Newly Diagnosed

[BLUEWKD]

Hi everyone,new to all this and I really don't know what to say?-I am 59 and 2 days ago I was diagnosed with nsc adenocarcanoma. Its a Pancoast tumour at the top of my left lung. Biopsies have shown it isn't in the lymph nodes and hasn't yet spread anywhere else so should have been operable. Just been told that the tumour is sitting in a difficult area so unable to operate and now I am worried sick about the types of treatments that I may have and the prognosis!-next appointment is Wednesday 1st August but the uncertainty is driving me crazy!-any words of advice would be much appreciated x

[janeg4]

Hi Bluewkd you are so very welcome here , sorry about your diagnosis it takes time to get used to your new situation so be kind to you and try not to panic ...

I know easier said than done .

You might want to ask for a second opinion on surgery as there may very well be a suegeon who will operate . Lots of treatment options now adays and on your journey you will hopefully become aware of them.

I urge you to research a bit about your particular condition n stage etc as treatment is dependant on that . Be your own advocate its a shit illness but people do survive it , im in my 6th year now and doing well , lots of people live a long time with lung cancer and enjoy a full n happy life despite the odds .

I wish you well on your journey visit us here ask questions we will try to help , always have hope n take care of yourself ..

Best wishes

Jane

[CaroleH1949]

My husband was diagnosed in January 2017 and originally was told they could operate but as it was in the plural fluid they couldn’t . He has been on Afatanib since and is doing well. The side effects are different for everyone but can be overcome x scan results this week say it is now ‘dormant’ when you get the diagnoses you think it is the end of your world but it’s amazing what can be done. Stay positive x

[JanetteR57]

Hi Bluewkd, welcome to this club that people didn't want to be a member of but most are glad they found it. it's a scary time but important that you try and calm the panicky thoughts into some sort of order or questions to ask the clinicians treating you. For them, it's everyday stuff but for you, it's lifechanging - at least at this stage of uncertainty. There are many treatments and improved treatment options so although it's important to research your subject yourself, there is so much stuff on the internet, much of it outdated, I'd suggest you go to trusted sources such as all the information on Roy Castle Lung Cancer foundation, CRUK or Macmillan whose information has all been checked and verified by clinicians. Lung cancer is now treated much more precisely dependent on the mutations within each tumour so what may work for one patient's situation may be completely wrong for yours. Hopefully you will be given access to a lung specialist nurse who will usually have time to listen but there are also helplines like that run by Roy Castle, staffed by clinicians who can help. Try and distract yourself if you can - otherwise it can be too easy to be all consumed by your diagnosis/condition and not live the life you have. watch an escapist film, read a book, have friends visit (but try to keep off the subject of your illness) - have a nice meal. I know it's easier said than done but 7+years on, believe me it can get easier from worrying about how you're going to get through the next 5 minutes or half an hour to planning events in the future. good luck.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Bluewkd

Welcome to the forum, where you will find support and encouragement, as detailed in the excellent responses from JanetteR57 and CaroleH1949.

I have placed a link below from cancer research UK providing information on the Pancoast tumour:

cancerresearchuk.org/about-...

If surgery is not an option, reducing the tumour size by radiotherapy may be the treatment choice and it is encouraging to read that there has been no spread.

As suggested in your responses, try and fill your time up with helpful distractions and be around those that will support you best.

If you wish to discuss anything, you can call us on our free nurse led helpline number on 0800 358 7200

Wishing you all the very best

The Roy Castle Support Team

[Lovey1000]

They will shrink it so there will be no trace of a tumor, lots and lots of treatments offered and thank god it did not spread!!! You are not stage 4 you just have to find strength and fight for your life, I did it and I was a stage 3