Interesting study on Radiation treatment

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  • Beesie
    Beesie Member Posts: 12,240
    edited December 2013


    Sometimes data findings don't go out of date, and sometimes they do.


    If a study presents 5 year results, and then the study continues and the 10 year results lead to a different summary conclusion, this means that the 5 year results have in fact gone out of date. Or if another more detailed and/or longer study comes out that refutes an earlier study, that too might make the earlier findings obsolete.


    As Selena indicated, this is exactly what happened with the Tamoxifen studies. A 10 year study suggested that 10 years of Tamoxifen was no better than 5 years of Tamoxifen. So given the side effects of the drug, treatment standards recommended 5 years of Tamoxifen only. But then last year, a longer study (I can't remember if it was 15 years or 20 years) came out that showed that longer term, 10 years of Tamoxifen actually was significantly better than 5 years of Tamoxifen. And now the treatment standards have changed and that earlier study is not longer used.


    Of course many older studies remain valid. Some older studies provide better information that newer studies, if the older study ran longer or had more participants or measured more variables. But each situation must be assessed for it's own merits. If a newer study refutes an earlier study and if the newer study is statistically more reliable, then that certainly puts into question the older results. And if a study continues and the long term results differ from the interim the results, the interim results no longer have significance.

  • april485
    april485 Member Posts: 3,257
    edited December 2013


    I had a very small (5mm) DCIS and two lumpectomies to get wide margins (all were over 1cm after second lumpectomy) and yet I decided to enter a clinical trial for dose dense, partial breast rads and I for one feel very good about my decision to do so. I found VERY little literature pointing to the fact that rads do not decrease my chances for recurrence in case of stray cells and lots of literature pointing to the benefits of radiation trmt. I did NOT come to my decision lightly. I did a lot of reading and had a second opinion (who told me I could forgo radiation if I chose to) and still decided to use this most proven tool to decrease my odds of both recurrence and of dying of this disease in the future. Even with DCIS, it is the "standard of care" for a reason. It works. If I have a recurrence, about 50% of the time it will be invasive. I am not taking chances. I am throwing all we have at my disease and I feel good about doing so.


    Everyone is different and you have to make your own choices on tx that you are willing to have. My BC is in my left breast and I was shown the dosimetry diagrams prior to my rads and it did "knick" my lung in one little corner, but my heart was completely out of the field. I feel as though I made the right choice for me.


    Please ladies, think long and hard about forgoing radiation just because you fear it because your chances of cardiac events in 15-20 years really are very small and it just might save you from getting this disease twice or even three times. I was afraid of rads and was looking for reasons to say "no" to them but I am glad that I didn't in the end.


    Studies have backed up this treatment over the past many years and a few small studies do not change this imho.


    Best to all of you whether you go through with radiation or opt out. The beauty is we have a choice. I chose the best for myself.

  • NatsFan
    NatsFan Member Posts: 3,745
    edited December 2013


    mgis - you wrote: "My radiology oncologist told me that it's my choice to either get radiation or not. And, that getting it would reduce the chance of reoccurrence from 15% to 5%. I'm still conflicted but that's a big % in my opinion." Those are exactly the same percentages that I was given when I was wrestling with this question 6 years ago. My RO went to on to say that those stats meant that 90% of women in my position were radiated for no reason. 85% will not recur, whether or not they do rads. 5% will recur, whether or not they do rads. That leaves 10% of women who get a reduction in recurrence. But in my case, the studies at the time indicated there was no survival benefit with rads for me whatsoever - just a reduction in recurrence. With survival off the table, then it became a QOL issue for me. Was that 10% benefit worth the possible risks? In the end I declined rads, but that's the decision that was right for me. Another woman in my same position might make the decision to go through with rads and that would be right for her. My RO said she would be comfortable with my decision, no matter which way I went. It's a tough decision for us gals in that "grey area".


    Obviously new and ongoing studies will refine these stats, and studies may end up showing some long term survival benefits. But we can only make decisions based on the information that is available to us at the time. The decision whether or not to do rads was the hardest decision I had to make during my active treatment. I wish the best for anyone who has to wrestle with this difficult decision.

  • fd1
    fd1 Member Posts: 239
    edited December 2013

    Yikes!!  I think the clear message that we are trying to get across to any newbie that might be reading this, don't let the posted article scare you.  It is contrary to what has been observed in practice.  Your doctor will be able to summarize to you all the recent and complete research which applies to your specific situation to help you make a decision regarding rads.  :)  Happy holidays!

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013


    Thanks, Natsfan - Good clear explanation. I am among those who stood very little likelihood of benefitting from rads treatment, yet every health care provider I encountered urged me to do rads "because it is "so protective against recurrence" (and to some degree, any mets that then originate from a local recurrence). I did IMRT rads (which caused radiation necrosis for me as well), and at 11 years out as a HER2 positive who never received trastuzumab, I remain NED. But this study provides very new information about conversion by rads of other cancer cells into breast cancer stem cells, so the maximum length of time involved in the conversion to stem cells may not yet be adequately defined. And that leaves "present recommendations" in effect, whether or not there may be long-term stem cell creation for those people whose benefit was next to nil like me..

    A.A.

  • Mardibra
    Mardibra Member Posts: 1,111
    edited December 2013


    Selenas posts are logical and accurate. Im not sure how you can read and not agree. Nattys posts are generally very focused on either one study or one point of interest in one study and generally involves data taken out of context. So, its natural to me that both points of view differ. I land on the Selena side.

  • abigail48
    abigail48 Member Posts: 1,699
    edited December 2013


    anyone see the news report about the us military ship which went on a resue mission after the japanese tsunami, went unknowingly through a radiation plume from the wrecked nuclear plume & now 2+ years later are having extreme health problems

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2013


    Beesie... ATLAS study completed preliminary data. All patients had completed 5 years of Tamoxifen and then were randomized into continuing or not continuing Tamoxifen for 5 additional years. The results reported captured 15 years since all the patients initially began taking Tamoxifen. The next results should be reported at the 20 year mark.

  • DiveCat
    DiveCat Member Posts: 968
    edited December 2013


    abigail, are you really trying to say exposure to fallout radiation after a nuclear meltdown is similar in health consequences to focused radiation treatment? Because that is ridiculous.

  • abigail48
    abigail48 Member Posts: 1,699
    edited December 2013


    You say. I say radiation is very harmful. even the natural radiation from rock: radon

  • Momine
    Momine Member Posts: 7,859
    edited December 2013


    Alaska, the thing is, to me anyway, that the stem cell discovery is certainly concerning and an unhappy one. However, if it is the case, it would have been the case all along, including in the studies showing clear benefit from radiation treatment.


    Again, I do think there are cases where it is completely reasonable on a risk/benefit analysis to turn down rads. But equally there are cases, mine for example, where it would be unwise to turn it down.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013

    Momine, in the best of worlds that is all we have to go by.

    But the challenge in that is that for example there are studies that are done for 5 or 10 years and not continued beyond that point, leaving the conclusion to stand at the 10-year end of the study, whether or not it would hold true longer-term. I'm not a research scientist but I do know that in our mobile society, and particularly with a disease that primarily affects women, whose names change with marriage, following any population results long-term is in itself questionable. What is the drop-out rate for participants of long-term studies? Are those who continue for decades truly representative of the general population?  Results include those people whose cancer treatment created less immunity resistance and who then "died of something else" officially. I'm not radical about any of this to the point where I'm convinced that most patients shouldn't ever do "x" treatment. I'm only saying that when it comes to longer-term studies, it is harder to nail down with much certainty what the true results are.

    In addition, In my own situation, as I pointed out, it didn't matter to the majority of my medical providers what my particular risk was -- they were fairly unanimous in believing and claiming that regardless of my risk, "radiation is so effective" that basically only an idiot would decline it. That was just part of the medical environment bias putting pressure on patients to not question treatment.

    I accept that I am one of those patients who may suffer long-term for having done rads. (I already suffer from rads necrosis as part of the deal) for a patient who had only marginal risk and was advised to do rads.

  • Momine
    Momine Member Posts: 7,859
    edited December 2013


    Alaska, I hear you. Also in an ideal world we would all have dedicated, sensitive doctors who would engage in a reasoned dialogue. Sadly many of them do not.


    Another problem I see with a lot of the studies, not just on radiation, is that the field has moved fairly quickly in the last 20 years. Even in studies where they did follow patients for 20 years, the treatment I got 2 years ago is likely quite different from the treatment the patients in the study would have gotten.

  • Momine
    Momine Member Posts: 7,859
    edited December 2013


    Abigail, some people believe that radioactive rocks heal: http://www.youtube.com/watch?v=JIkX0-x3zEI





  • Rdrunner
    Rdrunner Member Posts: 309
    edited December 2013


    lets not forget that heart disease in the leading cause of death in NA or the western world.Its very difficult to exclude confounding factors such as diabetes, obesity, high cholestrol, bad diet and genetics as the cause of any cardiac event or condition in any study for rads . I also dont think all docs are bias, my RO and I sat down, looked at my individual cancer situation, looked at the risks and looked at the latest research, she was not bias what so ever and i never felt any pressure to choose one way or the other.

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited December 2013

    My RO was great. He spent an hour and a half with me; looking over my health history and discussing the pros and cons of radiation. He left the decision up to me and did not try to influence me one way or the other.

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited December 2013

    Rdrunner... my oncologists were the same.  They were very up-to-date with the latest results, they were both quite willing to sit down and go over the studies and the questions I had, they were both very blunt about the risk vs. benefit part of my treatment decisions based on my personal health profile.  After reading some of the stories some of the posters at BCO have to tell about how they've been treated, sometimes, by their oncologists, I shudder.  Open dialog is, always, the best.

    The issue I've taken with the original post is that, while the new findings are concerning; like momine pointed out, they must have always been there.  They couldnt' have just, suddenly, sprung to life and they must be kept in context.  If they are, then the previous studies showing a clear local recurrence benefit, and the more recent studies indicating that there is a distant recurrence benefit, as well; are all still valid even given the new stem-cell findings.  If there wasn't a benefit, then the research would reflect that from the very beginning.  Which means that, if this study is taken out-of-context and misinterpreted, it could create rampant fear among newly-diagnosed women about discussing the benefits/risks of radiation with their treatment team, leading them to refuse a treatment that has been tried- and proven to work based on that fear.   And, they would be encouraged in that fear by others.  Hence the term "fear mongering".

    I've never, ever claimed that radiation didn't have risks.  It does.  And these risks are different for every woman and her particular cancer/health profile.  What I object to is blanket statements, like "radiation will leave you with permanent heart damage" or, now, "radiation will make your cancer more malignant" when this is simply NOT the case.  For some at-risk people this is something to be concerned about and they should be talking to their doctor about it, but for a majority of women, this is simply not true.

    While the internet can be a very valuable resource, it can be dangerous, as well.  It's always best to discuss any fears and concerns with your treatment team and not rely on the University of Google or a discussion board to help you make treatment decisions.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2013

    Until my younger son became an aerospace and nuclear engineer, I had NO IDEA how "safe" radiation was.  I was very upset about the thought of him working in a nuclear environment.  Interestingly, I've spent the last few years enlightening myself about radiation.  If not for the study of radiation and nuclear medicine, how could physicians understand how patients need to be treated?  How many people have undergone nuclear stress tests and other types of nuclear imaging?  My son created a video back in college which clearly explained how radiation exists EVERYWHERE.  Whether it's in the banana you eat in the morning, or the pebbles you step on, most EVERYTHING has radiation.  And, if anyone cares to read MIT's Nuclear Engineering webpage, they can enlighten themselves by reading their position paper on nuclear energy.


    http://mitei.mit.edu/publications/reports-studies


    Furthermore, here are some myth busters with respect to the Chernobyl "disaster."


    http://pripyat.com/en/articles/ten-myths-about-chernobyl-disaster.html


    Surely, when it comes to choosing an active treatment protocol, everyone is entitled to judge for themselves what they think is safe and what isn't.  Over the last few years, I've come to view radiation as my friend and not as my enemy.

  • abigail48
    abigail48 Member Posts: 1,699
    edited December 2013


    some, not all of the smoke or co2 detectors give off nuclear radiation: not sensible

  • lisacm
    lisacm Member Posts: 32
    edited December 2013

    I have not started treatment yet because I just had surgery. I am concerned about the heart side effects  regarding radiation. With that being said, all of my doctors have recommended radiation and really I don't think I could live with myself if I didn't do everything I could possibly do to prevent this mother f$&@er from coming back.  That's just my  rather crudely stated feeling. I really think you need to have doctors that you  can trust and feel care about you and your outcome. I am grateful and consider myself lucky that I have found those type of doctors.  I really believe all three of them, the BS, MO and RO have my best interest at heart.  I am not just just an appointment to them.  It's made this entire  deision making process easier. 

  • pupmom
    pupmom Member Posts: 5,068
    edited December 2013

    Abigail, you would rather burn up in a fire or die from carbon monoxide poisoning than be exposed to the miniscule amount of radiation from detectors? Oh, and btw, have you checked your foundation for radon? You are much more likely to receive a lethal amount of radiation from that source than smoke or CO2 detectors.

  • Mardibra
    Mardibra Member Posts: 1,111
    edited December 2013

    Everything gives off some level of radiation. Good grief!

  • LtotheK
    LtotheK Member Posts: 2,095
    edited December 2013

    I had my care at an outstanding hospital, I also am surrounded by alternatives of all stripes, two of whom opted out of conventional treatments.  They both lived about the same time metastatic patients who did conventional treatment.   Everyone wants to justify their treatment choices. Please don't apply one-size-fits-all approaches to young patients who are widely understudied, and have very different needs and outcomes from their treatments.  They cannot necessarily be grouped with any findings to-date.  That's how poorly studied they are.

    Radiation is widely understood as an effective treatment to prevent local recurrence with potential for other benefits.  This article clearly states that its value is major, even though it seems to have some deleterious potential. For me, radiation's value was two-fold.  For every new local recurrence comes the risk of a difficult-to-treat new tumor, especially since I am young and BC tends to be more aggressive in the younger set. Also, I work with my hands for a living.  Avoiding a mastectomy, which has significantly impeded every person I know who got one in one way or another, is worth its weight in gold.

    I don't wish to sound rude, but the cardiac risks for modern radiation are minimal and forgoing radiation on that basis feels like conspiracy theory to me.  I'm sad to say that each and every one of us, Stage 1 and up does not have minimal chance of our disease coming back.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013

    First, I am glad that there are those who feel they have reviewed what there is to know about radiation and are quite comfortable with their own decisions about its use for their own cancers.

    From my perspective, the data simply has not been adequately gathered to demonstrate accurately what the full range of risks actually are.

    The discussions above seem to focus very narrowly upon solely the risks involved with initial radiation treatment following diagnosis. Given that the exposures to radiation include in addition whatever history of mammograms and CTs and other imaging procedurse so many patients are subjected to over time, I believe that the "guesstimates" about reasonable use of radiation would require the medical imaging facilities and providers to maintain a running count from the very first exposure all the way through the most recent one, to truly provide genuine scientific data to work with in making reasonable decisions about the risk/benefit of radiation exposures.

    That, however, might mean that providers might have to make the effort that they have failed to make thus far, by providing not just their employees in radiation departments with "badges" that maintain counts for employee exposure over time, but actually giving equal consideration to total individual patient radiation exposure over time. There is no process at present requiring that an ongoing tally be kept for each patient for exposures. At present, it is not a requirement that any provider demonstrate any awareness and evaluation of such a record of exposures when recommending or prescribing additional radiation. Without that consistent tracking and consideration, the evaluation of the effects of radiation treatment continue to not be based on accurate and complete measurement. 

  • abigail48
    abigail48 Member Posts: 1,699
    edited December 2013

    & dental xrays twice a year, the old=time shoe=store imaging, & for many years a yearly chest exray was advised

  • pupmom
    pupmom Member Posts: 5,068
    edited December 2013

    I don't know anybody who gets routine dental x-rays twice a year, or chest x-rays once a year! Those shoe store x-rays have been banned for many, many decades.

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited December 2013

    I get teeth x-rays once a year.  And yes, I was exposed to those shoe radiations as a child in the 1940s.

    And every time I break something I've had numerous x-rays. Wrist, arm, spine, hip, hand, knees etc. and two CT scans (all within the last 5 years) Can't count further back than that LOL


  • abigail48
    abigail48 Member Posts: 1,699
    edited December 2013

    I cracked an arm once, pelvis, knee went  kkskew on a fall once.  none diagnosed.  for the arm went up to the hospital & hid behind some construction & pissed every few minutes for a few hrs, it pains me now not at all.  I couldn't sit in meditation for a few months for the knee, then I could, & it still hurts when the weather is bad, likewise with the rear end.  had no exrays for any of it

  • pupmom
    pupmom Member Posts: 5,068
    edited December 2013

    Well, good for you. 

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