Newbie

Newbie

Hi, I have just been diagnosed with lung cancer in left lung. No further details as yet as I am waiting for letters for further scans,consultations etc. All that has arrived so far is an invitation for a flu shot appointment?!! Apparently I am at the top of every bodies lists and being fast tracked through the system. As it has already taken 3 months to get a diagnosis-I am not filled with confidence, but it is comforting to see posts from people who are still around after treatment. My question really is, 'Is there any point buying a large box of cornflakes?'

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  • Hi

    Hang on in there until you get all your results back. Definitely buy the largest box of cornflakes!! I was diagnosed 2 years ago & had my right upper lobe removed with the tumor contained and have had no further treatment and so far so good(I know I was lucky and it was found early). There are lots of people on here who have bought many boxes of cornflakes!

    Good luck & let us know how things go

    Yorklass

  • Thank you for taking the time to reply-that would be best case scenario for me as I do have real fear of chemo and all his other friends. Glad you are doing well. In the beginning though it feels like the ground has been pulled from underneath you. Especially for me as there has never been any cancer in my family from year dot and it was last thing I was expecting. God Bless Yorklass. xxx

  • I am another scared lady - definitely cancer in top of left lung, had all scans, down for op in 2 weeks but I'm terrified of it! I know I'm lucky to be offered surgery but actually I'm more scared of that than of dying! I am afraid of ending up permanently disabled with chest pain, and of the recovery period. How did you cope with it all Yorklass?

  • Hi MaryGray - It's now 4 years this month down the line for me and I am good. The only pain I had was from the actual operation, but I had open surgery not keyhole; take every pain killer offered, longer term pain I used to get was 'nerve end' pain again this is 'normal' you get different pain relief for this, I still get it very occasionally, but other than that zero chest pain. I go swimming and go to the gym (think I'm actually fitter now than I was before) I admit to sitting up all night before my operation, watching the 'world' go by from my hospital window, feeling quite or if I'm really honest very scared and got through a few tissues!! I was quite breathless for a while after the op, especially bending over ( I attend a local support group, which is really good and there's always someone who has the same worries or issues that you are experiencing) Not sure which part of the Country you are in, my group is in Leeds. If I can help in way, please ask, you can always send a private message if you want

    Take Care

    Pat (Yorklass)

  • Hello Newbie

    thank you for sharing your post. We hear from lots of people who find the time waiting for tests and treatment plans really tough. Your question about what this all means is understandable and do call us on our Freephone helpline 0333 323 7200 option 2. I am sorry your diagnosis has not been straightforward, but be confident that the lung cancer team are now working with you. It is worth keeping in touch with your team to make sure your next appointment is in the diary. If you have not been assigned a lung cancer nurse yet, do ask as this is the person who will help steer you through your results and treatment choices.

    You may find our pack Lung Cancer Answering your questions useful. I am sure you will find support and advice from our forum members.

    You can see the pack on our website or call for a copy. roycastle.org

    Don't right off the cornflakes yet, keep your energy up and I hope the next few weeks bring some positive treatment options.

    best wishes

    Lorraine

    on behalf of the Information & Support team

  • Thank you Lorraine. It does feel like being in unknown territory without Sherpas. Will take your advice and try and keep calm and carry on. To be honest I don 't really like cornflakes anyway:-) I'm still recovering from the shock of being told, I felt like an oak that had been felled. Equilibrium is being restored and I shall keep on trucking.

    Best Wishes

    Laura.

  • Hi I had part of my left lung removed followed by chemo and 2 years down the line I'm feeling fine. Large box of cornflakes? buy a field!

    Stay strong

    Best wishes

    Hoggy

  • Thanks Hoggy. It feels like being handed a death sentence to start with-but really comforting to hear from people like yourself who have overcome. I suppose treatments have improved exponentially over the years. If you haven't been involved in it, you aren't aware. There has never been any cancer in my family and I was so so not expecting it. We heart attack family and they all popped off early due to that, so on the plus side I've beaten those odds. Keep well & God Bless. xxx

    PS. I don't really like cornflakes:-)

  • Hi there Scared lady, Buy that box of cornflakes. I was on a fast track for my lung cancer, and I was terrified that time was passing by and I didnt know what was happening. However Once I had the scans and met the oncologist and then the surgeon I was soon in hospital. I had my right lung removed and that was 2 years ago. (Still eating cornflakes. :D )

    Like Lorraine says contact your lung cancer specialist nurse if you have one. They are brilliant.

  • That's exactly how I was feeling and with all the delays initially was thinking maybe it was all going to be too late. All the propaganda we hear about getting treated early etc etc and you begin to wonder. Feels like being pushed off the edge of a cliff initially without a parachute. Pleased you doing well.

    Best wishes

    Laura

  • I had my left lung removed more than 3 years ago (first the lower lobe, then the upper one when they found another cancer). I'd no chemo or radiotherapy. I'm still alive and kicking - though not kicking quite as vigorously as I'd like! It's a case of "so far, so good". Though my breathing limits me a bit, I enjoy a busy social life and I live alone but manage my flat and garden without help. I wish you all the very best and hope you're as lucky as I've been.

  • Thanks Elja. That sounds good, no chemo or radiotherapy would be my preference, but will just have to play it by ear until I know more. I do appreciate all you kind people who have troubled to reply. Nothing like info from those who have walked the path before.

    Stay well.

    Laura

  • I had a CT Scan 18th. July,Told by GP. 1st August Lung Cancer, Referred to Chest Doctor at Scarborough 7th. August. Lung Biopsy 14th. August PET SCAN at Hull 19th. August. 21st. August Chest Doctor. 27th.August Lymph Node Biopsy. 4th September Chest Doctor and discharged and referred to Oncologist. 10th. September. DIAGNOSIS , SLOW GROWING ADENOCARCINOMA cancer which cannot be cures has it has spread to the lymph nodes. Palliative Radiotherapy -ct planning scan on day 1 which was 16th. September to be followed by 5 days of radiotherapy starting on 25thSeptember. Altogether a scary 9 weeks roller coaster. still dealing with on e day at a time. 24642

  • Hi-just noticed the date. Your first day of radiotherapy. Hope you are okay. Yes, one day at a time that's all we can do and try to find the bright spot in each day or the beautiful flower or something to lift the spirit.

    Laura

    xxx

  • Oh dear I know exactly how you feel. I was brutally told out of the blue 'Good morning, you have lung cancer' I couldn't speak for the rest of the consultation. To cut a long story short. CT scan, PET scan, lung biopsy, broncoscopy. Result stage 1 adenocarcinoma in right lung spread to 2 lymph nodes. Treatment is very aggressive. Radiotherapy for 4 weeks (20 sessions with weekends off) alongside 12 chemo's. 3 weeks off and another chemo - which made me v. ill. Another chemo due 29th and then one more. It's horrible, aggressive, distressing, painful, shocking but it will make me live a lot longer and I like my life and don't want to pop off. So I'll do what it takes to get rid of it - and I promised myself at the outset, I wouldn't moan or whinge - these people are getting me better.

    All the very best of luck, use all the resources they have, ask for a Macmillan nurse, a councillor, and anything else you can think of - you may not get it but you can ask. Stay positive that's the most important thing, and you'll get through this.

    I'm sending strengthening thoughts.

    Tilstongal

  • Hi-yes it is horrible and time taking. I also promised myself that I won't feel sorry for myself and just try to get on with it. Trying not to tell anybody just now. Really don't want to have to deal with their emotions as well as my own. Had to tell my daughter and she freaked totally. I can't stand it,wish I hadn't said anything. Full body scan for next week then a bronchoscopy. After that they will decide what to do with me. This weeks bad news is that there is also something small and suspect in right lung. Just trying to keep calm and carry on. Pleased you are okay. Be well.

    Laura

    xx

  • Oh that's horrible. Now you have to stay calm. Also you have to take on board that this will now almost certainly involve chemo and radio. This is to make you better. It's not going to be nice, it's going to be a horrible few months - but it is to make you better.

    I decided that I would tell a small select group of family and friends. It has been really good they are so supportive, they are all sworn to secrecy, and I haven't got all and sundry saying 'it'll be ok'. ( I hate that, just hate it, it's so trite) it has worked well for me.

    Now, stay calm, try not to look too far ahead because you do not yet have a proper diagnosis. These cancers are slow growing, so don't worry that you're not being seen quickly.

    Try to take each day as it comes - are you in pain? - if so go immediately to your GP and get that sorted out. You are not responsible for how other people react to the news, so tell them as calmly as you can, and if they freak out ask them to stop as it's not helping you. Tell them you will keep them informed of each development and ask them to walk the path with you. If you can always stop them being negative by telling them it's unhelpful and makes you feel bad. Keep all negative thoughts at bay and ask others to do the same.

    You don't say how old you are, but you know people recover from this all the time. It would be ridiculous to say everybody does, but it sounds as if yours is caught early and you have a chance - but positivity is key, it really is. I read recently an Oncologist saying the same thing, those that allowed themselves to be an emotional punchbag had far less chance than the fighters. So fight.

    Look I hope all this helps you. Keep in touch and let me know how you go - I care.

    Lorna

  • Hi Lorna

    Sorry, I haven't really worked out how this site works-so have just read your lovely message. Totally agree with what you say and I also have told only a select few people who are sworn to secrecy. Probably would have been better not to tell daughter. First thing she did, after having the screaming ab dabs was to tell her father-my ex husband, who was last person I would want to know. I suppose I had to tell her. Only made one mistake with a friend who went on to tell me that it was the same thing her brother died with and the treatment was dreadful. OMG!! But I'll keep away from her in future:-) it is stage 4 inoperable. Mass in left lung too large to operate and with two other sites chemo is all they can offer. Not sure about that, it seems such an inexact science. I'm sixty six and have been working my tockers off to accumulate a retirement pot as I was having too good a time when younger to worry about all that. Maybe not need to worry too much about retirement now. Ironic. I have no problem with fighting, been doing it all my life-but the end has to justify the means. It is a slow growing one-but have been told it's not curable-just maybe controllable with chemo. Good news is that it hasn't spread elsewhere-just lungs. No-not a lot of pain, just what I thought was back ache that I've had for ages. Not really much to complain about- to be honest. The Tena lady situation seems to be easing off as well. That was the worst thing. I am actually looking at alternative therapies. I'm a big believer in food as medicine and cancer cells can't survive in a body that is in an alkaline state. It's just being able to achieve that one. Have an appointment with oncologist to discuss chemo on Wednesday-so will see what he has to say-but don't think I could cope with interminable courses of chemo.

    Could be a lot worse for sure.

    Hope you are keeping well-so kind of you to take the time.

    Laura

  • Hi Laura,

    If it is slow growing then I would certainly go for the chemo. It could give you literally years more for a few weeks discomfort. I know it's not nice but it will give you more fun time! I think it's fair to say that they wouldn't offer anything that wasn't going to prolong your life, I mean if it were a hopeless case you would not be offered chemo.

    Many lung cancers are inoperable particularly if they've spread to lymph glands. Mine is inoperable but the results with chemo are very encouraging now so do please talk to your consultant about outcomes.

    As for alternative life styles or meds I would be extremely careful about these. I got an email the other day from someone who had a special oil and it would cure lung cancer in a month! Well if it were that simple the NHS wouldn't be spending a fortune on chemo/ radio but just giving this magical oil! I think diet is important but in conjunction with other meds - it's a balance.

    Good luck tomorrow with your consultant. Stay positive! Do let me know how things go.

    Lorna

  • Hi Lorna

    Not quite what I expected today. I expected to get some major opposition when I said that I wasn't keen on chemo. Quite the opposite in fact. Apparently there is an alternative drug for people who once smoked,but no longer do. Not suitable for all,but depends on mutation of the cells. Suitable if there is mutation. Not chemo-just a tablet with minimal side effects. Itchy skin, diarrhoea. Will have to wait 2 to 3 weeks while they test my specimens to see if I'm suitable. I asked how long I have if no treatment. 6 to 12 months and with chemo,would maybe extend by a year,2 at most. I know it's kind of guesswork to a certain extent-but I did ask. For me the extra time, if I was feeling ill and all the rest of possible side effects wouldn't be worth it. They did say that I would need multiple courses. Anyway options still open I suppose. If the tablets not suitable I might try one go at chemo, but I'm really a quality over quantity kind of a gal. Meanwhile I'm maintaining my healthy diet, carrying on as normal and keeping an open mind. It just seems so odd,that I don't look any different. Not much in way of symptoms apart from pesky kennel cough, haven't lost weight or appetite-yet I'm harbouring this disease. It feels surreal-alternative universe. I do think that there is some basis for alternative therapies-but wouldn't buy any oil or anything like that off the Internet or anywhere else. Would only be something that I could produce myself and quality control. I am also stepping up the anti oxidant fruit and veggies in my Nutri bullet whizzed machine. Maybe not a cure-but helps the body to fight back. Have also cut out sugar completely-so doing the best I can and not going to take much notice of doctors deadlines either. Pleased you are managing to stay well and enjoying your life. That's what counts in long run.

    God Bless

    Laura

  • Dear Laura,

    I am so sorry that the diagnosis does not give you longer, but remember these are just averages and you may have much more.

    I am surprised that they have an alternative to chemo but delighted that they can offer you something else. There's no doubt chemo will make you ill, and it is good that you may be able to have something with, less side effects.

    You must be very frightened- I hope you have someone to hold you at this time.

    Keep up the healthy lifestyle so your body can fight this horrible invader - I know just what you mean when you say it's hard to believe your body has this awful thing in it when you have no symptoms and it is an alternative universe. I felt that I would wake up soon and we'd all have a good laugh at a silly dream - still do actually!

    I know no words can really comfort you and I am a stranger, but I will walk the path with you if you keep in touch.

    So sorry I can't help more but try to pack every day with me-time doing things you want to do, and that may be just sit and watch the world go by, nothing major.

    God bless, you are in my thoughts and prayers.

    Lorna

  • Hi Lorna

    Yes, I do realise that. A strong will is all powerful and I'm good at proving people wrong. Strangely I've stopped being frightened. It was the unknown that frightened me-now I know the worst I can deal with it. I don't really have a special person to hold me. There are a number of friends who are supplying me with what I need from them. You don't get it all from one person I don't think. A very good friend in Spain who is heartbroken for me. He wants to come over and look after me-but I can't bear his pain-that's difficult to explain. Similairly my daughter. It's always me who has been the strong one for everybody else-now I need to be strong for myself and I can do that-but I can't support anybody else at the moment. Could be worse, could be Ebola. Or if you were involved in a fatal car crash-you wouldn't know it was going to happen and wouldn't have the chance to get your life in order first. Now I have the chance to be nice to old lady's,kiss small children and people will remember me as a really nice person instead of the little bitch I am really. I'm determined that this is not going to get me down. I'm stronger than cancer and all of it's parts. I'm trying to keep working until the end of November-if all goes well, I'm due a bonus. I'm in sales-so it's a quarterly bonus. Not really greed-but I've worked hard for that and I know it would delight the company not to have to pay me. Then I might have some time off 'sick' after nine years working with hardly a sick day to my name-I think that's fair. Working is helping me to deal with this-I can focus on something else for most of the day.

    I will keep in touch. Thank you for the support. It's very kind.

    Bless you too and keep well.

    Laura

    X

  • The best advice I can give you is, listen to your dr, do everything you can to NOT get depressed! But the #1 thing...DO NOT LOSE HOPE! Cancer survival rate is now like 75% overall!!

  • Hi Laura,

    So sorry not to get back sooner but my family have been visiting - with a 5 month old and a 21month old it is bedlam!

    You are so strong and this will really stand you in good stead now. Look after yourself and your daughter will soon learn that it is you who needs the support now.

    I really admire you for not being frightened, I am still. i know others pain is hard to bear but I learned early on that people feel so helpless that sometimes it is kinder to let them help as they wish to - they feel useful and supportive if given a role.

    I am so pleased you are going to work to get your bonus - go girl!

    Take care and keep in touch.

    Lorna

  • Hi Lorna-no apologies necessary. Yes,maybe this is my lesson to learn from this-to accept from others-maybe even if it's something I don't need or want. People can only give what they have to give and I have to accept that. It's the thought that counts. I'm not frightened to die-that for me would be easy. What does frighten me, if I'm honest is the medical profession. I really can't get my head around a treatment that has more chance of killing the host than the disease it is trying to eradicate. It isn't logical. Now perhaps with the threat of chemo being removed from my immediate vista, I can deal with this. There is nothing to fear only fear itself. Identify your fear and name-then you can make it vanish. Fear is the bogey man hiding in the dark under the bed. If you could see him clearly with his skinny little body and raggy underpants you would laugh at him. Reminds me of a story I heard from some friends long ago. They were students at Durham university and walking along the tow path a man came towards them wearing a Mac. As he drew close he opened his Mac revealing trousers that had no middle bit. Held up at the knees only and his midriff was was bare revealing his dangly bits. The girls absolutely collapsed laughing and he ran off in total confusion.

    Best Wishes

    Laura

    xx