x

Blog

(Reasonable) Fear Prompts “Extra” Mastectomy Decisions – An Opinion

A study was recently published evaluating the reasons why women diagnosed with breast cancer might undergo a contralateral prophylactic mastectomy.1 First, some definitions:

–       Mastectomy – removal of the entire breast

–       Prophylactic mastectomy – removal of a breast that does not have cancer

–       Contralateral prophylactic mastectomy (CPM) – removal of the breast that does NOT have cancer, in a patient undergoing mastectomy for cancer on the other side

The study, which was published in JAMA Surgery, concluded that “Many women considered CPM and a substantial number received it, although few had a clinically significant risk of contralateral breast cancer. Receipt of magnetic resonance imaging at diagnosis contributed to receipt of CPM. Worry about recurrence appeared to drive decisions for CPM although the procedure has not been shown to reduce recurrence risk. More research is needed about the underlying factors driving the use of CPM.”

Some background information:

1.  Over 25 years’ worth of data exists showing that long-term survival is equivalent whether a woman undergoes a lumpectomy or a mastectomy:  In other words, you will not live any longer if your breast is removed.

2.  There is no difference in the likelihood of metastatic disease (spread outside the breast – most commonly bones, liver, lung and brain) whether you have a lumpectomy or mastectomy.

3.  Lumpectomy followed by radiation therapy (this is also called breast conservation therapy, or BCT) generally has low rates of “in breast recurrence” or “in breast new primary” – low rates of the original cancer coming back in the same breast, or a new cancer developing in the same breast.  These rates are historically about 10-15%, although these rates are likely reduced with modern adjuvant antihormonal, radiation, and chemo- therapies.

4.  Even though much more breast tissue is removed (~99% of breast tissue cells) mastectomy is still associated with a 1-3% risk of cancer recurrence at the site of breast removal.  This is usually in the skin or muscle.

5.  CPM is associated with a 20-40% complication rate, especially unplanned additional surgery

6.  The average woman’s risk of developing a new cancer in the opposite breast is approximately 0.5-1% per year. If a cancer develops in the contralateral (other) breast, it is considered a “new primary” – a whole new breast cancer. Even though it might be the same type as the original cancer, it is generally not considered a recurrence. If the original cancer is estrogen / progesterone receptor positive, taking tamoxifen or aromatase inhibitors can reduce the risk of cancer returning after a lumpectomy, and can reduce the risk of a new cancer developing in the other breast. However, lumpectomy or mastectomy for the original cancer does not alter the rate of new breast cancer development.

7.  Women who carry a BRCA gene mutation have a 60-80+% lifetime risk of developing breast cancer in either breast, and a high risk of developing a new breast cancer, so bilateral mastectomy is often recommended. These patients are generally excluded from the discussions regarding whether or not CPM is a reasonable option due to their extremely high risk.

Over the past 20 years, research studies have supported a “less is more” approach to breast cancer surgery such as: BCT,  narrower margins of normal tissue removed around cancer, and less extensive lymph node removal. Before instituting these changes, studies were done to ensure that less aggressive surgery does not impact long-term survival rates. Despite these advances, there has recently been a steady increase in the rate of mastectomy, as well as CPM.  In article after article, physicians are scratching their heads.  The use of MRI, inadequate education, unrealistic expectations from reconstructive surgery, the “celebrity effect”, as well as fear and anxiety have been blamed.

The “new” study and our thoughts:

The recent study in JAMA Surgery focused on a small subset of women (8%) from a national database that elected CPM as part of treatment for unilateral breast cancer.  The authors reported that of 106 patients who received CPM, “80% indicated it was done to prevent breast cancer from developing in the other breast,” leaving only 21 patients (1.5%) from their sample of 1447 surveyed women that elect CPM for reasons other than the prevention of the development of a new contralateral breast cancer.  However, the author’s conclusions ignore this and direct the reader’s attention instead to patients’ concern for recurrence, stating, again, that “worry about recurrence appeared to drive decisions for CPM.”

The problem with this type of analysis is this:  when ‘patient fear’ is discussed, it frequently is implied by the reporting media that hysterical women are running to the operating room to be unnecessarily operated on by uneducated surgeons.

Judging the merits of a surgical procedure or treatment on the fact that few women “are likely to experience a survival benefit,” is not reflective of the complexity of the treatment decision-making process for women with a new diagnosis of breast cancer.  Faced with a multitude of decisions to make in a short time frame, it is not surprising that many such patients will report anxiety concerning recurrence.

The truth is simple:  surgical choice is a combination of factors. There is little doubt that some physicians do not spend the time needed to hear the concerns of their patients and respond to them appropriately. Conversely, some patients do not want to hear all of the facts, preferring simply to opt for what seems the “safest” approach, even though the science says otherwise.

What we see in our offices is a rational fear: Many women understand that the type of surgery does not determine their survival.  While of utmost importance, survival is not the only thing that is important to women being treated for breast cancer. Women worry about having to repeat the whole process in another year or so if something new shows up on a mammogram or if a lump is felt. Women question the value of annual mammography for surveillance when their initial tumor was not picked up by a mammogram. Women have seen their family members and friends develop complications from radiation therapy and from attempts to perform additional surgery after radiation therapy. While women understand that a mastectomy is no guarantee that they will remain cancer-free, to many it is such a significant decrease in the rate of recurrence or new primary cancer that they feel it is an acceptable trade off for the complication rates that have been reported in patients who undergo a CPM with reconstruction.  Physicians also agonize over the decision.  Properly educated patients are in the best position to make decisions regarding their own breast health care, but even the best education does not alleviate all anxieties, nor can it eliminate all risk.

Physicians and researchers talk about the increasing rate of CPM as a crisis. But the real crisis is that at this point, we simply do not have options for women that they are comfortable with. Unnecessary surgery is a concern for patients and physicians. However, until we can look a woman in the eye and give her more accurate information about her individual risk of recurrence or new primary disease, it is our opinion that the decision for CPM should be between a woman, her family, and her physicians.

References:

  1. Hawley ST, Jagsi R, Morrow M, et al.  “Social and Clinical Determinants of Contralateral Prophylactic Mastectomy”  JAMA Surg. 2014;  Online ahead of print.

Additional Reading:

JAMA Editorial: Contralateral Prophylactic Mastectomy – An Opportunity for Shared Decision Making

Medscape Article – Misconceptions and Fear Prompt Contralateral Mastectomy

The Patient Perspective: Blog Post by Catherine Guthrie

Michael S. Cowher, MD
Deanna J. Attai, MD

Comments

Lorie

Date: 3 Jun, 2014

Thank you for the great read. Interesting to say the least. 80% of woman are opting to have CPM! My question is, since my Breast Cancer was in both breasts, not sure if I had any options or not, other than removing them? I was never tested for the BCRA gene mutation. ( I had 3 different primary cancers before the diagnosis of BC) I've talked to many woman that had cancer in one breast, had surgery, radiation, a few had chemotherapy and several years later developed breast cancer in the other breast. I do not know if they had the BCRA mutation. Most, if not all wished they had the CPM surgery on diagnosis. Thanks, Lorie

DrAttai

Date: 3 Jun, 2014

Hi Lorie - thanks for your comment. If cancer was present in both breasts, it is not considered prophylactic - that implies that there is no cancer. The study did not show 80% are opting for CPM - it showed of those that had the procedure, "80% indicated it was done to prevent breast cancer from developing in the other breast,” - in other words, 80% thought that this was a reasonable way to reduce the risk of developing another cancer. The reality is we have many options, but what is most important is that a woman be allowed to choose what is right for her, after careful discussion of all of the risks and limitations.

Mike Cowher

Date: 3 Jun, 2014

Lorie, You misread - 8% of women are opting to have CPM, not 80%. Of those who did,80% said it was done to prevent breast cancer from developing in the other breast. While we don't know all the details of your story (and therefore cant say what your options were), you should talk to your physician about genetic risk assessment options in your community.

Ann Fonfa

Date: 3 Jun, 2014

I feel that too much of decision-making is done with just input from plastic surgeons, surgeons and medical staff. MORE time needs to be given to Advocates and Navigators, Cancer coaches and other survivors. Taking off both breasts as you point out, doesn't really reduce risks since most DO NOT RISK cancer in the second breast. Contrary to Lorie who says she has talked to "many women...who later developed breast cancer in the other breast", I have not. I've been doing Advocacy since 1993. It is my 'impression' that this is quite rare. It is possible (and I experienced this) to get recurrence on the chest wall after a mastectomy. Extra surgery can and too often does lead to more surgery. Reconstruction has a high second surgery issue. Many women have more than 2 to make it work. That's troubling. I have been breastless, breast-free, without breasts since a 1995 left mastectomy and a 1996 right mastectomy (found no cancer but cannot be glued back on:)

Ann Fonfa

Date: 3 Jun, 2014

I wonder what is going on with the sad-faced icon that appears by my name? I am a very happy and oh so lucky person.

DrAttai

Date: 3 Jun, 2014

Hi Ann - thanks for your comments. Regarding the icon - I don't understand wordpress to know why that happens, but I'm glad that doesn't represent how you feel!!

Amy Byer Shainman

Date: 3 Jun, 2014

Hi Ann, Ultimately, what is right for one person may not be right for another. These decisions are highly patient specific and as Dr. Attai and Dr. Cowher point out, surgical choice is a combination of factors. For example, my best friend was recently diagnosed with DCIS, grade 3 (she is BRCA negative). After undergoing two lumpectomies with unclear margins she is opting for a CPM. She has extremely dense breasts & breast symmetry is important to her as well. She made the decision to have CPM because she feels, "it's the decision that she feels is best for her, that she can personally live with, that she is at peace with."

Lorie

Date: 3 Jun, 2014

Thanks Mike..I need to remind myself to quit multi-tasking when reading! My history is long and complex with a complex cancer history, which included Hodgkin's Disease, Thyroid Cancer, Numerous Squamous/Basal Cell Carcinoma, Breast Cancer. I have discussed genetic risk assessments before with numerous medical providers, but most feel that my secondary cancer issues were from previous radiation exposure in my teens. Thanks for the clarification. Lorie

Amy Byer Shainman

Date: 3 Jun, 2014

and I have the angry icon! Not angry! LOL

Lorie

Date: 3 Jun, 2014

Sorry, I did misread! Thanks to you and Mike for clarifying! I multitask too much.... I am in full agreement that all women (and men!) should be well informed of our options available. In my situation, it was pretty much a conclusion from the radiologist, oncologist, surgeon and my plastic surgeon that it was the only option for me, due to the Invasive and Ductal carcinoma features in both breasts. My extensive cancer history probably factored in on this as well. Lorie

eve harris

Date: 3 Jun, 2014

It's a personal decision, but made in a context. After decades of disfiguring radical mastectomies, advocates for women's health fought hard to encourage acceptance of breast conserving surgery+radiation - a safe alternative for many. Symmetry were not part of the equation. With the advances in cosmetic surgery, women expect a high standard of cosmesis, and many obviously set their priorities differently than prior generations. Once the political/economic climate secured health insurance coverage for these procedures, the die were cast.

Catherine Guthrie

Date: 3 Jun, 2014

Well said! Thanks so much for your thoughtful and reasoned article.

DrAttai

Date: 3 Jun, 2014

Thank you, Catherine for posting your thoughts as well, both here and on your blog. It's important that all sides of the issue be discussed.

Cancer Curmudgeon

Date: 3 Jun, 2014

I was informed that mastectomy would not make a difference in prevention of recurrence, so I opted for a lumpectomy. However, since finishing my treatment, all of 6 month check ups have revolved around my breasts, mammograms, and so forth. I was even persuaded to give up birth control pills (I was E/P negative, HER2 positive) even though I used to have horrible, visit the ER level Dysmenorrhea. Not once has anyone on my medical teams discussed the places mets is likely to occur--as mentioned here, lung, bone, brain. I've only learned that via support group and social media. I suppose none of my oncologists have had a discussion about symptoms to watch out for because it is so likely cancer patients will then "imagine" that headache evidence of spreading to brain, or whatever. But guess what? I already do imagine every little thing that is wrong means cancer has spread to some other part of me. It would be helpful to have some concrete info, rather than letting my mind run away with me--because I excel at that. Certainly something I plan to discuss at my next oncology visit.

Michelle Sweeney

Date: 3 Jun, 2014

This was a wonderful and extremely informative article. I agree that it is a difficult yet very personal choice, and although my situation (BRCA 1 +) excludes me from this JAMA study, my decision to have PBM's was still one of the hardest decisions I ever made, but was definitely the best choice for me-- at least after my prophylactic TAHBSO. Over my 30 year career as a Radiation Therapist (I am not a MD) I have spoken to many breast cancer patients and most who are not BRCA+; a significant amount wish they could have the contra-lateral breast removed. Others just go on to believe that lightening wont strike twice, and statistically they may be correct, but the emotion of worry is a unique entity and sometimes haunts us no matter what the statistics may be. It all comes down to personal choice and finding the best breast surgeon you can-- a great breast surgeon can drastically reduce the complication rate! Plus a great breast surgeon usually only works with an equally great plastic surgeon. Cancer is a community event that includes many factors, and this article is very valuable to discuss openly with both your MD and family. The only concern I have is that most women are not reading this unless they have already been "there and back".... for me it was the best decision I ever made.

Tracy

Date: 3 Jun, 2014

The one thing we know for sure about breast cancer is that its complicated and it forces women and their medical teams to make whole series of complex, often time bounded decisions at a time that is incredibly stressful not only due to the cancer but the implications for work, income, relationships and any children they have or might hope to have in future. I think its important with any research to ensure as full a picture as possible is given. There are plenty of very high risk women, like myself, who are not BRCA positive but have breast cancer and breast/ovarian cancer deaths throughout multiple previous generations in the family (at least 5 generations in my case, all of whom died of BC or BC/OC combinations before age 50.) I personally wish this history and the heightened risk it highlights had been taken much more seriously. My request for BPM at 30 might then have been acted on and there's good chance I would not have gone on to develop aggressive HER2+ breast cancer aged 42. I think we need to do more to highlight that there are risks beyond BRCA so that women with significant family histories DO have the option to make an informed, potentially life saving choice to undergo BPM and aren't frowned upon for being overly cautious or overreacting to their risk.

GLF

Date: 3 Jun, 2014

My doctors told me all of the things you mentioned. They would not take both breasts at once but did finally agree to remove the other. I had stage 3 ILC with classic presentation; did not show up on mammo or ultrasound. They biopsied it because everyone could feel it. So, despite the facts, I didn't trust scans and wanted the other one gone. I'm interested to know what the "other reasons" were. I was not a good candidate for reconstruction due to Lupus, so I didn't have it done. Now, retrospectively, I'm glad both are gone so I don't have to wear one fake boob in one bra cup. In fact, I haven't used them since I brought them home. They sit in a box in my drawer. At first I found myself thinking, "Well, maybe I'll wear them on special occasions"; quickly countered by a second thought, "What kind of special occasion would call for fake boobs?" So, there they sit. And I am fine with it.

eve harris

Date: 3 Jun, 2014

LOL! And thanks for reminding me that not *everybody* has reconstruction. I worry that we don't fully appreciate surgical risk. It's human nature, I guess.

Ellen

Date: 3 Jun, 2014

I had my healthy breast removed for cosmetic reasons! Why is this less valid than a decision to have reconstruction? I would have hated being assymetrical or having a fake breast, either a falsie or through plastic surgery. So I'm now breast-free, bra-free, and look quite normal in my clothes albeit flat-chested. I'm not happy about it, obviously (who's happy about having had cancer?), but it seemed the best option in a difficult situation after lumpectomy failed. I've never regretted it, five years on. I understood that there was little medical justification to having it done, but the anxiety that more mammograms and increased surveillance would have caused me was also a major consideration. I see this as an issue: either there's little additional risk to the healthy breast or it needs increased attention. You can't have it both ways, but my docs seemed to want to.

Respond