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Topic: Prophylactic Double Mastectomy -still expressing breast milk

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jan 4, 2017 10:20PM - edited Jan 5, 2017 12:40AM by Lajudy

Lajudy wrote:

I have a really strange question. So, I have finished both my mastectomy and my exchange surgery. I have silicone implants. My recovery has been fine... except, tonight, I noticed that I can still express breast milk - not a lot but I thought that this whole system should be shut down after a double mastectomy.

We did the nipple delay before the mastectomy. On the day of my mastectomy (presurgery), the doctor saw some milk and she was surprised.

I thought I noticed a tiny bit once or twice before tonight so I thought I would see if I could express any and sure enough I could. Should I be concerned about this?

I recall my mother being concerned post surgery at how my breasts didn't look quite as "emptied" as she'd expected.

Have heard of this before?

I greatly appreciate any information you may have. Thank you so much for any ideas.

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Jan 5, 2017 05:32AM mustlovepoodles wrote:

That sounds odd.You shouldnt be able to make or express milk after BMX. Call your BS today.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/19/2015 Lumpectomy Surgery 9/2/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/3/2016 Prophylactic mastectomy: Left, Right Surgery 10/18/2016 Hormonal Therapy Femara (letrozole) Surgery
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Jan 5, 2017 07:09AM ravzari wrote:

Yeah, I'd second the "Call your BS".

After a mastectomy, you should have NO breast tissue left (save for on a microscopic level, as it's impossible for a surgeon to get 100%) and should not be physically able to produce milk as all of the related tissue that would allow it should have been removed during the mastectomy.

Prophylactic BMX no recon, June 2016, due to strong family history of BC. NF1 positive.
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Jan 5, 2017 07:11AM pupmom wrote:

That makes NO sense.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Jan 5, 2017 07:43AM Lajudy wrote:

Thank you. This is what I was thinking. So, it sounds like possibly, there still breaat tissue. It sounds like maybe I need to have a "Second" DM... I will see a DIFFERENT breast surgeon for a second opinion.

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Jan 5, 2017 07:44AM Lajudy wrote:

Thank you. This is what I was thinking. So, it sounds like possibly, there still breaat tissue. It sounds like maybe I need to have a "Second" DM... I will see a DIFFERENT breast surgeon for a second opinion.

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Jan 5, 2017 07:46AM Lajudy wrote:

Thank you. This is what I was thinking. So, it sounds like possibly, there still breaat tissue. It sounds like maybe I need to have a "Second" DM... I will see a DIFFERENT breast surgeon for a second opinion.

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Jan 5, 2017 12:48PM farmerlucy wrote:

When I get my yearly MRIs the radiologist remarks about the amount of remaining breast tissue he sees. (Not much in my case.) So if this persists you might inquiry about doing one.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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May 4, 2017 05:14PM Ngrd wrote:

what ended up happening

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May 5, 2017 06:16AM Lajudy wrote:

Thank you for checking in and asking. Also thank you to those who replied. So I revisited the surgeon. I was not satisfied with her answer. She refused to order an MRI. Her response what, "well, it is not normal but I am not concerned." She offered to do an ultrasound in three months time (which I had read online is quite useless ). She claimed that an MRI before 1 year isn't very effective bc of scar tissue and healing, etc. I felt that was nonsense. I felt that was probably some statute of limitations that she was trying to avoid being responsible for leaving too much in. I'm not the type who has the energy to sue but I suppose that she was likely concerned about this.

Trying to make a long story short.. my on ordered an MRI for me and I saw the images. I still have more breast tissue left in my left breast (the one that expressed milk). I am a teacher so I will pursue looking into what to do over the summer when I have a chance to get second opinions.

Thank you to the person who suggested to do an MRI.

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May 17, 2017 07:01PM - edited May 17, 2017 08:22PM by Ngrd

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May 17, 2017 09:29PM jerzeygirl17 wrote:

Hi there, how is it going? I recently had Bilateral as well 8 weeks ago and noticed I was still expressing milk. My BS was a bit taken back and shared it was impossible however I went to see her to show her first hand. She wanted me to keep an eye on it until my second stage implant surgery....She had shared that it would be a simple revision which she will do next month when I have my expanders removed for implants.

But I was def freaked out and still a bit worried but she seemed to take it all in stride at this point. But I was def mortified when it first happened in my PS office when he was removing my stitches. He had never seen it happen in his 30 years.

Just wanted to follow up to see how you are doing and share with you that I am going thru the same thing 8 weeks post op.

You are not alone sista :)

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Nov 21, 2019 02:12PM - edited Nov 22, 2019 07:06PM by Eyecandy112496

This Post was deleted by Eyecandy112496.

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