Exposure to natural radiation
Recently my daughter and her husband bought their new home in Maryland. The house has a full, below grade basement, pretty common for that part of the country.
Also common for much of the East Coast and big chunks of Appalachia and the heartland, there is concern about potential radon exposure. Radon is a radioactive gas that can leach out of naturally occurring radioactive material in the ground. Some communities require radon remediation systems (basically a pump in the basement that exchanges stale air for fresh air from the outside, thereby not allowing radon levels to accumulate). Sure enough, my daughter’s new home had a radon remediation system – except that the pump ‘sucked’. Actually, it did not suck, as it is supposed to, and that was the problem. Given my ever present worries about familial CLL I bugged her until she took care of the problem.
Below is a map of the USA color coded for the level of radon risk. Darker areas (Zone 1) are at higher risk.
How much is too much?
Day in and day out, we are all exposed to radiation from a variety of sources. Even if your home has a perfectly functioning radon remediation system, you cannot do much about cosmic radiation that sleets down on earth. Live at a high elevation? Cosmic radiation levels are higher since there is a thinner blanket of atmosphere to protect you. Do a lot of airplane travel? Your exposure has just gone up. Every ten days we get exposed to natural radiation that is the equivalent of one chest X-ray.
The most popular unit of measuring radiation is named after Professor Rolf Sievert, 1896-1966, who spent a life time researching radiation exposure. A millisievert (mSv) is a thousandth part of a sievert (Sv). There are other units of measurement (rad, rem, gray, roentgen etc) but we will stick to millisievert (mSv) for the rest of this article. Most of us get an average of 3 mSv radiation exposure every year just by living on earth.
Why the sudden interest in radiation?
A recent article in the NY times caught my eye and I decided to do some digging. Pretty interesting article with some startling quotations, I suggest you click and read the full article.
The Consumer
With Rise in Radiation Exposure, Experts Urge Caution on Tests
By RONI CARYN RABIN
Published: June 19, 2007
CT scans and X-rays are revolutionary, but they carry risks, too, a new study suggests.
“This is an absolutely sentinel event, a wake-up call,” said Dr. Fred A. Mettler Jr., principal investigator for the study, by the National Council on Radiation Protection. “Medical exposure now dwarfs that of all other sources.”
Radiation exposure and CLL
Until very recently most CLL experts would have dismissed the notion that exposure to radiation had anything to do with CLL. As the study abstract shown below reports, roughly 300,000 nuclear workers in 15 countries were studied for any increased risk of death due to CLL. As you might expect, these people had larger radiation exposure than the average Joe. But even this very large cohort study failed to prove conclusively that there was any connection between CLL and radiation exposure. But the authors point out that they could not rule out the connection either.
Just when we migth have heaved a sigh of relief and quit worrying about radiation exposure, here come two credible articles that raise the question all over again. Notice the first abstract is authored by none other than Dr. Terry Hamblin.
Leuk Res. 2008 Apr;32(4):523-5. Epub 2007 Oct 29.
Have we been wrong about ionizing radiation and chronic lymphocytic leukemia?
Hamblin, T.J.
It is almost axiomatic that chronic lymphocytic leukemia (CLL) is not caused by ionizing radiation. This assumption has been challenged recently by a critical re-appraisal of existing data. A recent paper implicated radon exposure in Czech uranium miners as a possible cause of CLL and in this issue of Leukemia Research the first paper examining the incidence of CLL among those exposed to radiation from the accident at the nuclear power plant in Chernobyl is published. It suggests that CLL occurring among the clean-up workers was of a more aggressive form than is normally seen in the community.
PMID: 17915317
As most of us are aware, one of the most important prognostic indicators in CLL is the IgVH gene mutation status. People with the mutated form can expect to have a very indolent and comfortable form of CLL while those with unmutated IgVH gene can expect a faster growing variety that needs frequent intervention and less than wonderful response to many of the available therapy options.
The next abstract (below) compared 47 CLL patients that had been exposed to radiation due to the Chernobyl (nuclear reactor in Russia) accident with a control group of 141 CLL patients that did not get exposed. A third group of 19 patients were among the clean-up workers. I would expect these poor people had the highest rates of radiation exposure. Here is the kicker: a whopping 94% of these 19 CLL patients had unmutated IgVH (as well as the most dangerous gene usage) and also had the highest risk of Richter’s transformation. Wow. I can understand why Terry Hamblin has decided to take a second look at the potential connection between radiation exposure and CLL risk factors. Whether or not radiation causes CLL, there seems to be grounds to wonder if it causes the CLL to be of a more aggressive variety.
Leuk Res. 2008 Apr;32(4):535-45. Epub 2007 Sep 25.
Chronic lymphocytic leukemia patients exposed to ionizing radiation due to the Chernobyl NPP accident–with focus on immunoglobulin heavy chain gene analysis.
Abramenko I, Bilous N, Chumak A, Davidova E, Kryachok I, Martina Z, Nechaev S, Dyagil I, Bazyka D, Bebeshko V.
Research Centre for Radiation Medicine, Academy of Medical Sciences of Ukraine, Kyiv, Ukraine.
Clinical data and immunoglobulin variable heavy chain (IgVH) gene configuration were analyzed in 47 CLL patients, exposed to ionizing radiation (IR) due to Chernobyl NPP accident, and 141 non-exposed patients. Clean-up workers of the second quarter of 1986 (n=19) were picked out as separate group with the highest number of unmutated cases (94.4%), increased usage of IgVH1-69 (33.3%) and IgVH3-21 (16.7%) genes, high frequency of secondary solid tumors (6 cases) and Richter transformation (4 cases). These preliminary data suggest that CLL in the most suffered contingent due to Chernobyl NPP accident might have some specific features.
PMID: 17897714
What is your level of exposure?
As I wrote above, all of us are exposed to radiation due to where we live, our lifestyles and the quality of our home construction. If you are curious about your own exposure, here is a link to a questionnaire that might help you determine your risk.
Used to be a medical examination meant a lot of poking and prodding, laying of hands and experienced doctors using their eyes and hands to examine patients. How things have changed! Now most of the “physical contact” stuff is done by nurse practitioners and you are lucky if your doctor so much as shakes hands with you. And for complicated stuff like the status of your spleen and the size of your deep abdominal nodes, it is easier to scribble a prescription for a CT or PET scan. Hey, insurance covers the costs, right?
Well, insurance may pay for some or most of the dollar cost, but you (as in your body) pay for 100% of the radiation exposure. As the New York Times article above points out, we have become a nation of test junkies, the more high-tech the better. The unfortunate silo mentality between different doctors and different specializations means they don’t always talk to each other. Each one prefers to get a new CAT or PET scan done to get whatever information he or she needs, not bothering to check if a prior scan done just weeks ago would suffice. Not all scans are the same or pose the same risk. It is important that we as patients understand how much radiation exposure is involved in many of the common radiology procedures. Here is a short list. You can find a more comprehensive list by clicking on this link.
Does this mean you absolutely refuse all CAT & PET scans?
No, it does not. By now you should know life with CLL is a complicated business and there are never easy or simple slam dunk answers. Should you get a scan every other week just because your doctor is a little trigger happy? Common sense suggests that might be foolish and at the very least you should be asking your doctor why the frequent CT scans are necessary and what he hopes to learn from them.
But on the other side of the coin, I have heard from patients who categorically refuse all scans, even when they are needed for making good therapy choices. As we pointed out in a prior article (“To wait or not to wait“) sometimes therapy decisions are based on the status of the disease as determined by the size of deeply buried abdominal nodes that cannot be felt by even the most experienced doctor’s fingers. Is ignorance bliss? Will you be better off by letting the darn buggers percolate untreated, getting larger and meaner over time? Or would you be better served by knowing the size of the enemy and therefore able to make sensible choices on when to initiate therapy and what would be your best therapy choice?
I cannot overstate the importance of simple garden variety commonsense in many of the decisions we have to make, in consultation with our doctors. If you are looking for easy answers that you can follow with brain-not-in-gear, you will pay a huge price for that lack of attention to detail. None of us would (or should) use CT and PET scans just because. But sometimes CLL puts us between a rock and a hard place. Use your head, ask questions, pay attention and make informed decisions. That advice goes for when and how many scans you get as well.
Please accept my apologies for the long break between articles. I and Radha (she is also our webmaster) needed to take some time off to observe a sad first anniversary of death of a beloved husband and father.
38 comments on "Does Radiation Cause or Make CLL Worse?"
Just had a CT scan this week…dr suggested another in 6 months, if all is well, not again for one year. However, in March had a PET scan, in February 3 MRI’s and in April mammosite radiation after undergoing bi-lateral lumpectomy. Diagnosed CLL/SLL in 2006. My CLL seems to be under control at this point…wondering…wondering
I worked on the uranium balls which are the heart of atomic and hydrogen bombs in the Air Force during the 1950’s. They are about the size of a grapefruit. I held them in my hand as they went sub-critical, and started spalling. (Spitting pieces of metal.) I demonstrated this to new Top Secret cleared Airmen when they came into the unit. My right hand does not look like my left hand. I know where my CLL came from. Chuck Dersher
Thanks for this timely column since we do have radon problems in Alaska and particularly in Fairbanks. I annually assess it both in the winter when all is closed up and in the summer.
Appreciate the wide range of the topics that you cover. I wonder if you have heard anything about whether the Mayo study of Green Tea is close to ;publication?
Thanks.
Jerry
Chuck, I remember washing my hands with benzene as an arrogant young graduate student. Over the years I have had more exposure to petrochemicals and refinery muck than most people. On the other hand, the only “occupational hazards” PC was exposed to was white-out and paper cuts. He got the CLL and passed away and here I sit wondering why it was him and not me.
Jerry, the green tea article has been published. It is next in line for my review. Sorry for the delay.
This is purely anecdotal. As a young teen I had athlete’s foot. Or as I learned when I was living in Holland, what the Dutch call fungus between the toes.
The dermatologist in El Paso, Texas that my family doctor sent me to happened to have a radiation machine right there in his office. So every time I went to see him (it was fully covered by my Dad’s insurance) he gave both of my feet good long and hard radiation doses.
This irresponsible creep never once suggested that I might want to consider changing my shoes and socks at lunch time. Or not wearing tennis shoes so much of the time. Or even just putting on dry socks at lunch and again when I got home from school. I went to this dermatologist many times, and I never had one conversation with him or his staff about the relationship between keeping one’s feet constantly moist and fungal growth. Or hygiene. Honest.
Well, it probably is unrelated to my CLL, but who knows?
Paul Garland
My husband had regular radiation treatments on his feet as well. He’s also had a lot of x-rays due to falls. (He has balance problems.) But, again, I’m the one with CLL. However, his regular doctor (not, of course, the one in the ER) said to limit s-rays.
Chaya,
I have often wondered about radiation exposure and my CLL diagnosis. I live in Colorado at 5000 feet and we have significant radon issues in my area. We put a mitigation system in my home when I moved in some 12 years ago. I have spent significant time on airplanes, to the tune of maybe 35-40 trips to Asia over the last decade.
I was diagnosed 6 months ago and with all the why me’s and how’s I have been through in my head this is one I have thought about.
Thanks for sending this on.
David
Chaya,
There are techniques that can be used to lower exposure slightly. A contrast study is not always needed. pre and post for example
Be well
Brian
not all radiation is equal. ie a lb is not just 16 oz… by that we mean that not all radiation is absorbed by soft human tissue with the same damaging effects… this is an interesting explantion, if it doesn’t make it more confusing.
Rad and Gray are absorbed dose units. When we look at radiation being absorbed in tissue, the absorption varies with energy, and the rad and the Gray take this energy difference into account. With a higher energy deposition in tissue, there are more rads or more Grays deposited. Now, what is a rem and what is a a Sievert? The term rem came from an acronym that means Roentgen Equivalent Man, in another words the equivalent biological damage done to human tissue. Some radiation emissions, when depositing the same energy as other radiation emissions, do more biological damage to the human organism. How does one convert? To go from rad to rem or from Gray to Sievert, you need a multiplication factor that represents the effective biological damage. Many call this a quality factor (QF). Now it is often called something else, depending on which text that you read. It might be called a biological damage conversion factor but what it truly represents is the the ratio of biological damage done for one radiation type compared to the biological damage done for another radiation type. For gamma, x-ray and beta radiation, this factor is 1. For alpha, it is 20. For neutrons it is between 3 and 10, and is generally conservatively taken as 10. What this implies is that a rad or Gray of alpha energy absorbed by soft human tissue does 20 times more damage than a rad or Gray of gamma, x-ray or beta energy absorbed. Since for gamma, x-ray and beta, the multiplication factor is 1, one rad equals one rem and one Gray equals one Sievert.
I grew up in Chicago and was radiated at Michael Reese Hospital at the age of 2.5. over 3000 rads !!! one article equated that to 5000 chest xrays. this was centered on my head and neck … I was one of 5000 children in that cohort, there were 5000 more done at Johns Hopkins. This was most definitly part of the vast human radiation experimentation being done during the cold war. That aside, xrays were the darling of that era. xrays were used for acne, shoe sizing and much more. Roger Ebert was in my cohort. I have CLL and have had predcitable thyroid tumors, salivary tumors, and multiple Squamous cell ca’s on my ear. For a long time doctors denied that this could or would affect us. They have now come out with a warning to our doctors. In part I suspect due to the fact that they have finally lost their research money to follow us up. That’s about 50 years too late for many of us, not that we could have done much after the fact.
Our parents were told this was a new wonderful less invasive method of treating various ‘benign conditions’. there is much written on this and on all the exposure to military and civilian populations during that period. It has left me with many scars, not the least of which is a more skeptical eye to medical research.
One should also know that not all imaging machines are calibrated the same, or give off the same dose. just as not all tests do. A transatlantic or military pilot might have cause to worry, But not doing a test that might help make a more informed decision is probably not going to be a winning situation. Agreed, try to get them done in one place and carry the CD with you to the docs. One interesting note is that most doctors who order these tests do not know how to read them. They rely instead on the ‘radiologists’ report, much the same way a surgeon relies on the pathology report. Neither the pathologist nor the radiologist has ever met you, nor are they likely to.
In a recent teleconference someone asked Dr. Chiorazzi if large doese of radition could cause CLL, His affirmative answer did not surprise me, but I suspect he was referring to these type of levels, not the radon in our basements. I nearly fell down laughing when a doctor recently expressed concern over an abdominal CT scan, suggested due to abdominal pressure, and other symptoms. I did the CT. His concern was due to radiation exposure. In my case that ship has long ago left the doc. Most of us are older than 2.5, and whatever has been thrown at us is water under the bridge, and it’s unlikely we will go thru enough additional exposure at this stage of our lives to make a huge difference. One thing seems clear, radiation does do damage, but it takes a long time except at extreme doses and close range, and very powerful types. Another calculation that was done by some bean counter to try to calculate what our group had been exposed to, suggested we had the same exposure as someone five miles from Heroshima, and I”m still here,,, a bit battered, but here. at 63. and I”ve had a few more than average cts pets, mri’s etc along the way. and I grew up in chicago which I note is a sone 1…..
beth fillman
Hi Chaya,
I hadn’t thought about this for years, but when I was a kid I lived in a town that had a shoe store with the coolest foot X-ray machine I had ever seen. It would show the bones in your foot right through your shoes. I made plenty of trips to this store to show my friends. Diagnosed with CLL in 1999, now I wonder if there was any connection, as I am certain there were few regulations about the strength of the radiation at that time. Very interesting informtion, as usual. Thanks again.
John
Interesting article and comments, thank you all. Radon leakage is a problem all over the world; in the UK, if you are in doubt, contact your local buildings control officer; s/he should have access to a map of your area and be able to tell you what the status of your dwelling is. Radon proof membranes can be necessary in a new build, even if you don’t have a cellar (basement US).
I used to play with the foot x ray machines as a child, and my college was very lax on the safety regs for both ionising radiation and carcinogens, who knows. 20/20 hindsight is wonderful. I don’t know of any Brit experiments on children with ionising radiation, I am aware that there may have been tests on military personnel.
I had a cat scan very early on when there was absolutly no need for one; if I had realised, I would have said no. However, further on in the course of the disease, it could be useful. Timing is everything.
thanks again.
Jane B.
Thanks Chaya. If you have any other UK folks reading this, the main place you have to worry about Radon in UK is in parts of Cornwall.
Best to you
Lawrence
Wow! And I thought I was the only one that ever got excited when I used to play with the foot x-ray machines in the shoe department of Sears (my mother worked at Sears, and as a very young child, I used take the bus into the city for a movie and when it was over, wait at Sears to come home with her…also ate a lot of hot cashews while waiting!). I wonder how many shoe salesmen or other employees near those machines contracted some kind of cancer later? They operated machines dozens, if not hundreds of times a day for years! The salesmen got pretty close as well…the machines had two “view ports” one for the salesman and one for the customer.
While I have the floor , I’d like to thank Beth Fillman for her comment above…it’s comments like her’s (and Dr. Rick’s…11qrick ) that I enjoy, as they are detailed enough and bring up enough questions to get me interested in doing more research on the topic. Which, of course, then shows me how much more complicated, confusing and involved we can get with this CLL thing.
So, from my point of view, don’t be afraid to clutter up this forum with detailed comments. Many of us appreciate the detail! And if you do, please send a few dollars to Chaya to pay for the hard drive space!
NOW to the point I was going to make…
I’ve had 2 CT scans and a PET scan since 2004, and one unrelated head scan prior to that. So I would guess that that is not too bad. That chart Chaya linked above has me receiving less than the annual average radiation levels (although the chart does not include CT scans).
I also make my dentist aware of my treatments so she does not x-ray my teeth within a year of the CT scans.
But…just for information, there is a relatively new scanner technology available now that I was first made aware of during the open house tour of our new cancer facility here at the University of Rochester.
Even though it looks and works like a CT scanner, it’s not for diagnosis but treatment. I thought I’d mention it here in this radiation topic, so that at least the rest of you are aware there is an alternative to full body irradiation now that apparently works better.
Tomotherapy is it’s name. During the open house I was discussing it with one of the doctors in attendance that day. He was excited about it because his mother has leukemia and would probably be due for a BMT for her next treatment. He was hoping that her treatment could be delayed until they completed the set up testing on the device (about 6 months then…that was over a year ago) so that they could use it on her.
Basically, it reduces the peripheral damage from the destructive radiation used to clean out the marrow, by targeting the marrow (or in the case of other cancers, the tumors) very specifically and considerably reducing any radiation “overspray” to surrounding tissue and organs.
With CLL, the currently used full body radiation method causes considerable damage to surrounding organs. Tomotherapy almost completely eliminates this damage, and also considerably reduces nausea, vomiting, diarrhea and the other unpleasant side effects of radiation treatments.
So be aware that something else is available if you are getting ready for a BMT, and ask about it. They are all over the US now, and there may be a unit near enough to you that you can have your BMT procedure done there instead of your regular cancer center.
You can read a little more about the device here:
http://www.urmc.rochester.edu/news/story/index.cfm?id=2126
Harley
Dear Chaya and fellow CLL patients,
Thank you for re-opening this question which is one I have long had. Did my exposure to radiation as an internationl flight attendant for 20 years contribute to my diagnosis of (unmutated, ZAP70 positive) CLL in 1997? Doctors have told me categorically no. Still it is intriguing to consider and I thank you giving us the opportunity to share our exposure stories. I too zapped my feet in the shoe store xray machine, although we were poor enough that trips to the shoe store were infrequent. I was so touched by what the other “bloggers” shared, because much of it is history; foot xray machines, radiation treatments to the heads of children for benign conditions and uranium balls! How mistaken can we be? (Mr. Dercher, your comments gave me chills) I don’t know if we are allowed to mention names here, but I have been a patient at the MD Anderson leukemia clinic for 4 1/2 years (although I live in PA). I particiapted in a clinical trial of FCR3 and have been in complete remission since July of 2005. I hope this continues for the rest of my life as cll is no fun at all. Still, I am grateful for the 12 years since my diagnosis at age 48 and am holding out for some of the newer cures they are working on. The diagnostic piture of cll is so much clearer now than it was 10 years ago, with the typing and Chaya’s “buckets.” My heart and soul go to all of you and to those who are no longer with us on account of this baffling disease.
Barbara in PA
Dear Chaya,
I also live in a zone 2 area in Florida. I have been exposed like all others, and I also worked full time in a hospital where in my line of work I was exposed to various levels of radiation with x ray machines while going in and out of ICU areas on a daily basis. Not sure, some think too many vitamins or Vitamin E can cause changes in the blood. I used to take a great amount of E in my younger years for skin and for help with female problems. But one can never really know. I also think of the age we are in , We are in the plastic age, think of all the chemicals we are exposed to with all the plastic products we use on a daily basis. Even the land fills can’t break this down. Why someone’s system is weaker than another to me is a mystery. I was a hairdresser for years, coloured my hair and now I have elected not to use anymore chemicals because even though I have CLL I feel less is better when it can be prevented. The article was very good. Thank you for this insightful information.
Chaya,
Thank you for an excellent article. Radiation has been on my mind for some time. Of course, I remember the foot machine and how everyone thought it was the best invention since sliced bread.
But I also remember X-rays taken in the OR. We had lead aprons, moved out of the way. Who knows the proper distance or who thought about it in an emergency. But I do know that the next time my ENT wants to do a CT on my sinuses, I will refuse or we will have a discussion. I don’t need a procedure done to be told I have a sinus infection that I have had for weeks. We can all remember these old stories. The best we can do now is be constantly aware of all this. Knowledge is Power and that is why I read your web-site.
Rita
Thanks to all, but particularly to Barbara K and Harley, and to Chaya of course for making this forum possible.
I was about to post an apology for my ‘rant’ but you gave me hope. I have become all to accustomed to rolling eyes and comments like “and do you see little green men too” even from doctors. I was one who knew early on that I had been radiated. I have studied this for years and knew I was in for trouble. Heck I’d already had a bunch.
Radiation causes cell damage, mutation, and even cell death, DEPENDING on dose, aim and type. don’t forget that one word. Radiation has also allowed us to diagnose, and even treat some cancers, but there is no doubt that it causes cancer since that is what cancer is, cell change, damage and mutation.
When I was first diagnosed I went first to the Leukemia Lymphoma Society page, sponsored by the NIH. When I checked CLL it listed causes and stated unequivocally that ionizing radiation was NOT a cause nor a potential risk factor. HUH? That sent me to my keyboard where I told them that on the surface that was an absurd comment for a ‘scientist’ to utter. Why not just leave it blank? too many questions? I did get a slight backpeddaling reply which stated that they just had not done a study on radiation as a cause for cll. I wrote back that that was not a get out of jail free comment since not doing a study does not equate with ‘no connection’ to. I think they may have changed that by now, but since I don’t regard that as my first, second or third choice of cll info sites, this does, I don’t visit there much.
It was the NIH who funded the follow up studies on most of the Human Radiation Projects, including mine.
America was in love with Radiation from it’s first discovery. There were uranium laced tooth pastes, contraceptives, mouth washes and more. (don’t you wonder where those containers are now?) My paternal grandmother died in the 1920’s of Pernicious Anemia, an old fashioned name for one of the leukemias and I wonder how much she and others fell prey to this claims made for the new cure all, Radiation.
Post WW2 US embraced Nuclear everything, bringing in Nazi scientists under The Paper Clip Project to work on secret human experiments in every major teaching hospital in the US. (search You tube under Human Radiation Experiments) These experiments are well documented tho since 9/11 much has been ‘redacted’ due to concerns for national security. (?) Underground vaults hold secrets we may never know and national security clearance is required to enter. Eileen Welsome wrote of this in The Plutonium Files. For those interested in the Military connection read why we needed two bombs in Japan… one was Plutonium, the other Uranium…. need to know?
The joint houses of congress issued a Report on Human Radiation Experiments after a long study driven by the Clinton White House and Hazel Oleary, for which she was nearly crucified. Only problem was they concluded by using the Nurenburg standards of infomred consent as OK, and issued the report the same day as the OJ verdict.
We as a society demand instant guaranteed cures, safe too. There are NO safe drugs, treatments or tests, period. Asperin can cure or kill, quite probably so can cilantro, tho I have nothing against it in tacos. just not too much, it can be cloying. We so want everything answered, fixed and ‘normal’ We blame people who get sick, blame doctors for not fixing things. I don’t. I blame dishonesty and unrealistic zeal. I blame lies and half truths.
I’m ok with good enough since many times it’s all we have. Morally, that’s a different coin. two or three sides there I suppose, but the world we’re in is made by US. It’s the only one we have here. I’ll leave that to far brighter minds to ponder for eternity. Why is a crooked letter, (my dear mother)
I wish us all honesty, and strength to go forward with questions. Some day maybe we’ll get there. In the meantime, be realistic, ask, dig, research do the best we can. Fight like hell when we can, and relax into the truth when there is no fight possible. most of all be well,
beth fillman NY
Thanks for the article, Chaya. I think it natural to wonder “why” about this disease, and shortly after my diagnosis I began to seek answers.
I was diagnosed with CLL in February of 2007, and later discovered that I had elevated WBC’s as far back as 1984, with increased lymphocytes noted in the differential in 1993. Since I had no clinical symptoms of infection, the doctor never mentioned them to me at the time.
When I was 12 years old, I developed osteomyelitis of the left tibia, and subsequently received many x-rays, normally with 3 different views each time over a period of 4-5 months. I had not yet entered puberty, and my long bones were still growing, presumably with active blood cell-producing bone marrow. I couldn’t help but wonder if there could be a connection between the x-ray exposure and my CLL.
If you are interested, you may want to look up the following article: Ionizing Radiation and Chronic Lymphocytic Leukemia. Environmental Health Perspective. 2005 January; 113(1); Jan 2005. Perhaps someone more savvy than me could provide a link. I accessed it through PubMed.
It is well written and offers an “alternative to the hypothesis that CLL is entirely insensitive to ionizing radiation effects;” rather “that radiation does influence CLL incidence, but this association is more difficult to identify via epidemiologic methods than the association between ionizing radiation and acute lymphocytic and myeloid forms of leukemia.” This time lag (often decades) between exposure to ionizing radiation and development of symptoms and subsequent diagnosis of CLL makes it difficult to prove or disprove an association between the two.
As expected, my hematologist did not think my xray exposure contributed to my CLL, but I still think it might have played a role.
Kathy Chase
I live in the mid-Hudson valley of New York…notoriously high for radon. I have talked to one doctor I knew on a social level a few years back about a correlation with cancer and he said it’s a fact…and most of his peers agree. To make matters worse, I live in a county that has an unusually high lung cancer rate. My mother died at 57 of pancreatic.
Since I was a kid I have also had ALOT of extensive dental work with, what I know now, an unusual amount of unnecessary X-rays.
I’m headed to Bethesda for the clinical trial in a few weeks. Wonder what they will say if I bring this up? Probably dismiss it all.
One piece of good news. I know this isn’t your favorite interest area, Chaya, but I take an absolute “cocktail” of well researched CAM supplements and my lymphocyte % has dropped from a high of 65% to, as of a couple of weeks ago, 24% (4 years). Bethesda probably won’t like that either!
Keep up the great work.
Jim
I know this is off the subject of radiation, but those exposed to Agent Orange in Viet Nam and then have a diagnosis of CLL are compensated.
Given that MRIs involve no ionizing radiation, why are CT scans used to check for abdominal lymphadenopathy and splenomegaly instead of MRIs? I know that CT scans are better for visualizing the lungs and chest cavity. But if the goal is simply to determine the size of the spleen, wouldn’t an MRI be just as effective? (I’m hoping this isn’t an insurance/cost issue.)
Thanks for the article, Chaya.
Tim
Tim:
I suspect the far more frequent use of CT scans rather than MRI is due to (1) cost (2) old habits die hard (3) more techs are trained to administer CT scans than MRI. Frankly, it seems to me that MRI scans will be more effective in looking at soft tissues (such as swollen lymph nodes) than CT scans (which are better at looking at bones etc).
Below is a list of comparing the pros and cons of MRI scans versus CT scans, and the link to the site where I got the comparison:
http://www.diffen.com/difference/CT_Scan_vs_MRI
Advantages of MRI over CT scans:
1. A CAT scan uses X rays to build up a picture. MRI uses a magnetic field to do the same and has no known side effects related to radiation exposure.
2. MRI has much higher detail in the soft tissues.
3. One of the greatest advantages of MRI is the ability to change the contrast of the images. Small changes in the radio waves and the magnetic fields can completely change the contrast of the image. Different contrast settings will highlight different types of tissue.
4. Another advantage of MRI is the ability to change the imaging plane without moving the patient. Most MRI machines can produce images in any plane.
5. Contrast agents are also used in MRI but they are not made of iodine. There are fewer documented cases of reactions to MRI contrast and it is considered to be safer than x-ray dye.
6. For purposes of tumor detection and identification, MRI is generally superior. However, CT usually is more widely available, faster, much less expensive, and may be less likely to require the person to be sedated or anesthetized.
7. CT may be enhanced by use of contrast agents containing elements of a higher atomic number than the surrounding flesh (iodine, barium). Contrast agents for MRI are those which have paramagnetic properties. One example is gadolinium. Iodine use may be associated with allergic reactions.
Advantages of CT Scan over MRI
1. CT is very good for imaging bone structures.
2. Some patients who have received certain types of surgical clips, metallic fragments, cardiac monitors or pacemakers cannot receive MRI scans.
3. The time taken for CT scans is shorter than taken by MRI
4. MRI cannot be done in patients who are claustrophobic as the patient has to remain inside the noisy machine for about 20-45 minutes
5. CT scans are cheaper than MRI.
Chaya – thanks so much for this information on MRIs versus CT scans as it gives us something more to discuss with doctors when this topic comes up.
I participated in a clinical trial through Dr. Byrd at OSU for FCR+Lumiliximab (beg. 12/07). I suspect that many trials may have similar requirements for multiple CT scans before during and after treatment, which I would clearly not have chosen to do were it not a part of the trial. As you have reported and Dr. Byrd, himself, told me, there does not seem to be scientific support for the routine use of CT scans for assessing response to therapy. I, for one, pushed back on this requirement during the trial and, I believe, Dr. Byrd did as well. Chaya, do you think that progress can be made in modifying what the FDA is looking for as evidence of efficacy so that fewer scans might be required in future trials?
Pat
We can only hope, Pat.
However, given how much fuss was made at the recent FDA advisory meeting regarding the results of the Humax-CD20 trials because the study did not use routine CT scans to assess response, I am not optimistic about this.
The following three paragraphs illustrate some interesting differences.
At a meeting several years ago, I asked Dr. John Byrd about atomic bomb radiation and CLL in Japan. He indicated that Japanese have almost no CLL despite the atomic radiation.
Bone density measurement is recommended for older men and women to help them avoid fractures especially of the hip (very serious). My first bone density scan was done on one of my heels via ultrasound, which is not a very good method of bone density measurement. DEXAscans are the “gold standard” because they are very sensitive and use little radiation (almost none according to the chart in Chaya’s article). Because our local hospital uses a CT scanner for bone density measurements, I decided to go to the Cleveland Clinic where I got a DEXAscan and various blood/urine tests plus a consultation with a highly qualified specialist. In September, I will get a second DEXAscan to see if I have lost bone density. To get a good comparison and also satisfy Medicare, at least two years are required between measurements.
When I was diagnosed in early 1998, I had an abdominal and pelvic CT scan. Recently I had a repeat scan at the same hospital and was amazed at how much faster the scans have become — almost as fast as a chest X-ray.
Dear Chaya,
First, let me thank you from the bottom of my heart for bringing your intelligence and tenacity to our world of CLL. I was diagnosed in 8/2007 when I got a “good news, bad news” call from the doc who had done a blood test for lymes .. “no Lymes, but we think you have CLL”. I started at about 80K abs lymphocytes and am now in the 140k range with no obvious symptoms. Because I was feeling so “normal”, I stayed away from too much detail and discussion on yours and other websites. I think each person has to balance between leading a normal life and diving into the frightening fray of detail. This year, however, my oncologist said, “Now we will start to talk about treatment” so .. I’m ready to focus more. I have lots of faith in him, so have let him get me to this point. And, at this point, I will become a much more pro-active patient.
Anyway, getting to radiation. I was intrigued by Beth’s comments as I grew up outside Chicago and had the “miracle” of radiation treatment in Evanston “to shrink my tonsils” probably about the same time she had her treatment. I also remember the shoe store on Central street where I could look at my feet with xray vision. Those poor salesmen !! In the 70’s my mother told me that I had had the treatment, about the same time there were reports of a high incidence of thyroid cancer amongst those receiving the treatment. As I live in the SF Bay Area, I found a doc at UCSF who was studying thyroids of those who had received radiation. He scanned mine, saw nothing and so I heard no more. I’ve been unable to track him down so would be interested in being directed to any current followups on those of us from the ’40’s and ’50’s who received this treatment.
And, again to Chaya, many many thanks for your dedication and honest reporting. I just made my first donation to help your work and feel we are all soooo lucky to have you by our sides.
Lynn S, Nevada City, CA and San Francisco, CA
My husband and I were camping out near Hershey park Penn when the Three Mile Island leak happened way back when. We drove into town that day to find a ghost town! When we finally found out what had happened, and packed up to leave town, our exposed skin looked slightly sunburned. I had always wondered what we were going to experience as a result of that exposure. No telling if it is related, but the two pets we had with us at the time died of cancer several years later.
Thanks Chaya for your article.
I live close to the Indian Point Nuclear Power Station and I suspect that the radiation coming from the plant may have contributed to me having CLL. One of the radioactive chemicals that is “routinely released” into the air by Indian Point (indeed by all nuclear power plants) is strontium and strontium is a known cause of leukemia because it migrates to the bones by mimicking calcium (its close neighbor in the periodic table). Not to mention that Indian Point is also leaking strontium from its spent fuel pools.
Coincidentally, I also live in an area that has a lot of granite, which emits natural radon. However the research I’ve done on radon does not lead me to believe there’s a causal link with CLL. Rather radon generally causes lung cancer.
I did have a CT scan when I was first diagnosed because my doctor wanted me to get a base line and at that point I was far too traumatized to go up against my doctor. However if faced with the choice again I wouldn’t do it as a routine test. I have stopped using radiation testing wherever possible. I do not do mammograms (opting for thermograms instead) and keep x-rays on my teeth to an absolute minimum. Having said that I would do an x-ray if I was convinced of the need for one. But I would do an in-depth risk/reward analysis first.
FYI there is currently a debate raging the in the UK about the efficacy of mammograms with some doctors/researchers suggesting that mammograms may do more harm than good. If you’re interested see this link to the NY Times article about the debate http://www.nytimes.com/2009/03/31/health/31mamm.html
Jenny
Chaya,
My mother died of metastatic breast cancer 15 days after my 23rd birthday (July 5,1981). Every year since then I have had a mammogram. Add on all the other times I’ve had xrays & cat scans (back injuries, dental, etc.) Is this the cause? Who knows, because I was a police officer/firefighter for 9 yrs and exposed to a variety of nasty fumes, chemicals.
Who knows, but now I’ve got to take care of myself. Is there any studies about how long term stress affects our bodies in relation to CLL? I know it can cause all kinds of problems with our bodies, but are we overlooking something so simple (& complex) to take into consideration?
Thank you for your site.
Cynthia
Shortly after the Chernobly Accident the first Goodwill Games were held in Moscow. I was part of the medical staff for the Games and spent 3 weeks in Russia. Since dx I have questioned the radiation exposure but have always been dismissed. In fact I was adamently dismissed from the CDC who assured me the enviromental clean-up was more than adquate and there would not have been any fall out in Moscow—I disagree. Although my CLL is only ancedotal I will con’t to question what the amount of radiation exposure was and if it relates to my CLL dx.
Mickey
My husband died this winter from CLL transformed to immonoblastic lymphoma, age 57. He never felt well enough to view this site, I have found it so helpful though I have avoided it since he died. Now I have been worried about the risks for my children and his family members.He had numerous ct scans and TBI before transplant; our IL.home was found to have radon when we sold it after 7 years there; he was a frequent flier for work; we have lived near a nuclear power plant on and off for a total of 15 years; he grew up near Akron,Oh and worked at a gas station for 4 years during college(benzene worries); we lived in Denver for 9 years. Our dog died of blood cancer as well this year.Univ of Chi.oncologist suggested geneticist.
Rosymk
I was diagnosed with CLL in March of 2008. March seems to be a bad month for me as I was diagnosed with a colloid cyst of the third ventricle ( in plain english its a brain tumor) in March of 1999. I cant even begin to count how many ct scans and MRI’s I had while I was having this dealt with. Countless. Before the surgery and after. Now that I have been diagnosed with CLL my oncologist has mentioned to me that in his opinion, radiation is what causes CLL. He has asked me if I was exposed to radiation for any reason and when I told him of the brain tumor and the ct scans he just nodded and said hmm. This has been in the back of my mind ever since and coming across this very interesting article has brought it to the foreground once again. Although cancer runs rampant in my family, no one has ever had a blood cancer before. Thanks Chaya for such an informative article and for giving us something to think about once again. This site and the original site are immeasurable in its value to us dealing with the dragon. Thanks so much for your time and love for us all. We miss PC so very much as do you and your family I am sure. He was a treasure and so are you all.
Wendy
Retired Toolmaker:
Chaya, Thanks for all of the info on CLL. I really enjoy your articles. I especially enjoy reading all of the COMMENTS. I usually understand what the comments are about, but I somehow missed something on Harley,s comment on June 28th, 2009 at 8:23 am. What does BMT stand for ?
Thanks for any help you can give me.
Hi Chaya,
I was recently looking at CLL Topics and rereading information and noted that this was the anniversary of PCs passing. Heartfelt thoughts go to you and your daughter and her family.
Endicott Johnson’s in Dormont, PA did the “cool” X-Rays on my feet to see if my shoes were fitted correctly when I was a child. I don’t know if this contributed to my CLL diagnosis or not.
Wouldn’t it be interesting if we made a grid of all the ways we were exposed to carcinogens and came up with a reason for CLL? Then, perhaps we could also have an impact on finding a cure or preventing more cases from appearing.
Stay well!
Stephanie
Sorry to come late to this discussion. I was diagnosed w/ CLL/SLL in 2002, but then in 2004 was also diagnosed with seminoma (testicular cancer). The cure rate for early-stage seminoma is > 90%. For stage 1 disease, such as mine, once the tumor is removed there is a surveillance protocol that monitors the retroperitoneal lymph nodes and the lungs for recurrence. The protocol calls for CT scans of the abdomen and pelvis along with chest x-rays every 4 months for the first three years, with decreasing frequency after that.
I brought my concerns, along with documentation supporting the accuracy of MRI, to my oncologists, who consulted with the medical center’s radiologists and then agreed to go with MRI instead of CT for my surveillance. In our discussions, I learned that my lymphoma doc was very comfortable reading CT films, but not so much with MRI (perhaps another reason that CT is more frequently ordered). Also, as Chaya points out, the MRI is more expensive than a comparable CT (at least on my EOB’s).
The potentially harmful side effects of CT contrast are fairly well-known, but there are also serious possible side-effects from the gadolinium contrast given with MRI. After my baseline MRI, we decided to forego any more contrast, as lymph nodes are apparently very easy to pick out on either CT or MRI without it.
If it was just one or two scans, I probably would not have bothered lobbying for an alternative, but the prospect of more than 12 scans in less than 5 years motivated me to do something.
I do not believe that exposing folks with compromised immune function to mutagenic agents like ionizing radiation is a good idea unless the benefits clearly outweigh the risks. One only needs to review the literature detailing how we fare with skin cancers to arrive at this conclusion.
It is also interesting to note the differences in attitude between my GU and Hem. docs. The GU guys have a treatment protocol that is 95% effective, even though it can involve fairly harsh radiation therapy, surgery, and/or platinum-based chemo. When I raised my concerns about CT radiation with the GU staff, I was initially rebuffed and my concerns dismissed. It was my Hem-Onc who first entertained my concerns and followed-up with the others, who then acceded to an alternative imaging modality. I attribute this difference to the fact that CLL has no “cook book” solution and so requires a much more thoughtful and individually-tailored approach.
Retired Toolmaker…
BMT is easier to type than “bone marrow transplant”. Sorry if I wasn’t clear!
Harley
There is a link between proximity to high voltage power lines and CLL. This was long denied by the power industry and the federal government, but studies have shown the correlation. our local power company now distributes an annual risk statement that includes the risk of cancer from electric blankets, electric analog clocks, and power lines.
We deliberately avoided buying any home closer than 1/4 mile to high voltage lines, but my wife used her half of our electric blanket for years (mine was off) so she got nightly doses for decades. She was diagnosed in 2002 with CLL>
This issue needs to be readdressed since October 2009 there have been many papers written on the subject….particularly since Cedar Sinai Hospital in LA California is fighting a class action suit from 209 patients, and the FDA is running checks on other x-ray machines manufactured by General Electric. I will provide the reference cites if you like?
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