I am stage A without any lymph node enlargement, but WBC count are increasing rapidly (?) (elevating from 20 to 28 for 6 months). My doctor is planning to do CT scan twice in a year. I worry about the radiation risk of CT scan, and I can not understand why CT scanning survey is needed in the present stage; Richter transformation? If so I must have enlarged lymph nodes? Or PLL? If so, can CT scanning reveal PLL? I appreciate if you could tell me your experience (frequency of CT scanning) during watch and wait without any lymph nodes. ( How many times have you done CT scanning in a year when you do not have any lymph nodes? ) I think I do not need CT in the present state. Am I wrong?
Miee
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Miee
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ASH, the American Association of Hematology, released new 'Choose Wisely' recommendationd for early scans in CLL in December 2014. This is something to discuss with your doctor, so he is aware of this...
Richter's is rare and PLL is exceedingly rare... don't assume the worst... its not good for your health
The third recommendation of ASH’s 2014 Choosing Wisely!
campaign advises against baseline or surveillance CT scans in
patients with asymptomatic, early-stage chronic lymphocytic
leukemia (CLL). Unlike in other lymphoproliferative diseases,
CT scans are not necessary to fully stage patients with CLL. Both the
Rai and Binet staging systems are based on physical examination
findings and complete blood counts. Prognosis can be further
refined with molecular tests for mutations of established prognostic
significance. There is no evidence that baseline or surveillance CT
scans improve survival in patients with asymptomatic, early-stage CLL.
CT scans can also contribute to harm to patients. CTs are as- sociated with a small, but cumulative, risk of radiation-induced malignancy. In addition, a recent meta-analysis estimates that 30% of CT scans detect incidental findings, some of which trigger further workup, exposing patients to additional risks and adding to health care costs. This phenomenon, termed the cascade effect, is well recognized in health policy literature, with most experts recommending that the best way to curtail the cascade effect is to avoid unnecessary testing in the first place.
A rapid rise in Richter's ALC, in my case was from 34K to 136K in two weeks... white blood cell count (WBC) is a poor indicator of CLL progression, the absolute lymphocyte count (ALC) , is what you should track, perhaps annually... under 30K
WBC counts bounce around, a lot.
The average dose of a CTscan, Chest, Abdominal and Pelvic CAP, is about
20 milisieverts with contrast, lower on low dose machine, half without IV contrast.
I have had 18 scans in 17 years, most during or after treatment for CLL and 6 over the last 2.5 years post Richter's... oh, ya one CTScan without contrast ...to set up the lasers for radiotherapy...in the radiographic tattoo parlour...
Addendum
I'm in Canada, managed provincial healthcare... I have never had, in my opinon, an unecessary CTscan... infact a scan indicated lifetheatening internal nodes around my heart and right kidney... I have also had radiotherapy which is a very approximate equivalent dose of about 1500-2000 CTscans... BBQ Time!
I'm no expert at all, but twice a year at stage A seems excessive. I think Chris gives a very good answer.
Prior to treatment in my 4 years of watch and wait as I remember I had x1 CT scan total, as an NHS (National Health Service) patient. The NHS (funded by taxation) is described often as "free at the point of delivery" so as I see there is little financial motivation for doing unnecessary and perhaps non-beneficial (and potentially harmful) work.
Anyone replying to Miee, if you are happy to, could you say who your heath provider is and how that care is funded, and any thoughts on that,
Miee, you are right to question the frequency of CT scans proposed. You could accept perhaps one now, just to reassure yourself and your specialist that there are no large internal nodes or internal nodes in places of concern, but the current thinking is that CT scans are rarely required unless there's a need to check on an apparent worsening of the CLL. If you are in a trial, CT scans may be required to assess the effect of the trial drug on internal nodes and even then trial patients are rightly pushing to minimise the number required.
I had one at diagnosis nearly 6 years ago, when my leukaemia was rapidly worsening and the scan results were used to confirm I was stage 4 and to support a disability claim. Even that was considered unusual for a CLL/SLL patient. I'm in Australia.
As Chris says, haematologists don't get interested in doubling time until your ALC is above 30. It can bounce around quite a bit, so forget about it until it's above that level. Even then, don't get alarmed at higher numbers, but monitor the overall trend. I wish someone had told me that years ago and saved me much anxiety when my (low) ALC doubled in about 3 months when I was having monthly blood tests. It's not much higher now, years later, and still well under 30.
Thank you so much for replies. I have learned very much. Thank you Chris, I have now learned that if you get Richter's, ALC elevate so rapidly. I felt easy now. Everyone, thank you for telling your experiences of CT scanning, and about radiation risk inducing secondary cancers. I am going to refuse CT scanning next time.
I agree with Chris and Neil, your doctor sounds nervous and inexperienced and is likely using CT Scans for his own reassurance, I don't think it will help with early detection of transformations. You would be wise to consult a CLL specialist that understands how to monitor your disease and then the specialist can calm your primary doctor.
I was diagnosed in 2008, and treated in 2010 before I even had one scan. Since 2012 just before I enrolled in a Clinical trial I've had about 14 CT scans, so I've gone from too few to excessive. Even in my current clinical trial, my CLL expert doc allows me to refuse scans that are not supported by symptoms or logic.
Wayne Wells has published a lengthy series of postings here and on other sites about CT Scans, and how to reduce your cumulative exposure. If you search for them and digest them, you may be able to find ways to reduce your exposure by choosing a lower dose machine and get all the needed information in a single pass vs. having overlapping scans of different body areas.
BTW a WBC increase from 20 to 28 in 6 months is relatively slow. You should track your ALC over many samples and watch the trends, not only 2 data points. My ALC went from 60 to 110 in less than 3 months, so my doctor had my blood draws and clinic visits done monthly, but only started talking about treatments when I had strong "B" symptoms: fatigue, leg cramps, dropping RBC, Hgb, Hct, platelets, then a CT scan showed my spleen was 2x normal and I had several 10cm x 3cm nodes in my abdomen but no palpable nodes anywhere.
Thank you very much for your experience and valuable information. I also think that I do not need ST scanning now. I do not have any symptoms and palpable nodes. Informations in this site are really valuable and useful for me, because in Japan, it may be difficult to find CLL specialists. There are only 2,000 CLL patients in Japan, so there are probably a small number of CLL specialists, and I guess that in Japan, hematologists (even CLL specialists) may have less experience for CLL, because there are only 2,000 patients in Japan. I am lucky to communicate with many friends in this sites. I can obtain a lot of very important informations. Never obtained in Japan.
In one of Japanese acute bone marrow leukemia patients posted in his blog that patients who just obey his doctor without discussion are first killed, and patients who read papers and discuss on the methods of treatments with his doctor and decided treatment method himself survived.
Here's the first of the series of articles on CT scans and CLL which contains a link to the remaining articles if you'd prefer to just read those of most interest to you:
The website for the UK CLL Support Association is currently being upgraded, and I expect that it will later include the full series as one pdf document as well as lots of other useful reference information.
I had one when I first was diagnosed in the fall 2012 then another 2 years later in November, 2014 due to major lymph nodes changing etc. then I just had a PET scan late February due to major nodule changes...But normally he wouldn't have done the PET scan and most likely wouldn't have done the CT scan but my body isn't "typical" and he is having trouble judging some of the nodes that are bothering me...
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CT scan or not 
watch and wait (!?)
Watch and Wait
CT scan results after 3 cycles BR
CT scan series part 12 - Radiation risk video and calculator
