If all margins clear, why radiation?

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June2268
June2268 Member Posts: 1,202

Just wondering if I am crazy to think I don't need radiation.  I got good news today that all margins were clear and wondering why I would still need radiation if they got all the cancer cells out.  I understand the need for Tamoxifen, but wouldn't mind some advice from all you going through this right now.  Would or would you not do the rads????  Thank you!

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Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    Radiation reduces the chance of a local recurrence. All it takes is one little cancer cell to sneak out and create further trouble. Consider it "life insurance".

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • Jelson
    Jelson Member Posts: 1,535
    edited January 2010

     Congratulations on your good news, surgery over, no re-excision necessary!

    The mantra is lumpectomy + radiation.

    Yet, with DCIS there have been studies regarding this question - are there women who have had lumpectomies whose prognosis for recurrance won't be improved all that much by radiation? This is called the Van Nuys prognostic indicator chart for DCIS. http://www.breastdiseases.com/dcispath.htm

    There are other versions on the internet as well - so  a nice visual for you to see what some of the thinking is out there regarding dcis/lumpectomy and radiation. Age, size of dcis, grade of dcis, actual size of margins are factors which were found to be significant.

    and here is a general page on DCIS http://www.nccn.com/Breast_cancer_noninvasive.aspx

    Julie E

  • prayrv
    prayrv Member Posts: 941
    edited January 2010

    hhfheidi,

    Your first answer was probably correct due to June's dx of DCIS.  You had chemo and rads probably due to your dx of 2cm IDC triple neg.  Hope all is going well for all.

  • June2268
    June2268 Member Posts: 1,202
    edited January 2010

    Thank you so much I will be sure to check it out.....I just don't have the pathology report back yet so not sure I can use the chart.....

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

    Even with clear margins, there is a possibility that some DCIS cancer cells may remain in the breast.  DCIS cancer cells are confined to the milk ducts but they can spread around a lot within the ductal system.  And sometimes DCIS 'skips' a spot, i.e. there might be an area of DCIS and then a clear space and then another area of DCIS.  So what's as important as clear margins are the size of the margins.  A clear margin might only be 1mm in size.  With such a small clear margin, the recurrence risk is very high.  An 'ideal' clear margin is 10mm in size.  With margins of 10mm or greater, the recurrence risk is very low. 

    Radiation generally cuts recurrence risk by about 50%.  If your recurrence risk is already very low (i.e. if your margins are very large), then perhaps you may feel comfortable not having radiation.  But to make this decision, you need to know what your recurrence risk is, based on the size of your margins, plus other factors about your pathology.  Because factors about our individual pathologies go into the determination of recurrence risk, it means that recurrence risk after surgery will be different for each of us and therefore one woman's decision on whether or not radiation is necessary might be quite different than someone else's.

    Julie provided one excellent website with information about recurrence risk rates; here's another: http://theoncologist.alphamedpress.org/cgi/content/full/3/2/94/T2   You can see on this site how important margin size is to recurrence risk.

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited January 2010

    My former business partner didn't have radiation after her first BC surgery, and guess what?  They didn't get all the stray cells.  So she got to have a second surgery....make that a third surgery..... because of a dispute over margins.  So go for radiation.

    It has been four years after that fiasco and all is well with her.  But talk about not getting the right counsel!

    She was very lucky that nothing went beyond Stage 1 so she didn't need chemo.

  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited January 2010

    June, I wondered the same thing. I'm a not-bad researcher (though certainly not as good as some people around here) and it didn't take long for me to find out that the research shows a significant drop in recurrence among patients who have lumpectomy AND radiation, and some recurrence among those who only have the surgery. So... since i have two kids... and I want to decrease my chances of going through this again, I'll have the radiation, though I'm kind of un-pleased about it. But I want my recurrence risk as low as possible, so rad camp, here I come (after my surgery). Congratulations on those clear margins! To me, that's great news, and means you can start the ball rolling (and FINISH) sooner! 

  • meau28
    meau28 Member Posts: 8
    edited January 2010

    I had a double lumpectomy in May then a partial mastecomy in June and the margins were clear

    from the second surgery. My Medical Oncologist and my Radiation Oncologist both agreed because of stage, age, class, size etc. of the tumor  not to have me go through radiation. This was a group decision.

    I am on the lovely Tamoxifen  for the next five years. I have had friends who have had the kitchen sink approach but every year the thinking changes and new information makes for better informed decisions. Twenty or so years ago, regardless of the size, stage etc. it was still the Red Queen approach

    "Off with her Boob"

  • June2268
    June2268 Member Posts: 1,202
    edited January 2010

    Thank you ladies for all the advice.  I am just waiting to get the pathology report back and I will take it from there.  You guys really know what you are talking about especially Bessie, such a knowledgeable lady......Thank you again....I just love this place, everyone is so great!

  • sweatyspice
    sweatyspice Member Posts: 922
    edited January 2010

    As someone above has mentioned - research the VNPI (Van Nuys Prognostic Indicator) developed by Dr. Mel Silverstein (with the help of others, I'm sure).  If you feel like flying to SoCal, you can probably get a consult with him.  I think he only sees patients on Fridays, so you can make a weekend of it.

    Also, he trained Dr. Laura Klein (in Paramus NJ - close to Manhattan but on the other side of the George Washington Bridge).  I thnk she was on maternity leave but returning in Feb. 

  • June2268
    June2268 Member Posts: 1,202
    edited January 2010

    I see you are the same diagnosis as me, what did you choose?

  • deli
    deli Member Posts: 10
    edited January 2010

    I was diagnosed in Oct 2009 with a small DCIS in right breast. I am 49 and still have my period.  I had lumpectomy and breast reduction. My Dr and Oncologist both agreed NO RADIATION and NO TAMOXIFEN.  I am just going to be monitored very closely now. I know they say that if you have lumpectomy you have to have radiation. But, some Dr's are beginning to think that Dcis stage 0 with wide margins can sometimes be treated with lumpectomy alone. I am glad I can skip rads but I do worry because I know this is a fairly new concept. 

  • June2268
    June2268 Member Posts: 1,202
    edited January 2010

    Thank you for your reply, I am finding this so hard right now to make a descision.....I really don't want to do the wrong thing.  Do you know what they graded you as what was the area removed, I know you said it was small.  I hve gone back and forth and didn't realize that this would be this hard to make.....

  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited January 2010

    Deli, I'm happy for you. If grade 0 was my type of DCIS I think I'd opt out of the rad (esp with two doctors recommending that course) very gladly and not worry. Of course you'll continue monitoring. But these are most often slow-growing tumors.... it took a long time for yours even to emerge as stage 0... try not to worry. I think in Western medicine treatment most often moves from "most aggressive" to "less aggressive" with the passage of time. Once upon a time, DCIS was treated with mastectomy. 

  • sweatyspice
    sweatyspice Member Posts: 922
    edited January 2010

    I think there's some confusion going on between grade 0 and stage 0.  All DCIS is stage 0, but I don't think there is such a thing as grade 0.

  • June2268
    June2268 Member Posts: 1,202
    edited January 2010

    I do understand that all DCIS is a stage 0, I just didn't notice until now that your is the same grade as mine, I think that is what I was looking for.  They tell me because mine was a high grade, high nuclear and a large area that I should do the rads, but I am getting alot of people who are choosing to monitor it....I know it is all about self choice, just a hard decision and I love hearing what others might have chosen......

  • LINDAGARSIDE
    LINDAGARSIDE Member Posts: 345
    edited January 2010

    Hi June.  I too had very clear margins and no lymph node involvement.  My surgeon advised me prior to the lumpectomy that radiation would be an absolute must, regardless of the outcome of the surgery and if I didn't understand that piece of the puzzle, then I should have a masectomy.  She was very clear about it.  From my research I realize what she was saying to me is this:

    "My dear, I can save your breast with a lumpectomy...but will not be able to save your life unless you have radiation as well"  She also advised me:

    Lumpectomy and no radiation:  50% chance of recurrance

    Lumpectomy and radiation: 8% chance of recurrance

    No lumpectomy.  Masectomy and no radiaton: 8% chance of recurrance.

    I chose the latter and am very glad I did.

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

    Linda, the information that your doctor gave you is very different from anything I've seen or heard.  The fact is that it's impossible to know what someone's recurrence risk is without understanding their full pathology.  Perhaps your doctor was referring to your situation specifically, although if she gave you that information before surgery (i.e. before she knew the size of the surgical margins), then I really don't understand.  If she gave you this information after surgery, then it might very well be accurate, but these recurrence risk numbers would apply to you only.

    It is true that the recurrence risk for someone who has DCIS and just a lumpectomy, without radiation, could be as high as 50%, but from everything I've read (and I've read a lot over 4 years) that would only happen if the DCIS was high grade and if the margins were very small (<1m).  And in fact for those who have low grade DCIS and margins that are 10mm or greater, the recurrence risk, even without radiation, will be 5% or less.  Adding radiation to either situation will reduce the recurrence risk, usually by about 50%, although I've seen articles that suggest a higher benefit from radiaton and others that suggest a lower benefit.  Honestly though I've never seen a study that suggests that radiation alone could take recurrence risk down from 50% to 8%.

    What it comes down to is that recurrence risk after a lumpectomy, with or without radiation. can vary hugely by individual, based on the specifics of their pathology.  As for those who have a mastectomy, the majority of studies on DCIS women who've had mastectomies put the recurrence rate at 1% - 2%.  There have been rare studies where the rate is higher, and some where the rate is lower but 1% - 2% seems to be a good average of all the studies done on this, covering thousands and thousands of women.

    Sorry to disagree, and I'm not suggesting that radiation wasn't necessary for you and might not be necessary for Jane.  But the information that you provided is so far from anything else I've seen, and so far from my understanding of DCIS recurrence rates, that I had to comment.

  • June2268
    June2268 Member Posts: 1,202
    edited January 2010

    Thank you for your response, I just wonder because your's was invasive if that is what the difference is.....my was never invasive, very large area just not IDC what so ever!!!!  I love being able to hear what all you women have chosen and to see if that can help me make up my mind......

     Thanks for all your help ladies!!!!!

  • LINDAGARSIDE
    LINDAGARSIDE Member Posts: 345
    edited January 2010

    Hi Beesie and June...I absolutely stand corrected.  The advice my surgeon gave me was based on my particular situation...IDC and under 2cm (and I am post menopause).  She was prepared to take out more than the lump if she had to once she "got in there" but was quite certain based on what she could see by the MRI and the ultrasound and biobsy...that I'd require a lumpectomy along with radiation. 

    I appologize immediately if I've caused you concern, June.  I was over-reacting as I did not stop long enough to note that you were stage 0 and you don't have ICM.  Again, please accept my appology.  I guess my heart went into my mouth as soon as I read that you had a lumpectomy and didn't want radiation.  Oh my....foot in the mouth disease yet again.  Sealed

    Beesie is right...we are all diagnosed and treated according to our specific case...and each and every one of us are a little bit different...

    Thanks so much....again...I'm sorry  Cry

  • deli
    deli Member Posts: 10
    edited January 2010

    Hi June, My tumor was very small but it was grade 3. I had very wide margins. I know some Drs say rads no matter what but I hope some treatments are changing for certain types of DCIS.

  • dmorgan2
    dmorgan2 Member Posts: 241
    edited January 2010

    Hi June,

    I feel your pain in trying to make a decision. I think that's the hardest part of our whole ordeal! 

    I had DCIS,1 cm,grade 2 and my SN was clear. I had clear margins too (after a lumpectomy). I decided against rads; I knew from day one almost that I did not want them. (My DCIS was in the left breast.)  Even though my "case" wasn't terribly bad-- in that it could have been worse, I decided to have a mast. As it turned out, all the tissue removed was totally clear. So maybe my decision was "overkill"--but there was no way to know that beforehand. I have no regrets. My BS told me that I have a less than 1% chance of recurrence. I'll take that!!!  It is a HUGE, final decision, but I would do it again. Good luck in your decision. It really is a very personal, individual decision. From my time of dx to the time of the mx, I took 2 months to decide.

  • SoCalDawn
    SoCalDawn Member Posts: 51
    edited January 2010

    Hello all,

    I just had my set-up for rads a little over a week ago and have not started yet. I have a fair amount of anxiety about rads and would prefer not to do it for a variety or reasons. But the reasons I don't want it are, ironically, are some of the same reasons I am doing it. I am a full-time single mom who runs her own business. I know with DCIS there could be more there that is not yet visible and I really don't want to have another lumpectomy, SNB and the anxiety that goes with it. My margins were clear and wide but I was grade 3/3. Oncologist and radiation oncologist agree that % of reoccurence drops from 30% to 5% or less but DCIS "is tricky". I am not looking forward to it and I do have anxiety over dosage errors reported. I have time and again in my life been in the 1% category where "stuff happens" but at the moment I feel like the "insurance" may be worth it. My 2 cents...

  • June2268
    June2268 Member Posts: 1,202
    edited January 2010

    Hello ladies thank you all for your input....I don't know why I am having a hard time with this but I am......I have had one screw up after the other and I am now doubting everyone and everything and I am usually not like this.....I have my 1st appointment with the radiologist on Monday and I will take it from there.

    Dawn did they tell you when you were to start treatments and how many weeks do you have to go?  Mine is on the left breast and I am nervous about the possible heart and lung scarring from the rads, but if this is what I really need then I guess I have no choice.....I feel like if I had IDC and tested positive for even 1 node maybe I wouldn't be acting like this, but it seems to me that everyone regardless of DCIS/IDC that we all feel scared with the radiation treatments.  I just hope it doesn't shrink me up too much.....they took out 9x8x2.5 of tissue and I can see the difference already and I am feeling VERY self conscious, so needless to say if the rads shrink me up that much more THEN WHAT?????

    Can someone also explain mammo-site radiation or the differences of all the types of radiation out there....Beesie if you are out there reading this, I would love to hear what you have to say, you seem like such an expert and are very loved by all on board here....

    Thanks again ladies....

  • SoCalDawn
    SoCalDawn Member Posts: 51
    edited January 2010

    Hi June,

    I am scheduled for 33 treatments, 5 of which are "boost". I was hoping for partial-breast but when researched and explained, there seemed to be so many that have to come back for more, it didn't seem worth it.  

    You did have a large site removed. Did your surgeon do a flap advancement to minimize caving? I am concerned too about the shrinking of the tissue. Aware may be a better term than concern right now. Mine is on the right but I am also concerned about other issues including asthma flare-ups as I was diagnosed with "reactive airway disease" last year. I was on an inhaler daily and only in the last 2 months have I been able to get it down to once a week.  After reading posts here, I am concernd that it will come back with a vengeance after radiation.

    I keep going back and forth in my head about how much anxiety I would have wondering if there are other DCIS cells that just cannot be seen yet (not to mention other stuff that could be going on that cannot yet be seen as seems to have happened to others). Mine was very small but grade 3/3 and suspicious for microinvasion. After reading so much on here vs what is published to the general public, I really believe there is a lot they do not know about DCIS right now. I just don't want to have to go through surgery again if I can minimze my risks (I had a severe reaction to the blue dye from the SNB and wound up in ICU). So...at the end of the day...I think going through this is better. The lesser of two evils to some degree. Now, I realize those with IDC and other stages may feel that our concern is ridiculous and I get that. Perhaps like someone who has loss the use of a limb looking at someone upset about losing a finger or hand. It's still a loss that needs to be adjusted to and there are still fears and concerns to be dealt with. From that perspective, I have felt some guilt over having anxiety/concerns but it goes away when I think of the above analogy. DCIS does seem to get minimized in some circles but I think the reality is DCIS in one may grow at an exponentially different rate than DCIS in another and as the others here have echoed...until they know more about it, I guess (tonight) I am willing to err on the side of overtreating vs the possibility of undertreating. I cannot say I am at peace with it yet, but I think I am on my way. My step-sis (no blood relation) had a similar diagnosis a year before me. She opted for single mast as hers was multi-focal, though only Grade 2. The first surgeon tried to talk her into double.

    There are so many opinions out there. We can only do what feels right for us and do the best to educate ourselves from many appropriate sources. This site and these discussion forums have been a huge help to me. They are not always comforting, but I have asked a lot of questions of my providers that I probably would not have asked were it not for these boards. My next set of questions revolves around..."exactly who/how is setting, checking and double-checking the positioning and dosage during my treatments".

    Wishing you and everyone on here all the best...

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

    Hi June,

     Before you make your decision, you should get a second opinion from Dr. Michael Lagios in Tiburon, CA. He is an expert on DCIS and a world famous pathologist. He will have your films and slides Fed Exed to him and he will re-write your pathology and tell you your VNPI score. He will give you a written report and a 45 minute phone consultation. He actually worked with Mel Silverstein to invent the VNPI. The thought behind it is that everyone was getting radiation for DCIS and there was a group of woman that didn't need it and wouldn't benefit from it. He will look at the size of your margins, the size and grade of your DCIS, your age...and he will give you a score. Based on that score, he can tell you if you are a candidate for skipping the rads. I researched his consult service very well before going foward, and it was the best thing I ever did. It will give you clarity on what you are dealing with. My surgeon sends everyone for radiation, so I wanted to make sure I really needed it and I wasn't being herded along. I was told I was a 6 by the radiologist and Dr. Lagios rated me a 7. The cut off for skipping rads is a 6...so I went ahead with it after much debate. I had a terrible experience and quit after 6 treatments of 33. I will have to make a decision on what to do after my MRI at the end of March. I will be going with close observation, but I might even have a second consult in person with Dr. Lagios before I make any further decisions. Good luck!

  • deli
    deli Member Posts: 10
    edited February 2010

    Hi Sue,

    My VNPI was also a 7.  I had a small dcis in right breast. I did opt out of radiaiton and tamoxifen. My Dr and oncologist both agreed to monitor me very closely.

  • Janets1
    Janets1 Member Posts: 57
    edited February 2010

    Hi June:
    I had radiation recently for grade 3 DCIS on my left side after going through so much torment. I think I burned a hole in my computer screen from all the googling I did on the subject. When all was said and done, I felt more comfortable with my decision. I had an excellent surgeon and a wonderful radiation oncologist who spent lots of time with me and acknowledged my concerns. He even showed me the "hot spots" and how they were positioned away from my heart and lungs. Because I had such clear margins, he "promoted" me to only 28 treatments and no boosts (you may want to ask about this as an option). I had few side effects and minimal burning and it is now in the past. I know others who say the same thing - not as bad as we thought it would be. With grade 3, I just don't think there is any point in NOT having the rads. With any grade less than grade 2, I very well may have skipped it. All the best to you.

    J

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