Anyone have a nodule on their lung like me?

Please tell me your experiances,i need to learn and fast...thankyou everyone for your support.

[freefaller]

I have a small nodule on my lung about 2.2mm x 1.6mm. Have had a PET/CT Scan which did not show whether or not it was cancerous as it did take in some of the FDG - the radioactive isotope which is injected into your blood about 90 mins before the scan. Was a bit disappointed in this as thought this would show for definite whether or not it was cancerous as there is no real reason to think that it would be cancerous in my case - never smoked and no family history of cancer - despite my Dad smoking on and off for most of his life he still died of old age! So, still had to have a CT guided needle biopsy as a bronchoscopy was not possible due to the position of the nodule in my left lung - it is quite high up near the top, inside part of the lung but neatly placed in the middle depth wise. So the first thing the Doc said to me about the biopsy was it is difficult because of the position we may not be able to do the biopsy from the back - which is best as your shoulder blade may be in the way and going through the front is a little more difficult! Luckily, he was able to do the biopsy from the back and told me he got two great core samples. Both these procedures were as easy as anything no pain only slight discomfort during the biopsy as a local anaesthetic was used I just felt a pushing into my back - quite hard pushing I have to say but no pain. This showed that the nodule was not cancerous but unfortunately not enough good sample left to determine exactly what it was. Due to the fact that blood and sputum tests done at the time of the routine CT scan back in March showed aspergillus antibodies instead of going to have another biopsy I have asked to be referred to the National Aspergillus Centre at University Hospital South Manchester (UHSM) as it is thought that the nodule is an aspergilloma. I live in Wales so the procedure for referral is a little more difficult for me as NHS Wales is devolved. I learnt yesterday that my referral and request for NHS Wales funding was sent on July 2nd so am hoping that things are going ahead. Had i had a second biopsy here I would probably be having a lung resection to remove the part of the lung with the nodule in before the end of this month. Not sure if that is the best way to go for me as I already have Asthma and Bronchiectasis but we will see what the experts in Manchester say.

What have you been told will happen now? Quite often small nodules just disappear as they may be part of an infection or something else that just comes and goes. Frequently, people are told to come back for another CT scan in 3 months then 6 months and so on.

Try not to worry as it really doesn't do any good and will not change anything. You have done a good thing by joining this forum where you can ask questions of people who are either going through the same thing as you or have already been through it.

Take care of yourself and try and live as healthily as possible your lungs and the rest of your body will thank you for it.

All the very best

Love

Sian

xxx

[Hidden in reply to freefaller]

So your lung nodules are cancerous?

Thankyou Sian love your posts.jxx

[freefaller in reply to Hidden]

No they are not cancerous. The biopsy showed they were not cancerous but not enough tissue sample left to do further testing to find out exactly what it was. Here are the options my consultant gave me when the nodule was first found after the CT Scan in March. "There is a wide differential diagnosis for this lesion but it could be due to Aspergilloma, infection, granulomatosis disease of tumour." After the PET/CT Scan Showed a "milod increased FDG uptake and an SUV max of 2.1. The appearance was non specific but the CT remains suspicious and a low grade tumour such as adeno carcinoma cannot be excluded ... ... ... It is still possible that this could be a low grade primary bronchogenic tumour such as a broncho alveloar cell carcinoma and think we should proceed to a CT guided lung biopsy." The lung biopsy showed it was not cancerous but not enough good tissue sample left to test to find out exactly what it is. Going from the blood and sputum tests this is most likely an Aspergilloma which is why I am goiing to the National; Aspergillosis Centre at UHSM. The experts in aspergillosis and aspergilloma there are likely to be able to tell exactly from the Scans and blood tests that this is definitely an aspergilloma.

[Hidden in reply to freefaller]

Oh sorry Sian,im due to have my PETCT tommorow at 145pm.i also have my NHS clinic booked for next week.actually i only found out on 28 june no later because i only found out about the pleural based nodule because i asked for a cd copy of the scan and read the report,doctor said it was fine maybe because first radilogist said 6mm pleural bleb which is harmless but then the consultant said nodule!.its all strange because i found her number and called her up(she was not happy)and even said"you should not be reading your own teports!)so I said have I got a bleb or nodule?she said"bleb or nodule"its just a play with words!but from what i googled its not.j xxx

[freefaller]

Actually in many ways we shouldn't read reports as we don't really understand the language they use and how they use it. However, as my first consultation s were private I have all the letters. Also have the report from the CT SCan which I had done privately but because the NHS funded the PET/CT Scan I did not get the report of that. Unfortunately, the private fonsultant wasn't very good at copying his letters to me and I only got one out of three. I managed to get My surgery to copy the others for me and I have not got through the last one and all the technical jargon in that. Anyway, It would probably have been best had you made an appointment to see your GP and go through the report with them - though how long would you wait? I have an appointment with my GP on July 28th and I am going to ask him to go through everything with me - from all the reports because i am the sort of person who actually wants to know everything. "Knowledge Dispels Fear" or at least it means you know exactly what to be scared of. I have never heard the term bleb. My consultant always called it a lesion but I understand it is a nodule if it is under 3mm and a lesion if it is larger? Going to look that up now and see.

Good Luck for tomorrow.

Sian

xxx

[Hidden in reply to freefaller]

Hello beautiful Sian,i love that name its welsh isnt it?my favorite actor peter otoole was married to sian phillips thats where i learned that name,always thought it a beautiful name.Actually I did show the report to my GP,he just said "well there checking you for cancer"i will fast track you and you will be seen within two weeks.that was it.bye....close the door on the way out.he really said that!....im trying hard to cope tommorow i will be like jelly,probably vomit and nearly faint because my little legs look like sparrows legs now and my pants keeps falling down lol have to buy new ones.just cant keep any food down....big huggs jxx

[Hidden]

This cancer thing is so complex, you have learned a lot!!

[freefaller in reply to Hidden]

You will be OK. They have to check you for cancer when anything is found and they don't know what it is. Do you smoke or have you ever smoked? Is there cancer in your family - close family that is? This is why I never thought it was cancer - even when the PET/CT scan was not definite, I have never smoked and the only cancer in my family was my Gran's sister died of cancer. A few of her 2 of her children then died of cancer but she had 7 children and most still living - one is 88 and the others in their early to mid seventies - two died when they were small in an accident. Other than that no cancer. So would have been very surprised if either the PET/CT Scan and/or the biopsy showed cancer - though I know it is possible. Still, if it does show cancer when the nodule is still small it would have been teatable and curable.

Your GP sounds bad - mind, you should have asked him to go through the report with you if he couldn't do it then he should have been able to make a longer appointment for you on another day. It is hard when you are in there and you do feel they are just trying to get rid of you though isn't it. Sometimes you feel you have been dismissed the minute you walk through the door. That is definitely a bad way to be treated.

Don't worry about the scan it is just like a normal scan but you have to have the isotope injected into your arm 90 mins before. They weigh and measure you so that they use just the right amount of isotope and really I was about 10st. 7lb at the time (have now got down to 9st 7lb) and the injection was very small so if you are as small as you say then I guess you will also have a small injection too. Just a normal injection into the vein in the crook of your arm. Less painful than taking blood. Take a book with you to read in those 90 mins as you will not be able to take your partner or a friend in to wait with you you will be in a room on your own. I would take an ipod or some such thing too - amazing how long 90 mins can be. Sometimes they have CD players int he room where you are wiating but the one in my room didn't work. You may be able to take a CD in to be played while you are in the scanner too. Can you ring them some time before to check all that out?

I do hope that your PET/CT Scan shows definitely what you have to deal with - so disappointing when it doesn't. Please try not to worry it really doesn't help. Though if you need to lose weight then go right ahead! Maybe I should have tried worrying more! Thankg goodness you will be wearing a gown if your trousers are likely to fall down! LOL!

Good Luck for tomorrow. Right now to look up Bleb.

All the very best

Sian

PS. Yes Sian is welsh and there should be a circonflex over the a but can do that in a word document but not on here. I always disliked the name as even in Wales when I was young - a long time ago, most people spelled it Shan and quite often I got things with the name Sharon on them! I like it now though. My Mum wanted a small one syllabled name like hers Jean and my Dad suggested Sian as it is pretty much the Welsh equivalent - it is Jean or Jane. Personally I would have rathered the other option of Jennette but that was too much for Mummy!

YOU WILL BE FINE TOMORROW!

XXX

[Hidden in reply to freefaller]

You are so so kind and loving person....sorry have to cry now...but its nice tears for a change....

[etch45]

You will be ok...we people on this site keep on going we DONT give up...

I have had cancer three times..... And got over it......The last one was lung and I was sent to Clatterbridge Cancer Centre in Liverpool for daily treatment.

It was called Steriotic ablasive radiotherapy.

I am again in remission..

Please don't worry too much.

will look forward to your next post...

love and hugs

etch45 xxx

[Hidden in reply to etch45]

Thankyou please take a massive hug!I love cats too!

[freefaller]

Sending hugs to you Mortalguy. Please try not to worry. Wea re all thinking of you today. You will be fine. We can cope with everything between us.

All the best

Love and hugs

Sian

xxx

[Suzy6]

Hi John, Sian has given you full and detailed replies. Much better than I ever could.

Take time read them slowly and absorb the information.

Take care and try to stay calm. Love Suzyxxx