For patients newly diagnosed or their caregivers, I was a 63 year old patient DX (Diagnosed) in 2006 with no academic background and cannot give medical advice. I have, however, made an effort to study CLL/SLL and have been around the block with failed standard therapies which damaged my kidneys and led me to participate in a Phase I-b Clinical Trial for a drug called PCI-32765 renamed Ibrutinib or Imbruvica. This Clinical Trial likely saved my life and I am happy to report that I have achieved a CR (Complete Response) remission in the blood and lymphnodes. I am currently scheduled for my 12th CT scan session since DX with 9 of those sessions in a three year period of my Ibrutinib Clinical Trial.
This effort will be a series of postings, hopefully thought provoking to better inform you on your individual journey, whether you be a new comer to CLL/SLL or a seasoned veteran. My reason for writing about CT scanning comes from a culmination of events from reading patient posts, attendance of blood cancer Conferences, the younger CLL patient population, the variety of CT scanner technologies we will likely encounter, the complexity of understanding the amount of radiation exposure related to potential harm, my own experiences with 12 sessions of CT ionizing radiation and the explosion of new therapeutic agents all demanding Clinical Trials accompanied by multiple CT scans.
After exploring the subject of CT scanning I realized early on that the subject would be difficult, controversial and prone to misunderstandings. In the most simple terms I want YOU, as a patient or caregiver to feel the need to be an integral participant in the decision process of when to allow a CT scan. You need to be educated to be an effective advocate. Here's hoping everyone will follow along or bear with me, for it will take patience and patients with a will and perseverance to change the medical culture and its frequent CT use with the older CT scanners.
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I used to think that having one chest X ray a year was more than enough until I realised that a full CT scan of neck,chest ,abdomen and pelvis was equivalent to 270 chest X rays!! Now I feel that a CT scan only needs to be done if ABSOLUTELY necessary.
First of all, kudos to Wayne for all the work and research he has done on CLL, and for communicating this to all of us. I have certainly learned a lot from him in the past four months of my dx, and I look forward to all his posts on CT scans which I will also learn from. I just want to mention (being a physicist, and having worked both in theory and in the laboratory with radiation for my professional life) that for everything in life one should always weigh the risks vs. rewards. If you have a possible broken finger, you certainly probably don't want a CT scan initially. Also, you should not get a CT scan without a good reason as Wayne points out. Ultrasound and MRI (both of which do not include ionizing radiation) are much safer.
But there are sometimes very good reasons to get CT scans, because in some cases nothing else can image lymph nodes or body parts as well as CT scans. Each of us needs to be our own advocate and make the risk assessment based on our own situations. Don't forget that although a CT scan gives a whopping 10,000 uSv radiation dosage, flying roundtrip on an airplane from NYC to Tokyo gives about 300 uSv. Flying from NYC to SF gives about 80 uSv. If you make 10 intercontinental round trip flights from NYC every year, you already are at 1/3 of a CT Scan every year. Airline pilots tend to get the largest dose of radiation than any other profession.
Radiation is everywhere. For example, bananas give off a tiny amount of K-40 gamma rays. Fiestaware bowls and plates that are bought at stores are used by physicists to calibrate our radiation detectors since they have a nice Uranium component. Cement and ground give off measurable radiation also, some places much more than others. It is impossible to shield yourself from radiation, so the best thing to do is to minimize it as much as possible. Sometimes it could be important to get a CT scan for your health, and this should be decided upon by each patient in consultation with his physician. And, as Wayne points out, getting a CT scan from the newer and more efficient systems is always preferable.
Excellent points zevkalman. CT scans are an important diagnostic tool, not without risks, but where the benefits can outweigh the risks when they are used appropriately. Even better if you can use a newer, lower dose machine.
CT scans aren't commonly done in Australia, but I certainly appreciated having one done when I was diagnosed at stage IV, five years ago. It was reassuring to know that I didn't have any really large hidden abdominal nodes or nodes pressing on vital organs.
As zevkalman notes, we need to take into account our ionizing radiation dosage from ALL sources. UK residents would do well to read:
and others may find it of interest. "Radon is now recognised to be the second largest cause of lung cancer in the UK after smoking." Might make you rethink having granite tops in your kitchen or improving your home insulation to reduce your heating bill... Note also that the risk to smokers is 25 times that of non smokers!
Also, the risks associated with ionising radiation are not linear with dosage, with some studies actually indicating that low doses of radiation stimulate the immune system, providing a beneficial effect.
I too appreciate Wayne's efforts in educating us so that we can make and informed choice.
It is also worth bearing in mind that some CLL patients are given inappropriate scans (e.g. PET scans) by doctors not knowledgeable in CLL.
I absolutely applaud Wayne's efforts in encouraging us to be balanced and effective self advocates in terms of CT Scan use and recently rejected X-Rays that my GP recommended because I didn't feel I could justify the risks v rewards that zevkalman mentions. As a result I was offered a much more effective and revealing MRI.
I've had one CT scan since dx 2 yrs ago and for me it was a psychological necessity. I just needed to know at dx what the presenting picture was internally. Without it I think I'd have imagined a spleen the size of a football and attributed every pain to an enlarged node somewhere vital! Fortunately that wasn't the case.
I'm interested in how this information and debate unfolds. What's the additional damage that frequent radiation exposure can cause? I know the 'horse has bolted' for us CLL'ers and I wonder if that's how some medics view it. Can it cause the CLL to advance prematurely? I'm sorry if these questions sound naive.
I'm not terribly informed on this subject but I want to learn. One of the questions I've pondered is, 'are people with brittle bone disease who require masses of X Rays over the course of their lives due to fractures more prone to blood cancers and other conditions related to radiation exposure?' Are there scientific studies that people are aware of?
Sorry if you wanted questions at the end Wayne but I wanted to express interest and thanks for opening up this subject to promote discussion and encourage self advocacy.
Don't mind at all. The subject is huge and hopefully some clarification will develop as I roll out what I have learned. Your questions are not naive and I believe too many patients are overwhelmed by their condition to adequately assess the role and proper use for CT scans. I also think people are not thinking far enough ahead in their journey when scans will begin to add up.
Thanks Wayne. I've started to do some reading on the subject and am alarmed at the potential for cardiac risk from radiation. Like many people, it's probably something that I hadn't considered.
I won't keep asking questions but await further clarification as your acquired knowledge is shared. Thanks,
Hi I think the knowledge that we cll'ers receive the better able we are to make informed decisions and the more we know about our disease and its wider implications the more able we are to get the best treatment. Best regards
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