My wife aged (68) recently had a blood test with the results (Friday 10) she has polymyalgia and is has a compromised immune system
written on the results form "smear cells seen suggestive of CLL consider referral to haematology"
we are due to go overseas for a week tomorrow (Monday13) now living in sheer terror hoping to speak to our GP tomorrow morning (he says with fingers crossed)
appreciate any info or suggestions we are completely blindsided by this and know zero about the condition and desperately searching for knowledge
Many thanks and Regards, john
Written by
Roto
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Hello Roto, welcome to the forum. If your wife does have Cll, you have found the right place.
Learning that you have cancer is one of the scariest days of anyones life. It’s a traumatic event for most, it’s hard to sugar coat that. But a diagnosis of Cll is by no means a death sentence, it’s a very treatable cancer.
Cll is a very complex and heterogeneous disease. Heterogeneous means that it’s different for everyone. Some people with Cll never even need treatment. For them, Cll is a nothing biscuit they would have been better off not knowing they even had it
I have linked you below to an article I wrote for people newly diagnosed with Cll. It’s my attempt as a lay person to give people information about in a way that is hopefully easier to understand.
A short version might be to tell you that Cll is among the most treatable cancers there are and that newly diagnosed people, if they ever need treatment, have many treatment options, some as simple as a pill a day.
Unlike other cancers, we don’t rush to treat Cll. Indeed it’s rare that someone needs treatment at diagnosis. Many people have their doctors observe them with periodic lab work that can go for ten years or more without treating, they call that watch and wait. A lot of us call it watch and worry, in time most adjust to it.
I don’t see any reason to let this possible diagnosis interfere with your trip, but that’s a question for your doctor. Cll does tend to impair our immune systems over time, but lots of us live completely normal lives and do okay with our immune systems.
Good luck. I hope you find this information helpful. It’s normal to feel overwhelmed. And while your wife might well have Cll, I don’t think a few smudge cells equates to a definitive diagnosis. If Cll is suspected, her doctor will run a test on a sample of her blood called flow cytometry that will rule in or out Cll in most cases.
CLL isn’t a walk in the park but as Jeff indicates it is much better than most cancers. I was diagnosed in Oct 2017 and I’m doing fine. I’m on my second treatment but I'm pretty healthy otherwise. For example I’m just back from a six mile walk with my dog.
Your biggest challenge is obviously getting feedback from your doctor in time for a trip tomorrow. If you had another week to get your bearings before leaving it would be easier. But to put things in perspective your biggest downside is not going taking your trip this week. Your wife’s health on the other hand is likely very manageable so things could be significantly worse for you and her.
I do hope you are able to get to your wife’s GP in the morning to give you the confidence to make your trip.
What rotten timing for you both as you are due oversees tomorrow. But please re-wind the terror because it’s not necessary and as hard as it may be, you can safely ‘park’ this CLL suspicion and enjoy your holiday. You may find speaking to your GP isn’t as illuminating as you’d wish because many GP’s simply don’t have in-depth knowledge of CLL. It’s the haematology appt that will yield the information you need.
‘To get a CLL diagnosis, the haematologist will normally do what’s called a flow cytometry test which is a blood test to look for distinct things in the blood. ‘Peripheral blood flow cytometry is the most valuable test to confirm a diagnosis of chronic lymphocytic leukemia (chronic lymphoid leukemia, CLL). It confirms the presence of circulating clonal B-lymphocytes expressing CD5, CD19, CD20(dim), CD 23, and an absence of FMC-7 staining.’Microscopic examination of the peripheral blood smear is indicated to confirm lymphocytosis (higher number of lymphocytes). It usually shows the presence of smudge cells.’
The tell tale signs have been detected but please don’t imagine that this is some immediate, catastrophic detection that requires urgent attention. It’s a preliminary finding needing further analysis and may lead to a CLL diagnosis that may never require treatment! A third of people don’t. CLL is a slower moving condition and usually needs nothing more than monitoring at these early, early stages.
There’s plenty of time to delve and understand more but for now she has enough to contend with suffering from polymyalgia.
Enjoy your holiday, arrange to see the haematologist on your return and for now just consider this as some errant cells that treatment is ready to pounce on should it ever progress to that stage.
This site will be here to support and impart knowledge for you both.
Thank you Newdawn appreciate your reply my sister passed away some 20+ years ago due to Leukaemia so its sore subject for me, I'm aware treatment has improved since then... we're off to visit Son and grand daughters in Norway for a week its half term over there, welcome the break...thanks again
Why did you have the blood test? Imagine you found out about this only after your trip, what would be the difference? For now you cannot be sure that she has CLL. Try to put it on the back burner enjoy your trip and come back to it once you are back at home. You will need at least the flow cetometry test for confirmation of CLL. Good luck.
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