Oncologist

Hi 

Thanks so much for the update, sorry to read that surgery is not an option but glad that a treatment plan is in place for you. As you say, it is likely to be tough going, but with your positive thoughts and actions, I hope that you will be able to cope with all the treatment well.

Please, if you feel you can, let us know how you get on.

I look forward to hearing from you and wish you every success on this journey.

Sending positivity and strength

Lowe'

Thankyou 

Hi Mandy,

I will send you my experience on Saturday. It's good news so don't panic, I'm working tonight so I can't give any detailed info or I'll be late.

Best wishes,

Graeme.

Hello Mandy,

So sorry for the delay.

Ok, my mother of 82 had the same diagnosis as you, a tumour so high that it couldn't be operated upon. Now, my mother was given 4 options, but because of her age they thought it best not to use chemo, instead opting to use Radical Radiotherapy. This is the highest dose & it's aimed directly at the centre of the tumour. She had a mask made so the radiation couldn't penetrate anywhere else. Just the tumour.

So with that said, mum had 20 sessions of Radical Radiotherapy ending on Xmas eve. No incisions, no invasive surgery. But the potency of the RR required mum to have a PEG Tube feeding bag. Because RR can cause strictures that won't allow swallowing. This was the only invasive technique needed. And over time (2 to 3 weeks), the minor pain of fitting this feed tube disappeared. And you must remember, it's only needed when it's or if it's difficult to swallow. My mum used it for just over a month, liquid foods (Ensure) & crushed medications in water. Then she started to take food & drinks orally. There were odd days when the tube was needed, but not many.

After 3 months, mum had an endoscopy with cell biopsies to analyse. And the tumour was completely gone with no malignant cells.

This part may be difficult for you to read, but persevere.

They initially also found small benign nodes on top of the lungs. And they didn't think they pose a problem. Again, just a case of keeping an eye on them. But I was with mum for all hospital visits & talks. And I did not see anything to say they were monitoring these nodes. But you don't think to question it, after all they are the experts.

So after that all clear endoscopy, they needed to do a CT scan to see how the nodes were. And they found these nodes had & are still growing, indicating lung cancer.

So if you & any support you have push them constantly to keep a very regular eye on these nodes, they can catch them before they spread. This I will say is absolutely essential, just get a liaison from endoscopy to give you updates constantly. Someone who is supporting your case.

And if you haven't started the chemo/radiotherapy already, ask about Radical radiotherapy because it's a lot less extreme than the program they want to do. 20 x 20 minute pain free treatments over 4 weeks. You will feel ill after the treatments are finished, but you will get the meds to help with this. And make sure you ask them, things aren't always relayed between departments. 

But this RR worked, unfortunately they didn't check these nodes regularly which if they had would mean my mum would be clear.

Finally, a great help is to contact your local hospice, they are absolutely brilliant & they are always there for you personally. You get all the help you'll ever need from the hospice nurses, anytime you need it. Please get your GP to make a referral for you asap.

And take the positives from this, my mum was cured of the high up Eosophagul cancer. 

I wish you all the best with this & you have to decide what treatment you feel comfortable with. RR is the lesser of the 2 evils when compared to your proposed treatment.  

PS: Radical means curative, because it's very intense.

Best wishes Mandy,

Graeme.