CT Scan, is it necessary in the beginning? - CLL Support

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CT Scan, is it necessary in the beginning?

Zheny profile image
Zheny

Hi CLL friends,

I have a question about CAT Scan.

I just diagnosed with CLL, initial stage 0, and my hematologist ordered CT Scan just to check what's going on. I did receive blood test results and cytometry that showed B type CLL. My number of WBC and Abs lymth are slightly higher than allowed limits. No simptoms just night sweating.

Why do I need CT Scan since it's not good to have additional radiation with color contrust. Please explain me your opinion how nessecarry it is. Appreciate you help and support. Zhenya.

19 Replies
AussieNeil profile image
AussieNeilAdministrator

You probably don't need a CT scan, but I suggest that you have had one ordered because of where you live (they are more commonly used in the USA) and presumably because your specialist is not a CLL specialist, just a general haematologist that specialises in all blood cancers. It could also be that your specialist considers that there's a good reason based on your particular expression of CLL.

You have the choice of proceeding (and gaining a baseline look at what's happening inside and hopefully some reassurance confirming your stage 0 status, with the quite small risk of a secondary cancer years later), or asking for a second opinion from a recognised CLL specialist. Check out these links to see recommended specialists near you:

cll-nhl.com/p/cllnhl-doctor...

cllsociety.org/toolbox/cll-...

Meanwhile if you'd rather not have the CT scan, you can ask your specialist if there is any particular reason it has been ordered, given CLL specialists are reducing their use.

Neil

I have one every 2 years to check progression of size of internal lymph nodes. Not sure if that will continue or less often as not much has changed in the past 5 years since being diagnosed.

Cllcanada profile image
CllcanadaTop Poster CURE Hero

They are no longer recommended in asymptomatic, nearly stage CLL., HOWEVER, some doctors want a baseline...

Don’t perform baseline or routine surveillance computed tomography (CT) scans in patients with asymptomatic, early-stage chronic lymphocytic leukemia (CLL).

More

choosingwisely.org/clinicia...

Zhenya,

I too am in the early stages and questioning why all the CT scans. My local hematologist is planning on scans every six months. Based on what I am learning, this is not realistic, especially if there are no other symptoms or issues. So far, I've had two scans this year. And when I suggested a less aggressive scan protocol, his response was essentially he would not even see me for blood tests if I did not get the scans as well.

Looks like I'll be getting another doctor.

Indolent

Newdawn profile image
NewdawnAdministrator in reply to Indolent

I wouldn’t be at all happy with CT scans every 6 month Indolent unless a high level of potentially invasive bulky nodes had been detected or my spleen was abnormally high. Even then I’d want ultrasound instead.

Fortunately CT scans are not so easy to get on the NHS so doctors order them sparingly. I haven’t had one since diagnosis nearly 5.5 yrs ago when I was quite happy for a baseline to be established. I’d be interested to see now how things have developed because diagnostically they do have a real use. The numbers don’t reveal everything.

It’s a matter of balance and necessity really but the over-use of CT scans puts me off trials.

Newdawn

Zheny profile image
Zheny in reply to Newdawn

Thank you for explanations!

MsLockYourPosts profile image
MsLockYourPostsVolunteer in reply to Indolent

I would definitely be dumping a doctor who told me that, Indolent! If you give your general location others may know of someone near you.

I’ve had CLL since 2002 and I go every 6 mo. CLL is a kind of a new disease. Less than 30 yrs old. They use this charting to serve you better.

There are reasons for a CT scan at start - if nothing else to pick up extent of any swollen lymph nodes / spleen. In my case, I have one because my spleen was swollen and my haematologist suspected AIHA complication - she thus has a good reason fro getting a base-line on spleen size and checking other nodes. So I think you should ask why a scan - how will it help your doc?.

I also had an ultrasound just before my spleen came out.....(I don't believe the surgeon looked at either the CT or ultrasound scans, but that is a different matter!).........which sparks a thought. Would an ultrasound deliver the same results as a CT scan with less risk??? Anyone know? I suspect answer is ultrasound could do say spleen, but won't do all the other lymph nodes

Hi Zheny

I have SLL/CLL and underwent CT scan and borrow marrow test during 'diagnosis week'.

Now...three years on...I've just had a second CT scan to check progression of lymph nodes.

I have had swollen lymph nodes in my neck, base of the head, underarms, stomach and groin since diagnosis. They aren't terribly obvious to others so I'm lucky in that sense, but they are easy to detect from touch and a few by sight. They are bothersome at times, and uncomfortable, particularly when I'm run-down or have an infection of sorts.

From what I know about SLL, blood tests don't always provide the whole picture.

I'm 48 years old...on W&W - no treatment yet - on three monthly appointments with my wonderful haematologist - I work full-time in a busy career - I look phenomenally healthy - and I keep fairly well camouflaged with make-up on 'tired days', so as to not draw attention from one of my crazy bosses who likes to seek out the weak and get rid of them.

Tomorrow, I see my haematologist to discuss CT scan results. I worry around these times...but I'm super glad to know that my doc is being thorough.

The worst thing would be for a doc to make assumptions, pat you on the back and usher you out the door without really knowing what's going on.

CLL/SLL is a tricky business...as we all know. I'm certainly no expert, however I've checked up on the implications of CT scans out of interest's sake more than anything....and quite frankly, I have no reservation as I trust my doc and understand that for him to be able to really know the full picture of progression - particularly with SLL - CT scans from time to time, are essential.

Perhaps it would be logical to consider that GOOD doctors are not in the practice of harming patients intentionally.

All the same, I am quietly nervous about the results. Come what may.

Best of luck. Hope this info helps you.

Jules from Oz. x

Zheny profile image
Zheny in reply to peas50

Thank you, Matilda for details and I wish you health and I like your attitude!

Zheny profile image
Zheny in reply to peas50

Understand you about bosses and stressful Job. My boss is the same, mentioned that if I can't get stress here and unhealthy I need to make decision and maybe quit my job. I am closed to retirement now and have stressful Job in IT with computer s. Do you think stress at work related to CLL and can get it worse? Stupid question. Sorry.

newyork8 profile image
newyork8 in reply to peas50

"Intentionally" is the operative word...what about unintentionally?

Hi Zheng,

Neither my original hematologist nor my CLL specialist wanted a CT Scan at diagnosis. I got my first one 10 months after dx due to swelling and node pain.

I would ask him why he wants it and then make the decision. I will say that having one done gave me a comfort level knowing there was nothing there other than normal CLL stuff.

Zheny profile image
Zheny in reply to BeckyLUSA

Thanks, Becky!

Zheny - I would probably not have a problem with a baseline CT, if I were working with a specialist, but would question more than that without a clear cut reason. When I was diagnosed (2003) regular scans were the norm. I had them done yearly for two years. I haven't had one since, as nothing about my CLL indicates a need for them.

Just rec'd my CT Scan results in my 3 monthly check-up this afternoon (SLL/CLL). I've had only two CT scans in my life.... the first was three years ago, the second was two weeks ago. The scans reveal a reduction in the size of the affected lymph nodes below my neck...some new ones and more prominent ones in my throat/neck area - but nothing to worry about yet. I'm thrilled to have this knowledge...I haven't felt this sense of freedom since before dx. Wonderful. I highly recommend a CT scan at dx, particularly with SLL.

Re CT vs Ultrasound, I went back to Dr Terry Hamblin's blog to look for something unrelated and found a comment to the effect that ultrasounds could never accurately measure changes in lymph node sizes, which is why CTs are used instead.

Well, I'm sitting here this morning enjoying a "wonderful" 16 oz Barium shake for breakfast preparing for a CT scan this morning. This my 2nd CT scan in 4 years. They used the 1st CT scan as a baseline. They are doing this 2nd CT scan after my complaints of chronic fatigue and cough. I think a baseline CT scan is a great idea.

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