Hello everybody would like to say hi

I had almost exactly same as you trested months with antibiotics 

it’s not cancer blah blah  two letters saying this. After 9 months biopsy revealed same as you but mine was now 16 cms

huge!!

upper right lobectomy june 3023 will be 

on adjuvant therapy osimertinib for three years

doing but have no trust in anything anymore. Scream from the rooftops if you doubt anything and demand answers

im still considering second opinions as my oncologist now says I don’t need further scans♀️♀️

Barbarella ,

Thank you for your reply. Once the trust has gone it’s so hard to get back. I Think you should get a second opinion the scans are essential if only for peace of mind . I do doubt the doctors I’ve seen  up until my diagnosis it seems like they have formed an opinion and will not be sued from it.  Now it’s a different department with surgeons and oncologists. They have moved pretty fast. 9 days ago I was diagnosed and tomorrow I have my first chemo and immunotherapy.  Was told this would be for three sessions over 9 weeks  and then surgery. . I am really anxious as it’s the unknown and I don’t have any control over anything.  I do hope that you manage to get your situation sorted and thank you for taking the time to read my post . X

Hi again I found it quite interesting that you’ve been offered CHEMO before your surgery and I wasn’t in fact until after my surgery he said to me you can have 12 weeks CHEMO or three years on osimertinib . I said can I have both and he laughed at me and yet I have met people who were diagnosed one year earlier and they actually did have both so it seems the protocols and treatment are constantly changing and one does tend to worry that it’s driven by cost rather than Best medicine perhaps ? But that makes me sound very cynical. I try not to be but it’s very difficult getting information. I found the surgical team absolutely excellent and everything went very fast having had such a slow time with my GP. And the chemo Nurses are excellent too. I think we all come to realise in this situation that the rest of our lives are going to be very different now. Your treatment seems to be pretty swift and everyone says these new drugs are marvellous. They discovered a specific mutation after my surgery which meant certain drugs were more effective too. Have they discovered this from your biopsy? 

They said they could offer neoadjuvant Therapy chemo +immunotherpy. Before surgery to destroy cancer cells and shrink the tumor  or just adjuvant  chemo after surgery incase  cells were  left  but it wouldn’t be as effective   This  neoadjuvant  aim is also to prevent returning .  They did give me the option of what I wanted to do .  If the cancer should return after neoadjuvant and surgery .  The chemo offered after surgery would be only to extend life expectancy. As my lungs wouldn’t function with further  surgery. As I  have COPD too Not to cure . They have said that they were waiting on results of mutation.  As this would change what therapy’s are offered. But I guess there was none as they are still going ahead tomorrow. Wish you all the best with every barbarella and here if you need to just have a vent anytime . X 

Thanks good luck 

Hello there, my mum had the exact same treatment plan as you. Three lots of chemo & immunotherapy followed by a lobectomy. She’s just had her first 6month follow up. Side effects from the chemo & immunotherapy were fatigue and diarrhoea for my mum, although I know it can vary from person to person. Side effects from the lobectomy for her are shortness of breath after mild exercise. Otherwise I’m happy to say she’s recovering well. 
Wishing u all the best with your journey xx

Reb A
Thank you  .yes exactly the same . I’ve been so worried . And the side effects sheet they gave me looked horrendous. 
im really pleased that your mum is doing well and on the way to a speedy recovery. Thank you again  your message has really given me hope and a  renewed outlook  on the treatment and  recovery. X