Hi Maxine,
Some notes about Plasmacytoma in the sinus cavity as promised.
Firstly, I was saved because my tumour was a solitary and before starting treatment the NHS spent 3-4 weeks scanning elsewhere.
"Specialists said that would kill the Tumour or at least shrink it"
I was treated with 6 weeks of chemotherapy (aka Thalidomide) to sucessfully shrink the tumour before 5 weeks of radiography. After 11 weeks of treatment they removed what was left, plus a "safety apron" around it, with surgery. Why did they not do chemotherapy for your son? Suggest thst you ask for a referral to an oncologist.
"They are taking blood tests every 3 months"
They do that for everyone including the healthy and after 2 years they now test every 6 months. The haematologist looks at the paraprotein profile and decides to alert the other specialists, or not. As they know what they are looking for 2nd time around it can be diagnosed early. IF it comes back there are apparently some known redial drugs.
"He sees a professor to have the camera down his nose to check that area and his throat."
Inspection is an effective tool and we are lucky that our tumours are accessible from the outside without surgery. My own tumour has been removed and they check that the scars are still healing. I still use a sinus rinse kit (Boots, £10) twice a day religiously to keep it all clean. Use plain cooking salt at 50p/Kg not their individual sachets at 9p each.
"He's not been told that he's terminal but he hasn't been told he's in remission."
They cannot tell any patient they are 100% fixed because they cannot guarantee success.
"If his tumour is cancerous still or stable have you any ideas on why a growth is still there but not changing in appearance."
I'm not a medical professional and thus not qualified to comment it but sounds to me that "cancerous & growing" is the bad news condition and "stable and unchanging" is the other. I know which one I'd rather pick and, as I could get run over by a bus tomorrow just like everybody else, I try not to worry about it.
I suggest that you ask the professor why no chemotherapy and try to stop worrying – no news is good news.
Kind Regards,
– Andrew
Andrew Walker
