Ways to cope with diagnosis of lung cancer?

Hi. I'm new to this site, and to this situation I find myself in. I have been being treated by my GP for the last two months for a chest infection. Two chest X-rays (Six weeks apart) and three sets of antibiotics later (one I had to stop because of side effects, third started to make a difference on the cough and breathing) he sent me for a CT scan "just to be on the safe side, although nothing nasty has shown on the X-rays"). It was therefore a bolt out of the blue to be called in and told I had a tumour in the right lung. I am apparently T4N1M0. So the tumour is big. I was also told that it seems from the scan that it is all confined to the right lung. My doctor was just going to send me to our local hospital, but I have decided to travel north to the specialist lung cancer clinic in Manchester. I also have family (Sister and niece) up there, whereas at home there is only my son (24). He works full time, and would struggle to take care of me. I know my doctor doesn't has specialist knowledge, but - last time I talked to him (I know he is cross that I'm going north, not staying local) I felt like he already had me dead, buried and in my coffin. I'm scared, but trying not to let it get me down. I don't know what to expect really, I don't know the time scale, I don't know how serious it is, (other than very) and I don't know even vaguely what my chances of survival are. I'm trying to stay positive, but I'm terrified that my son will be left on his own - he is an only child, and his father hasn't been part of the family for years - it's just been my son and me. I'm not sure why I'm posting on here - probably for reassurance (unlikely to be available!) but it's doing me good just "venting"!! Thank you

17 Replies

oldestnewest
  • Hi LisR

    Sorry to hear your shock we all seem to go through this. If your GP referred you to a lung specialist clinic, they will be In touch with you fairly quick i would have thought. Everyone on here will give you support and probably reply to you with more information. My lung cancer was stage 2 and that was 2012 and after chemo and other treatment im nearing 60 and doing really well. My advice would be to keep pushing for questions and answers. Sounds like you are going to the right place that specialise in lung cancer. Take your sister with you and take notes. Most people do as you will always come out forgetting things.

    Keep positive we are all with you and keep in touch Lisa. Many on here will be able to help you.

    With all best wishes

    Hoggy

  • Thank you Hoggy! I appreciate your advice :-) My own doctor is not happy at my decision to go up to the specialist clinic - tells me the hospital down here is fine - but one of the other doctors in the practice is perfectly happy to refer me, and I have decided that that is the best option for me; a specialist lung cancer clinic, and family to help me through. Means leaving my son alone down here, but he wants me to go north to give myself the best chance. I'm trying to put fear to the back of my mind until I know exactly what I'm facing, but I am so glad I've found this site, where I can share my fears with people who understand.

  • Change your GP to the one who will send the referral. You are quite entitled to this if it feels better for you. He shouldn't mind this and will probably still take an interest in you and how you are doing.

    Best wishes

    Hoggy

  • Hi LisR.

    Sorry to hear about your diagnosis: it's always a big shock but there are things you can do.

    I think you are absolutely right to take control of your treatment and going to a specialist clinic (The Christie?) sounds like a good idea especially as you have family to support you and also if you might have to wait for local treatment - you can always be referred back to somewhere local later on if you want to. I'm lucky that I have very good GPs but they would be the first to admit that their knowledge stops short of a cancer specialist.

    In my case I had no symptoms and it was the x-ray that my GP added to my regular check-ups that picked it up but faced with waiting six weeks for a CT and results over Christmas I got my GP to give me a referral to a private clinic where I paid and got the results the same day. I took this to a lung cancer specialist doctor who got me an NHS PET scan, brilliant because it shows up any areas of abnormal cell activity like cancer or pre-cancer. Unfortunately my scan showed up not only a tumour in the lung but also one in the bowel as well!

    To cut a long story short, I have spent the last three months actively managing my treatment and in that time I have had successful bowel surgery and will have lung surgery in the next couple of weeks - much faster than if I had just left the system to work at its own speed.

    I agree with Hoggy and would strongly recommend having someone when you see the consultant as it is very difficult to take in everything at a meeting while you are trying to process the information at the same time. You can also write down a list of questions in advance and give it to the doctor to answer and/or record the conversation on your phone - if you explain why I'm sure the doctor will not refuse.

    Don't be scared to ask questions and if you don't understand the answer ask them to explain. Your GP gets notes of all meetings with consultants and you can ask them for a copy to study in your own time.

    Good luck, stay positive and keep in touch

  • Thank you seasidebob! You've given me some wonderful information there. I'm hoping that further scans will agree with the CT scan, and that it is confined to the right lung, but I know only too well not to get my hopes up - it was enough of a shock to think everything was okay after the X-rays, then finding out about the cancer. I'm going to the special lung cancer clinic at the Withenshawe in Manchester. I know my local hospital does treat cancer patients, but I feel I may stand a better chance of survival if I go to the specialist clinic. It also makes more sense from a care point of view as I have both my sister and niece up there, whereas here in Devon there is only my son; he would struggle trying to care for me and hold down his job at the same time - although I am 64 he is only 24, and there has been just the two of us for a long time now; he would also be coping first hand with his fears etc. Although my niece also works, she has her own business, and is hoping we can arrange it so that she can come with me to appointments - she only lives 400 yards form the Withenshawe, and being an acupuncturist actually has quite a lot of medical knowledge!!! And my elder sister is a nurse (retired!) so I'm sure I'll get bullied by both - in the nicest possible way.

  • Hi LisR,

    I am sorry to hear about your recent diagnosis,this must have been quite a stressful time for you and your son. On a positive note, there has recently been a project about getting patients superfast diagnosis and treatment in a new project at Wythenshawe which is aimed at improving the effectiveness of treatment. Doctors have managed to speed up waiting times by having all tests, equipment and specialist staff together at one site.

    In addition to all the good advice you have been given in the previous posts you might specifically want to ask.

    • What further tests you will have

    •What are the waiting times?

    •What your treatment options are based on the investigations and test results

    •How effective are the treatments they suggest

    •What kind of follow up can you expect (especially as you live a distance away)

    •Are there any new developments available

    With kind regards,

    All the team at Roy Castle Helpline

  • Thank you Roy Castle Helpline! That really is very helpful indeed. Hopefully my niece will be able to come with me for my first appointment at Wythenshawe, but either way I will print this off and take with me into the consultation. I am trying to stay positive; I will keep my appointment tomorrow with the chest clinic here in Plymouth, but explain that I have decided to go North to Wythenshawe at the end of the week. I also need to ask if I will be "fit to fly" - didn't think about that until this morning! Hope they say yes, as it's already booked and paid for for Thursday! I suppose that my hope is that they will say yes, it's all confined to the right lung, yes, we can treat it, and yes, the outlook is good. But - I know I have to prepare for the worst - easier said than done though.

  • So here I am, several days on. Flew up north on Thursday, and over to the Wythenshawe Rapid Hub on Friday morning. Had an MRI scan (I think head-only) first thing, then the lung function tests, then appointment with consultant, then over to the Christies for a PET scan in the afternoon. Now, when I saw the consultant, to be honest I was so tired from the stress of the past few days, flight up, and travel through rush hour to get for the MRI scan that I kept missing what he said, and had to ask him to repeat. Fortunately my niece was with me at this point. From the information that he had at that time, the tumour is in the middle lobe of the right lung. His next comment was the worrying one - I think I've remembered it correctly - he said that, in the lower lobe of the right lung, there were "strings" coming from the nodes, which could indicate the cancer was spreading out of the lung on a microscopic level. He didn't give any indication as to how common this was. He went on to say that, if it had spread, they had no meds etc that could treat it. Is this true? He went on to say that, if it is just confined to the lung, the usual procedure would be surgery and chemotherapy, but that at present that would not be offered to me, as my lung function tests showed that I would not be fit for the surgery?? He suggested that I took short walks, and went up and down stairs etc to try to build it up a bit. I have an appointment on Tuesday morning to ride a static bike wearing the lung gear, and then in the afternoon I have a bronchoscopy, which I am dreading. I assume i will then see the consultant in a day or two after that, and that they will have the PET scan results by then as well. Shaking, scared, stressed to the edge and beyond, can't seem to maintain my positivity - feel like I'm looking at "dead within weeks" . I'm weepy, but can't seem to cry, I just desperately want to hold my son tight, but I know |I must stay here in the North, at least for now, but frightened to death that I'll not make it back home................. doesn't help that I've just heard that one of my best friends - a lady 10 years younger, fit as they come - had just died from ovarian cancer after being in hospital for 3/4 weeks ........

  • Lisr, I'm sorry I've only just seen this. I trust by now you have had your bronchoscopy. Like you, I was dreading mine, I was far more nervous about it than I was for the actual surgery. Once the sedation was underway, my recollection is of being told to breath deeply, then the next thing was 'egg mayo or cheese sandwich, tea or coffee'.

    When I was diagnosed in December I also went through the 'dead within weeks' thoughts, I'm sure most people do. I've had my surgery and will start chemotherapy shortly. None of us knows what the future holds, but there are some very inspiring stories on this site that give me hope.

    Stay strong.

  • Two years ago I was diagnosed with lung cancer. I was offered surgery and then mop up chemo. I was so frightened not for myself but for my children (aged 33, 30,20 but my babies just the same). Everybody that I met along the way thought I was dying,they have all told me since. But here I am. I have held my first grand child by my eldest son, seen the middle one marry and helped my daughter move into her own home. I just wanted you to know there is hope. I now find myself hugging my children and telling them I love them all the time.. . . . . and when you get home you will be doing exactly the same to your son. Marie x

  • Hi Just read your post. Hope you are ok as can be. Not sure what stage you will be at now. I live near Wythenshawe hospital too and have just 2 weeks ago had a lobectomy and and had top lobe of left lung removed. I am similar situation too, just me and my son who is 19. Thinking of you lots and sending you comfort hugs x

  • Thank you all for the encouraging comments - and my apologies for not replying sooner!! As you may imagine, the last couple of weeks have been manic, to say the least. After all the test results were in I saw the consultant again, and he had good news and bad news for me. The bad news was that it was definitely lung cancer, and the mass is quite large, but confined to one lobe of the right lung. Also, it is the primary site, and all scans appear to show that it is confined there and hasn't spread anywhere else, though they cautioned that it is possible still. But the biopsy shows that the lymph nodes are unaffected. The only thing they are concerned about is some "specks" in the right lung lobe(s) which may be spreading from the main tumour. Saw the oncologist a few days later, as I have been recommended to have chemotherapy first to "knock out anything lurking", then possibly surgery. Unfortunately, to continue treatment at Wythenshawe would have meant staying up north for at least another 3 months or so, which wasn't an option really, so I have now returned home to near Plymouth, and will have the chemo down here. Wythenshawe are liaising with my local hospital, and I see the oncologist there on Friday to find out when I start treatment - according to the staff at Wythenshawe, should be within two weeks. Feeling a bit more positive, and determined to beat this. Apart from everything else, I have one gorgeous son and two hooligan dogs to look after!! Once again, thank you all - your encouragement means a lot to me x

  • Hi glad to hear you are ok and have great attitude about things. Sounds like you have had a time of it all happening and hoping all goes as well as can on Friday for you. Ah great you got that gorgeous boy and those 2 tearaways to look after!!! Take care and love and hugs x

  • Thank you webbs8! Been a hectic couple of weeks, and I still am in a bit of a daze, but I'm determined to beat this thing and get back to "normal"!!! Just need to make sure I've got everything in place to cope with the chemotherapy, in case I get side effects, or an infection and have to go to hospital - son unfortunately doesn't live very close, and works full time, but I have a good network of friends in place now, and am contacting my nurse to see about arranging a carer if necessary - hopefully one who likes dogs!!! But my regular kennels are being great, and have said they will take them in as and when, no problem. Onwards and upwards I keep telling myself! I'm also hearing that if you expect bad side effects from chemo, you are more likely to get them (psychosomatic!) so I'm telling myself I'll be fine! :-)

  • Hi bet it has been and ah bless you, you sound so upbeat and positive which is great, good for you. Yeh makes u feel better to know all things sorted or covered and brill u got good friends and even good people to help u with the dogs. When does ur chemo start? Thinking of you and u doing great x

  • Got my appointment with the oncologist down here in Plymouth on Friday, so should find out my start date then. The oncologist in Manchester last week said I should start within a fortnight, and if they didn't give me a date that soon I was to ring her, and she would "sort it"! Will keep in touch! x

  • Hello LisR,

    this must have been a tough time for you and all the family, waiting for investigation results is difficult causing anxiety about what treatment plan will be offered. It is good that you are in touch with the lung cancer nurse specialist, these nurses can be of great support acting as a go between yourself and the oncologist and they can answer any questions that you may have. We have information booklets on Chemotherapy and Surgery which can be ordered on line at the Roy Castle web site,

    Feel free to contact us at the Nurse Led Helpline if you need someone to talk to or have any questions you would like to ask. Freephone 0800 358 7200.

    Kind regards

    Roy Castle Helpline

You may also like...