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Leukaemia CARE
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HU workshop - worried waiting

Hi all. Last week I was told I have something called CLL although after trawling online I'm worried it might be called SLL?

I've been told I won't be treated and instead have to watch and wait? I wasnt with the consultant for long so didn't have many chances to ask questions .

I've found information about this online but surely this is ludicrous. Am I entitled to a second opinion?

2 Replies

Hi, what a worrying time you must be having.

Firstly, *loads* of people find it really hard to remember all the things their consultant says, especially in the first meeting, as it's really hard to take in this news. For future visits, it can be helpful to take someone with you, or, if you don't want to do that, then make notes. it can be really helpful to write down any questions you might think of to ask the consultant, just as you think of them, so you have a little list ready to go when the appointment comes up. Also, check out the pinned post about Leukaemia care community support hours, they are really helpful, and friendly, experienced nurses, who can answer a lot of questions. You can also ring your named nurse, if you have one, or your doctor if you have urgent questions (like checking your diagnosis for reassurance).

As to 'watch and wait' - it sounds daft doesn't it? To tell you you have a kind of cancer, but, that you won't be having treatment right away. My husband has CLL and has been on watch and wait for about 3 years. Treatment for CLL can be really arduous, and can cause more problems than the illness in some instances, so, at the moment, they offer treatment when (or if - some people never need treatment) the illness progresses to a point where the treatment stands a good chance of improving things.

Watch and wait can be really stressful, but, it's a good chance to make those lifestyle changes you hear about, eat healthily, stay fit and active, that kind of thing. And, you know, do some of the really fun things you always wanted to do, but put off til one day. Not because of any sinister reason, just because, it takes your mind off the watch and wait, and no one regrets doing something fun, do they?

Stay in touch on here too, there are loads of experienced people who can tell you much more than I can, but I hope that's been a bit useful.

Oh yeah, and, edited to add, be a bit wary of 'dr Google' - there's a lot of helpful stuff online, but there's a lot of Unhelpful stuff too.

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Hi Worriedgirl2017, I feel your name says so much about how you feel. I cannot tell you about your diagnosis, but I can remember not getting a chance to ask my consultant any questions, although to be fair I would not have known what to ask and I was in too much shock at that point anyway. I was diagnosed 14 years ago and I have been lucky enough to have been on watch and wait ever since, treatment options are coming on in leaps and bounds nearly weekly. Looking back all those feelings come rushing back to me a I read your post. I believe you can always ask for a second opinion, but this time does give you a chance to write down what questions you might wish to ask the medical profession and just be kind to yourself you have had an enormous shock, take care.

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