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Topic: Radiation after double mastectomy?

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Sep 3, 2016 08:35AM

Bluebirdgirl wrote:

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.

“Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope” Dx 7/28/2016, DCIS, Right, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/26/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/21/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 4, 2016 03:43PM AmieM wrote:

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

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Sep 4, 2016 04:44PM Bluebirdgirl wrote:

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!!

“Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope” Dx 7/28/2016, DCIS, Right, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/26/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/21/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 4, 2016 05:30PM LisaAlissa wrote:

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

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Sep 4, 2016 08:39PM ksusan wrote:

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.

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 6, 2016 06:28AM Bluebirdgirl wrote:

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

“Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope” Dx 7/28/2016, DCIS, Right, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/26/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/21/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 6, 2016 09:40AM Annette47 wrote:

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.

Dx 11/20/2012, DCIS, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Dx 11/20/2012, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 12/17/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/20/2013 Breast Hormonal Therapy 3/31/2013
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Sep 6, 2016 12:04PM Bluebirdgirl wrote:

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!

“Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope” Dx 7/28/2016, DCIS, Right, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/26/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/21/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 6, 2016 03:56PM - edited Sep 6, 2016 03:58PM by BarredOwl

This Post was deleted by BarredOwl.
Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Sep 6, 2016 04:03PM - edited Sep 6, 2016 04:04PM by BarredOwl

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

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Sep 6, 2016 06:20PM - edited Sep 6, 2016 06:22PM by Annette47

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.

Dx 11/20/2012, DCIS, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Dx 11/20/2012, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 12/17/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/20/2013 Breast Hormonal Therapy 3/31/2013
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Sep 6, 2016 09:40PM - edited Oct 26, 2016 04:33PM by BarredOwl

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

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Sep 7, 2016 02:05AM dragonsnake wrote:

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

Diagnosed @49 over a routine 3D mammogram;15/4/2016 DCIS 3cm med to high grade, comedo necrosis; ER+/PR+ , two lumpectomies failed to achieve clean margins, about 9 cm DCIS removed; 7/13/2016 BMX, SNB left 0/2 Dx 5/23/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER+/PR+ Surgery 5/23/2016 Lumpectomy Surgery 6/2/2016 Lumpectomy Surgery 7/13/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right
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Sep 7, 2016 03:01PM LAstar wrote:

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. Singing 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.

Dx 3/5/2012, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR- Surgery 4/6/2012 Lumpectomy: Left Surgery 5/4/2012 Lumpectomy: Left Surgery 6/19/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 10/5/2012 Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 1/26/2015 Reconstruction (left): DIEP flap
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Sep 7, 2016 07:02PM Bluebirdgirl wrote:

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

“Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope” Dx 7/28/2016, DCIS, Right, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/26/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/21/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 7, 2016 08:21PM BarredOwl wrote:

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

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Sep 8, 2016 09:36AM Bluebirdgirl wrote:

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

Bluebirdgirl

“Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope” Dx 7/28/2016, DCIS, Right, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/26/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/21/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 8, 2016 11:51AM LAstar wrote:

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.

Dx 3/5/2012, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR- Surgery 4/6/2012 Lumpectomy: Left Surgery 5/4/2012 Lumpectomy: Left Surgery 6/19/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 10/5/2012 Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 1/26/2015 Reconstruction (left): DIEP flap
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Sep 19, 2016 08:54PM - edited Sep 19, 2016 08:56PM by BarredOwl

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

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Sep 20, 2016 05:54PM ksusan wrote:

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

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 20, 2016 10:40PM - edited Sep 20, 2016 10:42PM by Bluebirdgirl

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

“Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope” Dx 7/28/2016, DCIS, Right, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/26/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/21/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 20, 2016 10:51PM LAstar wrote:

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

Dx 3/5/2012, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR- Surgery 4/6/2012 Lumpectomy: Left Surgery 5/4/2012 Lumpectomy: Left Surgery 6/19/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 10/5/2012 Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 1/26/2015 Reconstruction (left): DIEP flap
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Sep 22, 2016 01:17AM - edited Sep 22, 2016 01:18AM by exercise_guru

This Post was deleted by exercise_guru.
Age 42 05/15/2015 PALB2 mutation, DBL Breast Cancer Type 1A Grade 3 ER+PR+(right 1.3cm,.5cm) HERr+(left1.6 cm), 06/26/2015 BMX with TE 8/27/15 Chemotherapy TCH 12/30/2015 TAH/BSO/Reconstruction 1/29/16 Arimidex 3/1/16 Femara 5/6/16 Tamoxifen
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Sep 26, 2016 12:47AM Kroge6 wrote:

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.

Dx 4/25/2016, DCIS, Right, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 5/22/2016 Lumpectomy: Right; Mastectomy: Left, Right

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