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Topic: Post masectomy radiation for Paget’s disease and DCIS

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Jan 21, 2019 10:17AM

Kissy72 wrote:

I am new to the group and would love to know the treatment plans of others with a similar diagnosis. I had a unilateral masectomy on 12/19. Surgical pathology revealed Paget’s disease. I also had a large multi focal DCIS extending from nipple to within 1 mm of chest wall. I had one close margin (anterior upper outer) High nuclear grade 3 ER & PR negative. No invasive disease. Sentinel node biopsy removing 2 nodes and both were clear. My medical team has recommended no further treatment. I am curious if anyone with a similar diagnosis had radiation post masectomy. According to my reading, high nuclear grade has a higher recurrence rate. Wondering how much benefit could be derived from radiation.

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Jan 21, 2019 05:59PM Gurtie1 wrote:

I had a bilateral mastectomy in November for Paget’s. I was blessed that it was contained just to the nipple. Clean margins and no radiation or chemo. Keep strong and know you are not alone.

Sorry I wasn’t much help

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Jan 22, 2019 11:40AM - edited Jan 22, 2019 10:10PM by alto

Bookmarking because I had Paget's on the skin and when they went to remove it,they found DCIS underneath (also ER-/PR-, grade 3).

I had a couple of surgeries to try to remove the DCIS, then a unilmastectomy last week.

I'm awaiting pathogy and will let you know what they say in my case. Everyone's road is different, of course. Has your team explained their reasoning? It might make you feel more comfortable to know what risks they weighed out in making their recommendation

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/10/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/16/2019 Mastectomy: Right
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Jan 22, 2019 01:00PM Kissy72 wrote:

Thank you for reply. I have only met with my breast surgeon for follow up so far. I had to request to meet with radiation oncologist since he recommended no further treatment. I meet with him next week and will ask many questions so I can understand his reasoning. However, I have also started the process of getting a second opinion at MD Anderson. I would like to think there is consensus among radiation oncologists on how to treat a case like mine and yours. I’m not sure that there will be, but I will feel etter getting an additional opinion. I don’t want radiation but I also don’t want to feel like not having it is risky.







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Jan 28, 2019 11:09AM alto wrote:

I ended up getting clear margins, so no rads recommended for me.

Doc just mention possible Tamoxifen for other breast. If that had come up before, I might have said take ‘em both.

Kissy72, I hope the 2nd opinion gives you some good information.

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/10/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/16/2019 Mastectomy: Right
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Jan 29, 2019 09:33AM eliza_246 wrote:

Hi Alto

Your case is exactly same as mine.

4 weeks ago lumpectomy for Paget's when they found 22mm high grade DCIS in the removed tissue. NOTHING had shown up on mammogram or ultrasound prior to the op. It was luckily removed with clear margins, but because they didn't know if there was anymore lurking unseen they have offered a mastectomy or the other option was to just stick with yearly screening............ don't think so! So am just about to make the decision on the mastectomy, see no point in an MRI as that is just as likely to come back with no DCIS and I would still be left with doubt.

My question to you was, did your team at anytime allude to the fact that there may have been more totally separate DCIS, so even if they had achieved clear margins was there not worry of other unseen areas, and thus a no brainer for a mastectomy? My team cannot give me any stats on how often there are totally separate areas and thus can offer no comfort that rest of the breast is clear.......... Just wondered how your team had addressed this?


Thanks

Eliza

Dx 12/1/2018, Paget's, Right, Stage 0, Grade 3 Surgery 12/19/2018 Lumpectomy: Right Dx 12/20/2018, DCIS, Right, 2cm, Stage 0, Grade 3 Surgery 2/27/2019 Lymph node removal: Sentinel; Mastectomy: Right
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Jan 29, 2019 06:32PM - edited Jan 29, 2019 06:33PM by Kissy72

Back with an update. The radiation oncologists at MD Anderson agree that I should not have radiation. Feel better with 2 hospitals, 1 being the number one cancer treatment center in the US, having the same recommendation. I am going to move forward with 2nd opinion on my pathology as well, however.

Eliza, according to what I've read, MRI is quite accurate in determining the extent of DCIS in the breast. In my case, mammography detected a few microcalcifications, but MRI showed extensive disease. The MRI is how a I learned how close it was to my chest muscle. Don't know what you're insurance situation is, but I think it is worthwhile.

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Jan 29, 2019 10:21PM - edited Jan 29, 2019 10:25PM by alto

Eliza, I had two surgeries before without clear margins. They didn't want to keep doing that (they had already dug down 2.5 cm), and we were close to the point of a cosmetically bad outcome, so they said it was mastectomy time.

I am glad I got the MRI, as it showed some areas of concern (even in the opposite breast, which I wasn't worried about), but yes, not everything. But my previous mammos and ultrasounds showed no problems at all, so the MRI at least detected something

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/10/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/16/2019 Mastectomy: Right
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Jan 30, 2019 07:39AM eliza_246 wrote:

Hi Alto

Understand re MRI might make it easier, but I think the doubt would always be there, as there are equal amount of others on the forum where the DCIS didn't show in the MRI. So I think I am going forward with single MMX. So reading your other post in the surgery group I will be interested to see what the advice you get re the other breast preventative options etc., and what you decide.

I hope the recovery is going well for you.

thanks

Eliza

Dx 12/1/2018, Paget's, Right, Stage 0, Grade 3 Surgery 12/19/2018 Lumpectomy: Right Dx 12/20/2018, DCIS, Right, 2cm, Stage 0, Grade 3 Surgery 2/27/2019 Lymph node removal: Sentinel; Mastectomy: Right
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Feb 22, 2019 04:33PM - edited Feb 22, 2019 04:43PM by alto

I haven't met with the MO yet, but my pathology results did show DCIS both at and away from the surgery site, so I'm assuming that means I had another area of DCIS that might not have been caught.

Everyone's situation is so different... I also found it tough to get stats or advice. I went in wanting the mx, got scared about it, and then just felt it was the right thing to do (which was good, because at that point everyone else agreed with me).

Of the strategies I've tried, going with my gut has worked best for me so far, and it sounds like you trust yours. You will do great.

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/10/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/16/2019 Mastectomy: Right
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Feb 22, 2019 07:47PM eliza_246 wrote:

Yes, went with the gut, and going in on Thursday for the MMX and SNLB.

Thanks for your thoughts

Eliza

Dx 12/1/2018, Paget's, Right, Stage 0, Grade 3 Surgery 12/19/2018 Lumpectomy: Right Dx 12/20/2018, DCIS, Right, 2cm, Stage 0, Grade 3 Surgery 2/27/2019 Lymph node removal: Sentinel; Mastectomy: Right
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Mar 8, 2019 05:29PM - edited Mar 8, 2019 05:30PM by alto

I met with the MO about further treatment. She confirmed there were multiple areas of DCIS.

She only recommended tamoxifen if I'm strongly ER+. They found weak ER+ in the first sample.

They will go back and test the more recent tissue with DCIS to see if it's the same or different. We'll go from there.

She said baseline risk for breast cancer is 12% (any woman's risk) and so she'd estimate me at about 20% for contralateral.

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/10/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/16/2019 Mastectomy: Right
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Oct 25, 2019 04:25PM Suzwilso wrote:

I am in a very similar circumstance - post Mastectomy w/ SLN Bx last week and just got pathology with DCIS grade 3 w/ Paget's (not mentioned before the surgery). I have my apt with Oncologist on Tuesday so helpful to know others experience.

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Oct 26, 2019 12:06AM Moderators wrote:

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