Lung Cancer diagnosis possible.

[Wilko91]

Hello cant sleep! feeling nervous about my CT scan result. which has come back really quickly. I had Pneumonia last Sept and felt i never really recovered last 3/4 weeks been feeling unwell. Aches and pains, flushes, Pains in rib area, lung crackles( had them both on and off since Pneumonia)lung and a bit of green phlegm in the mornings when getting up. not too much coughing. I have a long history with Chronic fatigue syndrome, under active thyroid, IBD. Sinus issues. I saw a GP 2 weeks ago, course of antibiotics and an xray ,they wanted a scan within a couple of days. .literally 16 hours (wed morning 18th Sept) later i get a text message ring this number. i Ring it ,first thing i hear is “Cancer clinic” ( this is Easy Surrey hospital Redhill) . Well thats reassuring !! I have to see a Doctor in the Chipstead clinic, for a half an hour appointment to discuss the results. Call me cynical but I cant help but feel, its not good news! I doubt they have put me in that clinic, unless it was a loose term of phrase, to discuss anything but a cancer diagnosis. Anyone out there had similar experience. My appointment is at miday today Fri 20th Sept. With clinical lead apparently Dr Stotton.

[Buddy195 Administrator]

Wilko91, I think that the consultant you mention heads is a respiratory specialist, so your symptoms may be related to a wide number of conditions. I hope that the appointment today is able to give you a clearer insight into this and a treatment plan moving forward.

A message to other members who may offer a reply regarding the named practitioner: whilst individual medics can be mentioned within a post, any feedback needs to be via private message to Wilko91.

[Wilko91 in reply to Buddy195]

Thank you i saw that as well. Apparently she does a TB clinic. So we shall see. Thanks again. John

[arTistapple]

This is typical of the NHS. I am having a similar issue. So far I am pretty much ignoring it as I have so much on my plate at the moment.

There are so many reasons, so many of us have ‘scars’ or ‘shadows’ on our lungs. You have given a very good example of at least one in your explanation. Recent pneumonia. These scars can be temporary or permanent.

Being hypo is pretty much all I can deal with at the moment. My ‘scar/shadow was found during a scan of my heart which has shown up other stuff too that there is a panic about. Talk about being on overload.

My Mother had similar and she was kept in a TB Sanatorium for months, huge amounts of antibiotics and then she was told the scar tissue was old. That she had probably had TB as a child.

We do collect these things. Anyway as I say I can’t deal with it so I am leaving well alone.

Rightly or wrongly.

I wish you well. Let us know how you get on.

[Wilko91 in reply to arTistapple]

Will do. Thanks for your response.

[Lynneypin]

Bless you, have you got anyone to support you? It’s horrible lying awake stressing about health stuff. I have similar issues. Please keep us posted.

[Wilko91]

My wife is patient and listens. Lets see what is said today. Thank you.

[Beads]

I’ve finished my reply and come back from the bottom to warn you it’s long and you may want to go make a cuppa.

That’s the first I’ve heard of East Surrey having a cancer clinic, I’m seen under the general urology clinic for my kidney cancer.

Okay, so they’ve seen something on the X-ray which made them suspicious, they’ve done a ct scan to confirm it’s not a normal thing. The ct scan is not all knowing. They did an ultrasound when I went to a&e with my kidney (high temperature, shivers, slight abdominal ache were my symptoms, they wrote sepsis over the triage form), followed that up with a contrast ct still in a&e. Then the following day, after being admitted they followed that up with a biopsy. The biopsy diagnosed the cancer, the ultrasound said there was something there that shouldn’t have been, the ct confirmed that, gave them the size, vascularity and density but couldn’t diagnose.

Further information. The cancer hadn’t spread from my kidney, I had a 6 month post nephrectomy scan. This showed the kidney area clear but a ‘couple of nodules’ on my lung. Again, there was no indication of what the nodules were. I was told they were too small to biopsy and we would wait and see, bring the next scan forwards from a year away to 6 months.

After the nephrectomy I got all my notes, the staging ct scan picked up a calcified cyst on my thyroid. I took this to the doc, got a referral for a thyroid ultrasound, the results of which got me a 2-week referral for possible thyroid cancer. I’m still on a follow up scanning course for this, but the 2-week referral was just to get it into the system as quickly as possible, you know how slowly the nhs can work for non urgent cases.

Hubby went to the doc coz he was getting puffed out during normal activities. He was referred to the chest clinic at Mayday, we sit on the border between the nhs trusts. He’s had X-rays and scans and has been diagnosed with pleural plaques, which could have any cause and he’s just being monitored.

Right, the long reply above is just to say don’t panic at the moment. CT scans are not all powerful, they will need to biopsy to confirm, there are other reasons for shadows and nodules on your lungs. You will have been referred on the 2-week possible cancer pathway to get things moving. What’s strange is that you didn’t get a message from your docs; for the thyroid mine actually asked if it was okay to do the referral in a telephone appointment, but that may just be my practice. But anyway, this appointment will take you through the results they have, their concerns, and what’s going to happen next. The speed of the appointment, as in a couple of days after the scan isn’t a massive indicator, they’ll have spotted whatever they spotted, the results would have gone to the multidisciplinary team meeting for assessment and discussion of next steps, this is on a set day each week; and then the appointment given to you. They have 2 weeks to see you before they get penalised for not hitting targets and the clinics are usually on a set day each week, so they’d need to see you today or next Friday, and if there’s an opening today why not use that one.

This is all to say it may be cancer, it may not. Get as much information as you can at today’s appointment, take someone with you if you can. There’ll be a lot of what ifs, but these guys know what they’re doing. My cancer was confirmed so they had the consultant and a macmillan nurse in the appointment when I was told, my macmillan nurse is still my port of call if I have any questions.

What you don’t need to do at the moment is hit google, try to avoid it if you can, get your information from the doctors.

Good luck and please report back, if only for the support you can get here.

[Wilko91 in reply to Beads]

Wow! you have been through it. Thank you for sharing your story, and much appreciated advise.

[Wilko91]

I just want to say , Thank you to all who responded! My appointment went well, the Doctor went through my scan wife my wife and i. No lumps no masses. But evident damage to lower left lung lobe, viewed as being a result of Pneumonia last year. The damage is described to me as likely being scarring and a fold, meaning the lung cant fully inflate. Breathing normally is only slightly diminished. Another course of antibiotics to get rid of ongoing infection, and an X-ray as it stands in 6-8 weeks, to see if their is any improvement. It may or may not fully heal in time. So i consider myself fortunate at this stage. Once i have had the x-ray, they will see where we go from there, if need be.

[Sparklingsunshine in reply to Wilko91]

My dad had Fibrosis of the lungs, ie scarring and he was offered some pulmonary rehabilitation with the Physios to improve lung function. Some hospitals also offer special exercise classes to help with breathing. It could be something to ask about maybe?

[Wilko91 in reply to Sparklingsunshine]

Thanks, the Doctor didnt actually say Pulmonary Fibrosis, but i am aware that is likely what it is. Waiting to see if there is any improvement, and when i have my next appointment 6-8 weeks time. I am due another Xray , then its wait and see see what is said/discussed at that appointment.

[Wilko91]

So the Doctor now has the full CT scan report ( which i omitted to mention, she didnt have when i saw her) I have 3 x 4-5mm lung nodules. In my lower left lung ( where i had the pneumonia.) So it still means having the X-ray 6-8 weeks. Plus another CT scan in 3 months. Bit bemused that the Dr didnt have the full report, before discussing the scan with me. So we shall see how it goes. One question. Do nodules cause pain? When there is no infection, ( which i am still getting treated for)