Watch & Wait.... or Active Surveillance

[Quarry]

At the Oxford meeting, Anna Schuh put forward that there is a lot of evidence that CLLers don't like the W&W term (too passive - is anything going on? etc - caused patient worry) and she put forward that it is really Active Surveillance (AS).

Personally, I can cope with W&W, but what do others think?

If as a group we prefer AS, should we not be doing something about it?....like use the term here and on all literature and in discussion with our docs? Change will only happen slowly, but if we don't do it, it will never happen.

If there is a switch...I have to learn to spell surveillance (without spellcheck!).....

[Safta]

Maybe we should do it just to be proactive, to demonstrate control over our own destinies (or at least a short period of our inevitable...). I never minded the 'watch' word, but 'wait' made me feel helpless and manipulated. WAIT WOMAN, YOUR TURN WILL COME. Ouch

[PaulaS Volunteer in reply to Safta]

Hi Safta (and Quarry), Yes, I like the idea of demonstrating some control over our destinies, even if it's only with words. Not that I minded "Watch and Wait", but between us all, I think we could come up with something better. Maybe "Active Surveillance", or something else that is easier to spell... Any more ideas out there?

By the way, I loved your comment of "WAIT WOMAN, YOUR TURN WILL COME. Ouch". It really made me smile

Paula

[kathyg]

After 7 years of watch and wait , I don't mind those words. Kathy

[HAIRBEAR_UK Founder Admin]

I think Dr Schuh also emphasised how the words don;t encourage people to be proactive not just the patients? Maybe it gives the wrong message to those in general medicine too? My first blog here when we started was about how we could change this I think I suggested slightly different words but , perhaps you're right quarry it should start with us.?

New medicine and treatments around the corner may change this as a catch all and in fact it already has for some. A description that suggests there is no action may no longer be correct?

AIMS and active monitoring

healthunlocked.com/cllsuppo...

[Kwenda]

I am used to watch and wait, so not really worried.

But is Active Surveillance even good English or understandable.?

Surveillance by definition must surely be active....?

How could you have Non-active Surveillance...??

Dick

[Quarry]

Is not CCTV surveillance to recording................. until someone looks at it?! You have not read enough 'Government is conspiring to monitor you' books!!! ...perhaps a short stint in the US mid-west could help!!

[having said that, I have not read one!]

[hammyj]

I didn't like the Watch and Wait title because it felt nothing was happening. Active surveillance or active monitoring would sound better

[PaulaS Volunteer]

How about a brain-storming session? Everyone suggest alternative wordings for W&W, then have a poll to choose the favourite. We could try and use words/phrases that sound positive and pro-active, that communicate stuff like improving basic health, learning new things, educating friends, preparing for battle (well maybe not that), enjoying life while we can.... etc etc...

It needs to be short and punchy as well... not so easy... but it would be good to see people's suggestions.

[2003UK]

I am quite happy with Watch and Wait, and the old W&W, it does what it says on the tin. Personally I am not keen on Active Surveillance, with my over active imagination I imagine someone in the bushes outside my widow watching me through binoculars. Thanks for the discussion on this though ...... and very other subject and information, it is comforting not to feel alone.

[jangreen]

Hi I would prefer active care rather than W & W

[ygtgo]

Active .... care / management does it for me jangreen.

Watch & Wait sounds like there is nothing to worry about, or that nothing will affect you until you need treatment.

After treatment you are then ...... back on W&W ... healed ? ... nearly healed ?? .... a wee bit healed ???

It would be useful when explaining CLL to healthcare staff, GP'S, nurses, dentists etc, or the DWP when trying to access benefits, that living with CLL is not just a matter of watching and waiting.

[Quarry]

Loads of great points from a very unrepresentative sample! How to summarise?.....how about this?!

1 It does appear W&W not universally popular (though many ok to live with it) - it does convey passivity and so perhaps has wrong feel (to use and also to wider community) - we are active about it, as regular monitoring/discussion. Observing air traffic is not called Watch and Wait for obvious reasons!

2 Change will only happen if we start it - let's do it! There is probably patient demand

3 Some alternatives in above discussion, all with pros and cons - but what do we want to convey? Probably a sense of activeness (we/docs are in control and making decisions), not just sitting around - and this activeness needs to be clear to a wider community (dentists, GPs, even dare I say it travel insurance community etc). At the same time, we want to down-play alarm factor.....

4 Perhaps a poll here (again unrepresentative...) and discussion/vote(poll) at Barts meeting (I won't be there unfortunately)

Of all the suggestions above, I do like the Active Care. Has no bad surveillance feeling and encompasses both W&W and treatment phases. So does it cover everything? Perhaps Active Management is even better, as does the care word imply treatment too much....?

[Immie in reply to Quarry]

Sorry to ask the question but is there a difference between W&W pre and post treatment? my partner never experienced the W&W pre-treatment stage and it has always seemed a bit strange to say you are on W&W post chemo and Active Care would fit here (as is a constant round of consultant appts etc). Could you have something like active monitoring pre treatment and active care post treatment?

[ygtgo in reply to Quarry]

I think that W&W describes things from the Consultants point of view which is fair enough, but we have to adapt our lifestyle and be pro active to the reality of having a compromised immune system ,of illness and fatigue and the constant risk of infection etc.

[Myrddin]

Watch and Wait - sum up the consultants role in the journey but the uncertainty and what we are waiting for is not thar reasuring. Watchful waiting has more of a sense of action - but not brilliant. Adding active is a positive but don't see a cctv camera anywhere. Immie's suggestion of active care would work for any stage whether pre /during or post but not useful to medics just because it is too general.

W&W does sum up the pre treatetment situation well enough and probably will persist. We need to learn to live with it just like the sll/cll itself. The important thing is that the consultant is active when the time is right for us as individuals. We need to play an active part by telling it as it really is, how tired etc, rather than hiding symptoms because we are trying to be stoic. Should the time come where we need treatment we need to be reasonably fit to tolerate the current gold standard FCR. How quickly the new options will become available is unclear. So whatever the label we need to be active physically and mentally ensuring we are honest with our consultants so they can correctly access the need for treatment should our journey require it.

[HAIRBEAR_UK Founder Admin]

I guess it depends on who's doing the watching and waiting! Does a clinician watch and wait between reading your notes ahead of a visit? I guess we do that?

[Ernest2]

OK been thinking about this.

I go for AMC = Active Monitoring and Care

Whilst we are all familiar and happy ourselves with W+W I think it sends out a confusing message, and one that makes people think CLL is not important / significant.

So I think change would be a good idea.

Please keep posting ideas, then a Poll would be the next move.

Ernest (I've been told I can be the "slowest CLL-AMC patient in the west" . . . )

[ygtgo in reply to Ernest2]

Ernie ............. "slowest CLL-AMC patient in the west"

If by slowest ... you mean mobility ... we'll have to have a ' run ' off.

Up until a couple of years ago, I used to go hill walking 2 - 3 times a day ... but since the pain started, and I have had to go Oww ! with ever step I take, I get overtaken by ... ( My ol dad in his eighties - guy's on crutches - wee girlies pushing prams - you name it everything overtakes me ) .... and to make matters worse ..... I get fatigued !!! ..........

..... then again ..... Ernie - "slowest CLL-AMC patient in the west" would make a good title for a song.

[PaulaS Volunteer in reply to ygtgo]

I think Ernie IS referring to the title of a song, ygtgo... with some slight adaptations...

[ygtgo in reply to PaulaS]

Yes but whatever happened to Sue .....

Ernie loved a widow, a lady known as Sue ... She lived all alone in Liddley Lane at number 22.

Or even Two-Ton Ted from Teddington and he drove the baker's van .....

[AussieNeil Partner Administrator in reply to ygtgo]

Ah the memories of a great song! Here are the lyrics. You can also find Benny Hill singing it on Youtube:

songlyrics.com/benny-hill/e...

[Ernest2 in reply to ygtgo]

No no no - it's all a mistake - I am happily married

PM(message) me anyone and I'll explain why I chose my tag from "Ernest" (no connection with the song)

If anyone can re-write all the song lyrics for a CLL patient though, that would be great.

I've known several people that sing the song, but was fortunately far far too young to ever watch Mr Hill.

For the slowness, that is probably my thinking. Physically I can still run 10 yards at a reasonable pace, or walk a couple of miles, but then need several days off afterwards. . . . It's hard to get my head round that.

Good ideas on the W + W renaming - I'll post below

Ernest.

[Kwenda in reply to Ernest2]

Cannot find a song but there are some poems.

Below is one, and there is another just specifically for those with CLL, I'll try and find it again...

Dick

Poetically Inspired by the Emperor of all Maladies

September 30, 2013 | Brian Brewer

I was attending a lovely evening of music and poetry a few weeks back. In between sets of music and performance art, a man named Ed Luhrs took the stage and what he was about to read completely took me by surprise. He began by talking about The Emperor of All Maladies, a best-selling compendium of the history of cancer and cancer treatment. The book had moved Ed so much that he was inspired to write a poem based on it. After he recited it, I approached him and asked him if it was okay to publish it here on the CRI blog. He said it was. So, published in its entirety, is Ed's poem.

Mountains Beyond Mountains

In Tribute to Siddharta Mukherjee

I.

The body, resilient in all lines

of defense except one,

begins to utter hermetic code

in some remote corner of the abdomen,

the lung, the pancreas, the breast -

wherever it is, for reasons thousandfold

and unseen, a revolution takes place.

Through innumerable forms and effects,

inextricably arisen from the human genome,

the same pattern emerges:

a small gathering of cells achieve independence

from the norms surrounding them.

The body's growth-inhibition signals

are discarded as archaic litanies,

which, having formerly ascribed

to the religion of programmed cell death,

now march to a tune of limitless potential.

In this regime, singular masses,

grape-like clusters, or spindle-shaped strands

undergo limitless, shifting replication.

The newly arisen outpost

speaks a broken dialect of messages

within the very protein structures

that regulate the surrounding tissue.

An order is given that blood be drawn;

vessels engender continued growth

to the affected area, and then,

having securely established its power base,

a rapid invasion spreads to remote organs

in new and newer terrifying forms.

II.

mustard gas chemotherapy

the entire removal of the breast

and surrounding muscle

haphazard chemicals

and radical surgeries

done to save lives

while destroying them

children in a clinic

men and women

on the precipice of hope

defined by illness

waking eating waiting

trying to listen for opinions

trying to understand probability

poised ready unprepared

contemplating the wall

writing letters to the HMO

calling the HMO

after the letters are ignored

political lobbyists

public platitudes

genetic research

protein therapy

holistic understanding

fake medical degrees

in tropical locations

The Jimmy Fund

Mary Lasker

Sidney Farber

the list grows

the list goes on

and the question remains

how to treat

a suffering human being

with compassion and dignity

III.

Then there is the matter

of treating a moving target.

Mapping the human genome,

the equivalent of walking on water,

would also be the miracle of Lazarus

except for the tenacity

of the disease to resurface.

Patch a fix. A new leak rises.

Celebrate remission, and an ominous pain

signals renewed growth.

It is, as Mukherjee describes,

the story of Atossa, Queen of Persia,

and her first suffering,

which shows us the lengths

we've traveled.

What was once excised

by firebrand and blade

is now being treated,

in many cases, on the molecular level,

using technologies targeting switches

that regulate normal cell growth.

But there are switches beyond switches,

and mountains beyond mountains,

leaving us the upward path

on which to push our burdens.

We find no all-encompassing cure;

rather, several strands of illumination,

which give some small hope

for what once seemed so utterly hopeless.

- Ed Luhrs

- See more at: cancerresearch.org/news-pub...

[Kwenda in reply to Kwenda]

Here is the poem for those with CLL.

I found the CLL poem, it’s a little sad…

It was on Brian Koffman’s blog site..

…………………………………………

Divide and Conquer

Alan Sullivan wrote this poem. He was diagnosed in 2005 and sadly is no longer with us.

The late Dr. Terry Hamblin shared his story on his blog.

Thank you Alan. Rest in peace.

Divide and Conquer

The cells divide. The cells that will not die

divide too well and so they multiply.

They kill the host to keep themselves alive.

The blood goes bad. In vain physicians try

to purge the veins with drugs the cells defy.

The cells divide. The cells that will not die

mutate anew. The hardy few survive.

The few recruit the many teeming by.

They kill the host to keep themselves alive.

They colonize the nodes from neck to thigh.

The tumors grow, and scanners never lie.

The cells divide. The cells that will not die

stifle the very organs where they thrive.

Blind, stupid things—their purpose gone awry—

they kill the host to keep themselves alive.

Exploding through the flesh, they multiply,

but immortality eludes them. Why?

The cells divide. The cells that will not die

kill the host to keep themselves alive.

End..

[sparkler in reply to Kwenda]

That's more than a little sad...... I think that's an understatement.

sparkler x

[PaulaS Volunteer in reply to Ernest2]

I like the idea of AMC as well.

[Quarry]

Sparks another idea.....

Active Management and Care (still AMC!)................or just Active Management.......or Management and Care

We ARE doing things during the 'monitoring' (getting/keeping fit, green tea capsules, folic acid, regular bloods/discussion etc etc)

Need to get out more (as they would say in Private Eye), especially on such a great autumn day!

[Ernest2 in reply to Quarry]

That's a good idea.

Would like to stick with three letters

AMMC (Active Monitoring, Management and Care) would be too many letters, AM perhaps too few, and reminds me of early mornings.

Anybody got any more please, before a poll ?

And it's another fine day out there now, so time to get outside.

Ernest

[AussieNeil Partner Administrator]

Very interesting discussion. "Watch and Wait" definitely comes across as too passive and "Active Surveillance" or "Active Management and Care" are improvements.

I was interested to note that the New South Wales Rural Fire Service (the world's largest volunteer fire service) and recently in the news:

healthunlocked.com/cllsuppo...

have three Bush Fire Alert Levels:

Advice

A fire has started. There is no immediate danger. Stay up to date in case the situation changes.

Watch and Act

"There is a heightened level of threat. Conditions are changing and you need to start taking action now to protect you and your family."

Emergency Warning

An Emergency Warning is the highest level of Bush Fire Alert. You may be in danger and need to take action immediately. Any delay now puts your life at risk.

rfs.nsw.gov.au/dsp_content....

I quite like "Watch and Act" as and alternative to "Watch and Wait".

Neil

[Ernest2 in reply to AussieNeil]

Hope things are going ok with controlling the fires, and you are still well out of the danger zone (and drifting smoke).

Also thoughts with the Pilot lost, trying to put out the blaze.

Fire control is I think a good analogy to CLL when trying to explain it to others.

You don't just stand back and watch an accidental fire.

Just need a few more ideas, before a poll ?

So far (from memory) in roughly chronological order:

W&W (i.e. leave as is)

AIM

AS

AM

AC

AMMC

AMC (management version)

W&A

Ernest

[Elizabetha]

Like many others I feel the term watch and wait is too passive and makes me feel that I have no control at all. I prefer the term Active Management and Care as I think it might be more readily understood by those who do not have much knowledge of the condition. When told that I have CLL they think that because I am not receiving treatment that I have a minor condition and that any symptoms such as fatigue etc are therefore not serious and can be discounted. AMC is a better description of this stage of the condition.

[sparkler]

So far, I prefer 'Active Management'. We'd have to use these words and not the abbreviation, in describing our present situation to others and so I think that to add the word 'Care' would make it too long and also has many different connotations, which again might influence how others perceive us and our condition while we are not in treatment.

I need to get out the Thesaurus ........ and get a life!!

sparkler x

[sparkler]

I think I've already changed my mind. Maybe 'care' is good ......'Active Care'...oh I don't know!!! Sorry x

[HappyCatUK]

Personally, I like the term 'active monitoring', as in my opinion it implies that things are being done to monitor disease progress (or, hopefully, lack of progress), and it sounds more upbeat and positive than w&w. I actually have used the AM term to family and friends, as I found they were completely bewildered when I said w&w. The AM term seems to give people more confidence that I am being cared for.

[ygtgo in reply to HappyCatUK]

Hi there HappyCat

Totally agree with your comment. Watch & Wait from the viewpoint of the consultant haematologists we visit is maybe appropriate, but it in no way describes having to deal with the ' can of worms ' that arise, due to having to manage a compromised immune system.

Having to deal with being on benefits, W&W implies to officialdom that as long as you are on W&W, that CLL has no impact on your health.

Active Management/Care as you say does sound more upbeat and positive, and empowers family and friends etc that they can more easily be involved with you, as opposed to the closed door of W&W.

[sparkler in reply to ygtgo]

You said it ygtgo - we have to "manage a compromised immune system".

That involves so much more than Watching and Waiting, even more than Monitoring, which still seems to minimise what we actually do, as others assume that 'to keep an eye on things' is all that is required, when we all know, we have to do so much more.

At the moment, I still like Active Management, as it is not passive at all but I keep an open mind........

sparkler x

[HappyCatUK]

Yes, I would be happy with using either active management or active monitoring, do you think there will be a poll on this? I am new to this site (although was diagnosed nearly 3 years ago) and not sure yet what influence the CLLSA has?

[sparkler in reply to HappyCatUK]

Hello HappyCat (love the name) and welcome.

I'm sorry you have CLL but very glad that you have joined the site.

I think it is possible for the CLLSA to have influence and we are definitely a stronger force, whilst acting together, than we are alone....strength in numbers, as they say!

You say you were dx nearly 3 years ago and have been using the term AM, when speaking to others about your CLL. This is quite progressive really and if through discussions here, more of us can begin to change the way in which we talk about our CLL, then we might effect change for the future. It's a start anyway........

We are a friendly bunch here, so please feel free to ask about anything and if you want to just talk about how things are for you, then this is a good place also to do that.

Warmest wishes

sparkler x

[HappyCatUK]

Thank you sparkler for making me feel so welcome.

I chose my name to reflect that i do feel happy these days as, since my dx, my disease progress seems to have been slower than expected, although in the early days an almost simultaneous dx of a melanoma and then CLL shook my world quite badly.

Nearly three years on, I notice that i am getting tired very easily and I seem to frequently fall foul of petty infections that drag on for ages. All of these are a nuisance, but on the whole I am feeling better than I thought I would by now, and I feel very positive that new drug trials and a better understanding of all cancers will greatly improve my chances IF and when things start to 'kick off'. I am optimistic! x

[Barbarann]

I thought it was watch and wait between appointments, until my consultant said last time that I should be checking myself for changes between appointments. I find it hard, as I find it hard to take my own pulse, to feel for change in lumps in my neck. They are there, are they bigger or not?

[Newdawn Administrator in reply to Barbarann]

I think your Consultant is meaning to monitor any changes to your general health Barbarann such as increasing fatigue, any night sweats, more infections, pain or tenderness in any areas etc.

They'd be no expectation of taking pulses etc. unless you have a b/p machine that also takes your pulse but sometimes an increase in Lump size can be more obvious.

Best wishes,

Newdawn

[Barbarann in reply to Newdawn]

Wow, thank you for such a quick response, Newdawn. That is helpful. I didn't mean literally taking my pulse, but that clarifies what he wants to know next time I see him.

[alexmcg48]

Personally I don't mind W&W, although I can see how it can cause problems, because in truth I don't now whether I have a serious problem or not? I get the feeling from my initial discussions with the doctor's that they don't see me needing treatment anytime soon, because it's been suggested that after my next bloods in 6 months, they'll likely become annual until I feel I'm starting to show other symptoms. The truth is though until I have the next set of bloods I don't know whether they are right or wrong, but until then I'll be doing everything I can to try & keep my count low & trying to avoid getting too many other symptoms, by staying as fit as possible & taking a Green supplement, so from that point of view you could say I'm trying to proactively manage my condition.

[Umpire20]

This thread seems rather old. In the US "Watchful Waiting" for low-grade non-aggressive prostate cancer has been replaced by "Active Surveillance". I have Gleason 6 PcA and have been on Active Objectified Surveillance since diagnosis in December of 2006 at 59 years of age. Last PSA in February 2016 is 0.9.

[Cllcanada Top Poster CURE Hero in reply to Umpire20]

You are right... 'Watch and Wait' or 'Watch me loose Weight' as I referred to it, is being replaced now in CLL by "Active Surveillance", I'm seeing it much more frequently in research papers, and on websites.

~chris

[Newdawn Administrator in reply to Cllcanada]

Or in the case of my Consultant....'passive inertia!'

Newdawn