This roller coaster has swung off course

Hi Everyone

Just when we thought everything was settled and organised for surgery next week everything has changed again!! I really don't like this ride but I can't get off!!

I went for CT scans at our local hospital last Wednesday as the final step before having part of my right lung removed next Tuesday with a few extra bits of 'patching up' We got home to find an answerphone message asking us to contact the lung cancer unit (at a different hospital) The upshot was the following the deeper biopsies that had done the previous week they had found cancer cells in my windpipe and surgery was no longer an option. We were devastated. Fortunately an appointment had been organised with an oncologist for the following day. Thank goodness for our local Hospice who looked after us with support and immense kindness during that afternoon. I didn't know you could cry so much but now I know you can and you don't actually fall apart!!

The oncologist was a good guy who explained clearly what the problems were and why surgery was no longer an option and why it appeared to take so long to get a proper diagnosis of this wretched cancer. It seems the cancer is in a very awkward place and despite many tests it kept throwing up false negatives and the specialists were suspicious - clearly they were right !!

They are still looking at a curative treatment - chemoradiation - 33 days of raditherapy and cisplatin and etoposiide for three days during weeks one and five of the radiotherapy. It doesn't sound a bundle of fun and starts in three weeks. Has anyone had this treatment - it would be useful to know what to expect?

Cheers to everyone. Hope your week has been better than mine!

8 Replies

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  • Hi Jenco, What a blow its turned out for you. I myself was one of the lucky ones who had the surgery, so I cant advise you on what to expect. I did have Chemo after surgery but my body didnt take to it and it was stopped. That was two years ago and fingers crossed I am still ok.

    Your oncologist and your local hospice sound very good and I am sure they will help you through this difficult period.

    Good luck with your treatment and try and stay positive it does help. :)

    Keep us posted. xx

  • Hi Jenco,

    I have had this chemo radiation treatment for my adevenocarcinoma stage 1 plus some lymph gland involvement.

    Unless you are sure you want to know the side effects - STOP READING HERE

    They used the drugs Vinorelbine and cistplatin and I had 20 radiation sessions alongside 12 chemo's in 24 days (I had weekends off!) then adjuvant chemo's of the same drugs for 4/5 weeks following. It is a very aggressive treatment and I think only used on patients that stand a chance of full recovery (cure). It is hard and I was very ill with it it made me nauseaus (so much so I was re-admitted to hospital twice) sick, tired and I have a lot of pain. I have a lot of pain in the radiation site and because of the position of the tumour the radiation burned my oesophagus and I have much pain when eating-this will pass and to me it is worth the pain and discomfort because I have a chance of cure and I want to live as I have a lot to live for.

    I have been honest about the awful side effects but you may not have them as every cancer is different and every patient is different and has a different reaction. I do hope this helps and has not frightened or worried you. It may be a horrible few months but what is that compared with the rest of your life? You just have to bear in mind that this is all to make you better - you can do this.

    i am now at the stage of recovery but have not had my results as it takes quite a few months for swelling to go down and everything return to normal. It is an anxious time.

    Very good luck and please let me know how you get on.

    Lorna

  • Thanks I really appreciate the information and no I don't like it but I would rather know what I am heading for. I have found it very difficult to find much info about the combined treatment. I have leaflets about each of the drugs and the radiotherapy and no doubt I will get more when I go for my pre appointments. I'm glad you are doing well. It sounds gruelling but I, too am not ready to give up on life yet - please keep in contact - it is all very scary but great to talk to someone who has been there.

  • Ok that's alright then - I didn't want to frighten you. It is gruelling and painful. There's no doubt about it it is a very aggressive way to get better and there will be times when you want to give up, but don't! You can get through it with grit and determination and I'm sure by the sound of it you have that in spades. It is possibly 5 months of treatment and recovery but you can recover and then hopefully all will be well.

    I am waiting for my results and that is really scary. I'll let you know when I've got them. What stage are you? Ask them to write it down for you - mine is T1A N2 M0 -this is one tumour (T1) A I think is for adevenocarcinoma N2 is lymph glands 2 affected and M is for if its spread to the bones and I can't think of the word!

    I found info almost impossible to obtain but do be careful of the sites on the Internet which can and do misinform and scare you witless!

    Good luck and do let me know when you start treatment and how you get on.

    Lorna

  • Jenco

    Sorry to hear that the rug has been pulled from under your feet. It sounds as though your team are working hard to find the best treatment for you and it is a positive that what they are focused on is something with curative intent - no matter how gruelling the experience might be.

    You can find out more about staging (Lorna you explained it well - the final M is for Metastises - when the cancer has spread somewhere else) in our Lung Cancer Answering your Questions pack - it is available from our helpline, Freephone 0333 323 7200 option2 or by visiting roycastle.org

    wishing you well,

    Lorraine

    on behalf of the Information & Support team

  • Thanks to everyone especially Lorna for her honesty. How long ago did you start your treatment Lorna? Things have really speeded up for me now. The tumour is a squamous one T4 N0 M0. The tumour hasn't spread but has pushed into my trachea which is why surgery was ruled out although it might be an option at a later stage. I had my radiotherapy assessment on Tuesday - have had a mask made - interesting!!! and have been measured up, lined up, lasered and tattooed. I'm ready to go.

    Treatment starts next week - the first two days are dry runs for both the radio and chemotherapy with lots of information. Wednesday to Friday is full on with chemo staring at 8.30am (all day) followed by a blast of radiotherapy before we go home. I have been warned of oesophagus problems (like you) because of the position of the tumour. Hopefully all the treatment will be over by Christmas and I am trying to focus there and take each day as it comes. I have a terrific support network both on the medical side and family and friends that I know will help me through and I am a great advocate of the Hospice movement - our local hospice have been wonderful through some very dark times. I'll keep posting - it's good to stay in touch.

  • Hi Jenco,

    I started my treatment in July, I had 4 weeks of intensive treatment. This was 1 week as an inpatient when I had radiotherapy every day alongside chemo's - as one chemo can affect your kidneys I had to be in hospital. Then I had 2 weeks outpatient treatment of radio every day and two chemo's a week then another week as an inpatient repeating the first week. After all that I got 2 weeks off and then 4 more weeks of chemo as an outpatient. It was tough the sickness started in week 4 and sometimes was so bad I was hospitalised. The tiredness is awful but hey all you've got to do is rest and sleep. The pain in the oesophagus is bad and is very hard to cope with. You maybe should ask for Ensure drinkson prescription - these are meal substitutes, also eat as many calories as you can now, get a bit of extra weight on - when I was told this I was sceptical but it was good advice as I now have lost about a stone and a half and whilst I was maybe on the chubby side I was not much overweight so losing this much has made me a bit gaunt.

    It is going to be an uncomfortable few months but you can do it - if I can you can - eating is hard and with a lost appetite it can be hard to motivate yourself to eat but it is very important to force yourself to do so as you need good calories to fight this disease and repair your body.

    The best of luck to you and please remember I am happy to help if you have a question and I will be here for you.

    Good luck!

    Lorna

  • Hi Lorna

    I'm back after ten days in hospital. I have a T4 N0 M0 NSCLC and am having 33 sessions of radiotherapy alongside two three day sessions of chemo (cisplatin and etoposde) three weeks apart. I am nearly half way through the radiotherapy but the first lot of chemo completely knocked me out - hence the hospital stay. like you the radiotherapy is affecting my oesophagus because the tumour has gone into my larynx making it inoperable. There is nothing nice about this illness or treatment!! The hospital is great - I am being treated at St James's in Leeds and I couldn't have better care. I know I am lucky when I read some of the other posts.

    There is doubt whether I will have the second lot of chemo as the first lot made me so ill. It has been put back a week and it will be reviewed when we see the consultant on Friday. He says the radiotherapy is the most important part of my treatment and they don't want me to miss any of that because of the chemo. I got whheled in on a trolley several times while I was in!! I think it is all worth it but what a journey. I hope you are continuing to improve and I will keep posting.

    All the best

    Jenny

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