Anxious

Hello

I am new to this site, after all the usual tests and scans I was recently diagnosed with adenocarcinoma, when I was given the diagnosis I was told it had not spread so I can have surgery and an appointment for two days later with the thoracic surgeon was given to me.

About two hours after getting home my Macmillan nurse phoned me to let me know that my respiratory consultant had reviewed my PET Scan and noted my thyroid was showing activity, so he wanted me to have an ultrasound and a possible biopsy!! I was told this would not affect my surgery !!!

I saw my surgeon on the Friday and we agreed the surgery, he also said I would need chemo afterwards as the tumour is 6 cm.

On the Monday I was given my operation date for 5 September in guys hospital, London. Then later that week (last week) I received my appointment for a ultrasound guided biopsy.

I know I should have asked more questions when my Macmillan nurse called me but as she said this wouldn't affect my surgery I pushed to the back of my mind at the time!! Getting the letter then filled me with dread.

I phoned my respiratory consultants secretary and my consultant phoned me back saying that i was discussed at the MDT meeting and they felt it was advisable to have the biopsy done, my thoracic surgeon was also present.

I had the biopsy on Wednesday and now I am terrified the cancer has spread to my thyroid and my surgery will be cancelled. I won't get the results until next week so will only have a couple of days notice before I am due to go into hospital for my Op.

Sorry for babbling on but I need to get it off my chest and share it with those of you who understand the agony of waiting

Thank you

Cathy

11 Replies

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  • Hi CatherineE, welcome to the site although I'm sorry that you find yourself in the club that nobody wants to be in. Waiting for results can be hard I know, in fact, I'd go as far as to say it's probably the next hardest thing to deal with after the diagnosis. I personally took the route of trying to have the attititude that it was a waste of time worrying myself sick and so driving myself mad in the process. I distracted myself by getting on with normal things, going to work, spending time with family and friends and I did loads of reading - and I mean loads :). Not the googling for information kind, but books with stories that captured my imagination and so gave me a rest from the endless questions going round and round in my head. I also concentrated on keeping myself as fit and as healthy as I could so that I was in the best position for recovery after the operation and for any other treatment I might face. That gave me a sense of 'doing something' to help myself and, in a small way, gave me a feeling of getting back a little of the control of my life that I felt had been lost. When it comes down to it, we all have our own way of dealing with it - I hope you manage to find your way and I wish you the best possible outcome both in the results you're waiting for and for your op and treatment after :) x

  • Hello Jaynair

    Thank you so much for your reply. Yes I am keeping myself busy and trying to distract myself. Like you I am concentrating on keeping myself as fit as possible in preparation for what lies ahead.

    Kind regards

    Cathy

  • It is a difficult time. I felt in a bit of a bubble and as though it wasn't happening to me. Distraction doing things that you enjoy sounds to be a good idea.

    When I think back to when I was diagnosed 2 years 10 months ago, I wish I had asked more questions about treatments. I think I could have asked more questions about the treatments available, their effectiveness and the side effects.

    Wishing you all the best Xx

  • Every day feels like a year when you're given this news . I'm 7 weeks post surgery for adenocarcinoma of the lung. I'm due to start chemo soon. I really hope the thyroid scan is ok. My understanding is that pet scans show up any areas of increased activity so it could just be a benign nodule fingers crossed. I have to say you've got in a heck of a lot quicker for surgery. From diagnosis to surgery up in Yorkshire was about 6 weeks! However 7 weeks post surgery feeling almost back to normal. Keep us posted how you get on and if you want to ask any questions about the surgery please feel free as it's still fresh in my mind

    Jackie

  • Hi Jackie,

    I will definitely be asking you questions about the surgery thank you for offering your support.

    Yes feel quite lucky with timescales, I live in Kent and although the first CT Scan took 4 weeks to get results after that things have moved very quickly.

    Funnily enough we was up in Yorkshire (Harrogate), early May when the irritating cough I had got worse so when we got back I went to see my GP. We had a lovely visit and great weather.

    I will contact you very soon

    Kind regards

    Cathy

  • My initial tumour was thought to be over 7cm but I went on a clinical trial taking afatanib prior to surgery and it shrank so the actual size was 38mm. Unfortunately the drug company have stopped funding this trial now but for me it meant that they had planned an open thoracotomy but managed to so it via the VATS procedure. I'm having chemo as they estimate the initial tumour was over 4cm. I've been very lucky as was only found when I had a scan of my kidneys for another reason so had no chest symptoms at all. Best of luck and get as fit as you can before surgery and up and about as soon after as you can. It makes a big difference to the recovery. Will be thinking of you x

  • I was diagnosed with lung cancer 7 years ago and have had at least 10 pet scans. Each scan showed some activity in my thyroid gland. I had a biopsy after the first scan. During all this time, the cancer has not spread to my thyroid gland and I was told it was quite usual for it to show up on a pet scan. I know you will still worry until you get your results but I hope this helps to make you feel a little better.

    Very best wishes, Lilian x

  • Hello Lilian

    Yes this does make me feel better, but as you say until you get the official results you do worry.

    Thank you so much for sharing this with me

    Kind regards

    Cathy X

  • Hello CatherineE and welcome to the Roy Castle community, I am sorry to hear of your recent diagnosis, as you can see from previous answers other members have been in similar situations and have given you some very good advice sharing their experiences with you. It is only natural at this time to feel anxious and to be worried about your results and future surgery, as the others have mentioned try keep yourself busy, talk and spend time with family and friends and best to avoid google. I am pleased to hear that you have a McMillan nurse already in contact with you and if you have any concerns she will be able to answer them. Please feel free to call us on our helpline number 0333 323 7200, if you would like to talk to someone

    Kind regards Roy Castle Helpline

  • Hello everyone

    My thyroid biopsy results show its a benign nodule thank goodness, so now my lung operation can go ahead.

    I am going into Guys hospital on Sunday and will be having my operation on Monday.

    Thank you everyone for your support

    Cathy x

  • Hi Cathy, hopefully you'll be reading this after you have come through your successful op. Wishing you a safe and speedy recovery :) x