This article parallels my views on CT scans and introduced a novel term for me “incidentalomas” Read to learn more. Remember that my position on CT scans, as a layperson having had some 27 scans, is that we as patients must question the need for every scan ordered by our doctors. If you are female and the younger you are the more you should be concerned that any ordered scan is needed. This article presents both sides of the issue. My position maintains that the risks from CT over scanning for our CLL community is real. By definition we are immune compromised and deaths among us are high from Secondary Primary Malignancies. The problem is we have no study to prove or disprove the level of risk, if any, so we must be on our toes to be sure that we get only the scans we truly need. You can read more in depth on CT scans at cllsociety.org under the drop down menu title “beyond the basics”.
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I raised the same concerns about my multiple CT Scans
However being on a Clinical Drug Trial - the sponsor has set down a CT Regime.
Currently, CT Scans describe my C.L.L. disease as classed a "stable" for perhaps for over twelve months.
In my Scans Reports, changes in my nodes are measured in millimetres!
One has to ask the question as to what a CT scan adds to either your treatment decisions or to an understanding of one's CLL?
From a researcher's perspective it might be interesting to see how the internal nodes are reducing but it is questionable as to the value a CT Scan when the changes are in such small measurements.
However I can understand that there are situations where an internal lymphnode mass may threaten an organ by cutting off blood supply.
Therefore, Quoting from NHS CHoices;
"If you have a computerised tomography (CT) scan, you'll be exposed to radiation in the form of X-rays. The amount of radiation used can vary.
Radiation is measured in units called millisieverts (mSv). Different types of CT scan use different amounts of radiation:
CT scan of the head – 1.4 mSv, which corresponds to seven-and-a-half months' worth of background radiation
CT scan of the chest – 6.6 mSv, or three years' worth of background radiation
CT scan of the whole body – 10 mSv, which corresponds to four-and-a-half years' worth of background radiation
Benefits versus risks
The benefits of having a CT scan to help diagnose a medical condition, or to check the symptoms of an existing condition, will usually greatly outweigh any potential risk. CT scans are quick and accurate, and often eliminate the need for invasive surgery.
However, if you don't have any symptoms, the benefits of having a CT scan may not outweigh the risks, particularly if it leads to further unnecessary testing and added anxiety.
The benefits and risks should therefore always be weighed up before deciding to have a CT scan. It's recommended that you only have one following a medical referral."
SO IT appears that I am having the equivalent of 13 years of background radiation per year.
The above indicates that there are clear radiation risks in the use of CT scans which are a significant consideration.
If you take the time to explore the 15 essays I wrote on CT scanning I tried to break down the context in which CTs are ordered by separating Clinical Trial needs from non Trial patient management. I also give advice to ensure a patient gets the lowest dose of ionizing radiation possible as CT scanners can vary greatly. For that one needs only to read essays 14 &15 archived at cllsociety.org
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I am also in a clinical trial (phase 1). When I raise the question of radiation exposure and secondary cancers, I am told that the FDA is driving the need for the CT scans as they demand concrete evidence which CT scans (I am told) fit the bill.
Even though I have received 27 CT scans, the vast majority have been in the Clinical Trial context. The evidence for a drug company to get a drug approved necessitates internal node imaging, hence frequent CTs. I accepted the gamble to get a new type of drug (PCI-32765 aka Ibrutinib) with a need to comply with the CT scan requirement. I am here because of the drug so my gamble has already paid off.
In my Wait & Watch clinical management and standard therapy years I have refused upward of 10 CT scans. In my experience my local Oncologists, yes I had several, were handing out CT orders like they were kids' birthday party favors. Secondly, and important for patients to know, is the fact that not all CT scanners are equal. Software used on any given scanner often determines how much radiation a patient will receive. Patients need to ask.
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Frequency of CT scan during 'watch and wait'
CT scan of abdomen pelvis and chest is that a basis for starting treatment?
CT scan denied
Ct scan?
CT Scan, is it necessary in the beginning?
