If anyone could help me shed some light I would be so grateful. My dad was diagnosed with lung cancer on the 16/03/15 and after a CT scan was told he had a 4cm tumor in his right lung and 2 lymph nodes that looked suspicious. He was told probable treatment would be an operation then chemo to ensure they do their best to remove the cancer fully. Since this he has had PET scan which showed an inflamed lymph node in his neck, he has been told he will have to have a sample taken from this to check if its related to the lung cancer and if they can go ahead with the operation... Today they phoned him after promising he would have this sample taken within a few days and told him it wouldnt be for a week and the results would take at least 5 days as well as telling him they would need to do an EBUS test?

I'm so frustrated I feel like my parents are being fobbed off at every turn , I live far away from them ad up until now I have respected my dads wishes to let him ask the questions and keep calm. any information we have is already 2 weeks old so why only today do we know about this EBUS test? I have done so much research but as a working class family I feel like our hands are tied when it comes to any other option other than the NHS. We have changed my dad's diet completely trying to ensure he's as healthy as possible for when it comes to chemo or an operation. I have been sceptical since well forever of the NHS and i'm terrified they will lead my 51 year old dad into an early grave. please if anyone can help with advice, alternatives or personal experience I would really appreciate it.

Thanks Amber

8 Replies

  • Hiya amber sorry to hear about your dad I can only say the waiting is the hardest thing to do when all you want are answers just wanted to say I will be thinking of you and hope your dad get the treatment he needs asap.

  • Thank you for your kind words Sue :)

  • Please keep in touch and let us know how he gets on x

  • Amber, when I was diagnosed in 2011 with similar findings it took 5 weeks from initial X-ray until I underwent a Right Lung Lobectomy, the 4 rounds of adjuvant chemotherapy. Your dads MDT team will probably want as much information as possible before considering treatment. They may want your dad to have chemo then surgery as this may provide the best outcome. Try and get a tel number for your dads Lung Cancer Nurse and she should be able to give you advice and information.

    Good Luck Rab.

  • hello Amber

    This is a hard time for you and your dad and it can be worse when you are at a distance. As Rab suggests it may be worth making contact with your dad's Lung CNS who should be able to explain the current plan and what that means in terms of treatment.

    We have an information pack called Lung Cancer: Answering Your Questions which you and/ or your dad might find useful. Do let us know if and we can send it out or give you details of the local CNS. Call us on freephone 0333 323 7200 option 2.

    It is good that your dad has you supporting him, making sure he gets the right assessment/ treatment. It can take time to gather all the appropriate test results but keeping in touch with his team by phone may be useful. They will be keen to ensure your dad gets the best treatment, so do think of them as allies if you can.

    Meanwhile do get in touch if we can help in anyway,

    best wishes


    on behalf of the Information & Support team

  • Hello Amber I have to agree with the others and get hold of your dads Clinical Nurse Specialist as they are pretty awesome at answering questions, advising on types of treatment etc. I would also check if there is a MacMillan nurse based at his hospital or Cancer centre he is attending as they are brilliant. If you have a Maggies Centre near you drop in and get advice from them as it is not only for Cancer patients but family and friends who need help and advice too. I have a CNS, MacMillan nurse and attend Maggies and the information and support provided is brilliant. I will be thinking of your dad and hope he makes a speedy and healthy recovery xxx 😄

  • Hey Amber, wow reading your story was just like reading my Uncles, we went though exactly the same. We just felt we hit obstacles every time, we too had the pet scan and us too had to have a biopsy done on a gland outside the lung area. We waited a week for this biopsy to be done, this was a Tuesday, on the Friday we had the result, I suppose it depends on each NHS area. Just wanted to tell you also that his glands did show up as inflamed on the PET scan, apparently this is very common. Anyway finally it came back negative, he is now recovering at home after having a third of his lung removed. I'm very close to my Uncle, and I know what a emotional time it is, I hope that you get the right results and can move forward. Take care xxx

  • Hi Amber your story sounds so similar to mine. My Dad was diagnosed with lung cancer October 2014 it was December before any biopsys and pet scan was done. We had the news in Feb 2015 that it was incurable but has received palliative chemo which has worked wonders for his symptoms. It can be so frustrating when nothing seems to be happening and I found the most frustrating waswatching my dad wasting away and his gp refusing to even give him any fortisips. Does the hospital have a "lung Pathways dept"? I found the nurses there were great at getting info (and fortisips)

    I hope you are able to get the support you all need xx

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