The Roy Castle Lung Cancer Foundation

Lung cancer

Hi everyone I'm new to this group but I'm hoping you can help me get through this terrible time.my husband was diagnosed with lung cancer three weeks ago. And after lots of tests pep scans biopsy we went fri to get results and I'm so confused. They say all the tests have come back negative but they want to wait six weeks to scan again!!! As it could be infection 🤔The tumor as shrunk 🤔They say it could still be cancer. But how can biopsy be negative. We have been to hell and. Back. I'm so confused. Any one else's had this ??

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Hi,

I can't really give you any answers, but there are loads of great people on here and someone will be able help - pretty sure you will get some positive replies soon

Take care

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Thankyou for your reply

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Just wondered if you could ask to speak to a MacMillan Nurse or probably better still the Lung Cancer Nurse at your local hospital to get some advice and support. They should be able to explain things to you or find out information for you about your husband’s results. If you ring the hospital that you have been to and ask for the lung cancer nurse they should put you through. Otherwise maybe try your GP.

Best wishes x

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Hello Moroccanoil,

Welcome to our forum, I am sorry to hear that your husband has been unwell , it is a very worrying time waiting for results and understandably you will be anxious having to wait 6 weeks for the investigations to be repeated. As Bow-19 has said get in touch with the team responsible for you husbands care they will be able to give you an explanation of the reasons for this. If you would like to speak with someone please give us a call on our nurse led helpline freephone 0800 358 7200

Kind regards

Roy Castle Support Team

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Thankyou so much

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My daughter had some negative results prediagnosis including biopsy and fluid but the Doctors were convinced of a cancer diagnosis despite only having breathlessness and a cough which then presented as a collapsed lung. It prepared us a bit when a month later NSCLC was diagnosed she was 17 at diagnosis so they assumed secondary in lung but actually primary. The not knowing is really hard but it takes time to get all the results back and double checked but I think it helped prepare all of us when diagnosis came but still devastating but a lot of people live well also with lung cancer. Kay is 19 now, on a targeted chemotherapy tablet and has just started University so try and remain positive but I know it is hard but he is still here and though tough times maybe ahead he has a fighting chance! X

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I've just got back from a gathering in Berlin where clinicians/researchers gathered for a weekend to explore ways to improve lung cancer care in their countries. i was shocked to learn of a 12 year old girl in one country who like your daughter has developed a primary and is also on a targeted treatment. It was interesting to learn how the patterns of detection, treatment and also incidents of it are so different in other countries as well as the increase in those who have never smoked especially women. good that she's at university - here's wishing her and all others affect by this condition the best of luck. x

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One of the many difficulties in diagnosing lung cancer is the symptoms (when people actually have them) are similar to many other respiratory problems (infection, scarring, TB, pneumonia, etc) and often what might appear 'sinister' on a chest x-ray (usually used as first part of diagnosis) can actually be due to other causes. Even if a CT is done, many people have 'nodules' in their lungs that don't actually develop into cancer and several tumours turn out to be benign (harmless). For many reasons, it is important to do diagnostic tests at different points in time to see what is going on inside our body (usually through imaging or if anything found, sometimes through needle biopsy or invasive bronchoscopy to have a look around). We imagine that there would be changes in such images day to day but some changes can take months or even years to register. Some tumours don't show/pick up on PET scan (not all tumours respond to the technology) and sometimes there are false positives/negatives and not all tumours show on Chest x-rays (dependent on the position of the tumour - could hide behind other structures such as the heart). Therefore it is important for everyone concerned that all the necessary tests are done and come back with positive/definite results before patients are told they have lung cancer. What is usually said, is that they suspect lung cancer or until they find out otherwise, it could be lung cancer but until the actual pathology or other tests are done, it can take a while. It is a very worrying time and often there is not always access to specialist cancer nurses until a patient actually has a diagnosis so it can feel very frightening and lonely. However Macmillan and Roy Castle have nurse led helplines where you can speak to somebody. In recent years there have been many breakthroughs and promising results with new targeted treatments managing to treat lung cancer for some more as a chronic disease/condition but of course, until cancer is actually detected and the precise type of mutation in any tumour that needs targeting (if it is) such treatments cannot be given. Currently research is being done into using liquid biopsies (blood tests) in future as part of diagnostics as several tumours 'leak' circulating tumour cells into the blood which might prevent such invasive investigations as presently available for lung biopsies.

Given what's happened so far to you, although it won't seem like it at the moment, it sounds good news but living with waiting while different tests/scans are undertaken unfortunately becomes a regular occurrence for many of us with it and continuing to have check-ups as follow up. I was misdiagnosed and treated (pointlessly) for asthma despite the lesion showing on my chest x-ray at emergency admission and it took over a month to even get a scan and within 2 months had lost half my lung (along with a 7cm tumour) but still didn't get a diagnosis until a month after surgery so everyone has a different experience. That was almost 7 years ago. Scanxiety or the not knowing for many can feel worse than the diagnosis itself but here's wishing you and your family a positive outcome from this dreadful time. We're here to help support you….

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Thankyou so much for taking the time to reply I appreciate it so much hope you stay happy and healthy

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Hi there Morroccanoil

Where cancer is concerned, there are no easy answers and no quick responses where tests and being done. I think all the advice you are getting on this site is positive and good. It's easy to say 'be patient', but where a serious illness is concerned, it certainly isn't easy. Like others have suggested, the cancer nurse specialist in your husband's case will be the best person to give you reliable advice and the Roy Castle help line will put you in the right direction for help.

Very best wishes for a good outcome.

Bill

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Thankyou for taking time to reply and I'm so happy for your out come I've read you are doing so well

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Just wondering how you're holding up and whether you've been able to speak to a nurse or somebody on a helpline since your posting?

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Thanks janette for your concern I'm feeling lots better thankyou I've spoken to our nurse and she was really helpful basically their saying that all biopsy are negative and scans they think it could be infection as it as shrunk. So wanna see scan again in six weeks as hopefully infection will be gone. But can't rule out cancer.! I just wish they hadn't used the word cancer till they new.

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Thankyou for asking. Yes I did speak to our nurse who was really helpful she said that they are waiting six weeks as he had infection that's how we ended up having X-ray it takes six weeks for infection to leave the body. And want to see if the mass wax infection. Or it still could be cancer. I'm scared their leaving it six weeks thou. He is fine in is self other than a little cough, we are currently in Tenerife taking a break they said it would be fine to go away. I'm so hoping it will be good news when they scan him again. Thankyou again for your reply

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That sounds promising. Glad you can get away and hopefully take your minds off it. Unfortunately living with long waits for scan results becomes something we have to live with - some once in pathway wait 3, 6 or 12 months between scans so managing our mindset is something to learn. I found the book 'Cancer is a word not a sentence' really helpful as I kept getting recurrent chest infections after my surgery and had to learn to not think that each occasion was the cancer returning. Distraction can help no end. good luck with everything. x

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