Newly diagnosed 43 y/o T4N0M?

I also felt well when diagnosed and only symptom to reveal my LC was coughing up blood - but in large quantities. I went through a similar diagnostic route, the last of which was the brain MRI before surgery to remove my right lung. I had chemo after surgery due to slightly different circumstances.

Fingers crossed your MRI will be clear and you will be able to have surgery, this is the best chance for a long term cure, my surgery was just over 11 years ago and I've not had lung problems since.

I wish you all the best for remaining tests and a successful outcome.

Derek.

Hi Derek

Thanks for your reply  they seem to think I’ll have to have chemo first, presumably due to its size.

I plan to call nurse this morning to ask why I haven’t been offered the liquid biopsy via a blood test sounds much less invasive - though maybe not eligible if they think it hasn’t spread perhaps it’s only successful in cases of metases.

absolutely amazing to hear your story, when I first had the news my first thought was I won’t be here next year. 11 years clear is amazing and I aspire to be where you are in future. I’ve seen my Dad and aunt lose battles to LC both diagnosed at stage 4 and inoperable and this probably didn’t help my emotions when I heard I had it too.

How are things with one lung? Do you notice now or does it feel normal? How long post surgery would you say it took to be ‘back to normal’ if there is such a thing? And lastly, how often do they check you over now?

So sorry to hear about your new diagnosis of T4N0M?.  All the more terrifying for you having two children, and you are way too young for this!  It's good to hear though that as you've had more and more tests you're finding a little hope. Your first reactions sounds so similar to mine, and I remember what a terrible time it was. I was diagnosed in Feb 2017 as a result of a cough and a small drop of blood, the paramedic at my surgery said no problem, but 3 weeks later I went back and a locum GP sent me for an Xray which showed a 7 cm mass.  I was so convinced I would die within just a few months that I cleared out all my old papers and letters and tidied up my affairs so my poor husband wouldn't have to. I decided very early on that even though I couldn't to control what happened with my lung cancer, I could decide how to respond, and I consciously chose to face everything square on, and go with it (ie not "fight") and literally treat each day as a gift.  That said, as I went through the CT scans, the PET scan, the lung function tests, the bronchoscopy (also failed), the CT guided biopsy and then the pulmonologist and finally the oncologist, each new development brought more hope because I came to understand that this was treatable (more days, more gifts....)   I was staged at IIB, amended a year later to IIIA. If you're near Brighton you must be fairly near me - I received treatment, chemo and check-ups and immunotherapy at Worthing, benefited from the expertise of a multidisciplinary team, had surgery at Guy's in London and went for radiotherapy to Brighton.  The nursing staff and doctors were all absolutely amazing. You will receive all sorts of questionable "advice" and stories from friends, but one of my MacMillan nurses said not to limit sugar, or go on any special diet, told me to enjoy my wine sundowners, if I wanted them, and was generally sensible - and informed. She did suggest exercise, which I find hard, because I get breathless.  But now, eight and a half years later, here I am.  I was discharged from further surveillance a year ago since there had been no evidence of recurrence for 5 years.  I really wish you well, and I hope you can keep in touch with us in the next few months as you go through all the tests, all the new treatments and drugs we have available now to give us more days and more time with our special people, and for you, your children.     

Hi KittyCrayon7ce900  welcome to the group, but sorry you find yourself here. It’s a scary situation to be in, and I know you are comparing yourself to the journey’s of your loved ones, but their story is not yours! One thing to know is that lung cancer treatment has come on leaps and bounds in recent years. In the 8 or 9 years since I have been on the forum I have seen many new treatments being used, including immunotherapy and targeted treatments. These really are the wonder drugs for lung cancer with so many people now living much longer lives than ever before with the disease. 

Waiting for tests and results really is very hard, they seem to take so long, and time seems to drag. Disturbed sleep and loss of appetite is very normal, you can speak to your GP about the lack of sleep. 

We are all here for you to support you through this difficult time, but you can also call the support line on 0808 808 00 00 anytime from 8am until 8pm. 

We must be local to each other, most of my appts have been at Worthing which is our closest hospital!

️ your story and hope to walk a path like it

Spent this morning trying to get through to someone in Brighton to book EBUS unsuccessfully - I’m hard to cannulate and this seems to lead to delaying them calling me with appointments. Will try again later

Totally with you on enjoy every day 

KittyCrayon7ce900, well, well, coincidence.  I can really recommend the folks at Worthing and if we're close, I'm very happy to  talk on the phone too, if you ever need another listening ear.  I do hope that you manage to book the EBUS - do keep trying - and keep us posted!  

It soon feels normal breathing with one lung, although you get out of breath easier with strenuous activity because of the reduced capacity. You soon get used to it and exercising is important to maintain capacity. It's also important to get the right exercise after surgery to recover properly from surgery and you should be advised on what to do before you go home. 

I soon got used to the new normal and hardly notice it now.

I was under surveillance for just 2 years before being discharged with the instruction to get in touch if I have further problems but this has not been necesssary.

Thanks both

EBUS booked for Wednesday, seem to be conflicting views on whether I need it with PET scan showing no abnormalities to lymph nodes but  someone knows what they are doing

Lovely to hear reassuring stories, thank you

Excellent news that your PET scan shows no problem with the lymph nodes.  But yes, trust your team!! 

I refused the CT led biopsy today, the doctor himself felt I was higher risk due to location of it and said same risk of bleeding as via bronchoscopy biopsy which the doctor stopped last Monday.

doc today said he didn’t think he’d take the risks if he was in my shoes but obviously we didn’t know the below at this point. 

MDT this PM - agreed no treatment whatsoever unless I go through with CT biopsy next Monday

feel stuck in an awful game of Russian roulette but unknown I have to pull the trigger or will definitely have an awful ending