Waiting for diagnosis

[Stitcher100]

Hello

I'm 61 and haven't yet been diagnosed with CLL although my GP has suggested I have it. I'm waiting for my haematology appointment but have been triaged as on the 12 week list. That's all very well for them to say - they don't have to lie awake thinking about whether or not I have a blood cancer.

[cajunjeff]

You probably had a blood test with your GP which showed an abnormally high white blood cell count which made him suspicious of Cll. You might also have some areas of swollen glands.

Unlike other cancers, and this is really counterintuitive, it’s not that important to catch Cll early. Very few people treat at diagnosis, some live years and years of normal life with Cll before treating, some never treat at all.

For that reason, some doctors don’t see Cll diagnostic testing as something that needs to be done right away.

But that of course doesn’t lessen your anxiety and since Cll can be diagnosed with a simple blood test called flow cytometry, it doesn’t seem fair to make you wait. You might try to sweet talk someone to move you up or raise hell to get moved up. The squeaky wheel gets the grease metaphor has merit.

[louie48]

Howdy Stitcher100, and best wishes. If you are going through a confused and anxious period, then read some of the posts to the right side. They have lots of information and might help you sleep better at night. To ease your mind a little more, folks on this blog will more than likely respond with their experience with CLL and tell you about all the new treatments on the horizon, God Bless

[lankisterguy Volunteer]

Hi Sticher100,-

I agree with cajunjeff - the waiting can be the toughest part of this disease, and not knowing which type of problem you have can even be worse.

-

If you want to read some information while you are waiting try these links:

healthunlocked.com/cllsuppo...

and

healthunlocked.com/cllsuppo...

-

Len

[SofiaDeo]

We're about the same age, and were brought up to think a "cancer" diagnosis meant "must do something NOW"! Most cancers are acute and need assessment/treatment sooner rather than later. With a potential CLL diagnosis, this is not the case. Please trust me when I say the pathologist can tell by looking at your blood on the slide if you are likely to be one of those (like me) who warranted treatment sooner rather than later. And you may even be diagnosed with the precursor to CLL. Even with a CLL diagnosis, it's a lot like diabetes or heart disease. There may be lab readings or other tests that indicate something needs to be done ASAP, but unless you have something severely abnormal the docs aren't going to jump through hoops. Do you have a copy of your blood tests? Can you put that on your profile? Some of us can make an educated guess as to how "urgent" certain tests results are, if you are fearful that you are "falling through the cracks" which unfortunately does happen, albeit rarely. Hopefully sharing and hearing others' experience with similar results will give you some peace of mind until you get more testing done.

P.S. If you tap on various peoples names, you will see their profile. A number of us document our CLL journey there.

[LeoPa]

Kudos to you for finding this site even before your diagnosis is confirmed. That's what I call a good start! Relax for now you are not in any kind of imminent danger. You have come to the right place to figure it all out way before you will need any of the knowledge that you are going to pick up on this site.

[Psmithuk]

Hi Stitcher, and welcome to this site. Although you have not yet been formally diagnosed there's information on here that can (hopefully) put your mind at rest. It’s a long time to wait, but in the meantime don’t worry (easy to say!) because generally with CLL you will have plenty of time to learn about living with it if it found. There are lots of people on here who have had it for more than ten years (some much more) without needing any treatment, and a good number who never need it. Also there are now many choices of medication, and they are much kinder than some of the old ones.

Come back with your questions - lots of support available!

Cx

PS if you go down to 'more' at the bottom of your post you will find information on how to 'lock your post' to this community so that it won’t be found on the internet, and you might get more replies.

[PinkFoxtrot]

Hello there - I am in the same situation as you! My concern is that my lymphocyte count went up after my COVID vaccine ( probably coincidence) but with no diagnosis I am wondering if the two are connected. I’m now due my booster but am reluctant to have it as I don’t know what is going on. I do think the word “ cancer” is unhelpful as that is a word that covers many diseases some treatable some not. If it is CLL, it is treatable so try not to loose sleep! I know what that is like and it’s easier said than done but Good Luck!

[HdoesTri]

I was very lucky, I've had a Vitality Health membership for a few years and so only had to wait a couple of days for diagnosis. It was all very unremarkable, no treatment, just come back for a checkup in 6 weeks. The consultant was very reassuring and everything I've read suggests it could be years before I need treatment and that the treatments are very effective. However... it didn't stop me imagining symptoms while I waited, and they felt really real! funny that they all disappeared after the diagnosis!