Hi I’ve just been told I have a inoperable tumour in my right lung and am still waiting for the next step, feels like forever

Hi PB.  
I’m so sorry that you were given so little support at your diagnosis. It seems every area differs in its approach to giving such a scary  diagnosis, my husband was “lucky” I was able to accompany him and we had two lung cancer specialist nurses in the room, the consultant was very honest and gave him lots of advice and explained exactly what would happen next (read my profile for details). His lung cancer is also inoperable and has spread locally but he has been on chemotherapy and immunotherapy for 10 months now with reasonable results in that the cancer has not spread further and he is “stable”.

I hope you will feel able to ask for more information as soon as possible and there is lots of support on this community. There is usually a set order of tests etc  that the doctors follow and the wait for results and a treatment plan is sometimes really hard. If you have a biopsy there will be a wait of a few weeks whilst all the tests are done to determine which treatment is the best for you. My husband said the EBUS biopsy was not uncomfortable and the staff were very caring and reassuring, there are different ways of carrying out a biopsy so you may have a different type. From diagnosis to his first treatment was about 8 weeks and it was so hard waiting to know if/what treatment he could have to try to slow the cancer.

It’s so hard to be told it is incurable but there are lots of treatments now to enable you to “live with cancer”.

I have found this community so helpful and everyone here understands the fears and hopes we experience.

Grasan

Hiya sorry to hear that you have had no support. It's a very distressing time for you and family.. I've got inoperable tumer with nodules round my lung but been put on target chemo which is a tablet which I have to take every day. My tumer reduced in size after only months. So there is hope out there don't be frighten to ask questions. Good luck for the future. Rob

Thanks Rob that fills me with hope, I have just had me EBUS biopsy and the surgeon put my mind at rest a little apparently the tumer is 53mm now just waiting again for the results. Hope you well and all the best for the future.

Thanks Grasan the more I speak to people the mor positive we feel that there is hope, Had the EBUS today which was ok except the gagging and all the saliva in my mouth that the suction couldn't seem to keep up with, 

Now fingers crossed a positive treatment plan 

Well done!!! Being positive is the best way to cope with this unwanted journey. When Barry was told his cancer was incurable it felt like the end of the world but now 10 months later he’s still here, still driving me mad and still being positive. His treatment has shrunk some of the tumours by up to 40% and we have been able to start getting away for some nice breaks (not too far from home just in case) it just takes more planning to organise around treatment etc.

My “mantra” is    “Every journey begins with a single step and every day is the start of a journey so keep taking that single step!!”

Grassn

Hi P B

My husband went through the same process about 2 months ago, he has lung cancer that has metastasized to his brain, he's currently on Immunotherapy after a brain operation and radiotherapy for his brain - we have been told that it's not curable but might be manageable after we've been through all this so fingers crossed for us too.  Staying positive is SO important, this is my first time on this site, I'm still very new but already having read some of the comments and responses has made me feel a bit more able to cope with our situation....  Stay strong and it always helps to know you're not alone:-)

Take care

XXXX

HI Grasan - love your Mantra - keep taking that single step and one day at a time:-)

XXXX

Sorry to hear you’re going through this P B. We have had a similar recent experience with my dad. He was diagnosed in February with stage 3 NSCLC in his right lung. He has no classic symptoms of lung cancer and has been told his lung function is really good. His presentation has been in his legs, he has very limited movement and is in extreme pain in his knees with really badly swollen ankles. The doctors think this is paraneoplastic syndrome and is being caused by the tumour itself. Like you he was seeing medical professionals but no one diagnosed lung cancer until an X-ray was done at the end of January. 

Our journey has been a rollercoaster to say the least. Here are the highlights…

January - X-ray showing large mass in right lung 

February -

CT scan, lung cancer diagnosed 

pet scan, cancer shown to be in 2 places in right lung, large mass in the lower part of the lung and in the lymph nodes at the hilum 

surgery recommended to give him a lobectomy 

good chance of cure 

March - 

CT scan and visit to thoracic surgeon, dietician and nurses 

biopsy 

visit to surgeon - surgery not possible, too much lung would need to be removed meaning he wouldn’t survive the op 

April - 

lung consultant and surgeon hand over care to oncologist 

oncologist states he is too unwell for chemo due to his mobility issues therefore radiotherapy is the only option 

planning scan done 

next day…phone call to say, field too large so radiotherapy not an option as dose needed would be lethal (Friday) 

let’s just say our world collapsed that day 

Monday…meet oncologist and agree to do 1 cycle of chemo with Carboplatin only. This was done 2 days ago and he was feeling great until last night when he started to feel a bit ruff and tired but manageable. 

he is back in May for another chemo session, blood test permitting and this time he’ll get 2 drugs, Carboplatin and permexted (I think) 

after 3 weeks he’ll have another scan and if no signs of new disease he’ll have another 2 cycles of both drugs (6 weeks) 

after this he’ll be considered again for radiotherapy

the days seem long when you’re waiting for news but when things start to move, they move quick! I hope they get a treatment plan for you as soon as possible. Stay strong  

Hi Thanks for sharing that with me, I hade my EBUS (biopsy) on Tuesday and have a meeting next Monday so will hopefully get a treatment plan then, I am trying to stay positive as best I can, I am only 46 and pretty active and fit so I am very hopeful. 

Hiya being active and fit will go a long way in helping you with this horrible decease. I had operation to remove tumer on my lung but was not successful cancer to far advanced. I started my treatment as soon as got over my operation and I was back playing walking football within 8 week. Your only 46 I'm 68 if I can do it you can. Good luck for the future