Hi I'm new here and I'm scared

Hi HappyLittleTrees

Welcome to us. You are in the right place with us. 

I am sorry to read that you are undergoing diagnostic testing. It seems to take forever and of course we all feel overwhelmed by it all at that stage and occasionally we still do. 

You are doing the right thing by not googling and sticking to proper cancer sites. A lot of information posted off the moderated cancer sites is often complete nonsense or very out of date and it isn't helpful to anyone.

It is even harder right now due to the virus and not being able to get through things quicker and as you say the lack of support to people due to some charities unable to open their doors to people.

It is tough spending the majority of the day alone and dealing with this. People quite often do not know what to say and you get varying degrees of reactions. Some sadly disappear, some rally and really support you and some you realise after the initial phase is done with, you realise they wanted to 'be seen to be the good friend' supporting someone, then they seem to get bored and back off. None of these reactions are your fault, please remember that.

I am pleased you have a supportive partner, this will help. I am sorry to read that you have not been able to go to your new job. It kicks everywhere doesn't it. I often use the phrase it sucks.... may I ask (and you do not have to answer at all) as you say you are young. How old are you? I was 'young' to be diagnosed with lung cancer too (34 at the time).

Now, Carcinoids I can talk a little about. They are rare! In fact they say if you hear hoof beats, you instantly think of horses? But really Carcinoids are Zebras. 

Most lung cancers are usually Small Cell Lung Cancer or Non Small Cell Lung Cancer. Carcinoids or what they are referred to now is Neuroendocrine Tumours (NETs) are a tiny percentage of all lung cancers.

They say that NET's are only diagnosed through out the UK at about 4,500 per year! On top of that NETs can occur anywhere in the body, the bowel or pancreas are the most likely places and primary lung cancers aren't common.

I am a primary lung cancer NET. I was originally diagnosed as a Non Small Cell Lung Cancer. After they finally removed the tumour they did further biopsies on it and re diagnosed me as a NET.

If it is a NET, often this is good news (if you can think of it that way). I too had an X-ray that showed nothing. When the pain in my shoulder wasn't getting really extreme and nothing worked I had an MRI with them suspecting a disc problem. It was then they realised what it really was. They looked back at the X-ray and realised it was there all along but it was 'hidden' because the tumour was in a 'busy' part of the lung. Attached to my top ribs, back and around the nerve bundle... so what they say the apex of the lung (the very top of it).

Usually carcinoids are considered good news, as they are regularly slow growing!  They do scales of low grade, Medium grade to High grade. Low grades are the most common by a very long way! High grades are even more rare... so mix, rare on top of rare with more rare thrown in.

They describe them as slow growing cancer so if you are diagnosed and get surgery you may well find you get extremely good results. I hope so.

Please keep talking here, we all understand what you are going through right now as most of us have been there.

Hi Ginajsy thank you for replying to me and welcoming me, even if it's not in the best of circumstances it still appreciated. I'm glad I'm not alone, even if it sometimes feels like it.

I think I have been lucky even with COVID as this is the fastest I've ever been seen and scheduled by any Doctor but definitely so much awful uncertainty still during this stage. I find more comfort in facts and knowledge but I do think that I'll take it as it comes from the 'horse's mouth', I completely agree about Google being outdated and nonsense and who needs more confusion! 

It is so sad to know that but I understand everyone processes and reacts differently as they're all individuals, I guess it is still such a 'taboo' topic even today and most people I know don't have positive stories of any cancers. It is a lot to deal with although, I'm only being tested so far. Thank you for reminding me it's not through any fault of my own, other peoples' reactions are out of my control for sure. 

I think because I attended my consultation and obviously, the appointment times are restricted so everyone can be seen, it's like I was loaded with all this tumor information and just dumped to deal with it, and I don't think anyone can simply just deal with something potentially devastating alone. They say no man is an island and oh boy, do I feel that!

I am 30, even if I don't feel so young some days apparently medical wise I am! I'm sorry to know about your diagnosis and, I thank you for all your information as I really have no idea what I'm possibly dealing with. I guess that can be looked at in a positive way out of all possible diagnoses! Wow, a lot of rarities then, so unusual! 

I think I read on your profile about your chest pain and 'pinched nerve' and I was told similar by a Doctor until the x-ray. I am glad for you that they were able to re-examine your x-ray to confirm so you could receive treatment! Bodies are such bizarre things at times. 

 Can I ask how you are now? What happened in regards to your lung? I know we're both individuals so I'm not looking to compare but to genuinely ask.

Thank you for such hopeful comments, it's lifted my spirits hearing from you and your experiences. Fingers crossed, I also hope so. Again, thank you for your understanding, I feel like I am in the right group. 

Hi there

Welcome. I was diagnosed in early March just as lockdown began. It is hhard not to feel overwhelmed and sometimes I look in the mirror and say 'I have lung cancer' just to solidify it in my brain. I hope , like me, it does get easier with time and you can focus on living life among the scans  and treatments. I Howerver you are right, it does just suck.. big time

Hi Debs0768, 

Thanks for welcoming me, I wish it was under better circumstances. That is helpful to try to get my head around it all, I'm trying affirmations and meditations as I find they work for me and help with my anxiety when it comes in big waves. I'm glad I'm not alone in feeling this and that is a relief to know it gets easier because at the moment I have been feeling all over the place and unable to do things. Thanks for reminding me there is still a life apart from all of this, I think that's important. Take care. 

new here myself and recently diagnosed with advanced lung cancer and while im by no means an expert on these things my advice is to look at things in a glass half full kind of way instead of a half empty way,youve got to be positive easier said than done maybe but hats just me but the most important thing is to deal with it as best as you can in your own way , you have my thought and best wishes

Hello everyone!  I found this forum and have been reading some of the posts - I truly felt I wanted - no, needed to tell my story - well, not exactly my story but, as my name above says, my SISTER's story.  First, I would like to say, this journey you are all on - just starting, right in the middle or ending - IT IS YOUR JOURNEY  -  even with lots of support or little or even no support - YOU will have to hit this "thing" head-on, gather all your strength, stay positive (as hard as it might be - tell yourself - I CAN GET THROUGHT THIS and I WILL GET THROUGH IT - and that is the end of that)!!!  I was with my sister throughout all of it - I tried to give her support, advice, etc. etc. but, she went through it all!!  And let me tell you - it is a journey of ups and downs; crying and laughing; good news and bad news; waiting and waiting some more - you will get through it all - just keep going.  Also, sometimes you will feel like crying - do it - then wipe the tears and REFER to the above LOL

NOW the journey begins - I received a call early in the morning from my brother-in-law - not a good thing.  The words "I think your sister had a stroke - she is on her way to the hospital"  SHOCK!!!  In a most robotic way I got ready and drove to the hospital.  Yes, she had a stroke (bad news) but, she had no effects of this stroke - speech was good, could move everything, etc. etc.   At the hospital they could not figure out why or where this came from - nothing showing up - not finding an answers - oh wait  - a small little "nodule" just found by accident on one of the scans, it was right on the bottom of the scan and located on her left lung - hmmmmm what is this - nothing to worry about, I'm sure.  It was LUNG CANCER.  So many tests, the first one - did it spread - apparently this cancer usually spreads to the BRAIN!!  OK now the brain scan - scared, waiting, anxious, what next, what if!!!!  It DID not spread - good news!   We will take this tumor out and move on - well wait a minute - the tumor is attached to the aorta - CAN'T OPERATE - bad news!  OK, plan B!!!  Oh one thing I did learn - I thought cancer stages were diagnosed by size - not true - sometime it is where it is that classifies what stage - even though small, my sister's was a Stage IV and it had not metastasized.

Moffitt Cancer Center was where she chose to have her chemo and radiation.  As it was further away from where we live, she needed to stay the week and would come home weekends. Her husband and I would take turns going with her and staying with her - the person staying home - took car of the dogs LOL  HOPE LODGE - a wonderful place!  A place where people, like my sister, could stay while having treatments.  We met other patients, heard their stories, laughed and cried but also, we played bingo, groups brought in wonderful dinners, groups would come in and entertain everyone - I was so extremely happy and grateful, I was able to go through this with my sister and meet these wonderful people.  I learned so much - every case is different, every story is unique, and yet, all were fighting a battle and we all supported each other!!!   I would truly recommend talking to groups, online or otherwise, let your feeling out, your thoughts, I feel this does help most people of course, some people just could not talk about it - and that was perfectly fine - everyone has their own way of coping.  OK, so after 4 months, my sister got through her chemo and radiation - actually she did well, only got sick once (personally, I think it was something she ate- just saying LOL)  OK, now more tests - what was happening - it the tumor still there?  Is it gone?  Is it bigger?  Has it spread? Is it smaller?   Wait, wait wait   Tests showed a little reduction, did not spread.  Hmmmmm - ok, we will take that, better than the other scenarios.

IMMUNOTHERAPY - something new, something good - lets try that.  Great    Wait, you need to meet all the requirements needed to have this done - more testing.  YES - one year of immunotherapy - let's go.  That was 6 months ago, my sister went every two weeks and had the immunotherapy infusion.  Three months - tumor shrunk about 30%  YAY YAY YAY    This past week was the 6 month mark - anxious, nervous, what if!!!!  Scans done - let's see what is going on!   I always believed in miracles and I have prayed every day for my sister.  We GOT A MIRACLE - THE TUMOR WAS GONE!!!! Report said COMPLETELY GONE!!  Cry, cry cry - happy tears.  My sister's doctor and lots of other doctors and nurses coming in looking, congratulating her.  They said she was "text book".   Apparently, very simply put - immunotherapy is where it attacks the "outside shell" of the tumor (something apparently your own immune system cannot do)  once it breaks up that "shell" your own system takes over and attacks the tumor - and that is what happened!   Now, I am certainly not a doctor and put my own words and understanding to this procedure - but this is what I heard in layman's terms, of course.  Oh and one more thing - the stroke my sister had - was caused by the tumor - tumors make the blood thicker and thus because of that thickening a clot formed and hit the base of her scull - and  so the journey began!

I know what you are all going through - I have said a pray for each and everyone of you!!!  PLEASE know that even though I do not know you - "I really do"  and I am sending my love and support and will keep you all in my prayers.  May GOD BLESS YOU all!!!!

Hi HLT

Sorry for the delay in responding to you. How are you feeling now? Have you had any further diagnostic tests as yet?

If you scroll down my profile it gives you a brief overview to present day.

I also have a very long thread that gives full information since start to present date. I may update it a little later as I have what could be good news but not specifically cancer related.

To answer you though, all things considered I am doing ok. I know I said most NETs are usually low or medium grade and rarely high grade ones.... well, everybody has a talent in life, mine seems to be growing cancer rapidly. I was a high grade one.... with a very high KI67 (the measure of how quickly your cells reproduce), straight to the top of the class for me.

I have had one hell of a treatment ride that will make some people's toes curl. BUT I am still here over 2 and half years on, still working part time, maybe full time again soon. I have been terrified, I have lay on the operating table thinking I may not wake up from this several times. I had awful side effects from chemotherapy, I have had masses of radiation. I have recurred numerous times and come back feeling wiped out, drained, got up and felt like I have given it all I have, but managed to give it some more!

I have never asked for my prognosis, though I too put my affairs in order immediately. Last year I wanted a policy to pay out too. I said to the insurers and my oncologist, I do not want details, talk to each other and just let me know if it was a yes or a no.... to meet the pay out I had to be 6 - 12 months to live. I met that criteria on 1 July 2019.... and look at the date today! I smashed through that and will hope to continue to do so.