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Carcinoidlung-nets
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Hello everyone I am new to this forum and think I just needed to talk with people going through the same or similar to me. I am 39 mother of 4 and have recently been diagnosed with carcinoid tumour in my upper left lung! ( I had never heard the term carcinoid or NETS before).. suffering from a cough that wouldn't go away   some pain and fatigue I went to the the doctors after it wouldn't clear for 5 weeks , I was sent for x-ray then ct scan and then on the 24th of July they told me it was lung cancer. I have just had the bronchoscopy , gastroscopy and nuclear scans then had a call last week to confirm carcinoid tumour and I am meeting with the surgeon this Friday and hope to be going for surgery in the next couple of weeks to remove this , they have also mentioned chemo after the operation too.... I just feel a little out off my depth at the moment as I really didn't know anything about this type of cancer before and ne8ther has my network of friends or family so feel I can't discuss this properly. Was just wondering if theirs anybody out there going through the same or even been through this and could share their experiences please x

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    Hello and a warm welcome to Cancer Chat!

    I am sorry to hear about your diagnosis but it looks like your medical team is very much on top of everything and that it is all moving very fast which is great. How did the meeting with the surgeon go today? I hope the surgery goes well and that you won't have to wait to long for it. 

    I thought I would share with you the information we have on our page on neuroendocrine tumours. It includes a section on lung NETs that you can find here and you can read more about treatment including surgery here.

    As those are rather rare, it must be rather isolating for you to not be able to discuss this properly with others around you. This is why the forum will help you get in touch with others who have or have had a lung NET before. One of our members which springs to my mind is [@andydorro1]‍ who has extensive experience of NETs and would therefore be a great person for you to connect with. 

    Our nurses are also available on this free number 0808 800 4040 - don't hesitate to give them a call if you have any question about the surgery or anything. Their line is open Monday to Friday from 9am to 5pm. 

    I hope you will get chatting soon to others who can totally relate to what you are going through at the moment having themselves been through a similar experience before. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Offline in reply to Moderator Lucie

    Thankyou for your response Lucie.

     

    The meeting with the surgeon went well. I will be having the operation within the next four weeks. Due to the location  of the tumour ( obstructing the bronchi ) he has two options.. the first being keyhole surgery to remove the tumour surrounding lymph nodes and tissue.. if he doesn't have much room to work from he will have to do a sleeve resection taking some of the bronchi too then reconnecting it.. hoping for option one for quicker recovery and less invasive but the fact they can do surgery is a bonus either way .

    I will be sure to look at the links provided and also to connect with andydorro as I would like to understand it more really and also be able to chat about it with people that understand. 

    Again thankyou for your reply. :) 

  • Offline in reply to Carcinoidlung-nets

    Hello Lucie,

    Good to hear your news and you have options which is great with NETS.

    I will gladly assist you if you need more information?

    After all i have 15 years of experience than God.

    I look forward to hearing from you.

    Keep looking forward and NEVER GIVE UP

    You are doing really well but remember that you are not alone as there are many people out there to help you.

    Firsty, find Proffesor CAPLIN on You Tube he knows a great detail on NETS. He works from the London Royal Free in London.

    He is in charge of a big team and has thousands of clients being care for by him and his team.

    Speak Soon

    Andy :)

     

     

  • Offline in reply to andydorro1

    Thankyou Andy...

    I will be sure to check out the YouTube link  just to understand it all in more depth... my head is still in a bit of a whirl with it all at the minute feels like everything is going 100mph with hospital visits and friends and family coming to see me ect as well as my four children asking me lots of questions, but I suppose it's all a good thing that it's being dealt with at a pretty fast pace.. il be sure to be in touch with the questions I may have once I get chance to pen them all down on paper if you don't mind some time in the week when I get a bit of normality once back at school and college... I will have spare time on my hands as my cancer nurse as advised me not to go back to work untill after the op... I'm a nursery teacher and am due back to work tomorrow after these 6 weeks holidays off ..she is worried that all the germs and bugs the little people carry could potentially put my surgery back if I was to catch anything so taking some leave time to look after myself.

    Again thank you so much for your reply.

    Lyndsey :)

     

     

  • Offline in reply to Carcinoidlung-nets

    I am really pleased for you Lyndsey that you have had options when many people have not had a chance.

    Dont try to learn too fast as this cancer is a nasty,complex piece of work.

    The cancer has no boundaries  its 1/100.000 can effect any age and anywhere in the body.

    The most you will need will be on line The NET PATIENT FOUNDATION CEO Catherine Bouvier who helped me many years ago.

    Your Nurse is right keep away totally from any form of germs as your immune system maybe low?

    I dont know who is taking care of you but if required try and get a NET DOCTOR or be referred to one. 

    Please let me know how you are doing and i am pleased i helped you :)

    Take Care Andy :)

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