Newly diagnosed with CLL waiting for CT scan been to hematologist return in 10 weeks. Can any one tell me if I should go to my doctors

[buzzybab]

because I keep getting pain in my lower left side or should i just wait for my scan and appointment. This is a new pain so not sure if related to CLL . I have never been ill before so not sure if I should bother local GP now.

[AussieNeil Administrator]

If the pain is persisting then I'd recommend you see a doctor as soon as you can and mention your CLL diagnosis - even if it is on record. If you know you have an enlarged spleen then also mention that as it might be the cause of your pain, though pain from your spleen is usually felt on your upper left side. (Your spleen is normally tucked under your left ribs, but can become enlarged and hence spread below your ribs as CLL progresses and thus possibly be the cause of your discomfort - the doctor should check that.) In my layman's opinion, it isn't worth the risk of waiting 10 weeks, particularly as this could well be something totally unrelated to your CLL diagnosis.

If you haven't had the cause of this pain resolved by the time you see your haematologist, then it is worth bringing it up again. The pain might be due to some enlarged lymph nodes pressing on something, in which case the CT scan should help with that diagnosis.

I hope this is resolved for you promptly - let us know how you go,

Neil

[Newdawn Administrator]

Hi buzzybab,

Welcome to the forum at a very difficult time for you. Glad you found us but sorry your condition has made it necessary.

I was diagnosed with CLL a year ago yesterday and appreciate what a frightening time it is. We understand your fears. It's a hard adjustment especially if you've previously been well.

I absolutely agree with Neil about this. You need to consult your GP because even though we have CLL, we still have unconnected ailments like the rest of the population and your GP remains your first point of contact.

When I was diagnosed, I'd been suffering a dragging ache and pain in the left side of my ribs and by the time I went for the CT scan, I was convinced it must be an enlarged spleen (even though manual examination could detect no swelling). I got into such a state I actually bruised that area prodding and poking at it. When the scan came back there was no spleen inflammation or enlarged lymph node (well actually one very slight node but nothing to explain the pain). I have osteo-arthritis and the pain in my side was attributable to my rib cage and pulled intercostal muscles. I still have it.

You'll not be 'bothering your GP', as time goes by you may need to see him/her more regularly and it's good if you can develop a trusting relationship. He will be able to examine you and whilst not as accurate as a scan, any degree of serious inflammation of the spleen is usually detectable. You'll find the haemotologist examines these areas each time during your consults. You'll probably already know this and forgive me if you do but this explains the spleen; -

The spleen sits under your rib cage in the upper left part of your abdomen toward your back. It is an organ that is part of the lymph system and works as a drainage network that defends your body against infection. It's an organ that's often affected by CLL as a result.

It's good that you've received the diagnosis and that the next consult has been scheduled for 10 weeks time. I feel sure that if your results had indicated anything seriously urgent, you'd have been seen much earlier.

There's a wealth of information, links and advice available to help you at this tough time buzzybab. Please feel free to post anytime you need help or support. Good luck.

Newdawn x

[Cllcanada Top Poster CURE Hero]

As a CLL patient you must be proactive in your medical treatment. All aches and pains, colds and flu need to be investigated IMMEDIATELY. Nobody cares more about your health than you do.

An old doctor told me, 'He who hestiates is lost...and I don't want to loose you as my patient'.

Certainly an overstatement...but he made his point to me.

Please see your doctor...

~chris

[buzzybab]

Thanks I will see the doctor on Monday