Hi Everyone,
I was diagnosed with low grade non hodgkin's Lymphoma a year ago (stage 3) and have been on watch and wait. I have just had a further scan and my yearly consultation and I'm a bit confused.
I was told previously that I would be on watch and wait until I developed symptoms (which I don't have yet) however during my consultation they were talking about starting treatment, postponing it until the summer due to covid. I'm having a check up in 6 Months to discuss more.
My Lymph nodes have increased in size a little (about 2cm) and there's one in my back they didn't see before.
I'm just a bit confused as everytime I see the consultant I seem to be told something different.
Should I be showing the symptoms before they start treatment?
Any thoughts would be greatly appreciated.
Hi DevonshireDumplin and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our Lymphoma groups.
I was diagnosed way back in 1999 with another low grade, rather rare incurable but treatable type of skin NHL Stage 4a and although my Lymphoma ‘type’ may be different from yours, I have experienced most types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately.
What exact type of Low Grade NHL do you have?
Low grade NHLs can be very confusing, it took over 14 years before any big gun treatments were used on me, although I did have some skin treatments over these years.
They (Consultants) will tend to hold off as long as they can in starting any treatment. This is to ensure that any treatment that is used will make a significant difference. There are a lots of treatments but you have a lifetime condition so they cant jump in and use up options until it is very necessary.
Active Monitoring - I prefer this term to Watch and Wait is classed as a treatment!!..... and it is a battle between the ears to get a handle on it. Low Grade presentation will change from week to week, month to month, year on year....... so you will find mixed messages from consultants - but once it starts to continually develop that is the tipping point for treatments.
Should I be showing the symptoms before they start treatment?
On the whole yes, but honestly this can change like the wind. As long as you are doing well they will hold back. I had no symptoms apart from my skin and it took the 14 years before it started to become aggressive (hit my community name for my story) but I can say that once you do need treatment it is very effective and can put your NHL to sleep for long periods of time.
I have put up a few links, these are all from Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma support groups and indeed a great Lymphoma Buddy Service.
Happy to talk this through more ((hugs))
Hi again DevonshireDumplin
So we also have a specific Follicular lymphoma group as well so do have a look through it.
Stage 3 in Lymphoma is not as big a deal as in other sold tumour cancer types. The stage is purely a signpost as to where it is presenting and what treatment would be needed - not necessarily a prognosis.
I was eventually stage 4 with my type of rare skin NHL with 70% of my skin covered with tumours plus in my Bone Marrow but even then it was not time to use the big gun treatments.
It's a good move to try and get some clarification. I always record my appointments so I could check back as to what was being said and what I missed.
I am doing great thank you for asking.
You will see from my profile my journey is rather long and complicated but I am now into my 5th year in full metabolic remission and living a great life. Amazing in that back in 1999 when I was a first diagnosed I was told I would never ever see any long term remission - there is always hope ((hugs))
