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lucanus15 profile image
18 Replies

Good evening all.

Since my lobectomy in March and followed by chemo for 6cm adenocarcinoma I'm due for a scan in three months, six months then after my last one. I have started to bounce back now since the chemo which finished in July. The main lingering setback was mental fatigue and stress due to having two small boys and splitting with their father and having no support.

Physically I'm very fit again now. But I've got a new tired feeling, like the tiredness of pregnancy, really sleepy by 4 pm and obviously, being now a single Mum, impossible to rest. This tiredness could possibly be hormonal. At 42, I think I was in perimenopause before my illness was discovered, and now I've had no cycles since June. This is the same tiredness I felt the summer before my diagnosis, so, as I mentioned, it could be hormonal but also could be something else. So I contacted my local doctor (not lung specialist) and today had an xray. My doc tells me it's normal, all's well. But I have lingering doubts. He's not an expert and it took him three visits to hear me the first time. He asked me how my appetite was but that attests to nothing as I was ravenous last time I was growing my tumour.

So I'm just wanting to ask how common is it for an xray to miss lung cancer. Have any of you had experiences of this? The report says 'Residual bronchial syndrome'. Do you think I should bring my scan forwards?

Thanks in advance and all the best xx

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Davemack05 profile image
Davemack05

My GP practice told me that 2 chest x-rays in the space of 4 months showed no cause for concern.

I went to the Doctor in July and was sent for a respiratory test, while there the nurse said she was not happy with what she saw on the x-rays. I was diagnosed stage 2 COPD and she arranged a CT scan.

I then phoned the respiratory receptionist who told me that the results were not back. The following day I had a call from the hospital saying that she had sent the consultant an email but because it had been nearly 2 weeks since the scan there was probably nothing to worry about. I then received a call an hour later to say that my respitory appointment which I didn't have was cancelled.

Around 3 hours later I had a call from the consultant asking me to go to an appointment the next day . At that meeting she arranged a PET scan appointment. The day after the scan I received a letter saying that the cancer team had decided that I did not need a scan as the consultant radiologist had said that there was no signs of malignant cancer on the CT imaging (great news)?

I was called again by the consultant 4 day after the pet scan to be that it was not looking good and that a problem had been detected on my lung and voice box and possibly my pelvis.

So here i am now 4 months later and just about to start chemo for stage 4 lung cancer which if our so called medical experts had done there job correctly should have been started 12 months ago.

My advice is you know you own body and if it feels like something is wrong push the doctors for answers.

Danni54 profile image
Danni54 in reply to Davemack05

Hi. I am SO sorry to hear about what you have and are going through. My Adenocarcinoma on my right top lobe first showed up 2 and a half year's previous to my eventual treatment last year. I had told my Dr. and then Consultant's at my hospital that I felt different, had lost over 2 and a half stone in just over 3 month's and couldn't eat. I was sent, initially, to a patronising, arrogant large bowel Consultant who sent me for various bowel tests despite telling him that I knew I didn't have a problem there. He refused to refer me to another Consultant for over a year. Very long story short and a lot of unnecessary tests later I had an Xray before a muscle injection under my right ribs which did nothing and then last year I had pneumonia and was rushed to hospital where I had another chest Xray and they found the tumour and my Thoracic Consultant asked me why I hadn't had something done with the tumour 2 year's previously and I said I didn't know that I had one!

Thank goodness for him because I had biopsy, scans and PET Scan and then had to go to a hospital 4 hours from home to have a Lobectomy. Now, a year and 2 month's on, I'm still very tired, have health issues from the 2 and a half or more year's of neglect by my hospital but I'm stubborn and despite having lost those year's, I will get there and so will you. Have faith in yourself please and if you don't agree with your Dr. please try and fight them. I think that cancer tiredness is unlike anything else so I do understand please believe me.

Please take care. There are so many people here and elsewhere who have gone through hell with this horrible disease but are battling it with such courage. Consultant's and Dr.s are not God and I have completely lost faith in my hospital and reading the mistakes that have been made, this has to stop and they have to start listening to us. I wish you all the best and everybody all the luck in the world with treatment's which are so much better than they used to be thank's to the wonderful people at Cancer Research and all of the work that is done here. Please keep the faith.

Davemack05 profile image
Davemack05 in reply to Danni54

Hi, thank you for the positive vibes ,I am going for my first chemo treatment on the 10th so it’s just a case of wait and see now.

The biggest problem is the constant coughing and lack of appetite. I am living on soup pudding and complain a I can’t finish a complete meal.

Danni54 profile image
Danni54 in reply to Davemack05

I know that when we have lung cancer we are supposed to have a cough but I didn't until I had pneumonia. Also a couple of month's after the Lobectomy I started coughing and it got worse and worse and I was up almost every night and started being sick but clear fluid and it was horrific. I also couldn't eat. My Dr. made me do a sputum test about a month ago and found that I had Oesophageal Thrush which had spread to my gut and right lung and another infection ( can't remember the name! ) so gave me medication but can't give me antibiotics, so the Thrush has gone but the other infection is still there. My immune system is in a bad way and my Folic Acid levels are very low plus I'm anaemic but now on medication for both of them. It's not a question of what we go through with the cancer is it, it's everything else that goes with it. It might be worth getting a test done to make sure that you don't have any of this especially the Oesophageal Thrush. Just a thought.

Hopefully the appetite will come back once you finish your treatment. I know so many people with cancer and although I always sympathised hugely and helped when I could, I didn't understand how mentally and physically exhausting it was until 4 year's ago when I got it. I am here if you need to scream, talk, cry or laugh because we go through all of that, sometimes in one day! I will be thinking of you on the 10th so please let us know how you get on and am sending big hugs.

Danni54 profile image
Danni54 in reply to Davemack05

I am incredibly sad to hear what you have gone through and totally sympathise. What kind of training and qualifications do these people have? I have said what you have said in that you have to keep fighting to make sure that you are heard and it shouldn't be like that but unfortunately it is.

I had Endometriosis when I was in my twenties and went through the pain of that and had a hysterectomy in 3 stages, ended up with nerve damage and adhesion's but lived my life, painting, tutoring, looking after parent's, walked my dog's etc. but now I am 67 and have been left with multiple problems and have hardly painted at all. These highly intelligent people have taken 4 year's of my life without a thought and left me with so much pain but as I said before, I am still glad to be alive! The hospital made loads of mistakes with appointments, Xrays, scans and scan appointments so I really do sympathise with you. I am now waiting for a spinal Xray to see whether I have either Osteoarthritis or cancer in my bone's. Oh joy!

Take care and good luck. Sending gentle hugs!

Denzie profile image
Denzie

Xrays cannot pick up a lung cancer lesion until it is relatively large. For that reason they use CTs to follow up after a cancer diagnosis.

Jmc8 profile image
Jmc8 in reply to Denzie

Actually xrays can pick up small tumours - mine was initially picked up by chance as a ‘shadow’ at <2cm on a chest X-ray for cracked ribs

Denzie profile image
Denzie in reply to Jmc8

That’s excellent! The radiologist who read it is a hero.

Davemack05 profile image
Davemack05 in reply to Denzie

Mine was picked up by my respiratory nurse who spotted it on 2 X-rays which were not followed up by my GP during my diagnosis for COPD.

The lesions were very small apparently.

Denzie profile image
Denzie in reply to Jmc8

Also 2 cm is 3/4” Imperial. Not terribly small. I wish low dose CTs were part of everyone’s annual exam. They can catch them at an extremely tiny size. I’m grateful though to the doctor who didn’t let your X-ray go without a close exam. The size of yours opened up more treatment options. (Smaller than 2cm is considered a T1.)

Kalilou2 profile image
Kalilou2 in reply to Denzie

Mine was picked up on an X-ray. Originally thought to be a clot. Two days later after a scan turned out to be a 58 mm tumour.

I can’t complain about my treatment I have had the best Dr. Dr lee at Weston Park. She really looks out for you.

Really sorry for all the ones on here that have been let down by theirs .

Denzie profile image
Denzie in reply to Kalilou2

58 mm is a bit over 2.24” Imperial and considered large enough to be staged as a T3 at minimum. A CT can distinguish a collection of cancer cells at 2 mm. That’s smaller than 1/25th of the size of yours. I wish CT were part of every annual wellness exam. It would have given you more options. I wish everyone could have the excellent rapport you have with your doctor.

Kalilou2 profile image
Kalilou2 in reply to Denzie

Mine was inoperable as it was too big and had grown into a nerve and veins.

I think the tumour was a T4 and was classed as s 3b non small cell.

Shrunk to 33 mm it’s never going to go altogether should just be an empty shell . Xx

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Hi,

It might be an idea if you are waiting for a scan to phone the department and ask if there are any cancellations you would be able to attend for your scan at short notice.

Regards,

All the team at the Roy Castle helpline

Molly456mandy profile image
Molly456mandy

Yes, bring scans forward and ask for a second opinion. Do not take chances it is your health. My sister did and she regretted it. Good luck you are a brave lady and a good mum.

Mikest1 profile image
Mikest1

I had an x-ray that showed all clear then 3 months after multiple tumours the largest 35mm diameter shown by a ct scan I had to pay privately for. Don't trust a single x-ray. You need a few at different depths

Danni54 profile image
Danni54

Hi. You have had a horrible time and I so hope that everything will work out well for you. I had an upper right Lobectomy last year in September for Adenocarcinoma and kept coughing and that got so bad that I was being violently sick. It took over a year before I had a sputum test and they found I had Oesophageal Thrush which had spread. I also have another infection in my Oesophagus which I can't remember the name of! I was given Fluconazole for the Thrush and I am, at last, able to have a good night's sleep. However, I can't have antibiotics for the other infection because I'm allergic to penicillin plus and if I took antibiotics that would start the Thrush so that is under review.

If anybody has a terrible cough with burning sickness and your chest is wheezing and crackling please get checked for Oesophageal Thrush because it's so exhausting and painful and my immune system was so bad after having undiagnosed cancer which showed on an Xray but was overlooked for almost 3 year's and then, ooops, found when I had pneumonia. We know our bodies and we know when something has changed but some Consultant's don't listen so please, if you feel something is wrong then get checked.

I wish you and everybody who is going through cancer and the treatment, all the very best in the world and wish I could give you all a big hug. A year after the Lobectomy and so many trips to various hospitals, I am still struggling at times but so, SO glad to still be here. Love to you all.

Jmc8 profile image
Jmc8

As others have said - don’t leave things if you don’t feel right. Chest x rays can pick things up though - that’s how mine was detected initially. Just wanted to send you a hug as know how hard & lonely it is to cope with Iung cancer when you have a young family. Thankfully I had a partner who was wonderful in looking after the boys but nobody to look after me (number of complications) - friends were great though - is there anyone that could help ? I did get diagnosed with bronchecstasis after a while so maybe that’s what they mean. I’m now 5 years down the line & thankful for every day x

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