Hi,
My dad got diagnosed recently and so far the information had been really poor so we have no clue where we stand. He got a letter the other day with the above written and that they had a MDT and they won't do radiotherapy and will review in 3 months. Obviously this means nothing to us. The macmillan nurse doesn't respond to calls and we are left with Dr google which isn't the best. Is it a case of they won't treat as they have written him off or it isn't bad enough yet?
Thanks for any help
Hi SHJ and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. I don’t have Mantle cell lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
I honestly have no idea what ki 67 42 45% means and Dr Google will not be your friend the only people who are going to be able to explain this - in context to your dad's diagnosis is his clinical team....... so you do just need to keep your elbows in the doors of the system and keep calling.....a lot.
The one observation I can make is that MDT have most likely agreed (as you have mentioned) that his condition has not progressed sufficiently to go ahead with radiotherapy....... at times treating early can often not provide the best results......... Active Monitoring (Watch and Wait) is hard concept to get your head around but when it comes to Lymphoma this often happens.
If in your words "Is it a case of they won't treat as they have written him off"........ I would suggest that you would have been receiving different 'to the point' information.
You could copy and paste your text to our Cancer Nurse Team in our our Ask an Expert section but do allow a few working days for a reply..... but you may find that you will get the basic same reply as I have given.
Always around to help more or just to chat
I know this feeling well. When I was first officially diagnosed back in 1999 I was not told I had a very rare skin Non Hodgkin’s Lymphoma……. I was lead to believe I had bad Psoriasis…… ai found out by accident a few years later…….. but I am still here all these years later even although my condition became very aggressive in late 2013.
