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Thanks Lou, as its stage 4 with metastasis in liver and spine I've been told surgery isn't an option. I've got my first oncology appt. on 29th August so will see what they say. I'll be very interested if anyone on here has the same.

Hi I'm struggling to find anyone who has Adenoid Cystic carcenoma of lung with EGFR mutation as this type of cancer is so rare, so Roy Castle Foundation sent me the link to this site to see if there is anyone here with any info?

Hi Beth, Sorry you need to be here, but glad you found us. Sometimes the diagnostic process for this disease alone can make one crazy. It needs to be exacting, definitive, and accurate. I can tell you know that while CT and PET Scans have a place in diagnosis the definitive diagnosis is made via a biopsy. So shadows, nodules, and other abnormalities could be indicative of cancer the biopsy is the only definitive tool to determine malignancy, and other factors (i.e., genetic markers). Please take a look at "Navigating Your Diagnosis" and you'll see the difference between screening, markers, and definitive diagnosis. You need to get to the biopsy stage for a true diagnosis. Along with that you also want to know what genetic markers may be impacting the findings. Once you have that data settled you will begin to look at what treatments are available to help your Grandmother. So while it may be possible or even probable that it is cancer we don't pull the trigger on anything until it's been diagnosed. I'm not fully familiar with the UK health system but others here are and I'm sure that you'll hear from them soon. In the meantime please keep us updated and ask any other questions you may have. Lou

Hello --- thank you for your feedback and thoughts. I had surgery to remove my left adrenal gland and a partial to my right adrenal gland. Focused radiation was a second alternative to the right adrenal gland; however, one stop shop treatment was the objective. The results of the surgery went well in that both deposits were successfully removed, and I do not have to take any daily steroid supplement. The next step going forward is continued control.

Not yet but I'm working towards it! I've increased my fat intake by 40% up to this point. So far, so good (I have 2 more weeks before I can go all out on fat content! Then Carl's Jr......look out!)