Hello, my name's Simon Rule.
I'm a Professor of Haematology at the Peninsula Medical School in Plymouth
and I'm a Consultant Haematologist in Derriford Hospital, Plymouth.
Low-grade lymphoma means indolent and indolent is another term for slow-growing.
These are forms a lymphoma that often have few symptoms actually.
They will present with lumps and bumps and the biopsy will show it is a form of lymphoma.
Sometimes they are diagnosed by chance, in fact, some other procedure is done, for example,
you've had a gallbladder taken out and there's some lymph glands
and a biopsy will show it's low-grade lymphoma.
What does that mean? So, the first thing to emphasise is lymphomas are forms of cancer,
cancer meaning cells growing in a place where they shouldn't be,
but because they're cancers of the lymph gland, it's very important to make the point this isn't solid cancers,
things like lung cancer, bowel cancer, breast cancer, which have spread to lymph glands.
That's a different scenario altogether.
These are diseases that affect lymph glands. They are almost always in lots of places at diagnosis.
Like with all the other lymphomas, the first thing we need to do is see exactly where that is.
So that involves a CT scan and a bone marrow and some blood tests.
As I said, invariably this is in a number of places and that doesn't matter.
Now, that does matter with breast cancer, bowel cancer, lung cancer, the solid cancers,
where, if it has spread beyond the initial site, that's generally a more difficult clinical situation.
With these diseases, it's what you'd expect
and it doesn't necessarily mean any difference from a treatment point of view.
My first symptoms were a lump in the groin the size of an egg and I contacted my GP.
Very luckily I wasn't the first lymphoma patient she'd ever seen.
She told me straight away, 'I think you have lymphoma but we'll follow the normal route:
to 'watch and wait' for two weeks, and if the lump goes you've got an infection, and if it doesn't go,
you've probably got lymphoma.'
In the two weeks, a second lump came up on my neck,
so it was lymphoma and the whole thing with the hospital started at that stage.
It started off with fine needle aspirations in the two lumps and then a CT scan and MRI scan
and that's when the diagnosis of B-cell lymphoma came up. Previously to that it was just lymphoma.
As with most lymphomas, this is a disease of older people, they're common as we get older.
Just a few important points about these diseases is that there's nothing that we know of that brings them on.
They're not due to smoking, drinking, overhead power lines, microwave ovens, mobile phones;
these are the things people normally ask me, environmental factors.
So there's nothing that we know of that's leading to these conditions.
My first feeling was, what is lymphoma?
I had no idea, I'd never heard of it before I got it as a diagnosis.
So, I went away and checked it on the Internet, of course, as one does, and was totally surprised.
I thought, 'how did I get that? What did I do?' which is the normal reaction.
I know the truth now is that you don't ever know how you got it, it's just something that happened to you,
and a mixture of 'oh well it's not so bad', 'oh well it's terrible' and up and down depression,
and then ignoring which was basically the best thing to do really, because there was a lot of waiting around.
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.
Now that is not the case with just about every other cancer you think about,
but if this disease is diagnosed and it's in 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.
'Watching and waiting', that's what we call this, '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.
If I sat and thought about it, I became thoroughly unpleasant to live with
because I was totally introverted and upset that I had got this illness and I didn't know anything about it.
So I tried to be very positive and forget about it and just lived life as normal,
because at that stage, I had these lumps, you know, so what? Everybody has lumps. [Laughs].
I didn't feel ill, just fed up that I got something that I couldn't control.
So 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 know expose you to lots of x-rays,
but your 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.
There are lots of treatments for these conditions, that's the other thing.
By and large, the treatment of choice for an indolent or low-grade lymphoma that needs treatment
is a form of chemotherapy in combination with the monoclonal antibody, rituximab.
We know that adding rituximab to chemotherapy improves the outcome significantly,
so that's the standard of care.
There are a number of different chemo therapies
and there's no absolute one type that's appropriate for everybody.
So you tend to use the chemotherapy that's appropriate for the patient, by which I mean,
the older you are, the more other medical problems you have,
the less inclined we would be to give you more intensive type therapies.
They decided because I also had a lymphoma mass on my sacrum, that 'watch and wait' didn't work anymore
so I had to start treatment.
The big mistake was to read what other people said about chemotherapy.
So I expected it to be awful and the first course wasn't so bad.
I do have to say, each lot of chemotherapy was more difficult to handle.
I was really surprised at how quickly my hair dropped out. I hadn't expected that at all,
but the hairdresser was great and said, 'either you can have hair dropping out every day for the next two weeks,
or I can shave it off for you.' So she shaved it off for me.
You would expect to get a response. Most patients treated with this condition get a response
and that's assessed by a scan, usually in the middle of treatment.
Most people are going to get six lots of treatment, to three or four weeks apart.
We'll do a scan, then you get another scan at the end of six lots of treatment
and then at that point rituximab is often given in what's called a maintenance setting.
We give rituximab for two years in total
and we know doing that reduces the chance of the disease coming back in the short term.
However, these conditions are generally incurable.
They will come back at some point in the future, but it's usually many years away.
I was absolutely fine and then suddenly I got really bad pains in my hip and I was having trouble walking.
I had another scan to check up on that and they decided that I'd got a second mass developing,
so it would be a good idea if I had some further treatment.
The thing with indolent lymphomas is that you can have more than one relapse and that's often the case, in fact,
particularly with younger patients.
So, having say, watched for a while and then treated, there will be a period of remission,
usually when quality of life goes completely back to normal.
Then, it'll relapse, we'll treat again and then generally you're going to see a pattern of ongoing relapse.
Generally speaking, your first treatment gives you the longest remission
and then subsequent treatments give shorter and shorter emissions.
How you manage those multiple relapses, again, depends entirely on fitness of the patient,
what you're trying to achieve, where the relapse is and what drugs you've got available.
The other thing is, unlike some situations, even some types of aggressive lymphoma,
multiple relapses can be effectively treated.
So you can re-treat this disease on numerous occasions.
The other thing I would say is, write questions down before you meet your consultant.
Nobody minds being asked questions, no question's a stupid question
and the minute you walk into a consulting room, if you haven't written it down, you will have forgotten.
We are very intimidating, apparently, I find that hard to believe but we are,
so patients tend to forget and get a bit flustered when we're telling you things
and you don't always take it on board.
So, bring somebody with you, if you want, bring something to record the conversation.
I don't mind that, why would I?
Just so that you can remember what's been said.
That's life, if it relapses, it relapses, if it doesn't, it doesn't.
So just live your life and forget about worrying about it.
I can honestly say at that stage, I gave up the worry of "wait and worry" and did 'watch and wait'.
That's what I've done since. I've had six monthly checks since then and I've been absolutely fine.