The strange thing about this group of conditions,
and again this seems completely counter-intuitive in the world of cancer,
is that early diagnosis, early treatment makes absolutely no difference to outcome.
That is not the case with just about every other cancer you think about.
But, if this disease is diagnosed and it's at a number of places, the patient is well,
their lumps aren't terribly big, it's not causing any problems and the bone marrow is fine,
then you leave it alone.
Now again, 'watching and waiting', that's what we call this, or 'active surveillance' is probably a better term,
doesn't compromise how long you live. That seems completely wrong.
You would imagine diagnose something early, treat it early, get rid of it, make me live longer.
It's not the case.
We know this from trials that have been done in this country and other places,
where we've taken people, at diagnosis, who are well and treated them, and half of them we've not treated,
and we know with long-term follow-up, there's no difference in how long you live.
'Watching and waiting', if you are asymptomatic, with no symptoms whatsoever, it's the right thing to do
and it doesn't compromise you.
I guess the challenge is psychologically coping with the idea that you've got some kind of cancer;
I've just told you've got cancer and I'm telling you you're not having it treated.
That's quite challenging for some people but nonetheless that is the right thing to do.
You are watched in that scenario and you'll be followed up in clinic,
probably increasingly infrequently if you're well.
People don't tend to want to do recurrent scans because we don't want to expose you to lots of x-rays
but scans will be done if there's a change in your clinical situation, particularly if you become unwell.
You won't become unwell overnight, it's a gradual process.
If the doctor has concerns that your disease is starting to cause you problems,
then you'll have a scan and then treatment would be discussed at that point.
If you like, it's a contract between the patient and us:
we're saying, we don't want to see you very frequently but we want you to keep an eye on yourself
and let us know if things change.
You are going to tell me if your disease is active rather than me telling you.
As I said, as you're being watched, if things don't change over a reasonable period of time,
we will extend the period of time between you coming to visit.
You need to be aware of particular things: night sweats, fevers, weight loss.
Now remember, if you get the flu tomorrow, you get night sweats, fevers, weight loss.
It's got to be in context with what's going on.
Symptoms with lymphoma come on gradually, so you're not going to be well today, ill tomorrow.
Things come on gradually.
So if you're developing those symptoms, particularly weight loss, unexplained weight loss,
that's something that would make me want to see you;
developing lumps and bumps that are causing problems or just not feeling quite right, you know,
if you're gradually not feeling well.
Either see your own doctor because, of course, normal things are going to happen to you as well,
or if you've got the phone number of a clinical nurse specialist,
talk it through with her or she may ask you to come to clinic for us to see you.
I don't mind seeing people who are worried about lymphoma coming back and it's not.
I'd far rather see you and reassure you than you wait six months for your next appointment,
by which time you're not very well.
So, talk to somebody about symptoms that are worrying you, such as your own doctor.
It is particularly with ongoing watching and waiting, in older patients particularly,
other medical things do intervene.
You have to be aware that symptoms may actually be nothing to do with lymphoma.
That's the other side of the coin.
If we don't think it's lymphoma, it doesn't mean we think your symptoms aren't real.
Make sure that you find out [what they are].
Sometimes your GP may not be aware that you're under surveillance from a lymphoma point of view,
so make sure that they know that.
That will probably increase their awareness of the things to be looking out for.
But if in doubt, talk to us and I'd rather see somebody and reassure somebody,
than them wait long periods of time and and put it off.