Time scale for diagnosis

Yeah it is - and if I wake up in the night he's the first person I think of it hurts to see him having to go through all this again when he'd gone into remission for his prostate cancer . Thank you and likewise ️

Hi

My wait was 96 days from referral to treatment, but, in those 96 days a large part was taken up by investigations, i.e., full lung function tests, CT scan, PET scan and CT guided biopsy, all of which took a long wait for results. It was such a relief when everything was done and a diagnosis was made to then begin treatment.

Ann

Thanks Ann

If you don't mind me asking was that for primary lung?  We're in a slightly different set up as dad wasn't referred by gp.  He ended up in A & E following a chest infection that he couldn't get rid of .  The consultant there said a node needed checking.  The node was nothing but they saw a small mass (2cm) in the bottom of top lobe.  It's now that the PET scan has shown the lymph node that things seem to be dragging to the next set of tests.  How soon after everything was done did you start treatment please?  We're all supposed to be going on holiday on 6th July and dad is telling me to go without them but I don't want to leave him if he'll start his treatment whilst we're away

Hi

I was referred by my GP for a chest X-ray because I had a really bad dose of flu in January 2023, then three weeks later a dose of Covid. I was just left with a continual clearing of my throat, not a cough as such and a bit puffed out on walking, otherwise I felt fine.

The chest X-ray showed an abnormal area in my left upper lobe and enlarged lymph nodes in the mediastinum and hilar region (centre of chest between lungs and the hilar is where the lungs are connected to the mediastinum). Because of this I was referred to my local cancer centre where I had a CT scan with contrast. This showed a 25mm lesion in my upper left lobe, but thankfully the enlarged lymph nodes where just an after effect of my flu and Covid. I then went on to have a full body PET scan, again, this just showed the lesion and all other vital organs and bones where fine. I was staged at T1 N0 M0.

The Oncology Team where undecided at the time whether it was a primary or a secondary because I had had breast cancer in 1991, and as they said, cancers can recur in other parts of the body many years later. Eventually they decided, after a CT guided biopsy, that it was a primary.

I began my treatment of SABR radiotherapy two weeks after all tests and investigations had been done.

Although the SABR was tiring and my appetite dropped a bit, I was fine. I had my last treatment on the 15 December 2023 and have had three subsequent CT scans as follow ups, thankfully all is fine with good shrinkage and no activity in what is left of the lesion, although there is scar tissue, but this is quite normal and is a side effect of the radiotherapy.

Best wishes.

Ann

Thanks Ann, great to hear you're doing so well and long may it continue ️

Your post sounds how my dad set off but now the lymph node issue has put it into a different category and someone said that the lymph nodes should slowly go down a couple of days after starting antibiotics.  I was hoping it was the pneumonia and flu or possibly the COPD that had caused them to enlarge but they've now said he needs a head scan too to check the brain .  Feels like I'm in a bad dream!  Not long for all the tests now so hopefully we get the best outcome we can in these situations and get some treatment.  My worst fear is that it's spread to far and nothing can be done

Thank you for the info and support xx

Hello, 

i ve just read this thread and wondering how your dad is doing Star68? 
Your story to sounds very similar to mine- my dad has been waiting 7 weeks so far from initial consultation saying they suspected lung cancer and we are now waiting for biopsy results. He’s had a lung function test, PET scan and needle biopsy in the last 7 weeks. I think lymph nodes have also been mentioned. He hadn’t been asked to have a brain scan though. 
I d be grateful to find out where your dad is now. Hoping your news is positive. Thank you. 

Hiya 

So we've just returned from holiday in Spain having had a meeting with the surgeon a couple of days before we went.  We also asked for a referral to the oncologist to discuss other options.  In order to do this he had to have yet a further CT scan to measure any growth.  He had this Saturday after we arrived home and we met oncologist on Tuesday.  Thankfully no growth and he has decided to go with radiotherapy which will start in 3-4 weeks.  How's your dad?

Thank you for your reply and I m happy to hear you were able to have your holiday.

Dad doesn’t have any symptoms although he did lose weight a few months ago. This may be more to do with a bad knee due to osteoporosis and resulting fracture as well as my mum having had a heart attack.

He did have lung cancer three years ago which successfully removed in a lobectomy. I guess this may be a recurrence. Dad had his normal check up ct scan in February and was told it was all clear, they have now admitted it was missed. When he lost weight in April/ may they did a colonography which showed this mass at the top of the lung. He was referred urgently to respiratory clinic to be told he likely had cancer. This was June 8th. Since then he’s had a lung function test, pet scan and biopsy. We’re still waiting for results and to see consultant again.

It all seems to be taking ages, much more so than when my husband had bladder cancer. I m not sure if this is normal or maybe it isn’t that urgent. I m concerned because the colonography report said the mass “extended into the clavicular fossa” which seems to suggest spread outside the lung. We ve rung the specialist nurse who kindly said we have to wait. 

I d appreciate any thoughts, the stress is horrible as you know and especially difficult for my mum after a serious heart attack. 
I wish your dad all the best. I m hoping for radiation for dad as I m not sure he’d manage surgery or chemotherapy. 

Oh what a stressful time for you all sending huge hugs!

This is just my thoughts from what I've read but treatment should start within 62 days of diagnosis UNLESS there is additional tests, which of course your dad has had, as did mine.  Therefore he is still well within this time even with all tests and depending on when he had them we were told 10-14 days for results.  If he's now had all his results I would be chasing for an appointment.  I can see my dad's NHS record and his GP records but TBF it's not really upto date so I've been emailing his nurses who have been brilliant and usually reply within the day or definitely within 48 hours max.  Is it the same lung?  I've got everything crossed that you get some good news xx

Thank you Star68, it’s so nice to chat with someone in the same situation. Dad had the biopsy 2 and half weeks ago. We rang a few days ago (two weeks after the biopsy) to be told the results weren’t back but he wouldn’t be forgotten. My mum asked if we should ring again if it reached 3 weeks and she was told there wasn’t any point as they would go as fast as possible anyway. The nurse was kind in how she said it. I think I may ring next week. We’re also waiting for heart scan results for mum which is nearly 4 weeks. 
I think the PET scan showed no spread- well that’s what dad said she said on the phone but he can get a little muddled. He’s loosing a little more weight too but that may be due to other issues as the weight loss stopped for a couple of months. 
As I have no brothers or sisters I feel a huge responsibility. 
It is in the same lung as before- the top of the right lung.