Have you ever heard of a chest infection appearing to be a lung tumor on a CT scan? Please can you read my husband's story and comment?
January - Our GP diagnoses my husband (ex-smoker, age 70) with a chest infection, antibiotics given.
February - Still unwell. GP sends husband for x-ray and it comes back "borderline." The notes say "Minor inflammation or scar tissue seen" in the lower lung. More antibiotics.
April - By now he's been on three lots of antibiotics, none of them are working. Hospital xray shows water on lung. 3 litres drained between two different visits.Xrays taken before and after every drain. My husband is also coughing up blood and not eating.
Thursday - Husband rushed to hospital coughing up large quantities of blood. Xray and CT scan given. We are told the xray doesn't show much fluid at all and actually "looks pretty good." Then, my husband's pulmonologist looks at the CT scan and said he can see what appears to be a "pocket of infection" surrounding the fluid in my husband's lung. However, he goes on to say only the radiologist could give us a definitive report.
The next day, my husband phones me from the hospital saying he's been given a Macmillan nurse! I checked my husband's CT result online and it reads:
Large tumour mass appearing to arise from the subcarinalregion encasing and compressing the right main bronchus,bronchus intermedius & middle/right lower lobe bronchi withcollapse/consolidation of the peripheral right lung,pleural/pericardial effusions and bulky mediastinallymphadenopathy. The differential diagnosis includes smallcell carcinoma warranting referral to a Chest Physician andlung MDT review.
How on earth could that large tumour have been missed on the FIVE xrays my husband has had in the past two months?! I cannot understand it, it doesn't make sense. It also gives me hope. One doctor said that xrays can often miss things, but how likely is this? A bronchoscopy/biopsy is scheduled for Tuesday and some results may be in by next Friday. As you can imagine this is torture for us both.
Please can anyone offer some insight?
Thank you so much.
I am sorry you have found yourself here. I appreciate how torturous it can be having just very recently and still being tested like a lab rat myself.
No one on here will be able to tell you one way or the other unfortunately. But one thing I can offer is, that though they refer to it as 'mass' it doesn't necessarily mean it is very large. I believe anything below 3cm and below is a nodule. Anything bigger is a 'mass'
Mine didn't show on an xray (well it did it just wasn't picked up as it was in a 'busy area') and it was likely considerably bigger (not sure how big at the time as the MRI was taken 4 months later) but when it was found my 'mass' was 9cm!
Frustratingly you will likely have to have a lot more tests before you have all the answers, however it does sound like you will get a lot of them this week and we are all here all they way to listen, help, support, whatever you need.
Best wishes to you and your husband.
Thank you for replying. I'm sorry you're going through this as well.
There doesn't seem to be a measurement on this "mass" in the notes, but to be told by the pulmonologist that he sees an infection, but the radiologist sees a probable cancer, and the nurse telling me that "sometimes infections look very much like cancer on CT scans" -- I just don't know what to think.
I have never known any fear/pain like this. I am a lot younger than my husband and we have four children together. Trying to keep going for them while I'm feeling like this is so so hard. It's good to have someone to talk to though. Thank you. I wish you all the best.
Sorry you find your self here but you are most welcome.
You have had a good reply from Ginajsy.
Hopefully you will find out more this week, the waiting is the hardest part.
Our minds go into overdrive and think way to hard.
We are all here for you and will help in any way that we can.
We all knows how you are feeling at this moment in time we have all been there.
Please feel free to ask anything you may wish to know and i am sure some one will have the answer.
Take Care Ellie xx
You Never Walk A Lone
So sorry you both have had this news
Like Gina and Ellie says the waiting is always the scariest part
Once you get the biopsy results back you both will have a clearer picture of what’s happening
Please post anytime if you want talk, there is always someone around
to talk to you
My x-ray also failed to show anything suspicious so we were celebrating for a couple of weeks until I had a CT scan.
One thing to remember at this stage is that the doctors can't say exactly what the problem is until the results of the biopsy are available, it is only then that they can look at the cells to determine whether or not there are cancer cells present. In the meantime the wait along with extreme anxiety is the worst experience ever and having been there myself I really do feel for you.
I was also assigned a lung cancer nurse before diagnosis was confirmed which appeared at the time to have assumed the worst. Looking back I believe they do this to give patients and families a contact to discuss things with and to help all they can where needed, so I don't think it's an indication of anything in particular.
I really do feel for you undergoing the wait, unfortunately I can't offer any tips to help you through this but promise it will pass and whatever the outcome you will have something to focus on. I hope this turns out to be nothing of concern for you in the end and you'll be able to pick things up where you left them.
As others have said, the waiting is the worst part. When you have something to focus on, you can channel your energies into dealing with the treatment, if it does turn out to be cancer.
How can 5 xrays miss cancer, as one of your doctors said, xrays often miss things. There was an active debate on a thread here, titled xrays and detecting lung cancer. You will find other similar stories but don't read it if you think it might upset you. The only question I have is why do we use xrays in diagnosis when they often miss things?
I hope you don't have anything to worry about, but to be honest, your radiologist has used some quite direct terms, normally they can be very non committal.
Take care of yourself and husband,
Thank you all for replying. I am so angry that no one has seen the tumour before. It boggles my mind. My husband's biopsy is tomorrow. I appreciate all of your kind words and thoughts. I will update when we know more.
Thank you for your reply hope and kind words. Sadly missing it does seem to be an all too common story. Anger is completely natural, I did feel angry too and at time still do. It's also a sign the initial shock is wearing off.However I also try and tell myself whilst I am angry, it can't be changed now and focus on jumping through the many hoops they throw down for you now that you are on the treadmill.
I am hoping for positive news for you, but we are all here if it is not.
Good luck with the biopsy today, I hope that it all goes to plan and that you get your result soon, and get a plan for how this will be treated if it does turn out to be cancer.
As Ginajsy says, anger is quite natural, I still have my moments, especially since it is well recognised that xrays can miss tumours and to be told that by one of your doctors makes you wonder why they rely on them so much. At first I thought that the radiologist that read the xray must have missed something, but as I have looked at this in more detail and spoken to others, I believe that the xray is just a poor investigation for lung cancer, the radiologist can only read what is in front of him. I think the whole system is wrong and for the first time have seen an organisation pick up on this. Roy Castle have a petition to get screening using CT in place. I was so pleased when I saw this and thought that at last, one of the organisations is listening.
If it does turn out to be SCLC, then I think they will get treatment started as soon as possible. Often the initial response is really good and that will give you time to look at what to do next as new treatments seem to be coming through.
Best wishes for today and for the future,
I truly feel for you & know exactly what you are going through as I have been through the same journey with my husband who is 69 & an ex smoker. He first went to the doctor’s last August as he was extremely fatigued, breathless & losing weight & as he has a heart condition we thought it was deteriorating. He was initially treated for anaemia but in September he got a chest infection which didn’t respond to 2 lots of antibiotics. He finished up in hospital with pneumonia & once all the infection had cleared, his X-ray still showed a shadow on his lower right lung that needed investigating. That was the 20th October & he had a CT scan the following day. We got the results a week later & it showed a 7cm tumour. He had a PET scan 10 days later which confirmed the tumour & slight activity in the lymph nodes in the centre of his chest but luckily nowhere else. He then had to have an endoscopy/ EBUS to take a sample from the lymph nodes. It was negative so he then had a lung biopsy which was inconclusive so he had to have another one. This showed the cancer to be STAGE 2 NSCLC & the type is squamous which is associated with smoking. I won’t lie to you the waiting for all the scans & results is horrendous & it is a relief when you finally get a treatment plan. My husband’s best option would have been surgery but they wouldn’t operate due to his heart condition. He completed 4 weeks of radiotherapy in March & will see the oncologist on 1st May & have an X-ray. 6 weeks after that a CT scan & then we will find out how successful the treatment has been. He was very ill before the radiotherapy & I had to do everything for him. He was sleeping around 18 hours a day, barely eating, vomiting & has night sweats. He was so weak he could barely stand some days. The good news is he is now doing really well. He is eating again & putting on weight, no longer fatigued or breathless & can shower & dress himself again & is generally very well. He hadn’t driven for months as he was so tired & couldn’t concentrate but he is behind the wheel again.
I found that keeping life as normal as possible really helped but it isn’t easy & I had lots of sleepless nights. I look after my 2 year old grandson while my daughter is at work & he kept me sane. He needed me & just seeing his smiling face each day was wonderful. I always put on a brave face for my hubby even when I was in utter torment as I never wanted him to see how worried I was. He coped with it mentally quite well but physically he wasn’t good at all. Our family & friends have been marvellous & I found it helpful talking to the lung cancer nurse assigned to us if I had anything I was worried about. The Macmillan nurse also phoned me to offer help & support. His lung specialist consultant & oncologist are brilliant & they also phoned me to put my mind at rest when I was worried. Every person who has been part of his treatment have been wonderful & treated us with the utmost care. He coped with the radiotherapy really well his only side effect was tiredness which he was already coping with as he had been fatigued for months.
Once your hubby has his full diagnosis & a treatment plan you will find it easier to cope as you will be able to focus on it. I truly hope he has the best positive outcome & send you both lots of love & prayers. There is light at the end of the tunnel but it is a hard road getting there & you will need all your strength & support from your family & friends. Take care & good luck. XX
How awful for you both. I'm so sorry you are going through this.
I'm not a doctor, but I've had lung cancer (now in remission) so I've talked to a lot of people with the same thing. Also, my husband had it and died, 15 years ago. But my step daughter, who was diagnosed with stage 4 terminal cancer 16 months ago, has been on Keytruda, an immunotherapy treatment, and her tumours have just started to shrink.
I think it's likely that your husband has a bad chest infection, or maybe even pleurisy, as well as small cell lung cancer, the former in the same area as the latter. This may have meant that the doctors thought they were only dealing with one problem, the first, or that the infection obscured the the tumour (especially as small cell lung cancer is more diffuse than the non small cell kind) - or both. It would have helped the diagnosis if the CT scan had been done sooner.
The biopsy will give you the definitive result, of course. I wasn't sure if you meant that you wouldn't get the result till next Friday, or tomorrow the 20th. If not till next week, that seems a v long time to me and absolute hell for you. You might be able to speed this up a bit if you tried. But it may not get you anywhere as the hosp may just be stretched.
If it does turn out to be cancer, ask about immunotherapy.
I wish you all the very best.
Oh I truly feel for you both at the moment. Yes - Xrays can confuse inflammation with a tumour particularly if it is a widespread infection causing inflammation all over the area. BUT thank goodness your dear husband is now being investigated further.
I always come on here to advise newly diagnosed people NOT to Dr Google. Please stick to the sites that are more up to date i.e. Here, Roy Castle Lung Foundation and Cancer Research. There have been so many moves forward in the treatment of the various types of Lung Cancer it's best to read the ones that are more "on the ball". Otherwise you scare the daylights out of yourself before you know what you are dealing with. SO that's my bit done.
You must be feeling as if you're in a whirlwind right now and I truly sympathise. As others have said, once you get a treatment plan in place then you know what you're dealing with.
Reading that your husband is having a bronchoscopy for a biopsy - I'd also say that initial testing for genetic mutations of biopsies can take up to 3 weeks. I know I know that seems crazy BUT this way they get it right. It used to be - whack someone on Chemo and that was it. Thank goodness things are moving forward quite fast in this field.
I know little about Small Cell Lung Cancer SCLC (I'm NSCLC) but understand that Immunotherapy is the latest treatment available. Pleased to see a couple of people already mentioned that.
We are all on here to support each other and I do SO hope you find the Group helpful. Also we are here to listen if you wanna scream from the rooftops right now - we understand those feelings too.
I do hope you get some answers soon and that once a treatment plan is in place you'll come back and update us.
Welcoming you and also wishing you all the very best to you and your husband. Scary times for sure.
Love and Hugs
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Hi ..... So sorry about your husbands diagnosis ... I have Small Cell Lung Cancer and am just going into my 19th month ... I was lucky as it was picked up when I was in hospital for something else ,,, I was told maybe 4/6 months without treatment ... 12/18 months with treatment ...... So I did the treatment .... Chemo /Radiotherapy etc ....... Also I use alternative treatment ,, and herbs that are mixed for me by registered herbalist .. Changed my diet No sugar /Dairy /Processed/ Red meat .... I have lots of Vegs Juices etc ,,, Not easy at first but it becomes a way off life ..... After the first two weeks after diagnosis when I couldn't get it out off my head I thought its either stay in bed with a pillow over my head or try and fight .... So where am I now ....... I'm ok ..I was on my allotment until 8.30 this evening .. I have been on two holidays since diagnosis .. I have a reasonable quality of life and its hard work BUT I am doing ok and I think it may help to change eating habits etc ... Educate yourselves .. Go on line and look to see what may help There are many people who can offer advice and help ... Ask Consultants and Doctors Questions .. Write things down before you see them because its so easy to get home and think ooooh meant to ask this or that ..Hope this helps a little as I started off clueless .. You must read as much as you can about treatments .. alternatives ..side affects etc ... You can never know too much ... My heart goes out to you and your family ... Good Luck but most of all stay positive ... Fran ..
I would like to thank all of you who have replied to this post. To hear your stories of life lived to the full despite being diagnosed with cancer is truly inspiring and gives me hope for my husband.
Just to keep you all updated, we are still waiting for my husband's official diagnosis after his biopsy last week. That will come any day next week, we are still waiting for the appointment to come through. My husband is holding up remarkably well and feels very positive and ready for the fight. I, on the other hand, am struggling very much. It's hard enough to see my husband so weak and unable to walk more than a few feet (he is now reliant on the wheelchair we are borrowing from the Red Cross), and of course I'm fearing for his life. But that added to the housework, shopping and raising our children singlehandedly has had me close to breaking point on a daily basis. Before all of this happened, I worked full time and loved my job. Now I'm home caring for my husband, and everything has fallen onto my shoulders. Money is a massive concern. My only source of help is my mother who is disabled herself, she can do nothing more than look after one or two of our children at a time at her flat because she doesn't have the energy to do more and can't climb our stairs.
I phoned the MacMillan support line and was told that any support needed will have to come through my local council's adult social services department once a diagnosis is official. As I work for the county council myself and know the dire financial situation it's in (we had the distinction of making the headlines recently) and how long waiting lists are, I'm not feeling very positive about anything right now.
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