The Roy Castle Lung Cancer Foundation
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Fed up with the nhs

I don't no what to do, ct scan showed lung nodules.why ant they doin anythin. I've bin left for a year in pain.what do I have to do sell my house go private????

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You could ask for a second opinion on the NHS. Have you also asked why they won't do anything? Just two questions that came to mind x

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Doctor won't give me second opinion. It's to do with the guild lines of nice

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Have you tried another doctor, or perhaps phone the secretary of your hospital consultant and say you are in pain.

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I've done that

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My partner was told he had 2 lung nodules; one was small and the other was growing; they didnt do anything until the one nodule grew larger; it has turned out to be cancer unfortunately, and we have now been told he has multiple nodules. My understanding is that when the nodules/ if the nodules , start growing; when they grow to a certain extent they then do further things/pet scan and lung biopsy. I don't think they can do things if the nodules are very small; apparently many people have benign nodules. I would suggest you go back and discuss the size of the nodules and if they are growing or not. You could always pay for a private PET scan which will show brightness if its likely to be cancer; this is my understanding; Good luck. xx

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HiRockstar 6200,

You need to make an appointment to speak to your GP and ask for an explanation about the treatment decisions which have been made based on your recent scans and investigations.

You could ask to have an appointment to speak to a pain specialist in the hospital clinic.

Best wishes,

All the team at Roy Castle Helpline.

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I've done all that have to have another scan next year.they have already had two.bin to pain clinic they won't touch me

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I could b dyin and the NHS ant doin anythin

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Until a nodule reaches 10mm it is too small to biopsy. You run the risk of a false negative. As someone mentioned before 95% of lung nodules go away on their own or never get any larger. They are harmless.

If they are to small to biopsy they are not large enough to have metasrticized by spreading into the bone. For that reason it is likely not cancer. Your drs are following an international Standard of Care.

As someone suggested, see your GP and ask for an explanation and push for a referral to a pain clinic.

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Have to have another scan in march next year.Went to pain clinic the doctor said she wouldn't help me

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I could have cancer, I could b dyin and the NHS ant doin anythin

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Have you discussed this with your GP. How about a private consultation? When my daughter was initially waiting on oncologist referral we took her to a respiratory consultant who coordinated the referral, so got all the right people talking. The morning after seeing him the specialist unit rang me. You then go back into the Nhs. An ophthalmologist friend of ours told us it wasn’t necessary to go private for oncology treatment as UK oncology is excellent but that initial consultation got things moving

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I have a respiratory specialist nhs he said he will give me another ct scan and c me next year.

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There have been recent guidelines published about the treatment of lung nodules and as others have stated, until they get to a certain size, treatment is 'vigilance - watch and wait'. Part of the problem is that many people have solitary or few nodules that do not develop and as the health service/doctors' promise is to 'first do no harm' subjecting people to unnecessary and potentially damaging investigations for no purpose could create further mental anguish. I understand your concerns as after losing half my lung in Dec 2010, I was told that my ongoing treatment was 'vigilance' on the part of the hospital with 3,6 and then 12 monthly scan/CXR. There are detailed procedures in place for lung cancer developed by clinical experts that includes treatment of nodules so requesting a second opinion or paying privately is unlikely to change the outcome in the UK.

You could explain to your doctor or the hospital how concerned you are and how the stress/anguish is affecting you and they may refer you for counselling. Alternatively you could contact either the nurse run Roy Castle helpline or Macmillan helpline but unfortunately until somebody has a cancer diagnosis, options such as being given a cancer nurse specialist are few. There is a recently published optimum national lung cancer pathway of which management of lung nodules is referred to as the current British Thoracic society policy. You can find the national optimum lung cancer pathway published on several cancer charity websites including CRUK but until a patient is actually diagnosed with lung cancer, these won't apply only the pulmonary nodule pathway. I have recently seen a patient information sheet given to patients in Nottingham for those with pulmonary nodules - may be worth asking your hospital if they have such a document - it explains the whole situation in more detail.

brit-thoracic.org.uk/standa...

Nodules can be caused by scarring or other situations but not that many turn out to be malignant. Hopefully the guidelines or chatting with another doctor can reassure you.

It is very rare for nodules to produce pain as there are no pain receptors in the lungs themselves as I understand it but stress/anxiety won't help as this can constrict breathing and cause pain in the chest area. Many people have pulmonary nodules found during investigations for other conditions and are treated according to these national guidelines.

Good luck and hope you can be reassured before long by experts.

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U could b dyin and the doctors ant doin anythin or just waiting for me to become unwell

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They did this to me too, even when I visited the locum oecologists they took no notice of my symptoms. I would not be in pallative care now had they dine something. The NHS is not a consistent body. It varies so much throughout our country. All Trusts should be working to the same criteria.

Yorkiiejo

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