Radiation after DCIS or not????

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ak818
ak818 Member Posts: 6

Anyone out there that chose not to have RADS after DCIS?  I had lumpectomy on 8-30, and have met with Radiation Oncologist, but haven't made up my mind yet.  I don't like some of the side effects I am hearing about and don't know if RADS are really necessary?  Can anyone shed some light?? Thanks!!!

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  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited September 2010

    I'm still in the middle of trying to get clear margins (had a lumpectomy and a re-excision and need either more re-excision or a mastectomy). I have already decided to do radiation partly because of my DCIS grade and partly because it really does seem to drop recurrence. I don't think I am a good candidate for Tamoxifen so I think I need as much post-surgery help as possible. 

    I don't love the idea of radiation but I don't feel like I have much choice. But this is my situation, my grade, my size, and so on. I think everyone's situation is different. ,When I need to make a decision like this I generally find a few doctors and get a consensus, and I try really hard for those doctors to be ones I really like and trust. I hope this helps.

  • dsj
    dsj Member Posts: 277
    edited September 2010

    The decision about whether or not to do radiation depends on what the lumpectomy achieved:  how large are the margins, what is the grade of the DCIS, etc.  Using that information, plus other information (your age, your family history, etc.) the radiation oncologist (and in my case medical oncologist), calculate your individual risk of recurrence with and without radiation.   Radiation generally cuts your risk of recurrence down by 50%, so if your risk of recurrence is, for example,  10% before radiation, it will be 5% after.  And since half of recurrences are invasive, your risk (in my hypothetical example) of an invasive recurrence is 5% without radiation and 21/2 percent with radiation.  But these numbers are just hypotheticals.  You can't decide about whether to have radiation until  you know what your individual recurrence risk is.

     I know a lot of people are afraid of radiation because of side-effects.  In my case, I had virtually no side effects.  My skin got a little pink at the very end, and I got some itchy bumps in the creases of my breat, which my rad onc said were damaged sweat glands.l  (I had actually had these before radiation).  So for me, it was definitely worth reducing my risk by 1/2 and it was very easy to do radiation.  I am having much more difficulty with tamoxifen than I had with radiation.

  • mathteacher
    mathteacher Member Posts: 243
    edited September 2010

    Since the recent scientific findings in a study based in San Francisco, many DCIS patients are not prescribed radiation. Dr. Susan Love blogged about this, not realizing it was already put into practice.

    Also, there is no survival value in radiation anyway. It just reduces local recurrence.

    Radiation has a cardio risk, risk of esophageal cancer, risk of a radiation-caused second tumor. Radiation is not a procedure to be taken lightly. Coping with a procedure is one thing. The longer term side effects can be much more serious than the temporary burns and infection.

    Sincere best wishes in your decisions whatever they are.

  • dsj
    dsj Member Posts: 277
    edited September 2010

    You might read the thread on recurrence vs survival rates (link below).  It explains why breast cancer resesarch is framed in terms of recurrence rather than survival.  My point was that risk of recurrence is individual (your risk is not the same as mine or anyone else's), and the benefits (vs the risks) of radiation are thus also individual.  I don't think you can decide, in a vacuum, whether or not you want to do radiation; you need to decide in the context of your individual risk of recurrence.  It may be that people with a very low risk of recurrence don't need to do radiation.  But some people with DCIS have a very high risk of recurrence and that makes arguments for radiation more compelling.  DCIS is a heterogeneous disease.  You can't generalize it.  

    http://community.breastcancer.org/forum/68/topic/758136

  • mathteacher
    mathteacher Member Posts: 243
    edited September 2010

    dsj, thanks for the link to the discussion.

    If I'm correct, you're saying is a heterogeneous disease and you can't generalize about it. Then how do you turn observation into action and decision-making if the overall survival benefit is nil for a group?

    The only way you could mathematically explain any possible survival advantage for radiation to any individual would be to to accept that there must be a negative survival effect on other individuals. That is, some individual patients lived shorter lives after radiation. That's the only way you could arrive at zero survival advantage for the study group as a whole which has been the agreed upon evidence for years.

    The new biomarkers already make this decision-making easier and make DCIS a less diverse disease. The problem will be getting oncologists to use these biomarkers-- which could take ten years, according to Susan Love.

  • SJW1
    SJW1 Member Posts: 244
    edited September 2010

    I chose not to have radiation after my lumpectomy in 2007, after I consulted with Dr. Michael Lagios, a world-renowned DCIS expert and pathologist, with whom anyone can consult.

    He used the Van Nuys Prognostic Index which he co-authored with Dr. Mel Silverstein to calculate my recurrence risk at only 4 percent. It is based on your age, the size of your margins, plus the grade and size of your DCIS.With such a low risk, it did not make sense for me to go through radiation to get its approximate 50 percent reduction in risk. Dr. Lagios also did not think tamoxifen would be of much benefit to me.

    If you would like more info about any of this, please feel free to PM me, or check out my website (or both):

    https://sites.google.com/site/dciswithoutrads/home

    The good news is that because DCIS is non-invasive cancer, you can take time to research your options. You don't need to rush into any thing. 

    Best wishes for peace and good health,

    Sandie

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2010

    mathteacher, Here's how I explain the survival benefit of radiation for women who have DCIS:

    1. A. DCIS is an in-situ pre-invasive cancer (but yes, it most definitely is cancer).  An in-situ breast cancer by definition cannot move outside of the breast.  What this therefore means is that if DCIS is fully removed and there is no recurrence, the survival rate will be 100%.  The long-term survival rate of women diagnosed with DCIS is not 100%, however.  Depending on the study, it's anywhere from 96% - 98%. 

    1. B. This means that some women who are initially diagnosed with DCIS do die of breast cancer.  How?  Because they have a recurrence.  50% of recurrences are not found until they are invasive cancer.  Invasive cancer, as we all know, is life threatening.

    2. In study after study, radiation has been shown to cut the recurrence rate by 50%.  So for women diagnosed with DCIS, which is not life-theatening, using radiation to reduce the number of recurrences, which can be life-threatening, therefore must lead to increased survival.

    1 + 1 = 2.  I don't see any other way to explain it.  

    ak818, I think that dsj and sandie explained it well.  Whether or not radiation makes sense for you depends on the pathology of your DCIS, the size of your margins and your age (cancer is more aggressive in those who are younger).  For some women who have lumpectomies, radiation isn't necessary.  But for others, their recurrence risk without radiation might be unacceptably high, putting them at significant risk of invasive cancer.  There is no one-size-fits-all answer. 

    Some interesting reading:

    http://www.oncologyreport.com/breast/70915b.html  This shoots to #@!! the idea that the survival rate from DCIS is 100%.  And it also shows that radiation, combined with Tamoxifen, can be as effective or more effective than a mastectomy in reducing recurrences and increasing survival.

    http://www.ncbi.nlm.nih.gov/pubmed/11034242 This article presents data that supports the fact that DCIS mortality is driven by recurrences.

  • mathteacher
    mathteacher Member Posts: 243
    edited September 2010

    I'm copying my reply to you from another thread.

    Beesie,

    We would love to take your word for it that radiation improves overall survival. But would you please cite an actual long term study to prove your assertion: "Therefore if radiation is effective at reducing recurrences...then it must also be effective at reducing mortality."

    We have found no long term evidence to support that claim.

    Reducing the rate of LOCAL recurrence does not necessarily improve survival which is why some drugs are in the process of being taken off the market. Not all recurrences are the same. Some are local and not much of a problem. Some are distant and can be lethal. Radiation only impacts local disease-- see http://www.nejm.org/doi/pdf/10.1056/NEJMoa022152

    Thanks!

  • wyldblumusic
    wyldblumusic Member Posts: 59
    edited September 2010

    An abstract for everyone's consideration...

    BACKGROUND: To identify prognostic indicators of local recurrence (LR) in patients with ductal carcinoma in situ (DCIS) of the breast treated with breast conserving surgery (BCS) alone.

    http://www.ncbi.nlm.nih.gov/pubmed/20645008

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2010

    Thank you wyldblumusic!

    For anyone who doesn't want to look at the study that wyldblumusic posted, here's the conclusion:

    CONCLUSIONS: Women with DCIS treated with BCS alone had higher LR risk, and those with a LR were more likely to die of breast cancer. Optimal local treatment is mandatory to minimize the risk of breast cancer death for women with this curable disease.

    BCS is breast conserving surgery (i.e. lumpectomy).

    LR is local recurrence.

    I'll try to post more tomorrow but am off to make dinner now.

  • mathteacher
    mathteacher Member Posts: 243
    edited September 2010

    Wyldblumusic, thank you. But there is a problem.

    Beesie,  this study only addresses breast cancer survival, not overall survival (deaths from all causes). We are discussing whether radiation has any overall survival value--if it helps patients live longer from all causes.

    Also, this study only goes out a little over nine years. The cardiac problems and secondary cancers show up a little later contributing to raising the death of non breast cancer causes. I sent you the Fisher study which showed at 20 years, radiation makes no difference. The serious side effects of radiation, mostly on the heart, cancel out the early benefits regarding local recurrence.

    That's why breastcancer.org has a page which talks about radiation benefiting recurrence but not survival.

    Scroll down on: http://www.breastcancer.org/treatment/radiation/new_research/20060217a.jsp

    to where the doctors point out: There was no difference in overall survival in either trial between women who had radiation treatment and women who did not.

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2010

    mathteacher, you missed the point of my earlier post.  DCIS is different.  The survival rate for DCIS is 100% if there is no recurrence.  So survival from DCIS is completely and totally related to whether or not there is a local recurrence (which has the potential to lead to a distant recurrence). Reducing the risk of a local recurrence is in fact the sole objective of DCIS treatment, because it's not the DCIS itself that is dangerous (assuming it is removed before it becomes invasive); it's the recurrence that is dangerous (because 50% of recurrences are invasive).

    DCIS is not the same as invasive cancer, where both local recurrence and distant recurrence are concerns.  For those who have invasive cancer, radiation will be given in a percentage of cases where, to put to crudely, the horse has already left the barn.  This means that with invasive cancer, there will always be a percentage of cases where radiation will given and a local recurrence will be averted, but survival won't be affected. With DCIS, that will never happen. 

    I'm not suggesting that everyone who has a lumpectomy for DCIS should have radiation.  I don't think that at all.  Data shows that the most important factor in reducing recurrence risk is the size of the margins.  Personally if I had a lumpectomy with 1cm+ margins, I probably wouldn't have radiation.  I think radiation should be given selectively, as needed.  I also think that today it probably is given more than necessary.  But to imply to everyone with DCIS that radiation isn't necessary because "there is no survival value in radiation anyway. It just reduces local recurrence " is factually incorrect (for DCIS) and shows a lack of understanding of DCIS.

    The link you provided on bc.org talks about invasive cancer, not DCIS.  And the study in question did not go out long enough to fairly measure survival difference.

  • mom3band1g
    mom3band1g Member Posts: 817
    edited September 2010

    Can I ask a kind of  off=topic question?  My rads onc told me if I didn't do rads he put my rate of recurrance at "at least 35%" and with rads it would go down to 4%.  My bs told me if I didn't do rads it would come back of that she felt certain.  While I am happy with 4% I'm not sure how half of 35 equals 4!

  • redsox
    redsox Member Posts: 523
    edited August 2013

    mom

    Although I can't get from 35% down to 4%, I'll take a stab at it.  That probably also included tamoxifen.  The best average numbers for recurrence risk reduction after lumpectomy for DCIS are 50% for radiation therapy and then another 40% for tamoxifen when you are ER/PR +.  If the estimate without further treatment after lumpectomy was 35%, that would get it down to about 10%.  The doc was probably using a model which would include your results for a selected set of factors.  Depending on what factors were included in the model, how they were weighted, and your individual results, that could get down to 4%.

     edited to add: I just noticed that you had mastectomy.  The numbers I was quoting for RT and for tamoxifen were for use after lumpectomy.  I don't know what the best estimates are for post-mastectomy but it does depend very much on your specific results, where the close margins were and so forth.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2010

    ak818,

    Go to:  http://www.mskcc.org/mskcc/html/15938.cfm  (Memorial Sloan-kettering).  Click the box on the right for Risk Calculators.  Follow through to the DCIS calculator.  Fill in your information and it will calculate your risk percentage. Fill it out one time checking "yes" for radiation.  Look at your risk percentage.  Fill it out again checking "no" for radiation.  Look at your risk percentage again. You can print it out and bring it in to discuss the results with your oncologist.

    I feel for you.  After gathering and evaluating all of my medical records, and then assessing my tolerance (or lack thereof), I made a huge swing from thoughts of "watchful waiting", to a choice of a double mastectomy.  Do what you feel is the best choice for you!

    Love & Light 

  • mathteacher
    mathteacher Member Posts: 243
    edited September 2010

    Thank you for that software program.

    But I see it only is projecting risk of recurrence and ignores overall survival benefit--or lack of overall survival benefit. Is that right? Am I missing something?

  • mom3band1g
    mom3band1g Member Posts: 817
    edited September 2010

    Huh, that calculator was pretty neat.  I entered all my info and without rads it gave me a recurrance rate of 35% (after 5 yrs) and 50% (10yrs).  With rads it came up with 15% and 23% (10yr).  Maybe my mast helped bring the 15 down to 4?  Cause I like 4 a whole lot better than 15!  My med onc said I would not need Tamoxifen (yea!) because I opted for the bi-lat.  Thanks for the info.

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited September 2010

    I'm with Bessie on this.  I have read that rads reduce recurrence by 40% (my apologies I cannot remember the sources, but I am sure you can research the stats).  And of course recurrence affects mortality!  That is common sense!  Especially in a woman like me and others with grade 4 tissue density (which renders mammography useless and makes diagnosis very difficult).   If we cannot find the recurrence, how can that not affect mortality?    

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2010

    mathteacher,

    I was going to respond, but I think Fearless_One's post pretty much covers the answers to your questions.

  • mathteacher
    mathteacher Member Posts: 243
    edited September 2010

    I agree with you all that a treatment that provides less recurrence would indicate the common sense choice.

    But the evidence has shown that radiation is so hard on the heart that all the local recurrence benefits are cancelled out by the cardiac effects. Thus, even you may have less recurrence, you won't live longer. So common sense doesn't translate into overall survival.

    I'm not saying this. It's not my personal opinion. It's the result of data collected for 25 years which I've posted. I guess people are more likely to go with what they think is common sense than published medical evidence.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2010

    mathteacher,

    Didn't understand what you were trying to say, or where you were leading in your previous posts.  One of the major reasons I had a double mastectomy, rather than a lumpectomy, was that I wanted nothing to do with radiation because of how hard it can be on the body.   

  • mathteacher
    mathteacher Member Posts: 243
    edited September 2010

    Doubleornothing, I'm sorry I'm a poor writer and/or communicator of how better recurrence may not equal better survival. I need to work on this.

    Apparently the Radiation Oncologist who is the Director of breastcancer.org did not go the radiation route when she was recently diagnosed with a small cancer. From the article about her large surgery, it suggests she made a less conservative surgical choice than one might expect.

    http://www.phillymag.com/shopping_style/articles/feature_what_happens_when_one_of_the_world_s_leading_breast_cancer_doctors_gets_breast_cancer/

  • redsox
    redsox Member Posts: 523
    edited September 2010

    Mathteacher,

    You are falsely representing the Fisher article that you cited.  Here is the summary on survival:

    "The hazard ratio for death among

    the women who underwent lumpectomy alone, as

    compared with those who underwent total mastectomy,

    was 1.05 (95 percent confidence interval, 0.90 to

    1.23; P=0.51). The hazard ratio for death among the

    women who underwent lumpectomy followed by

    breast irradiation, as compared with those who underwent

    total mastectomy, was 0.97 (95 percent confidence

    interval, 0.83 to 1.14; P=0.74). Among the lumpectomy-

    treated women whose surgical specimens

    had tumor-free margins, the hazard ratio for death

    among the women who underwent postoperative

    breast irradiation, as compared with those who did

    not, was 0.91 (95 percent confidence interval, 0.77 to

    1.06; P=0.23). Radiation therapy was associated with

    a marginally significant decrease in deaths due to

    breast cancer. This decrease was partially offset by an

    increase in deaths from other causes."

    This article in fact shows that of the three arms of the study, the overall survival rates were not different enough to be statistically significant but they were:

    1. best for the lumpectomy with irradiation group

    2. next best for mastectomy

    3. worst for lumpectomy without irradiation

    Again these differences are not statistically significant.  That the result was not statistically significant is not surprising since the study did not have sufficient power to expect to find a difference at a 95% level of confidence. 

    For those who want to try to investigate themselves the reference is:

    http://www.nejm.org/doi/pdf/10.1056/NEJMoa022152

  • mathteacher
    mathteacher Member Posts: 243
    edited September 2010

    Redsox,

    You may want to reread what you just posted before claiming I made misrepresentations about Fisher's 25 year investigation:

    "Radiation therapy was associated with

    a marginally significant decrease in deaths due to

    breast cancer. This decrease was partially offset by an

    increase in deaths from other causes."

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

    redsox, you and I think alike - and are on the same schedule.  Here's a copy of a response to mathteacher that I just posted in the Alternate Treatment forum:

    **********************************

    The Fisher study, which seems to be the primary study that is driving this belief that radiation doesn't lead to increased survival, actually comes to the following conclusion:  "Lumpectomy followed by breast irradiation continues to be appropriate therapy for women with breast cancer, provided that the margins of resected specimens are free of tumor and an acceptable cosmetic result can be obtained."

    Rather than take the conclusion of the study's authors, some women here have reached their own conclusions.  If I understand correctly, the argument being made is that there is no long term survival difference between the lumpectomy only group and the lumpectomy + radiation group and therefore radiation is not necessary.  Furthermore, the case is being made that it's the radiation itself that causes increased mortality over the long term in the lumpectomy + radiation group. Reading the study report, I don't come to these same conclusions.  In fact, mathteacher, to your request that I produce evidence, let me use the Fisher study.

    What the study found is:  1) At 20 years, there is a statistically significant survival benefit within the lumpectomy + radiation group, as it relates to breast cancer mortality. In other words, over the long term there were fewer deaths from breast cancer among those who had radiation; and  2) Despite the previous finding, at 20 years there is no statistically significant difference in overall survival between the lumpectomy group and the lumpectomy + radiation group.  This is because the decrease in breast cancer deaths "was partially offset by an increase in deaths from other causes."  Key words: "Statistically significant."  "Partially offset."

    Here's how I interpret the results. While there was no statistically significant difference in overall survival, the significant reduction in breast cancer deaths in the radiation group was only partially offset, thereby leading to a directional difference in overall survival favoring the lumpectomy + radiation group.  As I calculate it, the 20 year total mortality rate for the lumpectomy group was 53.33% (304 deaths, 570 sample size) vs. only 49.91% (283 deaths, 567 sample size) for the lumpectomy + radiation group.  These results are not statistically significant; this means that we can't be 90% sure that this difference was caused by the addition of the radiation.  If the difference had been just a bit larger - 54.3% vs. 49.5%, for example - the result would be statistically significant. Alternately, if the sample size had been larger and the results unchanged, the difference would be statistically significant.  Of course if the sample size had been larger it's also possible that the results would have been different - the difference in mortality between the groups might have been lessened or it might have been increased.

    In other words, the Fisher study does not prove and is not saying that there is no difference in overall survival.  The study is saying that there is no significant difference.  That's another way of saying that they could not prove whether there is a difference or not.  The directional results lean towards showing a survival difference in favor of the radiation group but the only fair conclusion is to say that we just don't know. So I guess the study doesn't really support either position, although the data leans towards supporting the long-term benefit of radiation  - and that must be why the authors continue to recommend "lumpectomy followed by breast irradiation".

    As for the idea that it's the radiation that is causing the additional deaths within the lumpectomy + radiation group, the authors do not say this.  Instead, what they say is that "(o)ur findings also indicate the need for information about the cause of death in clinical trials with long-term follow-up"  In other words, they don't know what led to the higher death rate (non-breast cancer related) in the radiation group.  Without examining and comparing the cause of death of the women in both groups, it's impossible to say that it was the radiation that led to the higher non-breast cancer mortality rate in the radiation group.

    **********************************

    To all those with DCIS, please note that this study has nothing to do with DCIS patients - this was a study done on patients who have invasive cancer.  For that reason I wasn't going to post this reply here but since mathteacher came to this forum and keeps bringing up these non-DCIS examples, I figured that I might as well respond here as well as in the Alternate Treatment forum (which an identify discussion is going on).

  • redsox
    redsox Member Posts: 523
    edited August 2013

    mathteacher, 

    Yes, I included that in my quote and it is consistent with what I said.  Overall survival was best for lumpectomy + radiation compared to either mastectomy or lumpectomy alone but the differences are not statistically significant.

    I am glad that you are happy with having had a bilateral mastectomy and wish you the best but it is not fair to others to spread false representations.

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2010
    mathteacher, it's also not fair to suggest that Dr. Weiss passed on radiation because of any concerns she might have about radiation.  We know nothing about her diagnosis. If she had invasive cancer along with a lot of DCIS, or perhaps a multi-centric breast cancer, a mastectomy might have been her only viable option.  That was the case for me.  I had a mastectomy and I didn't have radiation but what I did - out of necessity - is not a reflection of my feelings about those treatments.  Given a choice, I would have chosen to have a lumpectomy + radiation instead of a mastectomy.  Looking back now, 5 years later, I'd still say the same thing. 
  • mathteacher
    mathteacher Member Posts: 243
    edited September 2010

    If you want to keep making charges of false misrepresentations, you will have direct false misrepresentation charges to our host as well, breastcancer.org

    See their report on this issue.

    http://www.breastcancer.org/treatment/radiation/new_research/20060217a.jsp

    The doctors wrote: There was no difference in *overall survival* in either trial between women who had radiation treatment and women who did not.

    Best wishes.

  • redsox
    redsox Member Posts: 523
    edited September 2010

    Again that is still consistent with what I said.  The studies do not have the statistical power to show a difference in survival.  The primary endpoint is recurrence. 

  • MarieKelly
    MarieKelly Member Posts: 591
    edited September 2010

    Beesie wrote: "...What the study found is:  1) At 20 years, there is a statistically significant survival benefit within the lumpectomy + radiation group, as it relates to breast cancer mortality...."

    Beesie, where in this Fisher study are you coming up with "statistically" significant in regards to breast cancer mortality??? I only see the term "marginally significant" being used  re: BC mortality comparing lumpectomy with and withour rads - and then only using analysis by log rank subtraction with other pairwise comparisions showing no significant differences in deaths due to breast cancer or other causes.   

    My understanding is that "marginally" is only approaching, but not yet reaching ,the point of statistical significance and that anything less than statistically significant could be merely the result of chance.  

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