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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, RINT1, and possibly MSH6 and PMS2 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, Stage IA, Grade 1, 0/2 nodes, ER+, HER2+ Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 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, Stage IA, Grade 1, 0/2 nodes, ER+, HER2+ Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 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 2/21/2012 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 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, Stage IA, Grade 1, 0/2 nodes, ER+, HER2+ Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 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, Stage IA, Grade 1, 0/2 nodes, ER+, HER2+ Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 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, Stage IA, Grade 1, 0/2 nodes, ER+, HER2+ Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 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, Stage IA, Grade 1, 0/2 nodes, ER+, HER2+ Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 Arimidex (anastrozole)
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Sep 2, 2019 10:30PM Yogatyme wrote:

I also am BRCA1 positive and had dx of micropapillary ca in my right breast and bilateral mastectomy was recommended bc risk of recurrence is 85% for both breasts w BRCA1 mutation. I had the surgery on Aug 13 and opted to not do reconstruction. I am 68 and do not want to have yet another surgery. I am planning to go flat most of the time. I hope your sister gets good care and trusts herself to make the right decision for her. It is completely a personal decision and not one to take lightly.

Yogatyme Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
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Sep 3, 2019 09:26AM viewfinder wrote:

Yogatyme,

My sister had surgery July 8th: double mastectomy and salpingo-oophorectomy. No reconstruction. They wanted to remove her uterus but she refused at this time because of the long healing time, which would interfere with her work.

She's doing extremely well and is getting out and about and working. She does get very tired so takes naps and goes to bed early when she can. Fortunately, her office is in her home and she has an assistant, so she can rest when needed.

She has very serious rheumatoid arthritis, and that is being treated separately.

"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, Stage IA, Grade 1, 0/2 nodes, ER+, HER2+ Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 Arimidex (anastrozole)
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Sep 18, 2019 01:16PM Yogatyme wrote:

viewfinder, I’m glad to hear your sister decided to have the surgeries. Her BS said that brca increases risk of recurrence by 5%???? That is not what I was told and the literature supports what my BS and breast specialist told me......risk is 85%. The risk of ovarian cancer initial occurrence is about 60% (I think) but the problem w ovarian cancer is that by the time you have symptoms the cancer is usually very advanced....hence, one of the silent killers. I hope her recovery goes well. My recovery from oophorectomy was a walk in the park....just a little tenderness. The BMX however knocked my butt into the ground but everyday is better!! Best wishes to your sister....she’s lucky to have you!!❤️

Yogatyme Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
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Sep 18, 2019 04:47PM - edited Sep 18, 2019 04:56PM by viewfinder

Yogatyme, thanks so much for the kind words! She is doing remarkably well after so many surgeries. I'm so happy that your oophorectomy went so well!

Question: they wanted to remove her uterus but she said no because of the long recovery time. I've been told that, like ovarian cancer, with uterine cancer by the time you have symptoms the cancer is usually very advanced. Is that your understanding too?

I wish you well, too. Btw, I'm very lucky to have my sister too!

"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, Stage IA, Grade 1, 0/2 nodes, ER+, HER2+ Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/12/2018 Arimidex (anastrozole)
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Oct 1, 2019 09:59AM Yogatyme wrote:

viewfinder, I had a hysterectomy (uterus only)many years ago, so this was not something I had to consider when I had my oophorectomy but my sister asked about it w her surgery and she was told by 2 different oncology ob/gyns that leaving the uterus helped keep the other organs in place. My niece was told the same (2 different docs), so it might be fine that your sister still has hers. Maybe someone on the forum will have more info.

Yogatyme Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right

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