How long did LC diagnosis take? - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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How long did LC diagnosis take?

MissyD1 profile image
7 Replies

Hi everyone

I've posted on here a few times now and I have found everyone to be so kind and helpful. My mum had early stage breast cancer in her left breast 5 years ago, this was treated with surgery, radiation, chemo and hormone therapy and she had no further problems (fingers crossed) in November 16 her Gp sent her for a chest X-ray as she had a couple of infections through the year - the X-ray showed a mass in her right upper lung. She was fast tracked for a ct scan and at the appointment with the respiratory consultant he told her he thought it was a tumour but in his opinion nothing to do with her previous cancer. He arranged a PET scan and also said she would have a needle biopsy. The PET scan was over 3 weeks ago now and she hasn't had any results, no follow up appointment or date for the biopsy. She contacted the Hospital a week after the scan and was told the results were not through yet. She seems generally in good health, quite tired, no weight loss, she doesn't have a cough as such but can get breathless when walking in an incline or up stairs.

My question is for anyone that has any experience of a LC diagnosis - does it really take this long to diagnose someone? It has now been just under 8 weeks since her initial x ray and my understanding of the fast track process is that you should be seen by a specialist within 2 weeks, diagnosis made within 4 weeeks and treatment started within a further 4 weeks.... when she had breast cancer she was diagnosed within a couple of days and treated within a month and so this seems to be taking a massive amount of time. The stress and anxiety of not knowing is horrible 😔

Thanks in advance x

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MissyD1
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7 Replies
Jaynair profile image
Jaynair

Hi, I was diagnosed almost 4 years ago and it was around this time of year. I remember it seemed like it was taking forever - it was about 10 weeks in total from the time of the first xray in November to my actual results appointment with the consultant in January. In between, I had 2 ct scans, a pet scan, a bronchoscopy/biopsy and breathing tests. I had my treatment (surgery) 3 weeks after diagnosis. The consultant at the time told me - with apologies for the waiting - that it was the worst time of year to be having the tests because it was their busiest period. With the way that things are going in the NHS at the moment, I can't see that the situation would have improved... I remember the stress of that time and sympathise, it puts a big strain on everyone involved. I do hope your Mum and you get those results soon and that whatever they are, the outcome is a good one x

LKMS profile image
LKMS in reply toJaynair

My sincere hope that you are now in a reasonably good health state, compared to 4 years ago when you were given those petscan,ct scan,xray (which r necessary though damaging to body itself.)I wonder if you now are still having petscan,etc.How frequent are they being carried out.Are their any rule of thumb / guides ?Should there be a balance between diagnostic monitoring needs and body damages?Would be grateful if any one can help.

Jaynair profile image
Jaynair in reply toLKMS

It has been an eventful time :). Initially, for the first year, I had a three-monthly xray and check-up, that was then supposed to progress to 6 monthly and then to annually. Near the end of year two a shadow was spotted on the xray and so I went through the same tests/scans as the first time. Fortunately, the shadow turned out to be scarring. The following year, a similar scenario, something found on the xray which they suspected was a re-occurence but, after the same test/scans etc this turned out to be something similar to scarring - a small area of lung that had died. This year, another round of tests and unfortunately this time it has turned out to be a re-occurence. I'm actually due to start treatment (radiotherapy) later today. I'm told it's a tiny area so am hopeful for a positive outcome.

I do worry a bit about the amount (and effect on the body), of scans etc - and now the radiotherapy - but I think it's a case of needs must and fingers crossed. At least, it is that way for me, others may think differently. x

LKMS profile image
LKMS

Thx indeed for your detailed and speedy reply.I suppose 4 yrs ago.your lung cancer was perhaps in-operable @ stage 3/4 .Were you given a target drug or traditional chemo drugs ,plus perhaps radiotherapy.I am sure you should be managing well,as apparently reflected from yr useful reply.

Jaynair profile image
Jaynair in reply toLKMS

You're welcome LKMS. I won't write more because we appear to be hi-jacking Missdwatt's post :)

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Hello Missdwatts,

This understandably must be a very worrying time for both you and your mum, if you get back in contact with the hospital, the consultants sectary should have information of the pet scan results and the date for biopsy, also your Gp may have been sent a copy of any results. If you would like to speak with someone please give us a call on the nurse led helpline freephone 08003587200

MissyD1 profile image
MissyD1 in reply toRoyCastleHelpline

Thank you, nothing came in the post today so my mum called and left a message for the secretary. She is going to contact her GP tomorrow if she doesn't hear anything... I will pass on the number too as I think she may find it useful to talk to someone about how she is feeling x

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