Hi. It’s been two months since cancer entered our world but we still know nothing more - is this normal?
28 Jan
Following a PET scan Mum and our family were called in to be told she had lung cancer with suspected spread to her adrenal glands. PET scan showed a lesion on her right lung with bi lateral adrenal enlargement. The report said recommendation was to biopsy the adrenal glands to see if they followed the same pathology of the lung - we read that as - would confirm if the two were linked. We were told then it was incurable but possibly treatable.
10th Feb
She was discharged to pallative care (for symptoms management) who, through medication, have managed to get her pain and sickness/ nausea under control which has meant she has begun to eat a bit better which we had hoped would get her energy levels up - as sickness, abdominal pain and fatigue were her symptoms.
16th Feb
She underwent a biopsy of her adrenal gland - all went well they said and no post op complications. We were told results would be a week to 10 days and thereafter they would discuss her case at MDT
28th Feb
Nurse rang us after case discussed at MDT. She said did we want results over the phone or in person. She said over the phone. She said the biopsy hadn’t unfortunately given them the results they wanted/needed. She said ideally it shows cancer/not cancer - and then they can determine what type. She said there were abnormal cells present but didn’t tell them anything beyond that and after a detailed discussion it had been decided that the biopsy should be repeated. Mum agreed. Appt awaited
13th March
Nurse rang to say her case had been discussed at MDT meeting again and they had now decided against repeating adrenal biopsy - consultant had said he thought that it was likely she’d go through it again and they wouldn’t learn any more from it. Decided to biopsy lung now instead.
Appt is now 27th for lung biopsy. We are over two months since we were told she had incurable cancer. In the meantime she has deteriorated - we have pushed for help - pallative team are excellent - however it feels like they are happy to allow her to waste away - whilst they have managed to get her pain and sickness under control - we pushed to speak with a dietician, who just said “keep going” - no real advice despite her finding eating so difficult - no real nutritional advice save for encouraging what she already eats as good enough. In the meantime her energy levels are just constantly depleting even though she is trying so hard to eat well and have little walks.
Does this all sound normal? Am I just being a worried, impatient daughter? How will the biopsy to her lung help with the adrenal situation? Will they just assume it’s a metastatis from the lung? We just feel so overwhelmed and I don’t know who we should be asking - I thought we would have met with an oncologist by now - everything’s been done via phone
This isn’t a complaint - every one has been been loved. Just worry the longer we go on the sicker she gets and then if there are any options she’ll be too poorly to be considered. I’m fortunate enough to be in a position to pay private if needed but will this achieve anything?
thanks in advance x
