedly by doctors that at 35 years old I was very low risk.

I had 6 months of coughing, chest pain, occasionally coughing up blood, weight loss and repeat chest infections.

X-ray normal, lung function all normal, blood tests normal. Eventually refererred to a consultant - CT scan showed I had mild bronchiectasis on the lower lobe of my right lung.

Never been so relieved in my life to find out I had a chronic lung condition!

Now slowly coming to terms with what it means and some lifestyle adjustments, but still feel relieved it wasn't cancer.

What I'm trying to get at is whilst lung cancer is a possibility at any age, you can have a lot of symptoms of lung cancer, but in most cases it turns out to be something completely different. Especially at your age.

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Hi there

Thank you for your response I have received my referral just last night and no appointments for the next 14 weeks, I might be dead by then!

Its such a worry for me everyday coughing and then get reminded that I might be dying slowly, sorry to sound so negative but I really am worried.

I am happy to read that you got the all clear - do you smoke?

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If no appointments for 14 weeks then it could mean you are lucky as doctor does not think that you have cancer as you would have been pushed in earlier

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This is true but Dr's dont know everything - I am just worried its found too late and then what

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You only gave up smoking 6 mths ago so lungs will take time to clear mucus like myself you are classified as obese so our weight is not helping our lungs! Wheezing can sometimes indicate many conditions iIwas on the verge of oxygen 2 years ago refused started walking more found pushing a shopping trolley helped as it opened up lungs, started sniffing Eucalyptus Oil which helped clear my airways. Found I started fits of coughing when throat got dry so always have a bottle of water/squash nearby to moisten throat when really bad sucked a menthol sweet (Jakemans) Have you tried sleeping on a higher pillow see if it helps? As I have already said the weight is not helping us. I had a CT Scan & it showed 2 shadows on lungs an MRI Scan showed 2 nodules so waiting for another CT Scan to see if they have grown as I have a Mass in Ovary so have to have everything removed to check for cancer. I know Cancer can be a worry if suspected but we cannot change what we have or might have just have to try to eat as healthily as possible get some exercise daily & try to lose weight.

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Hello Christabella

I echo what you say about weight and menthol sweets etc. I try have this all the time but it works very temporarily and then it starts all over again, my blue inhaler used to give me some relief but then stopped working, obviously being human we think if nothing has worked it has to be sinister right?

I am sorry to read about your nodules and mass on your ovary, let me know how you get on? What do they think the nodules are?

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If the next Scan shows no growth they will leave alone if growing then biopsy to see if Cancer. If Inhaler not working any more it needs to be changed

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I hope it shows no growth and if there is growth that it is not the awful C! Holding thumbs and praying for you x

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I can live with 1 lung

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Lung cancer, even early stage stuff, normally shows up as a shadow on an X-Ray

Early stage lung cancer is usually curable by surgery or radiotherapy anyway

At 36 yo you may not have smoked more than 20 pack years (on average one times a 20-pack a day for 20 years). When I was mistakenly diagnosed with lung cancer by a Leeds based pulmonologist (who wanted to take out one quarter of my lungs, convinced by an X-Ray and then a CT scan but bamboozled by an ultimate nuclear science PET scan which showed I had no cancer). I switched to Papworth Hospital's lung defence team when he ran into head-scratch territory.

Virtually the first thing they said to me was that they would never have suspected lung cancer as I had smoked less than 20 pack years and I did not report any other polluting environmental factors, like working in mines or with asbestos. Dunno why that 20-pack year guideline isn't given more publicity to encourage smokers in their 20s and 30s to give up.

Don't panic - it's unlikely that you have anything that'll kill you in the near future and we all usually adjust to having some condition that with good management techniques can be livable with. Get fit, eat well, sleep well, carry on enjoying the good things in life!

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Thank you - just worked out my pack years and it was 11 or so

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They have to mention Cancer just in case you have it have they done blood test mine showed no cancer marker but mass in ovary might still be cancer think they say that in case b/ts got mixed up etc XC

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They did normal blood tests like FBC etc with no cancer marker test but that was normal.

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Hi Kayanne, welcome to our support site. I have read all these comments and I have read your post. I am from the USA. I definitely can understand your anxiousness. As for myself, I can deal with facts. I'm the type of person, let me know what's wrong with me and I can work with it. It is the "not knowing" that keeps us up at night, keeps us in a mental H, and it is very difficult to think of anything else, during this time. Once you have a confirmed diagnosis at least then you can begin to deal with it. All of us have experienced some sort of respiratory illness, some very serious, some cancer. As for me, mine was lung cancer. That was back in 2011 and I'm still here. There is no way to know what you have exactly without a CT Lung Scan. When you go to the Specialist, DEMAND one. It is bad enough to have to wait 14 weeks! Surely to God you won't have to wait any longer for the scan?? I would love to visit England and the UK sometime; but the socialized medicine insurance that you have, is substandard to the USA's. Here, you would have been scheduled right a way and went from there immediately. You made the statement that you could be dead by then! Under the circumstances it is not uncommon to let your mind run wild, nerves on edge and all the sleepless nights. One support site that I used when I was so new to everything, was inspire.com--honestly Kayanne....I read so many post and leaned so much....but it was after my diagnosis. So, until after you know exactly what is wrong, you don't know what to research. Did you know that studies have shown that for the most part, what we spend so much time worrying about....actually, never comes to pass.

My primary care doctor sent me to a Pulmonologist after so many recurrent bouts of Bronchitis. After each round of antibiotics, it wouldn't be no time I would be sick again. He felt like I needed to a see a lung specialist....and it was off to the races! Everything happened so quickly....I was diagnosed in Sept. had a CT Scan, then a PET Scan, Biopsy, Lung surgery and 4 rounds of Chemo and was finished with everything on 12/24/2011. It really was like a whirlwind from Sept. through Dec. I wish you well. Try not to think think the worst and quit researching something that may not even apply to you. Girl....enjoy some life! Go out and kick your heels up! Best wishes, gg

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Hi girliegirl

Thank you for the message, I am sorry to read about your diagnosis, were you a smoker? I am so fearful that my smoking of 18 years has lead to something so dangerous, in floods of tears, feels like my life is over!

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Good morning Kayanne, Yes I smoked all my adult life. Have you quit smoking? I hope so. For everyday you don't smoke, I say you gain one. I really don't know if it's true, but it sounds right, feels right, and I hope it is true. It is motive to continue to move forward and conquer your fears. Don't feel like your life is over. Personally, I think you are letting your mind run away with you. Take some deep breaths and quit worrying so much. Things are not as bad as you think most of the time.

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Morning

Yes I quite nearly 7 months ago and cannot even think of smoking right now, makes me feel really ill if I do (which is a good thing), I am sorry for all the questions, I am not by no means trying to compare with you but are you my age and did you smoke alot?

Thank you for listening to me :) means alot

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No girlie, I'm sure I'm much older than you. I will be 60 the end of this month. I would actually say I was a heavy smoker. I could have quit 100 times, but I enjoyed smoking. I just hated they weren't good for me. If you know what's good for you, you need to not start back smoking after all this is over with. Your lungs begin to heal themselves when you stop smoking. The next time around maybe more treacherous. Cigarettes ain't worth it! No problem with your questions. Fire away. But I do have to get a shower here soon. I have a Doctors Appt. this morning.

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Hi there

I totally agree with you, I loved smoking it was so trendy for quite some time and in my mind I never really thought about the dangers of smoking, you are so positive you making me feel better already - thank you, you are right, until I know what is wrong with me I can research all day for something I dont know what I am searching for, the other thing that is on my mind is I have a back, its been like this for a while now, its when ever i move my left arm I can feel some sort of muscle strain, I read that shoulder and back pain can be a symptom too, so there you go worried about this now also..... You know my mother inlaw passed from lung cancer nearly 3 years ago and I think this is where this fear has come from, my husband smokes 30-40 a day and I plea with him to stop every day like I did....

I pray every day to feel better also :)

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Kayanne, I understand completely. Just try to keep it in perspective. Take deep breaths. One word of advice if you will, is don't research anything else. The internet is not always right. I'm serious. Ask your doctor. He will tell you . Now, there is nothing wrong with being on the web site or even inspire.com, that's a great support group too. A support group is really wonderful because these people have already experienced their illness. They can share with you what works, what don't, What to expect, answer questions for you, all those kinds of of things that the doctor may or may not know about. I will give you an example. While and after Chemo, I had mouth sores or mouth ulcers. They were so painful and brushing my teeth was just miserable. It made me feel miserable too. Toothpaste set my mouth on fire. So, I bought me kiddie toothpaste...Blue Berry Spongebob

and Very Berry by Strawberry Shortcake. Problem solved, no more pain.....I shared that with everyone there. Now, do you suppose the Doctor knew that kid's toothpaste helped your mouth--and then I bet you wouldn't find that online either. (He knows it now) We all shared things to help one another when we found an idea, we would pass it on.

So, until you have your test, I would stay off researching and just use the support groups. That's really all I know. Take care.

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My husband suffered like this for s long time fluid in lungs their is s medication they can give you but only in hospital and you have to stay in a couple of weeks they might also give you oxygen to help with the breathing he's on it 20 hrs a day and it helps hope things work out well for you what hospital are you going to Salisbury districtone is great

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Hi Js123 - thank you for your message - I wish my appointment would come round now so I can get things looked at, each day to me drags on and then I start to think how fast is this growing!

I am going to Nottingham City hospital

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Honestly, you are going to have an ulcer if you have anything....just from worrying so much Kayanne. Worst case scenario, tumors don't grow very fast, in fact, I have a new one in the bottom of my right lung now. The CT Lung Scan picked it up on June 30 this year. So, I will go back in 3 months for another scan. They will compare the two scans, to see if it is growing. If it is, I will have a biopsy. But it still grows slowly. Right now it is 1mm. Very tiny. So, until you know what your are even dealing with for sure....quit worrying so much. Same goes for me...until I have a biopsy,(if I even need one)I don't know what I'm dealing with, so I don't worry too much about it, I pray about it.

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Hi everyone

I am sorry I have not been on here much just really worried (STILL) - I had my appointment at the Respiratory clinic and saw a consultant - we talked he listened to my lungs, talked more, did a lung function test and he wants to see me in 3 months time i.e. January 2018 - he believes from what we discussed I could have a sensitive upper airway caused my cat allergy........I questioned why the antihistamines are therefore not working and he said they wont as I am staying in the allergen environment, I am still coughing to this day (night time is the worst, I wake myself up with it) - as for the wheeze he said my lung function test and the fact that the wheeze goes when I have my inhaler is indicative of an upper airways reaction/restriction, he has advised to continue to use my blue inhaler, stop the cat from sleeping on my chest at night and continue to wash my bedding on a high temp, he suggested that if the cough is still there and I feel no difference we will try steroids and opt for a ct scan - I asked what the likelihood is of lung cancer he said

Are you loosing weight - NO

Are you lethargic to the point where you cant stay awake - NO

Your WBC is normal - I am pleased with that

Two chest xrays - One in 2016 & one in 2017 - both normal - he said this is reassuring to him - he showed me the xrays and he looked and enlarged them both.

My Eosinophil count together with my lung function test are indicative of asthma reaction (so my letter says to my GP)

He said that he would be very surprised if I had lung cancer and if I did with the pains I have (I have a chest pain now - just come one about 3 weeks ago) - he reckons that I would have been very ill by now as the cough has been present for a good 10 months......

The pain in my chest is when I lift myself up from bed or a chair or get in my car, making me tremendously anxious thinking that this is a tumor pressing on my chest....

Any advice from anyone :)

Thanks

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Hello Kayanne1980 .

I am sorry to read about all this stress you have with your condition. To me, the doctor you spoke with seems to have been thorough. He didn't dismiss your worries but tried to explain the reasons why he doesn't think you have cancer.

The cat sleeping on your chest definitely raised a red flag with me. If you are allergic to dander then yes, you need to keep him/ her off your bed. In fact out of your bedroom at least. I have a neighbour who was allergic also. In the end she kept the cats on one floor and did all her own living on another, just to avoid all the respiratory issues she was having. I know you love your cat. I love my dear , sweet dog too. So I understand it will take some getting used to.

If you still aren't feeling satisfied that you are indeed cancer free, I urge you to seek a second opinion or even a third. We can all speculate but in the end we are all lay people here.

I do wish you well and hope your fears can be put to rest very soon.

Best wishes to you.

Cas xx 🌿

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Hello

Thank you - I cannot believe that this is not cancer, lung cancer......I really do not want to die, I am only 37! Thank you for your thoughts though, I just want to be OK you know and not worry about this anymore

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Understandably so. Of course you want to be okay. If you are unsatisfied with the findings of your doctor, I urge you to get a second opinion. It may really just give you peace.

Sending hugs. xx

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