Apologies before I start this post: I’m rambling a bit but I’m confused.
I’m a 62yo male, diagnosed in March 2020 with MCL. Fortunately for me, the cancer was, and still is indolent, so my consultant recommended a watch and wait strategy with 3 monthly consultations.
My consultations have been mainly by telephone due to COVID but for the latest review today, I asked for a face to face. One lymph node on my neck (just under my left ear) has slowly swollen so that it now looks like there is a golf ball under my skin.
Within two mins of commencing the consultation, my consultant said that he felt it was time to start treatment and recommended chemotherapy. He said he’d arrange a full body CT scan in the next two weeks, review my case with his colleagues, and then see me again in 4 weeks to recommend a course of treatment. He also said that because I’m fairly fit and well otherwise, a more aggressive chemo regime would give me a longer remission. To be honest, I wasn't expecting a treatment option whilst still in an indolent stage, and didn’t really have time to process, and ask appropriate questions.
However, my concern now is that previously, he’s told me that when it turns aggressive, he has 4 or 5 lines of treatment, starting with Chemo, and that since he can only use each one once (unless a 5-8 years passes before repeating), he’d rather not ‘waste’ a treatment until my MCL turns aggressive. And yet now, while it’s still indolent, I feel like he’s suggesting using one of the main treatments for what appears to be for a cosmetic reason.
I did ask whether the node could be surgically removed: he said yes, but it would just return in another node.
In my simplistic understanding of this, if he surgically removed the node, and it grew elsewhere, at least I’d have another 12 months or so (assuming it didn’t turn aggressive in that period) before we had to use the prime treatment weapon.
What are the forum’s thoughts please?
Hi and welcome, first I have a different type of NHL and it was also low grade, although it was a skin Lymphoma that required skin treatment eventually after 14 years it became aggressive very quickly so had to be treated very aggressively (hit my name to see my story)
I would not jump the gun on this as the CT and case review will all have to be done before treatments starts for sure. So time to ask questions..... as for cutting out the node it may clear the cells but as this is a blood cancer there is a very good chancer there are cells in other areas.
Lets see if any others with the same type are looking in.
