I was diagnosed in 2018 with liver cancer and had a tumour of 17cm was terrible unwell being sick everyday lost almost two stone, by gp just ordered blood test for months on end and saw there was something wrong but did not take it seriously and made me wait months on end eventually I had turned to a private doctor had a CT scan which they sent me to the hospital as an emergency patient.
Now I have been told that my mri scan and ct scans have shown nodules on my lungs and the doctor believes it could be secondary lung cancer. They had the results of my mri scan in January but chose to tell me end of March. I have no confidence in my gp or my doctors as they don’t seem to ever take it seriously. I have very bad asthma and recently been very short for breath, feeling tired all the time and have chest pain. Not knowing if it is cancer a 100 percent and waiting endless for test results 2 weeks at a time is giving me awful anxiety and stress because the first time was such a terrible experience for me
Im waiting to hear back from the hospital.
I would like to know how long did it take anyone with lung cancer for the doctor to detect it and let you know the results?
Is it normal to wait months for results?
And are they any major signs or symptoms to look out for. Sorry for this long post I just have lost all faith with my doctors so would like to hear from people who have actually experienced it themselves?
Many thanks
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Valentina_22
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Hello yes unfortunately my liver cancer was in 2018 before the pandemic and they took 6 months to diagnose me and this time round it’s already been 4 months but yes I am living in the uk. Like you suggested without a biopsy I won’t know for sure what it is, I am waiting for the hospital to show my CT scan to the MD I don’t know what that is but they will be meeting with them on Tuesday and they have booked a telephone conversation for the following Wednesday so two weeks from now and then from there I think they will be able to tell me if I need a biopsy. I have asthma but it’s become very bad I’m always short for breath and always tired and have a cough and chest pain but I don’t know if that’s related. Thank you so much for your response I feel so alone with this and the whole waiting process just makes you more and more anxious by the day. I will definitely call the foundation tomorrow! Thank you very much 🙏
The waiting is so very difficult. Sadly, as Denzie indicated, covid has delayed so much of this kind of care. The symptoms you are describing can be associated with lung cancer, but they also could be related to other pulmonary issues. The CT and MRI can’t diagnosis those nodules as cancerous. You will need a biopsy-obtain tissue from a lung nodule- to confirm if it is cancer and what type. Additionally, a PETscan can show metabolic activity…that is, fast moving/dividing cells light up on a PETscan to indicate likelihood of cancer in those bright spots. Doctors use PETscan less frequently for lung cancer than they use CTscan (or maybe that is simply my own insurance coverage). So, you will need a biopsy and/or PETscan before they can determine IF it is cancer and if so or if not, how to treat you for the symptoms you are having.
Yours seems like a very long wait already. For my diagnosis, I was hospitalized for a week when I became so sick and they found fluid in my lung. Within 24 hours of going to the emergency room, they did a procedure to get tissue for a biopsy and a preliminary result that it was lung cancer. after that, it took a few weeks or more to get detailed biomarker testing to determine best treatment.
I am not sure what you are waiting for the hospital to tell you. For the sake of your anxiousness, perhaps you should call your doctor or hospital contact before the weekend and ask for an update.
Hello Thank you so much for your response! Yes I have only had an MRI scan and a CT scan I haven’t yet been offered a pet scan but the hospital said that they are going to show my results to the md at the hospital who is only in one day a week on a Tuesday so they will give him my scans and then the following week will give me a call. So I’m basically in limbo just waiting to see what’s going on. I have called them emailed them called my gp but I think either because of the pandemic the hospitals are overloaded and in turn taking longer to respond or think because of my age maybe they don’t take it so seriously as I had that experience when I had my liver cancer.
Can I ask what symptoms you had? Ofcourse without knowing what it is I cannot relax, I’m hoping it’s something else but I have read in the forums of people having previous cancers and then it coming back in another area of the body so I’m very anxious but I guess it’s just a waiting game from here. I just wish I could speed up the waiting time.
Thank you so much for telling me of your experience and informing me about the pet scans I will look to see what my options are and thank you for just responding. I don’t know anyone else who has experience cancer so it’s nice to hear from people who have too. x
MD at the hospital only one day a week? Oh bless you. My symptoms were similar to a flare up of seasonal allergies, with shortness of breath as my main concern and feeling fatigued. My father died three weeks earlier, so I thought I was just run-down exhausted visiting him while he was in hospice care, funeral, etc. In hindsight, I think I was exhausted from all of that but that the cancer was causing some of my exhaustion. My primary doctor and I both assumed it was asthma and/or allergies or a respiratory infection until my xray showed all the fluid in my lung.
When I am feeling really anxious, I sometimes can ask myself, "is that TRUE??" about whatever I am saying to myself in my head. Like "I just know it's going to be cancer?" Is that true. Not necessarily. I don't know for sure yet. GO2foundation has a great website too with a list of questions to ask doctors. Not all of the questions will be relevant to you, but they might give you an idea to be prepared when the hospital does call you.
Oh thank you so much for the link I will definitely check it out thank you it will be very helpful. Yes my md is only in one day a week apparently!! I’m very sorry to hear about your father and the experience you have had to go through! You seem like a very strong person! I will definitely double check with my gp to as my gp seems to think it’s my asthma flaring up but I feel immense tiredness all the time and have had shortness of breath so similar to your symptoms. Yes I am the exact same Jennifer I tell my self one minute it’s defiantly cancer and then I make myself sick with worry that I have to calm myself down and say well it could be something else and I might not have to be so worried and stressed but it sounds like a lie ofcourse without knowing the result! But I will try and be positive until I hear from the hospital I guess! Thank you 🙏 😘
Valentina - sorry to read of your anxiety and your UK waiting experience . As others have said, Covid has added to wait times but nodules in the lung aren't always cancerous and there is a protocol for dealing with them dependent on their size. PET scans are usually done when a tumour looks like it might be operable and to see if it has spread. If it has that requires additional or different treatments and there are many if it is lung cancer. If it's secondary cancer spread from your liver then the treatments may differ from those for primary lung cancer.
Breathlessness, chest pain and asthma can be worsened by anxiety so try some breathing exercises to improve this.
It's common for a multidisciplinary team meeting to be weekly but some hospital trusts also have pulmonary nodule clinics. I'm unsure where you're being treated. Are you treated by your GP for your asthma? If so, contact them and explain what's going on as they may be able to make an urgent referral to a respiratory consultant(chest physician). It's also possible and happens that some people with lung cancer have other conditions including asthma and COPD or contract chest infections that can impact their breathing.
The overlap in symptoms is what's increased delays in lung cancer but the symptoms are many; not everyone has them and many are detected by what's called 'incidental' findings when being investigated for something else.
I went to A&E mid October with strange symptoms for me and after 7+ hours discharged with steroid tablets and antibiotics after having nebulisers. I'd had childhood/early adult asthma but this felt completely different . The next night I was no better and called the hospital who told me to call the ambulance. I was admitted and treated for a week as 'uncontrolled asthma' and a CT scan booked.
This didn't happen for over a month as the scanner had broken down; it showed a 'large mass' which after MDT discussion 2 days after I was given the results meant I was sent for a PET scan then a letter arrived with an appointment with a thoracic surgeon. A few days later (after their next weekly MDT) I was called by the surgeon's secretary telling me I had to go in first thing the next morning to see him i.e. not wait for my appointment a week later. He told me whatever the large mass was it needed removing with half my left lung and 2 weeks later I had the surgery. A month after surgery I was told it was adenocarcinoma and a 7cm tumour was removed.
That was in January 2011. So much has changed in lung cancer knowledge and treatments since then...and our imaginations can run wild thinking if it is cancer it must be ravaging our body every day but for many, it can have taken a long time to even be seen on a scan or x-ray.
Unfortunately the growth in treatments means more tests are needed to confirm a diagnosis which involve waiting especially if not treated at a large specialist cancer centre.
If you have no faith in your doctors you're entitled to a second opinion and to change them. Presumably you're still in follow up for your liver cancer?
In the meantime you may find this information helps - as waiting is an unavoidable part of the investigations so finding a way to cope is really important.... good luck... roycastle.org/about-lung-ca...
I believe the majority of people are diagnosed at stage 4 due to incompetent GPS. I was back and forwards for 18mths and just given blood tests. Eventually it was only due to extreme pain I was referred for a scan. Where it was found I had stage 4 lung cancer this was April 21. I was given a bronscosipy to confirm it was definitely cancer. This was then sent off to be tested for type and I started treatment at the end of June. We all know our bodies and we know when something is wrong. This could be a separate cancer they won't know until you have a tissue biopsy. My symptoms began with extreme fatigue and a need to constantly clear my throat. Because there are no pain receptors in the lungs it can grow for along time before it's detected. Some people people have no symptoms and are found by chance, others with back, hip and shoulder pain. Some metastasis spread to the brain it's so different for everyone. The majority of people are unhappy with the lack of care shown by our primary care doctors. You really need to advocate for yourself. I hope your dx is quick and straightforward from here on in and wish you well with your treatment 🤍
Like Denzie says it should take no more than a couple of months.I went to my GP early June 21 with an unrelated medical issue and no symptoms of lung cancer. I was diagnosed and urgent referral to local hospital and from there to Christie's Centre of Excellence in Manchester.
Thank you so much for your response I am waiting to hear from the hospital next Wednesday so hopefully after that I will know what’s going on and hopefully it moves faster then it is now. I hope you are well now thank you getting in touch! X
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