Mastectomy for DCIS, but positive margin against chest wall

TB90
TB90 Member Posts: 992

I finally received my pathology report, albeit verbally for now.  I have DCIS with positive chest wall margin following left mx.  Will be referred to a radiologist, although my bs is not recommending radiation.  I can tell that I am going to have another difficult decision ahead of me and any input from anyone would be greatly appreciated. She also stated that tamoxifen also may be an option as I am HR positive. 

Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited January 2014

    Ah, that's a tough one.  It used to be that rads was never given after a MX for DCIS, but these days it is becoming more and more common to see rads prescribed in cases where the chest wall margin is very close or positive.  This follows the release of some research (a very small study, mind you) that showed that recurrence rates where substantially higher after a MX if the margins were close or positive. 

    Close or Positive Margins After Mastectomy for DCIS: Pattern of Relapse and Potential Indications for Radiotherapy

    "Results  With a median follow-up of 61 months, 6 (7.5%) of the
    80 patients developed local recurrence. Of the 31 patients with a
    margin of ≤2 mm, 5 (16%) developed local recurrence vs. only 1 (2%) of
    49 patients with a margin of 2.1–10 mm (p = 0.0356). Of the 6
    patients with local recurrence, 5 had high-grade disease and/or
    comedonecrosis. All six recurrences were noted in patients <60 years
    old.

    Conclusion  The findings of this review suggest that patients with pure ductal carcinoma in situ
    who undergo mastectomy with a margin of <2 mm have a
    greater-than-expected incidence of local recurrence. Patients with
    additional unfavorable features such as high-grade disease,
    comedonecrosis, and age <60 years are particularly at risk of local
    recurrence. These patients might benefit from postmastectomy
    radiotherapy.
    "

    Another interesting article/study:

    Analyzing the Risk of Recurrence after Mastectomy for DCIS: A New Use for the USC/Van Nuys Prognostic Index

    "Methods  We reviewed a
    prospective database of 1,472 patients with pure DCIS. All patients were
    scored from 4 to 12 using the USC Van Nuys Prognostic Index, an
    algorithm based on DCIS size, nuclear grade, necrosis, margin width, and
    patient age. Probabilities of recurrence and death were calculated
    using the Kaplan–Meier method.

    Results  A total of 496
    patients with pure DCIS were treated with mastectomy. None received any
    form of postmastectomy adjuvant treatment. Average follow-up was
    83 months. Eleven patients developed recurrences, all of whom scored
    10–12 using the USC/VNPI. No patient who scored 4–9 recurred. All 11
    patients who recurred had multifocal disease and comedo-type necrosis.
    The probability of disease recurrence after mastectomy for patients
    scoring 10–12 was 9.6% at 12 years, compared with 0% for those scoring
    4–9. There was no difference in overall survival.

    Conclusions  There were no
    recurrences among mastectomy patients who scored 4–9 using the USC/VNPI.
    Patients scoring 10–12 were significantly more likely to develop
    recurrence after mastectomy. At risk were young patients with large,
    high-grade, and multifocal or multicentric tumors. For every 100
    patients with USC/VNPI scores of 10–12, 10 patients will recur by
    12 years and 2–3 will develop metastatic disease.
    "

    .

    And here are a couple of older threads from the DCIS Forum where this issue is discussed.  You might find the discussions helpful or you might want to follow-up with some of the other women who've been in the same position that you are now:

    Topic: DCIS, BMX/MX, and radiation ladies

    .

    Topic: Chest Wall Margin 0.1mm after Mastectomy - radiation decision

  • TB90
    TB90 Member Posts: 992
    edited January 2014

    Hi Beesie:  I was so hoping I could flush you out and get your helpful research collection.  Thank you and I will continue to read everything I can find prior to meeting with radiologist. 

  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited January 2014

    TB90, I was told I would need radiation regardless of whether or not I had mastectomy or lumpectomy - so at the end of the day the surgical question for me was more cosmetic.  The area that needed to be removed was large, relative to the size of my breast (5 cm total - only 1 cm ended up being DCIS, the rest was benign ADH and other things - like a radial scar, etc.).  Luckily, it was all in one quadrant - so I decided to trust my surgeon.  He did a fabulous job (moved some stuff around after the surgery so I only have a "depression" and not a huge chunk :).  The hardest part of the surgery was the amount of tissue that he took down against the fascia and chest wall.  

    Anyway - the RO was the one who gave me my risk without radiation, and I decided it was worth the risk reduction to have radiation. That said, I did not have the option of Tamoxifen - so it might be that at the end of the day you could have the same risk as someone who had radiation if you choose Tamoxifen.  Regardless, a consult with an RO might help you a lot, you can get more information that you can use to decide.

    Best wishes to you.

  • TB90
    TB90 Member Posts: 992
    edited January 2014

    BLinthe:  Thank you for your comments.  How did you find the radiation?  I am not certain which of the two I would prefer at this time if necessary and if I have an option.  Both have risks, both have benefits. I will be consulting with a RO next. 

  • ballet12
    ballet12 Member Posts: 981
    edited January 2014

    Hi TB, I believe that your radiation (post mx) would be to the chest wall vs. someone who had a lumpectomy for DCIS, where the radiation is to the breast. 

  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited January 2014

    TB- I found radiation, while not pleasant, completely doable.  I had some pretty bad skin complications (mainly looked like a severe bumpy rash) that showed up at about week 4 and were gone by about 3 weeks after my last treatment.  The only other SE I had (besides fatigue that wasn't horrible - I worked full-time during treatment) was truncal edema and very, I mean very, tight chest. I could hardly breath - this lasted for about 2 months after treatment; I think this was 'caused' by the surgery in the chest wall, and exacerbated by radiation.  I had some very painful friction-type massage and this loosened up.  Within a year I ran the fastest marathon I had ever run, and felt great!

    Good luck.

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited January 2014

    What I learned from my DCIS interactions with the different medical staff is that Oncologists specialize in oncology. Most surgeons specialize in surgery (cept for oncologist surgeons, of course.)

    Although they  may know some about each others' fields, I learned that they don't know it all.

    Example: My oncologist recommended that I have a BMX with node removal AND a total hysterectomy with ovaries and tubes removed at the same time. I discussed this with my surgeon, and she said that was a bad idea. I had the BMX w/node removal separately and holy cow I am glad I didn't get it all done at the same time!!!!

    Another example: I had a BMX w/node removal with clean margins for DCIS. My breast surgeon wanted to put me on Tamoxifen. I talked to the medical oncologist and he explained that would be unnecessary and overtreatment (not mention dangerous with some of my other health issues) because in my case, the cancer was contained within the milk ducts and I had very clean margins after the BMX. Since the milk ducts were gone, the cancer was essentially gone.

    In your case, you have dirty margins. If I were in  your shoes, I would go with what the radiation oncologist has to say. You can always get a second opinion from another radiation oncologist.

    It sure seems like we have to make pretty important decisions rather quickly sometimes with cancer.

    I wish you the best.

  • TB90
    TB90 Member Posts: 992
    edited January 2014

    Thanks Cinnamon:  This is what drives me crazy.  Each specialist looks at a part of you, but never the entire picture.  I worry that the RO will favour radiation because that is what s/he knows.  My breast surgeon sits on the tumor board so she actually has a more overall view of the situation, but clearly as she is the one who referred me to the RO, knows that she is in no position to replace the others..  She has recommended that I insist my situation be presented at the tumor board where multi-disciplinary teams review each situation.  That plan is the only thing bringing me some comfort at the moment.  I have researched the situation and now am struggling to see whether radiation or tamoxifan would be better.  It is like my son used to ask me when he was a little boy.  "Would you rather be chased by a bear or a shark?"  I couldn't answer that then and still cannot today.  Hate that I am having to choose!

  • Beesie
    Beesie Member Posts: 12,240
    edited January 2014

    "Would you rather be chased by a bear or a shark?"  

    It depends whether I'm on land or in the water.  

    My understanding is that it's the role of the Medical Oncologist to look at the entire picture. 

    MEDICAL ONCOLOGIST 

    A doctor who specializes in diagnosing and treating cancer using
    chemotherapy, hormonal therapy, biological therapy, and targeted
    therapy. A medical oncologist often is the main health care provider for
    someone who has cancer. A medical oncologist also gives supportive care
    and may coordinate treatment given by other specialists.

    Edited to try to fix the formatting


  • redsox
    redsox Member Posts: 523
    edited January 2014

    I think this is one of the major frustrations in dealing with DCIS -- there is no one doctor who can be viewed as the overall expert. If you have metastatic cancer or locally advanced cancer requiring chemo then the med onc is the primary one.  But if you have DCIS or early IDC not requiring chemo that is not clear.  If you have MX the surgeon is the primary treating physician and usually the med onc and rad onc have no or little role.  If you have lumpectomy + radiation the surgeon and rad onc are both important.  Even if you take tamoxifen the role of the med onc is not so important for DCIS.  It really seems to depend on the particular doctors you see.

  • TB90
    TB90 Member Posts: 992
    edited January 2014

     Beesie, I just shared your response with my son and he laughed.  He is now 27.  Then he reverted back to being 7 and stated, "that is cheating!"  

    I am now creating a sort of spread sheet with the pros and cons and special considerations to take with me to the RO.  If that won't force him to take it to the board just to appease me, I don't know what will :)  I will ask about seeing a MO as well.  I hate not having a clear best practice.  I have been reviewing others' experiences to try to get an idea about SE's, etc.  I handle surgery way better than treatments with possible serious SE, but then again, I realize the serious SE are rare.  If anyone has not yet noticed, I do not handle uncertainty well lol  And BC is all about uncertainty. 

    I am also struggling with rads vs hormonal therapy.  Rads better addresses the future health of the affected breast only while hormonal therapy better addresses both breasts, but not the return of invasive bc in the primary breast.  Rads might also be better to save in case a bc comes back later.  Has anyone else struggled with these issues or am I simply driving myself crazy?  Actually I know that I am driving myself crazy, I guess the real question is, am I crazy???      

  • ballet12
    ballet12 Member Posts: 981
    edited January 2014

    Hi TB, I'm sure Beesie will get you actual quotes about this, but I'm a bit more lazy.  It is my understanding that radiation treats the "current" health of the breast.  It is a localized treatment aimed at getting rid of any errant cancer cells.  In your case, with the breast removed, the treatment is at the chest wall/remaining very small amount of breast tissue.  Obviously, if those cancer cells remain, you have a chance of recurrence, so in that sense it addresses future health..  The hormonal treatment addresses both breasts, and it would affect the return of invasive bc in the primary breast.  It reduces the risk of recurrence to the primary breast (either DCIS or IDC) and it reduces the chance of a new primary in the other breast (either DCIS or IDC). 

    You are definitely NOT crazy, especially if you get different messages from different medical professionals. I had radiation to the breast, with no difficulties other than a couple of weeks of really dense fatigue, with lesser fatigue persisting for a few weeks after that.  I just couldn't get away with 6 or fewer hours of sleep like I had been able to.  I continued to work throughout, although did modify my schedule somewhat.  I had no skin issues whatsoever.  My mother had radiation to the chest wall post mx for IDC, also with no difficulties.

    Finally, it seems to me that the radiation directly targets your positive chest wall situation, whereas the Tamoxifen is a more generalized approach. I'd be curious to hear what the tumor board has to say. 

  • Annette47
    Annette47 Member Posts: 957
    edited January 2014

    As Ballet says, the radiation and tamoxifen do essentially address different issues, although there is some overlap.   In my case (lumpectomy) I opted for both, for several reasons.

    As far as my experience with both goes - some mild swelling and fatigue with radiation; no major skin issues at all, no noticeable effects to heart or lungs.     With tamoxifen, few if any side effects - the occasional mild hot flash that peaked at about 4-6 months in (haven't had one in the past couple months), some brittle nails and minor hair loss, both of which seem to have ended - again, those SE's peaked at about 4-6 months in and now seem to be going away.   I've actually had some nice benefits from it too, including an ending to the fibrocystic cyclical pain and swelling I've had most of my life.   My periods are lighter and more regular than they had been.   

    That's not to say your experience would be the same, but just know that while people tend to be very vocal about the bad SE's they experience from various treatments, there are many women out there who do NOT experience those same SE's, but you are less likely to hear from them.   Part of your conversation with the docs should center around how likely YOU are to experience certain SE's, particularly the severe ones.     With the Tamoxifen, if the "quality of life" side effects as my onc refers to them are bad,  you can always quit the drug.   That's how I went into it - try it and see how I tolerated it, as it is not as essential for my survival as it would be with someone with more advanced cancer, but will provide some benefits.   Unfortunately there is no real "try it and see" with radiation!

  • TB90
    TB90 Member Posts: 992
    edited January 2014

    Thanks Ballet and Annette:  It is so reassuring to hear from others who did so well.  I did read in some research that Tamoxifan does not address the return of IDC in the primary breast.  Or maybe in that one study, it did not appear to?  I will have to do more research on that as that is a very important factor in my consideration.  If I find the study again, I will post it.  Thanks again!

  • ballet12
    ballet12 Member Posts: 981
    edited January 2014

    Hi TB, do post that article, because I've never heard or read that, and I am treated at a world-class cancer center, and they said the typical thing, that the hormonals reduce the recurrence risk (of either DCIS or IDC) in the treated breast by 50 percent (the aromatase inhibitors but a slightly higher percent).  These are relative reductions.  If your actual estimated risk of recurrence is 12 percent, then the Tamoxifen reduces the risk to 6 percent (again for either DCIS or IDC).  Usually you have a 50 percent chance of a recurrence being DCIS and 50 percent chance of the recurrence being IDC (which is also bound to confuse you further). If you zap the narrow margin with radiation, I believe (but don't know for sure) that technically your recurrence risks should then be the same as someone who didn't have that margin and also had a mastectomy for DCIS, in other words, one to two percent.  Do ask the RO about this.

    So you have to decide if you want to do a time-limited targeted treatment, or a more long term somewhat less targeted treatment.  I, personally, wouldn't "save" radiation for later.  I would probably want to do what I could now to reduce recurrence risk, while it is exclusively pre-invasive disease (at least as of the path report you have now), rather than wait to use radiation later, when you could have invasive disease that is potentially more difficult to control. You don't want a "later", if you can help it.  Now, if you have other reasons for not doing radiation, like concerns about side effects (e.g. left chest, etc.) that's something else entirely.  Do you have time to get a second opinion on the radiation? Is the DCIS high nuclear grade? with comedonecrosis? multi-focal?  Or is the DCIS low grade, and maybe Tamoxifen would be enough to reduce the risk? Or is it high grade, and potentially more aggressive?  I think everyone who has posted on these threads, with a similar situation, has agonized over it.

  • TB90
    TB90 Member Posts: 992
    edited January 2014

    Thank you Ballet:  You are being so very helpful!  I will search for that study this evening.  I put all my info on my  profile but it does not show up.  I am not great on technology.  I have grade 2, focal necrosis, one area 5cm at largest (large enough),cribform and micropapillary.  ER and PR positive. I do not believe it is aggressive, but the focal necrosis and large size are risk factors, never mind the positive margins.  I am 54.  I was out all day but of course mulling things around in my head.  I thought that dcis cells could not live outside of the ducts, so how could they recur after a mx.  Would that mean that there can still be ducts after a mx?  I guess there must be or else how could I ever get a recurance (sp?) of dcis?!  Damn this is confusing me.  By the way, how much time do I have to make a decision?  Hope I find that study this evening :)  

  • TB90
    TB90 Member Posts: 992
    edited January 2014

    Hi again Ballet:  Type in Tamoxifan vs radiation therapy for dcis and it is actually a bc.o article.  Please explain how I may be interpreting this article incorrectly, because to me it clearly states that tamoxifan does not address idc in the primary breast.  Hoping I am missing the obvious . .  

  • ballet12
    ballet12 Member Posts: 981
    edited January 2014

    Hi TB, I think this is the study you referred to.  It says that adjuvant Tamoxifen didn't enhance the benefit beyond the adjuvant radiation therapy in the breast where the DCIS was originally diagnosed.  That means that there was a great benefit to radiation in preventing recurrence, but when Tamoxifen was also used, the Tamoxifen didn't increase the benefit significantly.  In this study, of the patients who got radiation, those who also took Tamoxifen did not show a significantly enhanced benefit from taking both the radiation and the Tamoxifen.  Really, what they are saying is that the radiation has the greatest effect, and Tamoxifen doesn't increase the effect any further.  There are other studies that demonstrate otherwise.  You need to look for studies that compare those only getting radiation vs. those only getting Tamoxifen. 

    Ten years after DCIS surgery, women who got radiation therapy were 59% less likely to have had new DCIS or invasive breast cancer in the same breast as the original DCIS than women who didn't get radiation therapy. For every 100 women treated with radiation therapy after DCIS surgery, a new breast event in the same breast was prevented in 12.3 women (the absolute risk of a new breast event in the same breast was reduced by 12.3%).

    After nearly 13 years of follow-up, the women who got adjuvant radiation therapy were:

    • 62% less likely to be diagnosed with a new DCIS in the same breast
    • 68% less likely to be diagnosed with invasive breast cancer in the same breast

    Radiation therapy didn't lower the risk of a new breast event in the opposite breast. This makes sense because the benefits of radiation would only be in the breast that was treated.

    The researchers also found that:

    • adjuvant radiation therapy benefited women whether or not they got adjuvant tamoxifen
    • adjuvant tamoxifen didn't enhance the benefits of adjuvant radiation therapy in the breast where DCIS was originally diagnosed
    • adjuvant radiation therapy seemed to most benefit women with intermediate and high grade DCIS

    The study below is another study which says that Tamoxifen does have a positive effect, but they didn't separate out those with no radiation from those with radiation. 

    Cochrane Database Syst Rev. 2012 Oct 17;10:CD007847. doi: 10.1002/14651858.CD007847.pub2.

    Postoperative tamoxifen for ductal carcinoma in situ.

    Staley H, McCallum I, Bruce J.

    Author information

    • Northumbria Healthcare NHS Foundation Trust, North Tyneside General Hospital, North Shields, UK.

    Abstract

    BACKGROUND:

    Ductal carcinoma in situ (DCIS) is a non-invasive carcinoma of the breast. The incidence of DCIS has increased substantially over the last twenty years, largely as a result of the introduction of population-based mammographic screening. The treatment of DCIS tumours involves surgery with or without radiotherapy to prevent recurrent DCIS and invasive carcinoma. However, there is clinical uncertainty as to whether postoperative hormonal treatment (tamoxifen) after surgery confers benefit in overall survival and incidence of recurrent carcinoma.

    OBJECTIVES:

    To assess the effects of postoperative tamoxifen in women having local surgical resection of DCIS.

    SEARCH METHODS:

    We searched the Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library), the Cochrane Breast Cancer Group's Specialised Register, and the World Health Organization's International Clinical Trials Registry Platform (WHO ICTRP) on 16 August 2011.

    SELECTION CRITERIA:

    Published and unpublished randomised controlled trials (RCTs) and quasi-randomised controlled trials comparing tamoxifen after surgery for DCIS (regardless of oestrogen receptor status), with or without adjuvant radiotherapy.

    DATA COLLECTION AND ANALYSIS:

    Two authors independently assessed trial quality and extracted data. Statistical analyses were performed using the fixed-effect model and the results were expressed as relative risks (RRs) or hazard ratios (HRs) with 95% confidence intervals (CIs).

    MAIN RESULTS:

    We included two RCTs involving 3375 women. Tamoxifen after surgery for DCIS reduced recurrence of both ipsilateral (same side) DCIS (HR 0.75; 95% CI 0.61 to 0.92) and contralateral (opposite side) DCIS (RR 0.50; 95% CI 0.28 to 0.87). There was a trend towards decreased ipsilateral invasive cancer (HR 0.79; 95% CI 0.62 to 1.01) and reduced contralateral invasive cancer (RR 0.57; 95% CI 0.39 to 0.83). The number needed to treat in order for tamoxifen to have a protective effect against all breast events is 15. There was no evidence of a difference detected in all cause mortality (RR 1.11; 95% CI 0.89 to 1.39). Only one study, involving 1799 participants followed-up for 163 months (median) reported on adverse events (i.e. toxicity, mood changes, deep vein thrombosis, pulmonary embolism, endometrial cancer) with no significant difference between tamoxifen and placebo groups, but there was a non-significant trend towards more endometrial cancer in the tamoxifen group.

    AUTHORS' CONCLUSIONS:

    While tamoxifen after local excision for DCIS (with or without adjuvant radiotherapy) reduced the risk of recurrent DCIS (in the ipsi- and contralateral breast), it did not reduce the risk of overall mortality.

    PMID:
    23076938
    [PubMed - indexed for MEDLINE]


  • ballet12
    ballet12 Member Posts: 981
    edited January 2014

    Hi TB, I realize that you want clarification on whether Tamoxifen prevents recurrence of either DCIS or IDC in patients with prior DCIS. The second study stated that there was a "trend" toward reduction in recurrence of IDC in the ipsilateral (treated) breast.  I'm sure that there are many studies showing a significant effect of Tamoxifen in preventing recurrence of IDC (not just DCIS).  I just don't have the time right now to find them. Maybe Beesie has some handy.

  • TB90
    TB90 Member Posts: 992
    edited January 2014


    ballet:I just found one (a study that clarifies the benefits of tam) and want to tell you how much I appreciate the time you invested in helping to clarify the often confusing data.  I also want to add that for you and the others that have so much experience and knowledge and decide to stick around for our benefit, I want to send great big hugs.  No one else is able to provide me with such detailed responses to my concerns and such enormous emotional support.  Who ever thought that women who I have never met would mean so very much to me.

  • ballet12
    ballet12 Member Posts: 981
    edited January 2014

    TB--glad to help in a small way.  Let us know what you decide and what the "team" recommends. I think you understand the difference between the radiation (targeted) and the Tamoxifen (more generalized effect) now. It's really like comparing apples to oranges.  That's why, with lumpectomies, the radiation is usually a must for local treatment, followed by the Tamoxifen for generalized protection in the long run.

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