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Topic: BRCA1 mutation > double mastectomy ?!

Forum: Positive Genetic Test Results —

BRCA 1 & 2, ATM, BARD1, CDH1, CHEK2, MRE11A, NBN, p53, PALB2, PTEN, RAD50, RECQL, and RINT1 genes

Posted on: May 8, 2019 08:12PM

viewfinder wrote:

My sister is triple negative and has the BRCA1 mutation. She found about the mutation in March. She recently finished chemotherapy.

Prior to chemo she had two lumpectomies in her right breast so far and is scheduled for a third lumpectomy near the end of June. Then 3-6 weeks of radiation.

When she saw her surgeon today, all of a sudden she's recommending a double mastectomy instead of the third lumpectomy. She says with the BRCA1 mutation, my sister has a "5% chance of cancer recurrence." The doctor hadn't discussed this previously (other than telling my sister she had the mutation).

My sister doesn't want a double mastectomy at age 70 because it's major surgery.

Your thoughts PLEASE!

Thank you!

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole)
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May 8, 2019 11:49PM Veeder14 wrote:

Hi viewfinder,

Did your sister tell you why the surgeon is recommending double mastectomy? Why is your sister having separate lumpectomies instead of having surgery all at once and then treatment? I think the decision is very individual.

I found out that I'm BRAC2 just a few months before I was diagnosed at age 60. The NP giving me the biopsy results told me that she recommends mastectomy for all BRAC mutation patients. Although she wasn't a surgeon or qualified to make those recommendations as fact, I was so upset because I didn't want that surgery because of all my back/neck problems (and other reasons also) and having to endure major surgery. It was about 3 weeks before I got in to see the breast surgeon who recommended a lumpectomy because the tumor was small .8 mm. I was relieved however he also mentioned that due to my high risk because of the mutation,insurance would pay for a mastectomy.


Dx 1/2/2018, ILC, Left, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 1/26/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/8/2018 Hormonal Therapy 2/28/2019 Hormonal Therapy
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May 9, 2019 08:34AM viewfinder wrote:

Veeder14, I don't know why my sister had two lumpectomies; I think they called the second a re-excision and I assume it will be the same if she has the third. My guess is that her margins weren't clear after the first and second.

Everything I read is that someone with the BRCA1 mutation should have a mastectomy, often in both breasts. Because the is triple negative, she can't take any medicine such as tamoxifen or arimidex.

I see my own oncologist tomorrow. I'm going to ask her what she thinks.

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole)
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May 9, 2019 08:55AM farmerlucy wrote:

I might get a second opinion or meet with a genetic counselor. A mastectomy without reconstruction is much easier than one with recon.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/20/2012 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 3/10/2012 Lymph node removal: Sentinel Surgery 7/21/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/9/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/13/2015 Prophylactic ovary removal
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May 10, 2019 07:19PM - edited May 10, 2019 07:20PM by viewfinder

My oncologist said my sister should have a double mastectomy because she has a gene mutation. My sister is going for a second opinion. This is a very personal decision and I pray she makes the right one...assuming there is even such as thing as the "right one."

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole)
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May 15, 2019 03:12PM viewfinder wrote:

My sister is seeing her radiologist as I type this. I received a text from her a while ago, and she is so scared about having a double mastectomy. She still works and is afraid it can interfere with her job. I personally think she should have a double mastectomy; if cancer recurs she'll have to go through all these treatments again (chemo, radiation). Because she's triple negative, she can't take traditional cancer medicine like I do.

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole)
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May 30, 2019 05:12PM viewfinder wrote:

My sister went to a new surgeon, who recommended a double mastectomy plus having her ovaries removed. She's decided to go with it but is understandably anxious.

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole)
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May 30, 2019 06:52PM ShetlandPony wrote:

If your sister is ok with going flat, no reconstruction, there will be less surgery, less risk of complications, less recovery time needed, etc.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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May 30, 2019 07:14PM viewfinder wrote:

Thanks for your reply. I don't think she's having reconstruction. She's 70 so don't think she should put herself through the additional surgery.

“You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole)

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