Watch and wait in non hodgkins lymphoma

Hello Susannah

I can certainly sympathise with your predicament although my history is not similar to yours.  I had anal cancer which reappeared in lymph nodes just over two years after being given the all clear.  At first my consultant advised 'watch and wait' because they were slow-growing and not causing me any inconvenience or pain.  But at the next review after the next scan - 3 months later - he thought it was time to begin treatment as the lump in my neck was visible and I was becoming self-conscious about it.  Also I was getting some pain in the abdomen from another of my lumps (sorry, I use the word lump because it's quicker than saying enlarged lymph node, but that's what I mean).  Same thing again after a 3 month break from chemo:  lumps had grown a lot, now causing quite a bit of pain, so some r/t (which I am having this week) and more chemo are most definitely called for.

So the answer to your first question about how do we know when it's time to treat is probably when you, the patient, feel it's time and/or when a scan shows disease progression.  I don't know about PET scans as I have CT scans.  When I asked my consultant wasn't there a danger in having so many, he replied that yes they are carcinogenic but we are talking long-term, ie 20 years.  My need for scans is short-term, to keep on top of present disease, so the long term risk is a secondary consideration.

So I didn't have long on 'watch and wait', but you could look at it this way:  we all live with uncertainty about the future all the time, especially us incurables.  I cope by living in the present and trying to let the future take care of itself, and actively practice mindfulness techniques.  Others simply get on with their lives and try to enjoy the moment without actually meditating or anything.

You might find it helpful to join the 'living with incurable cancer' group here, if you haven't done so already:  they are a great bunch of people and very supportive.

All the best.

Dyad

Hi Dyad,

Thank you for your helpful reply. I am usually a very positive person but am having a few wobbles at the moment. 

I will take your advice and join the " living with incurable cancer " group. I have had a look at this group since my relapse but find it difficult to include myself in this category. ( Still being an ostrich and hoping for a miracle!!!)

I am certainly enjoying each day and making the most of my life. I am kept busy with grandchildren and my hubby and I have lots of lovely holidays.

I do hope your R/T goes well and you get some relief from your pain.

All the best,

Susannah

I know what you mean about being reluctant to join the incurables group.  We don't like to admit that that's where we belong.  I stayed on the sidelines for ages because I felt I didn't quite belong, and I certainly didn't have all their experience of different chemos and drugs etc so I felt like a novice!  But they are a very welcoming lot.  You can just stick around and read the posts for as long as you like before actually joining in.

Yes, you sound positive.  So am I, most of the time, but inevitably when a setback hits, one's positivity takes a beating.  And as a friend said to me yesterday, 'You're wonderful, but you don't have to be wonderful all the time!'.  You can be wonderful and wobbly.

Hugs, Dyad

Dear Dyad,

Thank you for that Dyad. Its good to have your support.

You are certainly an encourager and this site needs people like you. Its amazing that even though you're going through so much yourself you can empathise with others.

I get that said to me all the time  "you are so wonderful, so brave , you're such an inspiration , how do you stay so positive etc etc."  " Well," I reply " what choice have I got ?"  There is certainly no way I am going to be miserable but as you say we're allowed to have a few wobbles.

Take care, hugs, Sue