If all margins clear, why radiation?

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited February 2010

    Janet, i totally agree about the grade 3 aspect.  Not many here seem to be concerned about grade 3 but it sure woke me up.

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

    Thanks again ladies as I love to hear from all of you out there......I had my meeting today with the radiation oncologist who explained the Van Nuys chart and I scored an 8, so not really an option for me to skid the rads as they told me anything over a 6 is a must......  She did explain to me that I would have 6 weeks and the last week being the boost and I am scheduled to be fitted next week and I believe I start the following week.  Did any of you ladies have a follow up mammogram before starting radiation.  I guess I am not looking forward to that seeing I am still sore.....more like my rib cage under the breast area as opposed to my breast, which is so lumpy and hard and I wish that would get better.  Not sure if I will ever get feeling back in the breast area as it is very numb.....and I do know that goes hand in hand.....

     I thought having the wire localization surgery along with the many mammos I wouldn't need another, but I guess I need to be all clear before starting the rads......This has been a really long few months already and I do know and should feel great that it is not at all invasive, it just SUCKS to have to be going through this as this is so time consuming!!!!!!  I keep beating myself up as I bet we all do and wonder why me?  What did I do wrong?  Too much processed foods, being overweight ever since I had my children I have carried some extra weight.....I guess this feeling is normal as well.....well off to try and get some rest and thanks again everyone!Laughing

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  • Janets1
    Janets1 Member Posts: 57
    edited February 2010

    Hi June:

    I did not have a mammogram after surgery but then again I had a much smaller area than you do.

    Sounds like you have a very conscientious team which is a good thing. 

     The time may drag for a while but once you get halfway finished and into the home stretch, you will think it all went by so quickly - and then, it will be behind you - and that is a great feeling.

     And do NOT blame yourself.......healthy women who eat right can get breast cancer too. 

    Jan

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  • 3monstmama
    3monstmama Member Posts: 1,447
    edited February 2010

    hmmmm.  Well I currently have a 9 on the Van Nuys but the real problem seems to be the margin on one side so we are going back on monday in hopes of fixing it.  I was told that if that margin went down to a 1, that would make me a 7 and in that case, I might be okay with skipping radiation if I was willing to accept those odds.

    In my case I have other considerations. My radiation would be on the left, near the heart.  My mother is currently living with heart failure [cause unknown] and only 15% function.  My father and his father died VERY young--early 50s.  It is possible that I have some genetic componant I don't even know about that might be impacted by radiation.  Plus I had plenty of radiation already in my youth in the form of chest xrays back when the doses were way way too high.

    To me the problem with taking radiation now---when the size of my DCIS is <1cm--is that it burns so many bridges.  What if I do get another type of breast cancer, a more serious invasive type?  I wouldn't be able to do radiation on that side as part of my treatment. And if I had a mastectomy, I'd be stuck doing mega reconstruction which is just not something I am interested in.

    sigh.  too many unpleasant options, aren't there?

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

    Hello ladies I found out today that there was another spot on the mammogram that showed up and possibly another surgery and it just frustrates me......I thought as some of you had said that I was on the HOME STRETCH, but I guess it looks like there may be more surgery ahead which I was totally caught off guard because I was told the margins looked great....so a very sad night and yet I have to wait until Wednesday of next week........Yell

    I also don't think I ever downplayed my DCIS grade 3, I was misreading my pathology report and thought if this is smaller than a 6 on the chart I wouldn't need radiation and as it turns out I am an 8 on the chart, so rads here I come.......

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  • SoCalDawn
    SoCalDawn Member Posts: 51
    edited February 2010

    Hi June,

    Thinking of you tonight and wishing the best for you! Are you seeing a breast cancer surgeon or a general surgeon? Sending good vibes and prayers your way for a positive outcome and wisdom for those caring for you!

    Dawn

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

    Thank you Dawn for thinking of me.....All you ladies out there are wonderful and I cannot say this enough I am so glad I found this site, it truly does help me......

    He is a surgical oncologist and the Director of the cancer center I go to, so I completely trust him......and get this he called me yesterday ( Saturday ) to tell me that I need more surgery and I thought I would have to wait till Wednesday for the whole team to meet again.......

    I talked with Nipi who made me feel better as I was concerned about a second incision in the same one and she assured me that the pain is no greater than the 1st surgery, so that does help me......My only real concern was as if this was missed on the margin that wasn't large like the others or this couldn't possibly be a new spot, too soon right?  I will ask him when I see him again, but right about now that is my only concern at the present moment.....I just hate the waiting and thought I was going to be starting rads......Oh well....

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  • PATM8848
    PATM8848 Member Posts: 13
    edited February 2010

    Hi June,     I had my wire guided wide excision lumpectomy on Jan 15th , final pathology report was DCIS stage 0 grade 2, I had good margins all around except in the top part which was only .4 to the skin,I met with the rad onco last week and she said she was ok with the margins. I get measured on wednesday and mold made and start radiation on monday feb 15th I am in hopes that this is the last of it. I am also scared of the radiation since mine is also on the left side she really explained it to me and it has put my mind at ease somewhat of course I still have a fear but I dont think I am as scared as I was, I just hope they dont screw up and aim wrong , Good Luck to you hope all goes well.. Pat

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

    Wow I feel like I am reading about me!  I also had my 1st lumpectomy on Jan 15th and was to be fitted this week on the 12th and start rads on Monday Feb 15th.....I also had 3 clear margins of 1 cm and 1 that was .04 millimeter which is where they found another spot on the mammo that there is more beyond that area..........

    Please I would love it if you could tell me how things are going with you and PM whenever you get a chance as I am nervous as well.......I wish you all the luck and stay brave as we really need to be brave strong women to endure all that is thrown our way!!!

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

    I also have my surgery on this Friday for the 2nd time around!  I hope they get it right this timeSmile

    I am not sure why I am more nervous than the 1st, maybe due to the fact that they are going through the same incision......hmmmm......only 1 wire so that shouldn't be as bad....

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  • MzJ
    MzJ Member Posts: 31
    edited February 2010

    This Forum is wonderful.    I'm reading this thread thinking "wow I have alot in common with June2268" and I burst into a huge smile when she wrote to PatM "wow I feel like I'm reading about me!"  It's great we can share and relate and help each other through all this.  

    My story is slightly different (in that I have IDC, and I had a smaller lump removed)...but my story is similar in that when all this started I didn't want to even talk about radiation and now I'm bummed that I can't start it.  I've had 3 surgeries in the past 60 days...yep all in the same incision.  First a lumpectomy.  Then on 1/11 we had to go back in to 'clean the margin'. We did, but we had to go back in on 1/29 because I had some excess swelling that needed to be relieved. (June2268, I TOTALLY know what the pain on the rib cage feels like!) I'm still having some swelling...in fact just yesterday the doc had to stick a needle in and draw out some liquid, but honestly that didn't hurt at all and my boob feels so much better today.  I was suppose to start radiation the week of 2/15 but I bet it's gonna get delayed a week or so.   

    I feel your pain, I understand your nervousness. I'm on a similar treatment timetable.  You're not alone!!  I'll be thinking of you on Friday and sending healing thoughts your way.

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  • weety
    weety Member Posts: 1,163
    edited February 2010

    I had IDC removed by a mastectomy with clear margins.  The IDC is not what is in question.  I also had extensive DCIS throughout the breast.  My path report stated that the DCIS was PRESENT at the margins (of the mastectomy.)  For that reason, I am currently undergoing rads.  I still don't understand how the DCIS could have been present at the margins.  From what I understand, DCIS is still contained within the milk ducts.  Since I had a mastectomy, all milk ducts were removed.  How can something that was contained in the milk ducts still be present at the margins????   OOOHHH, I get so frustrated trying to figure this out!  Does anyone know or even have a guess as to how this could be possible?

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited February 2010

    Wow, weety - you may have stumped the band!  Absolutely no idea.

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  • MzJ
    MzJ Member Posts: 31
    edited February 2010

    Hi Weety...check out the first paragraph and the picture on this page:  http://www.breastcancer.org/symptoms/diagnosis/margins.jsp

    My guess is that there must have been an infected duct near an edge of your breast.

    How far along into radiation are you?  How's it going for you? 

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  • weety
    weety Member Posts: 1,163
    edited February 2010

    MzJ,

    Thanks for the link.  I still don't get it though!  DCIS is not invasive, so the milk duct's outer "skin" should have been like a boundary around the DCIS, I would have thought. 

    I'm almost 1/2 way done with radiation.  So far, so good.  No major problems.

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  • SoCalDawn
    SoCalDawn Member Posts: 51
    edited February 2010

    Hi all,

    June and Pat...I start my rads on the 15th also! Have you vistied the "Feb rads" topic on here? I read all of the January posts just to get an idea of what to expect. The ladies have clearly become quite the support group for one another  with lots of suggestions too and  lots and lots of humor to lighten the load. See ya over there?!

    Dawn

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  • 3monstmama
    3monstmama Member Posts: 1,447
    edited February 2010

    well, I got my answer to my question Why Rads and its off to Rads I go at the end of March.  Surgery 2.0 got me clean margins but it also increased the size of my DCIS to 1.1 cm.  And the grade for my DCIS is high.  Per the radiation oncologist, in blind studies done on women with low to middle grade DCIS, those who did lumpectomy only with no rads had a re-occurance rate of up to 40%.  And those who did lumpectomy AND Rads had a re-occurance rate of about 5%.  Worse yet, in about 50% of the re-occurances, the cancer that came back was invasive.

    Well then.  I still think if all that was coming back was DCIS, I'd skip rads but if what comes back is likely to be bigger and badder [even more likely in my case with grade 3 DCIS], then I don't have many options.

    I want to see my monsters grow up and, as the saying goes, live long enough to be an aggrevation to my children!  Laughing

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  • lostinyk
    lostinyk Member Posts: 1
    edited February 2010

    It's clear to me that I have to ask more questions and write down more answers from the Docs...I do know that I have had 2 surgeries - the 2nd to get clear margins and it was successful.  Just saw my Onc today and will be seeing my Rad in 4 weeks for a consult. The Onc wants me to take tamoxifen after rad for 5 years - after reading other posts I am going to go see a Naturopath that is experienced with cancer patients for alternatives.  I'm not really scared, more numb.  They throw words around like it is a "pre-cancer" yet still want to do the full treatments.

    I love reading all the comments here, what a wealth of knowledge we have access to!  Thanks for being so open with your thoughts as well as info you have learned.  Good luck to everyone!

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