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Topic: How many get BC after preventative mastectomy?

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

Posted on: Feb 11, 2008 11:06AM - edited Mar 12, 2008 06:10PM by gerberer

gerberer wrote:

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Feb 11, 2008 01:29PM - edited Feb 11, 2008 02:56PM by cp418

This is the horrible reality of this disease.  A bilateral mastectomies will certainly reduce a woman's risk of local recurrance but is no protection or guarantee to prevent future mets.  I think if you read through these forums maybe in the high risk and recurrence forums you will have a better understanding of this risk.



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Feb 11, 2008 03:38PM - edited Mar 19, 2008 01:10PM by TenderIsOurMight

Gerber, how horrible for your friend. So incredibly tragic, when she obviously tried hard to avoid this dastard disease. How difficult this must be for you, also.

The percentage often quoted for BC after preventive mastectomy is about 1%. We all know all breast cells are not removed so potential for BC remains. I don't know what her circumstances were, perhaps she was very high risk. I hope you remember daily we are all different from one another, and that your personal pathology report came back without cancer.

Prophylactic mastectomy(s) continues to be vigorously debated and actively investigated, with one obvious goal being to try to minimize outcomes such as your friends. Recent statistics from SEER data reveal American women continue to turn to prophylactic mastectomy at increasing rates, which has puzzled oncologists, breast surgeons and advocacy groups themselves. Recently I read a news report suggesting women need to be better educated on this topic, and suggesting the procedure is turned to out of emotion. Of course we high risk patients, as well as breast cancer patients have our own opinions on the topic which do not seem to get heard in a public forum. This would be a great thread to discuss on it's own, and may give the Experts who read this site some much valued personal input.

I am reposting one write up on BRCA genetics I did for our board in 2007 and one new 2008 abstract on MRI use during this procedure. Hope these help on this discussion.

1. "For about a decade, commercial BRCA1 and BRCA2 gene testing has been available, using DNA from one's blood and performing a "full sequence" DNA test, looking for genetic alterations in these two tumor suppressor genes which have be associated with hereditary breast and ovarian cancer. Yet specialists have known that looking at the sequence, or the genetic code, of these genes does not explain the underlying cause of cancer in some families.

In the March 22, 2007 issue of the Journal of the American Medical Association, a study was published looking at 300 breast-cancer patients who also had four or more cases of breast or ovarian cancer in their family, and who had negative results with the standard, full sequence BRCA test. The researchers found that mutations in BRCA1 and BRCA2 genes included many individually rare gene rearrangements which were what is called "high penetrance". A highly penetrant gene will express itself almost regardless of the effects of environment, whereas a gene with low penetrance will only sometimes produce the symptom or trait with which it has been associated.

"Among patients with breast cancer and severe family histories of cancer who test negative for BRCA1 and BRCA2, approximately 12% can be expected to carry a large genomic deletion or duplication in one of these genes, and approximately 5% can be expected to carry a mutation in CHEK2 or TP53. Effective methods for identifying these mutations should be made available to women at high risk.” JAMA /07

This study suggests that there are differing types of genetic changes in the BRCA1 and BRCA2 genes, rearrangement gene changes ("genomic rearrangements") in addition to sequence gene alterations. It may help explain why some families have such high incidence of breast and ovarian cancer, yet test negative on the traditional sequence test. If you had very recent BRCA1 and BRCA2 testing, it may have included these genomic rearrangements, so best to check with your genetic counselor.

BART stands for BRACAnalysis® Rearrangement Test. BART is appropriate for women who have had full sequence analysis for BRCA1/2, have tested negative and are at very high risk (established with your genetic expert counselor based on your family tree) because these rearrangements are quite rare."

2. Cancer. 2008 Feb 6

Title: Can magnetic resonance imaging be used to select patients for sentinel lymph node biopsy in prophylactic mastectomy?

McLaughlin SA, Stempel M, Morris EA, Liberman L, King TA.
Breast Service, Department of Surgery, Memorial Sloan‐Kettering Cancer Center, New York, New York.

"BACKGROUND: Sentinel lymph node biopsy (SLNB) in the setting of prophylactic mastectomy (PM) remains controversial. In the current study, recent experience with PM was described and the value of preoperative magnetic resonance imaging (MRI) was analyzed in selecting patients for PM with or without SLNB. METHODS: Between January 1999 and January 2006, 529 patients underwent 613 PMs. Both preoperative magnetic resonance imaging (MRI) and SLNB were performed selectively at the discretion of the surgeon. RESULTS: Occult cancer was identified in 33 of 613 PMs (5%) (10 invasive and 23 ductal carcinoma in situ cases). PM with SLNB was performed in 393 of 529 patients (74%), 178 of whom underwent MRI. Of these, occult cancer was found in 6 of 178 patients (3%), all of whom had negative SLNB. Preoperative MRI was concordant with PM in 4 of 6 cases with occult carcinoma. The remaining 215 of 393 patients (55%) underwent PM with SLNB without MRI. Occult cancer was found in 18 of 215 patients (8%); 3 had positive SLNB. Overall, PM with SLNB spared 4 of 393 patients (1%) from axillary lymph node dissection (ALND). Among 136 patients undergoing PM alone, 57 had preoperative MRI. MRI detected 5 cancers and PM revealed an additional 4 occult carcinomas not detected by MRI. Overall, 9 of 136 patients (7%) undergoing PM alone were found to have occult cancer, 3 of which were invasive, raising the decision of reoperation with ALND. CONCLUSIONS: Occult cancer was identified in 5% of PMs. PM with or without SLNB spared only 4 of 393 patients (1%) from undergoing ALND, whereas PM alone identified unsuspected invasive disease in 3 of 136 patients (2%). When performed, MRI accurately ruled out the presence of an invasive cancer in the prophylactic breast, suggesting that MRI can be used to select patients for PM without SLNB. Cancer 2008. (c) 2008 American Cancer Society."

3. Adding Tamoxifen consideration for prophylaxis to this topic of preventive mastectomy(s) for completeness sake. If high risk by gene studies, might one consider Tamoxifen to further reduce one's risk? Most would say this is overkill in the absence of true pathology upon breast removal. Yet open mindedness in debate and individual circumstances is worthwhile, as we all know and deserve.

Words defy me on the pain you must feel for your friend. I am so very sorry. Thank you for posting this gut wrenching question, Gerber. Perhaps your friend might consider joining us here at breastcancer.org.

All the best to you,

It cannot be emphasized too strongly that treatment of each patient is a highly individualized matter. (FDA-approved labeling for warfarin (Coumadin) NDA 9-218/5-105)
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Feb 11, 2008 04:14PM Hanna wrote:

Hi Gerber,  I'm so sorry to hear about your friend's cancer in her bones.  If she didn't have any breast cancer ever - either DCIS or invasive but had PBM's to prevent breast cancer - and you are positive her bone cancer is breast cancer mets to the bone, then I do think that is a very rare thing. But for a few reasons, it can happen. 

Breast cancer that metastasizes to the bone or anywhere, still has the pathological features of breast cancer.  It would have a different pathology from say a colon cancer that had mets to the bone. 

I had a friend who had a breast cancer found in a lymph node under her arm, but no primary breast cancer was found until after her mastectomy specimen was examined by the pathologist.  

I do not have any answers but one thing I am speculating is that in your friend's mastectomy specimens, there may have been a breast cancer that went undetected and undiagnosed somewhere in the tissue.  If she had preliminary testing done and all the tests were negative for bc, there still could have been an occult breast cancer in her breast tissue.  Yet, the pathologist could have proceeded with the mastectomy tissue examination with those negative tests in mind.  So discovering a breast cancer involves a thorough, multi-disciplinary approach.  From physical exam, to multiple tests (mammos, ultrasounds, mri's, etc.) to biopsy and/or surgery.  The end of the process is with the pathology exam. 

I always feel going back to discuss the findings with the actual pathologist who examines my tissue brings me a fuller understanding.  An excellent and thorough pathologist is vital to the diagnostic process.  In one of my cases of bc, the pathologist found a tiny breast cancer that was missed during physical exam, ultrasound, mammography and mri w/contrast.  It was the hands of the pathologist examining my mastectomy specimen that felt the tiny tumor.  It was a small bc and I had no swollen nodes.

We virtually never see or speak with our pathologists, yet their role in our disease management is critical.

So, breast cancer can go undetected for a number of reasons.  I feel talking with the pathologist who did the analyses of my tissue is very important.



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Feb 11, 2008 04:31PM lvtwoqlt wrote:

I know that this case I know of is Ovarian and not breast but in 1978 my aunt had mets show up on her bone and brain. She went through all the tests that were available then and could not find the primary tumor. They did eventually find her tumor was seeding from her ovaries before it became a mass that showed up on any of the tests. So it is possible for mets without finding the primary site.


Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006 Surgery 2/11/2005 Lumpectomy: Left Surgery 9/9/2006 Lumpectomy: Right Hormonal Therapy 10/11/2006 Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodes Surgery 5/31/2007 Mastectomy: Left, Right

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