Chest Wall Margin 0.1mm after Mastectomy - radiation decision

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ZTeam
ZTeam Member Posts: 44

Hi All,

My postmastectomy pathology found that I had 9 cm of DCIS in my left breast. No invasion was found (in two path reviews), but the DCIS was 9cm, grade 3, with comedo necrosis. The margins were clear and mostly good except for at the chest wall, which was 0.1mm. SNB was negative. I'm 36 years old.

My RO does not recommend radiation, but will give it to me if I want it. She said that the chest wall margin doesn't concern her as the fascia, which was removed, acts as a barrier. 

Does anyone else have a similar diagnosis and what did you do? Has anyone else heard something similar from their RO regarding the chest wall margin? I need to make a decision about radiation by mid-December.

Thanks everyone! This forum has been so helpful to me.

Best,

Lisa 

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Comments

  • mom3band1g
    mom3band1g Member Posts: 817
    edited December 2011

    I had several less than 1mm chest wall margins and was told rads would def be in order.  I did them and am glad I did.  I had a lot of fatigue at the end but my skin and recon held up amazingly well!  I might seek another rad onc opinion if I were you.  HTH.

  • ZTeam
    ZTeam Member Posts: 44
    edited December 2011

    Hi Mom,

    Thanks for your very fast response!

    I find it so frustrating to get different recommendations depending on which doctor is doing the recommending! I'm concerned about long-term risks because it's my left side. Was your the left or right? Were you given any stats about the risk to your heart?

    Thanks,

    Lisa 

  • mom3band1g
    mom3band1g Member Posts: 817
    edited December 2011

    Mine was on the right side.  It is frustrating and mast with rads for DCIS is not common.  There is another thread on this forum about this very subject.  My bs and rad onc said to do it.  I also had 1 1mm anterior margin.  I'm sure someone will come along with more info regarding your heart and rads. 

  • oandtolivo
    oandtolivo Member Posts: 83
    edited December 2011

    Hi Lisa,

    I'm 35 and had a 1cm margin.  My RO told me I should have 28 Rads no question, because of grade 3 and my age.  The risks are all % here and % there, but it came down to will I regret this if I don't?   I have 6 more Rads to go and it's not as bad as I thought it would be.  I'm very burnt and my armpit is raw, but this is nothing compared to chemo.  I think the grade 3 scares even the best doctors.  What is your Her2 status?   My Mx was of the rt breast so my heart isn't getting Rads, but I'm on herceptin and that is killer on the heart.  Like I said it % here and % there.  I just want to be around for my 3 kids so I'll do whatever it takes.  I wish you the best of luck with your decision and hang in thereSmile  Tracy

  • ZTeam
    ZTeam Member Posts: 44
    edited December 2011

    Hi Mom & O,

    Thanks for your responses and sharing your experiences. I'm leaning towards not doing rads, but it's such a difficult decision.

    Anyone else going through this?

    Thanks,

    Lisa 

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2011

    Lisa,

    Here's a link to the thread that mom3band1g mentioned.  You'll see that there are a few others who've gone through this.  I didn't - but then I was diagnosed 6 years ago and back then it was virtually unheard of for someone who had a mastectomy for DCIS to be recommended radiation. Today's it's changing.

    DCIS, BMX/MX, and radiation ladies http://community.breastcancer.org/forum/68/topic/774625

    Have you talked to a medical oncologist?  I'd recommend both a 2nd opinion from a radiation oncologist and a discussion with a medical oncologist.  To make this decision you need to have some information from them about your estimated risk of recurrence if you don't have radiation, and how much that risk would be reduced if you do have radiation.  Then you can decide if the reduction in risk is worth it to you or not.  

  • velutha
    velutha Member Posts: 102
    edited December 2011

    Agree w/ beesie. Will you be on tamoxifen?

  • ZTeam
    ZTeam Member Posts: 44
    edited December 2011

    Hi,

    Beesie and Velutha, thanks for your responses. I haven't met with a medical oncologist yet, I have an appt in mid-December. My RO said that they don't recommend tamoxifen for DCIS here (I'm in Vancouver, Canada).  

    My RO said the usual risk of recurrence without radiation after a mastectomy (for pure DCIS) is about 1-2%. However, she said that because of my age, the extent of my DCIS, the high grade and comedo necrosis, my risk of recurrence without radiation would be a bit higher. She thought about 3 - 5%. I showed her the articles that were discussed in the thread 'DCIS, BMX/MX and radiation ladies' that present a range of 1.7% - 16% risk of recurrence. She said that these were very small studies and that this area is very controversial. My sense was that they just don't know yet.

    The studies are small. The Rashtian study of <2mm margins had only 31 ladies in it (16% recurrence risk) and the Carlson study of <1mm margins had only 19 (10.5% recurrence risk). With study sizes this small, the margin of error is very large. For the Rastian study, it's nearly 13% with a 95% confidence interval (i.e., we're 95% confident that that risk of recurrence is 16% +/- 13%) and for the Carlson study it is nearly +/-14%.

    Another problem the small study sizes present is that the risks of recurrence may be more the result of the quality of the surgeons, pathologists, or protocols (e.g., removal of fascia) at the institution rather than an actual indication of increased risk. It's also possible that the result is accurate. The point is that we just don't know, which makes it very difficult to make a decision.  

    I will be getting a couple of other opinions and will post them here.

    Best,

    Lisa 

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited December 2011

    Hey Lisa (yep found your thread!),

    That is interesting the margin of error calculation you did - can you explain that?  Since they applied a Poisson regression analysis (some kind of fancy statistical test...I am NOT a statistics expert! LOL)...doesn't that account for the small sample size?  The study (I have an actual copy if you are interested and don't have it) showed 16% (5 of 31 pts with margins < 2 mm) recurred (p = 0.0356).  They said this was statistically significant (significance was evaluated using a two-sided p < 0.05).   They were able to look at recurrence rates combining < 2 mm with other features such as high grade (25%), comedonecrosis (25%),  age < 60 (12%) and said that although the absolute risk of recurrence was greater for patients with these additional features, they were unable to demonstrate a statistically significant difference in the local failure rate; they said the lack of statistical significance may have been b/c of the small # of patients in this subgroup. 

    Beyond the question of how many patients were in this study (which does still concern me!), here is something of even more interest.  Of the 6 patients that recurred, the fascia was removed in only 1 patient and left intact in 3; for 2 patients, not enough info was provided to determine if the fascia had been removed or not.  So, if you have had your fascia removed (like we both did), you may want to question this study a little harder, wouldn't you? 

    On the other hand, this is scary...on relapse ALL six patients with a local recurrence had an invasive component in their paths...3 developed METS (2 simultaneous with local recurrence, one 5 yrs after the local recurrence)...one of these 3 eventually died from her METS.  Frown  The other 3 patients with local recurrence underwent "salvage therapy"  and were alive with NED at last follow-up.   They noted that these findings were unexpected, b/c in lumpectomy trials, only 1/2 of the patients that recur have invasive disease at relapse.  They stated "These findings potentially signify that local recurrence after MX carries a worse prognosis than after lumpectomy for patients with DCIS.  That 1/2 of our patients with local recurrence also developed distant METS supports this argument.  Therefore, it would seem beneficial to minimize the risk of local recurrence for these patients."  

    All of that really scares me.  At the same time, I don't know how much weight I should apply to this study since my fascia was removed, and my close margin on my L side is the deep margin.  Hmmmmm....still waffling!  

    I hope I didn't make you worry more with this, but if it were me, I'd rather know all the potential factors to consider in making my decision, even if it confuses me more.  My analysis paralyis continues.... 

    P.S.  The median time for recurrence for the 6 patients who recurred in this study was 42 months from MX.  My question then, is, what does this mean the lifetime recurrence risk is?  Can we extrapolate from that 16% - does it go higher or lower as time goes on?  I have no idea how that works, but would be interested in hearing other's thoughts on that.  

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited December 2011
    Oh, also, the authors of the Rashtian study talked about the Carlson study.  They said 2 of 19 patients with surgical margins < 1 mm (10.5%, as you said), recurred.  However, the difference was not statistically significant.  "Given this lack of statistical evidence plus that all patients in that study were treated with SSM, it is rather difficult to draw any firm conclusions regarding the predictions of local recurrence."  I don't have an actual copy of the Carlson study, and its pub med abstract doesn't say this, so I found that quite interesting! 
  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited December 2011

    Zteam - I've done some research and answered my question about the confidence interval/margin of error.  I totally get it now - wow...that is a BIG margin of error!  

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2011

    I agree that the sample sizes are small and the margin of error is large with these studies.  I'm a research junkie and I often highlight these types of concerns with other studies (HER2+ and DCIS, for example, where there are a bunch of conflicting studies and all are small with large margins of error).

    What's different for me with this one is that the result is so intuitive.  Dozens of studies have confirmed that after a mastectomy for DCIS, the recurrence rate is 1% - 2%.  And what causes a recurrence?  A recurrence is caused when some cancer cells are left in the breast after surgery and are not in some other way killed off (radiation and/or hormone therapy). At some point in the future - maybe in 3 months or maybe in 3 years or maybe in 13 years, these remaining cancer cells start to multiply and spread.  In order to have a recurrence, some cancer cells must be left alive in the breast after treatment.  (This is of course different than the development of a new primary breast cancer, which is a different and separate risk.) 

    Doesn't it make sense then that for those who have a mastectomy for DCIS, since there's no breast mass left where cancer cells might have wandered off into and might be hiding, the only way that a recurrence can happen is if cancer cells are left in the tiny amounts of breast tissue scrapings that inevitably remain against the chest wall and the skin? And aren't close margins the most likely sign that there might be cancer cells left in these areas? 

    It just seems so logical to me that the 1% - 2% of women who have a recurrence after a mastectomy for DCIS will be the same women who had close margins after their mastectomy. 100 women have mastectomies for DCIS. 15 women have close or positive margins.  2 women have a recurrence.  If both of those women were in the group that had close margins, it means that the recurrence rate for those with close margins will be 13%.

    As someone who focuses on the research rather than on opinions and anecdotes, it's not like me to suggest that something might be true just because it is logical.  But in this case I can't help myself.  Having close margins after a mastectomy seems to be the most likely way that someone could end up with a recurrence.   

  • ZTeam
    ZTeam Member Posts: 44
    edited December 2011

    Hi All,

    It's been ages since I've done stats, so I'm pretty rusty and feel free to correct me if/when necessarySmile

    To calculate the confidence interval, I just used an online calculator:

    http://www.surveysystem.com/sscalc.htm 

    The logrank test is used to determine whether the difference in survival between groups, treatments, etc. are more than we would expect by chance alone.  In this case, we're trying to understand if the difference in the risk of recurrence for the close margin sample group compared to the 'good' margin sample group is due to chance or is because the close margin population actually has a different risk of recurrence than the 'good' margin population. The p-value is the probability that random sampling would lead to a difference between sample means as large (or larger) than observed. The lower the p-value, the lower the probability.

    A pretty good description of the p-value can be found here:

    http://www.graphpad.com/articles/pvalue.htm

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2689604/ 

    In the Rashtian article, the p-value is 0.0356. They set their threshold for significance at 0.05, so their result is significant. The threshold means that 5% of the time, random sampling will result in a difference as large or larger between the two sample means (16% and 2%).

    So, we know that if we have close margins, there is likely a higher risk of recurrence compared to those not having close margins. What we don't know is how much that difference is.

    Beesie, I agree with you that it is intuitive that closer margins would increase the risk, but we don't know by how much and that's the grey zone. Because the sample size is so small, our confidence interval is quite wide. In the Rashtian study, it ranges from 3% to 29%. 

    Also, it's a single institution study and could reflect the quality of the surgeons, pathology department or, perhaps most likely in this case, protocols (as Dancetrancer noted, the study authors were only able to confirm one of the patients who recurred had their fascia removed in their mastectomy). Furthermore, of the few studies done in this area (included in the DCIS, BMX/MX, and radiation ladies thread - 16% in Rashtian, 10.5% in Carlson, 1.7% in Chan), the Rashtian study had the highest risk of recurrence. This makes me think that the real result is probably not in the upper half of our 3% - 29% confidence interval.

    What I take away from this is that while these studies are interesting, they will not carry the same weight in my decision making as some of the other, large studies. The fact that my surgeon removed my fascia also gives me a lot of comfort.

    So, here's what I've been turning about in my head while trying to make a decision. The risk of recurrence is low. Even if it is 16%, that still means 84% chance of no recurrence (yahoo!). The risk of long-term complications is even lower. So, how do I weigh the two? I've been thinking about the adverse outcomes in both scenarios and how I might feel. Let's say I don't do radiation and I have a recurrence. I won't know if radiation would have prevented that particular recurrence. However, if I do radiation and have a heart attack I can be pretty sure that it was the radiation that caused it. Plus, if I do radiation and have a recurrence, I likely won't be able to have radiation again. So, I'm leaning towards no radiation, but haven't made a final decision yet.

    Good luck to everyone who is facing this decision - it's a toughie!

    Best,

    Lisa 

  • cycle-path
    cycle-path Member Posts: 1,502
    edited December 2011

    I'm reminded of a very old Saturday Night Live skit in which Chevy Chase portrayed President Ford during the Presidential debates. He's asked a complicated question, and Chase (as Ford) looks very confused and doesn't speak for a moment. Eventually he says, "I understood there would be no math in the debates."

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited December 2011

    Beesie, thank you for your input, as always.  Z-team, I also appreciate the statistics review and your thoughts.  

    Definitely a tough decision.  I'm now going to look closer at studies on radiation long-term side effects on the heart - trying to get a better estimate of what that risk really might be with the newer technology... 

    Anybody have a crystal ball?  

  • mom3band1g
    mom3band1g Member Posts: 817
    edited December 2011

    cycle path - ha, you made me laugh!  thank you!

    dancetrancer - if you find one would you please let me look?  thanks.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited December 2011

    Mom3, I will definitely post what I find.  I started reading studies last night and my head started hurting.  LOL.  There's actually a lot of information out there.  It may take me a few days to get it organized in my head to where I can process it all - I will definitely post what I find!  

  • sunshinegal
    sunshinegal Member Posts: 209
    edited December 2011

    Hi Lisa,

    I could have written your OP, as we have nearly identical diagnoses. I was 36 at diagnosis; my tumor was 9.5cm, all DCIS but grade 3 (downgraded to 2/3 in the final pathology) with comedonecrosis. I also had <1mm margins at the chest wall, though my breast surgeon removed the fascia.

    I also faced the question of radiation, and got the input of two tumor boards -- first, the board at the hospital where I was treated. That group had a split opinion about radiation, with their radiation oncologist strongly recommending it. I consulted with her but didn't feel confident about proceeding... so I got a 2nd opinion from a radiation oncologist at Dana Farber. When she reviewed my case, she wanted to take it to the DF tumor board. Which she did, and they came back with a unanimous opinion that I did NOT need radiation.

    Their decision comported with where my husband and I were at....much more at peace with the "no rads" decision than anything else. And that surprised me because when I was first diagnosed, I assumed I would want to throw everything at this stupid tumor especially given my age. But I have wound up feeling much more comfortable with foregoing rx and tamoxifen -- the latter decision mostly because my husband and I wanted to start a family (and, lo and behold, I am today 19 weeks pregnant). :)

    I have had a couple of twinges of "gosh, did I make the right decision?" particularly when I've run across studies like what you mention above. I also read a study about the Van Nuys prognostic index suggests a higher recurrence rate for mastectomies with small margins and no rx. I took that article to my breast surgeon, who found it academically interesting but it didn't change his point of view that I am very unlikely to have a recurrence, partly because he removed the fascia.

    Sometimes I wish I could lay my hands on research that discusses the impact of removing the fascia on recurrence rates. Anecdotally it seems like it's a really good thing to do, but I've never seen any research or writing on the issue. (Anyone know of any relevant studies?)

    So - all that to say, Lisa, I have been where you are. I totally understand the weighing you are doing. I am still overall happy with my decision to forego rads. I feel confident that I had a great surgeon who knew what he was doing. If I'm unfortunate enough to have a recurrence, I hope I don't second guess my decision on rx, but now there's nothing I can do about it so for the most part I don't sweat it. Good luck to you!!!

  • red64
    red64 Member Posts: 13
    edited December 2011

    Hi Lisa,

    I had a mixed tumor - DCIS and IDC.  I underwent bilateral mastectomy.  The IDC margin was clear but the deep margin for the DCIS was < 1mm.  My DCIS tumor was much smaller than yours (approx 2 cm) and I am older than you (46) but the DCIS was grade 2/3 with comedonecrosis.  My tumor was also on the left.

    My radiation oncologist and breast surgeon both recommended against any radiation.  They shared some of the studies - the studies were small and the results were all over the place, anywhere from 1.7% chance of recurrence to 30%.  In the end, I just felt that the risk from the radiation was greater than my risk from the close margin.  The radiation oncologist also told me that the close margin increases my chance of recurrence long term ( so in 10 to 15 years).

    I am taking Tamoxifen for 5 years so will have added protection from that.

    I know how hard it was to make the decision - just remember that every case is unique and you will need to make your own decision based on your specific circumstances and what feels right to you.

    Good luck - 

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited December 2011

    Sunshine gal and red64, thank you for sharing your stories. Smile

    Sunshinegal, I looked and found this study:  Eleven Year Follow-up of a Randomized Study of Pectoral Fascia Preservation After Mastectomy for Early Breast Cancer.  

    Method The trial included 247 patients with breast cancer
    who underwent modified radical mastectomy in five
    Swedish hospitals between 1993 and 1997. The median
    follow-up time was 11 years. The patients were randomized
    between removal (n = 122) versus preservation
    (n = 125) of the pectoral fascia.
    Results The breast-cancer-specific survival at 10 years
    was 73%. Removal or preservation of the pectoral fascia
    had no significant impact on chest-wall recurrence rate or
    breast-cancer-specific survival. A total of 18 patients with
    chest-wall recurrence were seen in the group allocated to
    pectoral fascia preservation versus a total of 10 in patients
    allocated to pectoral fascia removal (hazard ratio = 1.8,
    95% confidence interval = 0.8-4.0). The majority of the
    chest-wall recurrences were detected 0-5 years postoperatively.
    The cumulative chest-wall recurrence rates at 5 and
    at 10 years were 13 and 15%, respectively, in patients
    allocated to pectoral fascia preservation and 8 and 9% in
    patients allocated to pectoral fascia removal.
    Conclusions With long-term follow-up neither the chest
    wall recurrence rate nor the breast-cancer-specific survival
    was significantly influenced by the preservation of the
    pectoral fascia. A trend toward an increased risk for chest
    wall recurrence was observed in patients with preserved
    pectoral fascia. A hazard ratio of 1.8 for a chest-wall
    recurrence in patients with preserved fascia indicates that
    fascia-sparing mastectomy may negatively affect
    prognosis. 

    I find this article confusing.  It says there was no significant influence on fascia preservation, but then it goes on to say there was a trend in increase risk of chest wall recurrence if fascia is preserved.  To me it sounds like they are saying they didn't have statistical significance but the numbers were strong enough to suggest preserving the fascia may not be a good idea.  Is that how others interpret this? 

    P.S. This study is on early bc patients - it doesn't say what stage, but it definitely wasn't DCIS only.  Oh and 100 of the pts had post-op radiotherapy (3+ nodes) and around 100 had chemo before or after.  133 took tamoxifen after MX.  However the pts were randomized into the two fascia/no fascia groups, so that helps to reduce the impact of all of these other factors.  I think.  LOL 

  • sunshinegal
    sunshinegal Member Posts: 209
    edited December 2011

    Thank you, Dancetrancer! Yes, it is a confusing study and my first question as I read was "what stage were these gals?" I wonder too if there is any newer research out there, as the study subjects were treated 14-18 years ago. My surgeon certainly made a big deal about having removed the fascia, so I wonder what he knows (or thinks he knows) that isn't reflected in this study? Thanks again for posting it!

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited December 2011

    Here are some more interesting things they write in the conclusion:

    To conclude: in patients with a tumor not involving the
    pectoral fascia either clinically or at breast imaging, the
    preservation of the pectoral fascia did not significantly
    influence the chest-wall recurrence rate or the breast-cancer-
    specific survival. However, a trend toward a lower
    recurrence rate among patients with removed pectoral
    fascia was observed.

    ...

    An increased risk for a chest-wall recurrence of 1.8
    among patients with preserved fascia indicates that fasciasparing
    mastectomy can endanger patients without any
    benefit provided beyond facilitation of primary breast
    reconstruction. However, to prove this statement much
    larger studies are required.

     

  • Natters
    Natters Member Posts: 361
    edited December 2011

    dancetrancer, a "trend" is what researchers report when they don't find something that is statistically significant, but they see some patterns in the data that generally support their hypothesis and it is close to statistically significant, and they want to report it anyway. This tends to happen in reports of clinical studies with very small sample sizes because you need more people to reach statistical significance, especially if the effect is small. So they feel like if they could have say, 20-40 more patients, this trend might become statistically significant.

    Some journals won't let you publish if you mention trends in your abstract like this, whereas others accept it. Obviously, the WJS allows it. The hazard ratio of 1.8 means that Dalberg and her colleagues believe that women with a fascia might be 1.8 times more likely to have a chest-wall recurrence in 5 years' time. However, their confidence interval was very large, meaning there is a lot of error, and it was not statistically significant. Probably one of the most important points in this study is that the authors concluded that it did NOT have any impact on survival. 

    Statistical significance usually means that the researchers are trying to be 95% sure that 2 things are not related by chance. So there would be just a 5% chance that women with an intact fascia would just coincidentally also have a chest-wall recurrence. These researchers did not find that. Often when trends are reported, this means that there is a 10% chance that their findings were due to chance. 

    In any case, I am sure you guys are relieved that they removed the fascia anyway, so that you don't have any worries about anything lingering there and coming back to haunt you. Only 8% of the women in this study were Stage 0, btw, and 100 of the highest risk patients got rads. They defined high-risk as 3+ positive nodes or large tumors. They don't specify if your large tumor had to be invasive or not to qualify for rads.

    Personally, I would have loved to take a pass on rads. It's not a ton of fun, and I worry about long-term damage to my heart, lungs and muscles on the left side.

    Nerdy Nat 

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited December 2011

    Hey Nerdy Nat, LOL,  - THANK YOU for chiming in!  Love the info and educational review.  It's been about 14 years since I had to critically review articles in grad school, so I really appreciate the help - the old brain is rusty!  

    I would love to take a pass on rads, too - for the same concerns as you have about the long-term heart and lung damage.  I am still on the fence, still reading, still waiting for my 3rd RO appt. 

    P.S. I've gotta a tabby kitty, too.  She's got spunk!  

  • ZTeam
    ZTeam Member Posts: 44
    edited December 2011

    Sunshinegal and red64, thank you so much for sharing your stories and posting the recommendations you received from your ROs. I see so many ROs on these boards that recommend radiation for cases similar to mine that I was starting to wonder if my RO wasn't aggressive enough. I'm glad to know she isn't.

    Dancetrancer, thanks for posting the study - really interesting.

    Nerdy Nat - thanks for your comment. I too am a proud member of the nerd herd.Smile

    The researchers set their level of significance at 5% (p-value <0.05). The p-value for chest wall recurrence was 0.12.  However, it looks like the study excluded patients with close margins:

    "Excluded from the study were patients with inflammatory breast cancer, a tumor very close to or involving the pectoral fascia clinically or at mammogram." [my emphasis]

     Another interesting bit:

    "Most of the recurrences were detected 0–5 years postoperatively in accordance with 40-year-old studies [57] reporting few additional local relapses after 5 years. These findings are in contrast to ipsilateral breast tumor recurrences after breast-conserving surgery, which is a clinical problem even after a long follow-up [89], with a continuous yearly increase of 1–2%."

    So, if we can just get through the next 5 years...

    Best,

    Lisa 

  • undercoverebel
    undercoverebel Member Posts: 646
    edited December 2011

    Hi everyone,my situation is this-0.1 cm to deep margin located against my chest wall on the left side. The clean margin was so small before it hit the chest. My GS said they don't dig into chests and remove ribs to get wider clean margins so that's the best i'll get. My MO said the studies they have done on this show no real benefit to me doing rads. The close margin is the only reason it was brought up but there's no data to support it's usefullness on me. Well having little to no data really shows their disinterest in the early stagers. I guess they all think it's pointless to study us more because we're going to be fine. The RO was no better,he finally got the correct stats together and stated the same thing. But he upped my recur risk because of my age as well as the close margin. That being said they still didn't feel it would help me. And with the risk of lung cancer after rads I agreed. The main problem is the stats are so small on us as they've researched so little. They both told me the BEST thing I did to prevent recur was having my bmx. They both stated that the bmx was the most important thing I could have done,more than rads or Tamox. My next questions will be to my second RO on friday which will include:What are the stats on lung cancer after 28 rads? What's the mortality rate for it? As well as stats on early stage,close margin girls and their mortality rate after recur? Especially since 50% of recur cases will be invasive they say. And finally how many recur after having rads? If there's no difference then why put yourself thru it? My MO said there are no answers to my other questions. He said it boils down to which decision I can live with. They really need to focus on early stagers more than they have. We're in danger too,as much as they'd have us believe we're not.

  • ZTeam
    ZTeam Member Posts: 44
    edited December 2011

    Hi Undercoverrebel,

    I'm sorry to hear you've joined our 'close margin' club. I too wish that they would do more research on this area, but unfortunately by the time they do it will be too late to help us with our radiation decision.

    I hope your second appointment with an RO on Friday goes well; please let us know what you learn. I'm very curious to see what side most ROs are landing on this issue.

    Best,

    Lisa 

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited December 2011

    I just found this: 

    Rates of Second Malignancies after Definitive Local Treatment for DCIS of the Breast

    This compared surgery vs surgery plus rads in breast conservation patients.  I think we can still apply this to us being post-MX; although there may be some variability in the amount of rads our organs get due to no recon/recon vs having a breast, I wouldn't think it would be too much (IMO).

    Looks like they are saying no significant difference in long-term effects (malignancies) between the two groups.  I'd like to know what years they are looking at, since newer rads techniques are supposed to have less effect on the internal organs.  This study doesn't appear to look at heart damage effects, just malignancies.    I can't find the entire study for free online, though.  I'd like to read it - if anyone can find the whole study please share a link.  Thanks!

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    Purpose
    We analyzed the risk of second malignancies developing in patients with ductal carcinoma in situ (DCIS) undergoing surgery and radiotherapy (S+RT) vs. surgery alone.

    Methods and Materials
    The S+RT cohort consisted of 256 women treated with breast-conserving therapy at William Beaumont Hospital. The surgery alone cohort consisted of 2,788 women with DCIS in the regional Surveillance, Epidemiology, and End Results database treated during the same time period. A matched-pair analysis was performed in which each S+RT patient was randomly matched with 8 surgery alone patients (total of 2,048 patients). Matching criteria included age ± 2 years. The rates of second malignancies were analyzed overall and as contralateral breast vs. non-breast cancers and by organ system.

    Results
    Median follow-up was 13.7 years for the S+RT cohort and 13.3 years for the surgery alone cohort. The overall 10-/15-year rates of second malignancies among the S+RT and surgery alone cohorts were 14.2%/24.2% and 16.4%/22.6%, respectively (p = 0.668). The 15-year second contralateral breast cancer rate was 14.2% in the S+RT cohort and 10.3% in the surgery alone cohort (p = 0.439). The 15-year risk of a second non-breast malignancy was 14.2% for the S+RT cohort and 13.4% for the surgery alone cohort (p = 0.660). When analyzed by organ system, the 10- and 15-year rates of second malignancies did not differ between the S+RT and surgery alone cohorts for pulmonary, gastrointestinal, central nervous system, gynecologic, genitourinary, lymphoid, sarcomatoid, head and neck, or unknown primary tumors.

    Conclusions
    Compared with surgery alone, S+RT is not associated with an overall increased risk of second malignancies in women with DCIS.

  • ZTeam
    ZTeam Member Posts: 44
    edited December 2011

    Useful study, Dancetrancer, thanks. Timely too. I just heard back from a friend of a friend who's a medical oncologist and she thinks I should do radiation, so I now have one vote for and one vote against. Ugh. Still waiting for a few more opinions and I think I'll ask the first RO to take it to the tumour group.

    Best,

    Lisa 

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited December 2011

    Wow Zteam, thank you for sharing.  I finally was able to get my 3rd appt set up for late next week, so I will know more by then.  Right now I'm leaning towards rads, due to having kind of an emotional breakdown last night.  I had to go to that place of imagining myself dying of bc vs of heart attack (was hard to put my mind there for real).  Since bc tends to recur statistically in the first 5 years, and heart damage shows up in 10 to 15, rads would give me a longer time frame for life.   Looking at the worst case scenario possible, and, of course, hoping neither happens.  Just wish I had more concrete numbers to base this on, but I know that data just doesn't exist.  

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