Radiation after double mastectomy?

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Bluebirdgirl
Bluebirdgirl Member Posts: 115

Hi, I am new to this site and have been reading a lot of interesting things. I was diagnosed 7/28/16 at age 49 with DCIS, right breast, high grade with comedo necrosis, ER+ PR+ (not tested for HER2). BRCA negative. I decided to have a bilateral mastectomy, no nipple sparing, with expanders placed at same time. I am now 8 days post surgery. Largest tumor focus was 7.5 cm. Closest margin to the DCIS is the deep margin which is 2mm away. Sentinel node negative. DCIS has a Ki-67 proliferative index of 40 percent, whatever that means! My surgeon said he does not recommend radiation treatment. A friend of mine questioned this and now I am wondering if radiation is warranted for me. I am laying in bed in pain, wanting this nightmare to be over, but maybe it's not yet. If anyone has advice or a story to share, I would really appreciate it. Thank you.

Comments

  • AmieM
    AmieM Member Posts: 5
    edited September 2016

    Hello Bulebirdgirl,

    I was diagnosed with DCIS at age 49, before turning 50. I choose unilateral mastectomy. I was told that I don't need radiation because the lymph nodes were negative. There was nothing to radiate. I regret not having BMX. Good luck!

    Amie

  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited September 2016

    Thank you for your input, AmieM. The more I look into it I am thinking the doctor is right, I don't need it. And It seems everyone on here has an oncologist. I was never referred to one. Strange.

    Good luck to you as well!!

  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited September 2016

    Hi Bluebirdgirl,

    You will want appointments with both (a) a radiation oncologist, who is the doc with the actual expertise to conclude that radiation does (or does not) have anything to offer you; and (b) a medical oncologist, who is the doc with the expertise to decide whether hormonal therapy (since you're ER+/PR+) is appropriate, and to follow you over the next years.

    HTH,

    LisaAlissa

  • ksusan
    ksusan Member Posts: 4,505
    edited September 2016

    I had DCIS on the left (no nodes) and IDC on the right (one node). After BMX, I received radiation only on the right (node-positive) side.

  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited September 2016

    Thank you, LisaAlissa, that is good advice. I'm not sure why I have not been referred to any oncologist. I am going to ask for one today. And thanks, ksusan, for sharing your experience. Good luck to you both

  • Annette47
    Annette47 Member Posts: 957
    edited September 2016

    Usually the role of an oncologist in a DCIS patient is to discuss anti-hormonal treatments such as Tamoxifen which is not usually recommended for someone with pure DCIS and a BMX. The reason is that with pure DCIS the treatment is not needed to quell spread to other parts of the body (since it would be impossible by definition), and there isn’t enough breast tissue left for the benefits of the drugs to outweigh the risks. For someone with a lumpectomy or a UMX, it might be given to protect the remaining breast tissue, but not with a BMX. You could certainly ask to speak to an oncologist, but I would suspect this is why you haven’t already been referred.

    My understanding is that 2mm margins are acceptable under the most recent guidelines, which would mean you don’t need radiation, but a consult with a radiation oncologist to discuss certainly wouldn’t hurt.

  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited September 2016

    Annette, thanks for that clarification and that makes a lot of sense. I thought the margins were good as well. I am off to see my surgeon for another catastrophe which I posted about in DCIS, twilight zone! Will this never end???

    Thanks for your reply!

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2016

    I'm not sure what guidelines are being referred to above. However, please note that the most recent guideline from ASCO does not apply to the setting of mastectomy. It relates to margin sizes for those receiving breast-conserving surgery ("lumpectomy") for DCIS and does not apply to Bluebirdgirl:

    ASCO (2016): http://jco.ascopubs.org/content/early/2016/08/10/JCO.2016.68.3573.full

    The indications for radiation following breast conserving therapy and mastectomy are not the same. In addition, the adequacy of margins would be based on different studies done in different patient populations. The studies in the mastectomy setting are not entirely consistent with each other. See for example:

    Klein (2015): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4498005/pdf/40064_2015_Article_1032.pdf

    FitzSullivan (2013): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4337951/pdf/nihms660906.pdf

    These papers are not a substitute for medical advice. Unfortunately, there may be exceptions or special circumstances that are not clearly addressed by a study. We may miss important distinctions or caveats that a clinician would appreciate. Also, we may not be aware of all relevant publications, which may alter understanding. Thus, patients should not rely on isolated publications for treatment decisions, but should use them to inform discussions with relevant medical professionals.

    Bluebirdgirl, I recommend that you request a consultation with a Radiation Oncologist to ensure you receive accurate, current, case-specific medical advice from a person with the appropriate medical expertise.

    BarredOwl

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2016

    Annette47:

    May I ask what recent guideline you are referring to that addresses margins for DCIS in the mastectomy setting and post-mastectomy radiation therapy ("PMRT")?

    BarredOwl

  • Annette47
    Annette47 Member Posts: 957
    edited September 2016

    Not specific to DCIS mastectomies, but more generally .... it was from this article: http://www.breastcancer.org/research-news/20140402. As I said, this was just my understanding that if 2 mm would be considered an acceptable margin in general, it should apply to the present situation as well. Specifically this quote from the article seems relevant: “Still, even if a woman doesn’t get adjuvant treatments, there is no evidence that the clear margins need to be wider than no ink on the tumor.

    I did also say though that a consult with a radiation oncologist would not be a bad idea.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited October 2016

    Thanks Annette47. I would be concerned that it might not be appropriate to extrapolate from different settings with potentially different risk profiles.

    I note that the featured document in the link you posted is a guideline pertaining to margins for breast-conserving surgery ("lumpectomy") with whole-breast irradiation in stages I and II invasive breast cancer.

    SSO / ASTRO (2014): Society of Surgical Oncology American Society for Radiation Oncology Consensus Guideline on Margins for Breast-Conserving Surgery With Whole-Breast Irradiation in Stages I and II Invasive Breast Cancer

    http://www.redjournal.org/article/S0360-3016(13)03315-4/pdf

    ASCO endorsed this guideline with some qualifications here:

    ASCO (2014): Margins for Breast-Conserving Surgery With Whole-Breast Irradiation in Stage I and II Invasive Breast Cancer: American Society of Clinical Oncology Endorsement of the Society of Surgical Oncology/American Society for Radiation Oncology Consensus Guideline

    http://jco.ascopubs.org/content/32/14/1502.full.pdf

    Denise-G recently posted a link to a guideline pertinent to margin sizes for those receiving breast-conserving surgery ("lumpectomy") and whole breast irradiation ("WBRT") for DCIS:

    ASCO (2016): http://jco.ascopubs.org/content/early/2016/08/10/JCO.2016.68.3573.full

    (A pdf version is available there also)

    [EDIT 10/26/2016: A PDF version was also published here: http://www.practicalradonc.org/article/S1879-8500(16)30109-6/pdf ]

    "There are limitations to this guideline. It applies to patients with DCIS and DCIS-M treated with WBRT. The findings should not be extrapolated to DCIS patients treated with APBI or those with invasive carcinoma for whom a separate guideline has been developed.(33) While studies including patients treated with and without WBRT were included in the meta-analysis, a meta-analysis of studies of treatment with excision alone was not conducted. Additionally, all of the studies included in the meta-analysis were retrospective. However, in the absence of any planned prospective randomized trials addressing the question of margin width and local recurrence, these studies represent the best available evidence for clinical decision making."

    Thus, with breast conserving therapy ("BCT"), those with DCIS should look to the BCT / DCIS guideline, while those with invasive disease should in general look to the BCT / invasive guidelines. There is overlap between the DCIS Margin Guideline and the Invasive Cancer Margin Guideline for DCIS with micro-invasion (DCIS-M or DCIS-MI), a point to discuss with one's Radiation Oncologist perhaps.

    NCCN guidelines (Version 2.2016) include a completely separate algorithm for post-mastectomy radiation in the setting of invasive disease (Stage I, IIA, or IIB disease OR T3, N1, M0), which takes into account nodal status, tumor size, and margin status. [EDIT (Sept 19, 2016): See also, this recent ASCO–ASTRO–SSO guideline update regarding post-mastectomy radiotherapy in invasive T1-T2 size tumors:

    ASCO–ASTRO–SSO (2016): http://jco.ascopubs.org/content/early/2016/09/15/JCO.2016.69.1188.full#ref-3

    ASCO–ASTRO–SSO(2016): PDF version

    [EDIT 10/26/2016): A PDF version is also available here (upper right): http://link.springer.com/article/10.1245/s10434-016-5558-8 ]

    T1 Tumor ≤ 20 mm in greatest dimension;

    T2 Tumor > 20 mm but ≤ 50 mm in greatest dimension. ]

    For DCIS with mastectomy, the adequacy of margins is based on different studies done in a different patient population. The clinical studies of the adequacy of margins in patients with DCIS treated by mastectomy do not appear to be entirely consistent, including recent publications in 2015 and 2013. Thus, if there is a question about the adequacy of mastectomy margins and whether post-mastectomy radiation should be considered or not, consultation with a Radiation Oncologist is the probably the best approach to ensure receipt of up-to-date, accurate, case-specific advice, based on expert interpretation of the relevant clinical studies in the DCIS mastectomy setting.

    BarredOwl

  • dragonsnake
    dragonsnake Member Posts: 159
    edited September 2016

    I had  a BMX after about 9 cm DCIS removed via two lumpectomies. No tamoxifen prescribed.

  • LAstar
    LAstar Member Posts: 1,574
    edited September 2016

    You may have trouble finding an oncologist that will follow you given you had DCIS And a BMX; I did. One just told me to come back if my bones start to hurt. I finally found someone that takes my case seriously, and it's helpful to have someone to schedule imaging for monitoring and who I can come to in case something comes up.

  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited September 2016

    Thank you, everybody, for your comments. I now have an oncologist as a 3 cm lesion has been found on my liver. Had an MRI lined up but then they called and said we can't do the MRI because of your expanders. Now I'm waiting to hear what the next step is. Very frustrating and depressing

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2016

    HI Bluebirdgirl:

    I am very sorry you are going through more fear and anxiety. Will be hoping for answers and a clearly benign finding for you.

    BarredOwl

  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited September 2016

    Thank you, BarredOwl. I will update soon with good news hopefully.

    Bluebirdgirl

  • LAstar
    LAstar Member Posts: 1,574
    edited September 2016

    I'm so sorry to hear that you are back in the waiting and worrying mode, Bluebirdgirl. I will be so happy to hear your good news when this is resolved. Keep us posted.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2016

    For information only and subject to discussion with one's treatment team, for those treated with mastectomy and invasive breast cancer, I updated my post above to include a link to a new September, 2016 ASCO–ASTRO–SSO guideline update regarding post-mastectomy radiotherapy in the setting of T1- or T2-size invasive disease.

    BarredOwl

  • ksusan
    ksusan Member Posts: 4,505
    edited September 2016

    I just read a summary of that--thanks, BarredOwl.

  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited September 2016

    Updating again. I had a second CT done, it also was suspicious for metastatic liver lesion. Oncologist ordered a pet scan and the lesion did not show. Now he wants an MRI but I have to wait until my expanders are exchanged for implants. He also put me on tamoxifen. I do not feel comfortable with this oncologist, he said I am sensitive and that DCIS is not cancer, blah, blah. He hadn't looked at my records to see that I was grade 3 with comedonecrosis and my ki-67 is 40%. I am getting a second opinion from another oncologist September 30.

    Bluebirdgirl

  • LAstar
    LAstar Member Posts: 1,574
    edited September 2016

    He is just insensitive. Glad you are getting a second opinion.

  • exercise_guru
    exercise_guru Member Posts: 716
    edited September 2016

    I think it is important to follow the information. May I ask how they found liver lesions in the first place? my doctors did not run a CT or PET scan and I have found most doctors are reluctant to do this if nodes are negative. I would very much like to hear a little more of your story.

    Hang in there you are doing the right thing following your instinct.

  • Kroge6
    Kroge6 Member Posts: 14
    edited September 2016

    I was dx with dcis high grade with comedo necrosis 6+cm. I had a Dmx not nipple sparing. My pathology came back with one positive margin and 2 close <1mm margins. I just finished radiation. The doctors said it was pretty rare to have radiation after double mastectomy. So sorry you have to deal with all this.

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