Hi all my name is James and I'm 29 in February 2016 I was admitted to hospital and got discharged with pneumonia at the time I didn't realise they was ment to get me back in for ct scan and basically follow me up again so I thought nothing of it at the time the antibiotics Id taken made me feel better and the sharp pain when I breathed in cleared but really looking back on and off since Feb 2016 I've had a cough that disappeared for a few days if I'm lucky short of breath pain in my chest and my shoulder and banging headaches so recently went back to doctors who sent me for xray and that showed a lung bullae so they referred me to hospital for a ct scan and see the specialist consultant and that's all I thought I was going for well the ct scan revealed the lung bullae which there not concerned about but it also revealed my right lung as something there about 8cm also my chest lymph nodes in my chest are swollen which then they told Me 99.9 percent I have cancer so tomorrow I will be having pet scan then on Thursday biopsy then the following Tuesday follow up appointment I am so scared my youngest child is only 8months also have 23 month old along with a 6 year old I'm not ready to leave them yet does anyone think that they still could be wrong with saying 99.9 percent could my lymph nodes in my chest be swollen for another reason apart from the pain I get in my chest and shoulder and the shortness of breath along with the coughs and headaches I feel pretty fit. I've felt so low and empty with barely a word to say to my wife except you think I'm going to die, if it was well advanced would I be very poorly I just don't know, is there a good chance of beating this my brother as bought Me all organic stuff to make smoothies special teas organic full fruit juice saying these are ment to help I've tried to explain as much as I can and make people understand what I'm going through and what doctors have told me so just wondered if anyone else as any answer or anything to say on this thankyou
Been told by the doctors from a recen... - The Roy Castle Lu...
Been told by the doctors from a recent ct scan that 99.9 percent i have cancer in my right lung and the lymph nodes in my chest are swollen
Hello Jame. Until a biopsy has been done you won't know for sure what is really going off. My dad had the same thing, a tumour in the lung a swollen lymph nodes in the chest. Yes the lymph nodes where cancer BUT we where told they can also swell due to infection! My dad had 3 months of chemo then surgery to remove his left lung, this was 2 years ago an he's doing good!
It's really hard at the beginning an until you get answers or a plan set in place nothing seems real!
Where are you being treated??
Please keep me updated.
Best wishes, Millisa
I'm glad your dad is doing good I've Been hoping there wrong and my chest lymph nodes are swollen for some other reason like infection I'm off for my pet scan today it's scary incase they find a lot more than I want them to I will be getting treated at royal derby hospital thanks for your time in replying.
Hello walshy
Oh you sound like your having a tuff time, its the waiting part that is the hardest isnt it ? Im no Dr but untill they gather all the info they cant plan your treatment.
Yes you could have swollen lymph nodes if you have an infection or something , the pet scan will reveal that!!
There is lots if treatments available now for your type of lung cancer and some a cure. I know its easier said than done but try not to worry. Have u been allocated a nurse ? Could u not ring her ?
Yes it is hard waiting but also it's hard to get the results incase there really bad I'm off for a pet scan today I have been allocated a nurse but she just said said we need all the results before she can give me more answers I just want them to be wrong but my wife said with them saying 99.9 percent it's cancer then it's going to be cancer as they would not really be allowed to tell you that much percentage and turn your life upside down. Thanks for the reply
The waiting is hard i know !!
You will feel better once you have the plan in place of what they can do. Lots of people have surgery to remove the cancer and become cancer free.
Lots of love 💓
Hi James - yes, the waiting is the hardest, because until you have all the facts, you can't prepare for anything. I am in a similar position to you - diagnosed with suspected lung cancer in the right lung at the beginning of February. Having had scans, biopsies etc, was confirmed that it was cancer. But - and this is the important bit - the scans also showed that - hopefully - mine hasn't actually spread anywhere else. Accept that after all the scans etc it MAY not be very good news, but don't despair and assume that it will be the worst. Try to stay upbeat and positive - hard I know, but .... So - I am due to start chemotherapy soon, then possibly surgery. I have been told that a really positive attitude is a good thing - and hang on to the fact that a diagnosis of lung cancer is NOT the automatic death sentence it once was; I've been amazed to find out how many people have had a similar, and much worse diagnosis than me and are still alive and well many years later! For example I've just met a 71 year old man who was diagnosed inoperable 6 years ago, still going strong! And he reckons fitter now than he's ever been. I'm a lot older than you - 64 - but my only child, my son, is only 24 and I'm not ready to leave him on his own yet! And you are not ready to leave your young family either - you have many positives to hang on to - you are young, fit, and with lots to fight for! Good luck, try to stay positive, and - difficult this last one! - try not to get too stressed - that really doesn't help. x
Thankyou for taking your time to reply to my message hope everything goes well for you I went in to total meltdown for a week only just been able to talk about it I'm trying to stay positive for kids sake more than anything else I am an hands on dad I know my kids idiolise me so I just worry for them and of course myself because I am scared of dying especially at only 29 and saying about that 71 year old I've read miracle stories like that and that gives me hope but you just wonder if you will be a miracle story or the unlucky one I just hope mine ain't spread one more thing that scares me all of my mum's side literally have been taken by cancer or had it I hope everything goes well for you to thanks once again. X
Walshy going into meltdown is a totally understandable reaction!! As is panic, disbelief, and depression! All quite normal - the brain almost goes into overload. I've been through all of them - and still get a few moments now. As for miracle stories - well, the way I look at it is that even ten years ago, they would have been miracles with cancer, but treatments have improved so dramatically over the last few years, they seem to be more the norm, so even if it's quite bad news, it's NOT an automatic death sentence - hang on to that thought! And new advances are being made literally every month. There is a lady living near me who was diagnosed inoperable three years ago, but with treatment she is still alive and living her life to the full - she's not dead yet. I understand your fears also because of the history of cancer in your family - if it's any comfort to you there is a history on both sides of my family of cancer deaths going back at least two generations, not to mention cousins as well - doesn't mean you are going to kick the bucket!! Good luck on the tests - try, try, try not to get too stressed - try some deep breathing when the panic hits - it helps me anyway!! Sending hugs x
Hi James
This part is always the scariest while waiting for answers
Like others have said the pet scan and biopsy will give the correct diagnosis
If and. I say if it is cancer and it may not be there are many different treatments now available I was diagnosed last September and like you went in to panic mode but have just finished my first cycle of chemo and has shown really good shrinkage and feel really well at the moment
I know it's easier said than done but try and take one day at time doing things you enjoy and stay positive
Let us know how you get on
I'm glad to hear that you have had good shrinkage and feeling well sounds like you might just beat this fingers crossed for you as that sounds positive I just hope i can get some positive news to hold on to and fight and see my little kiddies grow up I will let you know if I don't go into total meltdown again and i can't bring myself to talk about it when they give me the rest of the information but the support from people like you on this site as been overwhelming and as given me that little extra strength atm to carry on until I get my full results.
Gosh James, you have a lot on your plate right now and just wanted to say, you are not alone!
I think it's fair to say that it's the time in between any not knowing what's going on and what could happen next that seem to magnify the feeling of fear and being alone and it's totally understandable. Our brains just go into over drive!
Good luck with your scan, one step at a time and I send you all best wishes
Tizz
Thankyou very much for your time and support to reply to my message even the support from my family is great but sometimes I feel like my family wife mum dad etc just tell me what I want to hear because obviously they have to stay positive as it is a difficult time for them aswel my children are to young to understand whats going on so there none of the wiser I will try stay strong and positive myself for them aswel as myself
I hope that you do not get a cancer diagnosis but if you do make sure that they test you for mutations. The ALK, EGFR and ROS1 as these have all been discovered in recent years. There maybe others too. There are targeted treatments available for these and new developments taking place all of the time. Thinking of you this week. It's a difficult time. Please let us know how you get on Xx
Thankyou for your time and support pet scan out of the way today biopsy on Thursday then back in clinic next Tuesday so fingers crossed it's not to bad and I'll let you know how I get on if I can bare to talk about it if I don't go into total meltdown again if it's total disaster news xx
Hi Walshy,
Thank you for contacting the Roy Castle community. As you can see from all the posts you are not alone and everyone sends their best wishes to you and your family
You will have had your PET scan by now and when your PET scan and biopsy results are available they will be discussed at a multidisciplinary team meeting and the medical staff at the clinic will discuss what treatment options are available to you. You will be given time to make an informed choice on how your care will be managed. This is the worst time just now waiting for your results. Not all people who have been given a cancer diagnosis feel poorly. However, you are still waiting for a definite diagnosis from the specialists and at the moment and you are in an emotional roller coaster and the thoughts you are experiencing are quite understandable. Your attitudes, emotions, and moods can change from day to day, and even from hour to hour. The fact that you are feeling pretty fit just now is a good thing. If you feel you would like to talk to someone don’t hesitate to call the Nurse Led Helpline Freephone 800 358 7200.
Kind regards
,
All the team at the Roy Castle Helpline
Hi walshy, I was in exactly the same situation as you two months ago so my experience is quite fresh. I met with the consultant after all the tests were complete having convinced myself that I would not see my next birthday. She told me I had two spots on my lung, one on my adrenal gland, one on my stomach, and it was in the lymph glands in my chest. I remember thinking this confirms what I was thinking, then she told me the cancer cell was an egfr mutation positive and it could be treated with a targeted drug called tarceva. You can imagine my relief when she started to talk about looking to change it to another drug in two years time but in the meantime go and live a normal life, go on holiday, etc. I hope and pray you have a similar outcome but if I can offer two pieces of advice firstly, stay away from the Internet, I didn't and convinced myself I wouldn't last 24 hours and secondly, only deal in facts, what you do know and not what you think you might know, it just drives you nuts! Good luck and my thoughts are with you. Iris
Thankyou very much for your reply it's much appreciated just got back from pet scan now biopsy on Thursday then Tuesday will have my follow up I'm trying so hard to stay strong for my little kiddies and I believe that tarceva is a good drug but not available in uk only in Scotland and good look to you to I could handle some news like you got I know it's still not great but you must feel blessed atm going from thinking your life was over to that news good luck and take care
James
Thinking positive thoughts for you and your family James. Regards Iris.
Hi Granscotland,
I really feel for you and your family. My daughter is 16 and I am going nowhere yet. Like Bow19, I tested positive for mutations and was put an targeted therapy. I found after 18 months it had stopped working but today they have told me I am suitable for second line targeted treatment Great news and my oncologist said I am going nowhere for years to come. Do not despair, fabulous new treatments are coming through all the time. Do not google as information and statistics are outdated. Stick to this site and the Macmillan website. Inspire is also helpful but is American so some info does not work for us. I hope you are proven to be clear, but if noy, don't despair, there are fab treatments out there.
Alison xxx
Hi James don' normally post but reading your story I felt I needed too. A shadow was found on my right lung by chance when my twins were 3 months old. Various scans, (including inconclusive PET), different doctors told probably nothing to worry about (too young & non smoker) -fast forward a year &it had started to grow. I'm 1 of lucky ones as 2 lots of surgery later it was caught early & my boys are 4 now. Its so hard for everyone diagnosed but whole different set of challenges when you've got little ones depending on you but you will find your own way through it. I felt so isolated & lonely at times as thankfully you don't tend to hear about many people with cancer & having young families but there are some of us! Your family &friends will be putting a brave face on it & want to stay strong for you. I found that really hard at times & it was almost as though they weren't acknowledging it - its taken my partner 2 years to really admit how scared he felt at the time but wanted to be strong for us both & keep the family going. Whatever the future holds find someone that you can really talk to (mine was close friend who was diagnosed with breast cancer few months later & the psychologist at my local cancer centre). Also take a notepad with you on early appointments as there is always too much info to take in.
Take care & hoping that the next week holds some good news
Jo
Hi James, My thoughts and prayers are with you and your family. Stay strong and positive, you will get through this.. Iris.
Thankyou for your kind words 2 hours away from having my full results I feel sick I'm so scared
Hello James, wondering how you got on? Been thinking of you xx
T3 N2 M0 and it's non small cell sqaunous if that's how you pronounce that last word so it's just in my lung into my chest lymph nodes they woudnt normally operate they said because of chest lymph nodes involvement but as I'm young they want to operate he said it's very rare and I will be his youngest person he performed this surgery on so at the end of April so very shortly they want to take my whole right lung away aswel as my nodes but my left lung that is left as got a cyst 8cm and it if pops at any time it would make that lung collapse so you know the lung I'm left with ain't that great so there's even more risks so i could die anyway either way he told me the first 2 weeks after are vital 15 percent of people die 2 weeks later without problems with the other lung over the next week or so going to put me through my paces and loads of tests including breath tests and so on to see if I will even make it off the operating table thanks for thinking about me xx
Well let me tell you about my dad! He was diagnosed in June 2015 with t1n2m0 squamous cell!! He had 3 months of chemo and had a marvellous response so they went for surgery, he's nearly 2 years out an doing just fine 😊 if you have any questions I'll be happy to help.
Wishing you the best of luck James xx
I know, it isa frightening time but remember advances in treatment have come a long way over the past 5 years. Thoughts are with you. Stay strong. Iris
Hi how are things? Have you had any results yet? Keep positive x
I got diagnosed T3 N2 M0 and it's non small cell squamous if that's how you pronounce that last word so it's just in my lung into my chest lymph nodes they woudnt normally operate they said because of chest lymph nodes involvement but as I'm young they want to operate he said it's very rare and I will be his youngest person he performed this surgery on so at the on April 26 so very shortly they want to take my whole right lung away aswel as my nodes but my left lung that is left as got a cyst 8cm and it if pops at any time it would make that lung collapse so you know the lung I'm left with ain't that great so there's even more risks so i could die anyway either way he told me the first 2 weeks after are vital 15 percent of people die 2 weeks later without problems with the other lung over the next week or so going to put me through my paces and loads of tests including breath tests and so on to see if I will even make it off the operating table i supose in a way ive got a better outcome than some still ain't great but maybe there a little light at the end of the tunnel If I make it through this it just means I won't be able to run around with my kids but I will see them grow it's the hospital fault for misdiagnosed me a year ago and knowing I had a abnormallity and not following me up like they were supposed to which it states on my medical records so they already starting an internal investigation because a year ago it would of only been the bottom lobe of my lung cut away and I probly would of been cancer free now and a lot more healthier as If I make it through this I probly wont be able to work again or run around with my kids as they knew about my other lung aswel and never sorted that but I've got more of a chance now seeing them grow up thanks for asking about me xx
Walshy have you had your surgery? Glad they're taking action
Yea full lung removed in hospital as we speak now still hopefully the cancers as all gone they cut all my lymph nodes out aswel
Hope your doing ok!
I'm a member of Inspire, found it really helpful throughout all of this with my dad. You can post updates an it's great to talk with people going through the same thing!
Take a look at it!
Wishing you a speedy recovery xx
Hi James, I've been thinking of you and glad you came through the op ok. I too have been on the inspire website and millisa is right it does what it says, it inspires and takes away the feeling of loneliness. It is an American website but others worldwide are on it. Take care James and I hope you are not in too much discomfort. Stay strong, you can beat this. Iris
Looking for hope?🤗
Great news
Update on lung nodules
