CT SCAN

[Reeseru]

Hello Everyone! I take Iburutin, been on it for two years, now my doctor wants me get another CT scan,My thoughts For what! I am in Complete Remission, CT Scans cost so much, do I really need a CT Scan? Or what? I blood works comes back normal, Your thoughts? Please 🙏🤗

[Jetliz]

I would have thought he should have explained the reason for another CT Scan to you if only for your reassurance. Do you have a CNS contact. I have a named nurse I can contact for any questions, reassurance etc. Sometimes when you leave an appointment there's something you wish you'd mentioned or asked and I think you need that answering.

[Reeseru in reply to Jetliz]

Nope! I think she wants to get money me off of me😏, My blood is Normal! I am in the Green for almost a year,thank you for your response!

[AussieNeil Partner Administrator]

Hi Reeseru,

The international working group CLL Guidelines ashpublications.org/blood/a... state, with respect to CT scan use, with my emphasis;

3.5.2.2. CT scans. CT scans generally are not required for initial evaluation or for follow-up. The staging of CLL does not use CT scans but relies on physical examination and blood counts. Enlarged lymph nodes, if detected only by CT scan, do not change the Binet or Rai stage. It has been shown that patients with Rai stage 0 but abdominal disease detectable by CT scans may have a more aggressive course.84 This requires further investigation before recommending CT scans for routine initial evaluation of patients with CLL. On the other hand, it has been demonstrated that the majority of relapses or progressions in CLL are detected by physical examination and blood counts, not by imaging studies.85 Moreover, the decision for relapse treatment was determined by imaging studies in only 1% of patients85; therefore, the routine follow-up evaluation of CLL patients does not require CT scans.

Neil

[Reeseru in reply to AussieNeil]

Thank you Neil! I could see if my blood work was all over the place,but it's not! It's in the Green! 🤗I think my doctor wants to get money of of me,😏

[Dkozi]

My hematologist has never ordered a CT scan in the five years of having CLL.

[AkimTamiroff]

I'm not a doctor and I'm not qualified to provide medical advice, but I think your concern is justified -- not just because of the cost but also because of the health risks. There are numerous studies indicating that radiation from CTs increases the risk of cancer and genetic mutation (even for patients who are not otherwise at increased risk). Moreover, people with CLL are already at higher risk for secondary malignancies, so the effect on them may be worse. The risk from CT exposure is reportedly cumulative, so that even a CT you had years ago will increase your future risk. In addition, you may have to have CTs sometime in the future (for example, if you're in a clinical trial), which is all the more reason not to have any unnecessary ones now. Yet too many doctors seem to unthinkingly treat CTs as basically risk-free and order them as a matter of course.

On the risks of CTs, here are just a few citations obtained through a quick internet search:

Brian Koffman, Radiation Doses - What to Worry about and What to Shrug Off when we have CLL (chronic lymphocytic leukemia) (2015), bkoffman.blogspot.com/2015/...

Wayne Wells, CT Scans and Secondary Cancers (2016), cllsociety.org/2016/03/ct-s...; and Wayne Wells, CT Scans (2016), cllsociety.org/2016/03/ct-s...

Bob Levis, The Cumulative Risk of Multiple CT Scans on Blood Cancer Patients Enrolled in Clinical Trials (2021), cllsociety.org/2021/09/the-...

Shao et al., Exposure to Tomographic Scans and Cancer Risks, JNCI Cancer Spectrum (2020), academic.oup.com/jncics/art...

Cao et al., CT Scans and Cancer Risks: A Systematic Review and Dose-response Meta-analysis, BMC Cancer (2022), bmccancer.biomedcentral.com...

Lee et al., Risk of Hematologic Malignant Neoplasms From Abdominopelvic Computed Tomographic Radiation in Patients Who Underwent Appendectomy, JAMA Surgery (2021), jamanetwork.com/journals/ja...

Chien et al., Frequency of surveillance computed tomography in non-Hodgkin lymphoma and the risk of secondary primary malignancies: A nationwide population-based study, International Journal of Cancer (2015), onlinelibrary.wiley.com/doi...

Kim et al., Risk of Second Primary Malignancies among Patients with Early Gastric Cancer Exposed to Recurrent Computed Tomography Scans, Cancers (2021), mdpi.com/2072-6694/13/5/1144

Harvard Health Publishing, Radiation risk from medical imaging (2021), health.harvard.edu/cancer/r....

Good luck!

[SERVrider]

My haematologist has me do three-monthly blood draws before our telephone consultations. She's never prescribed a CT. My immunologist has never asked for a CT either. Unless there is a question over lymph nodes or the spleen, one wonders what a CT image could tell your consultant anyway.

[Big_Dee]

Hello Reeseru

I have had at least 5 CT scans, but I have very aggressive CLL with possible Richter's Transformation with the need to determine if I had massive bulky lymph nodes. Even with my ALC doubling every 2.5 months, my H/O may have been overly cautious. I would not have needed CT scans otherwise. The doctors normally do a physical examination of lymph nodes at every appointment, but not the end all. Blessings.