We need to stop scaring women about breast cancer and also realize that each woman is an individual and there is no one right answer. I've had BC twice. The treatment decisions I made in 1987 as a 32 year old are quite different than the decisions I made with a recurrence 23 years later and I was 58. My decisions both times were based on 1. amount of knowledge (lack of/ fully informed) 2. self-image 3. Quality of life vs length of life). Each time I had to fight the doctors for the treatment that I felt was best for me (lumpectomy vs radical mastectomy, chemo vs no chemo, hormone therapy vs none, single vs double mastectomy). What is important is that I have peace of mind over my decisions and no regrets. That's what I would hope for others.

And congratulations on being a long term breast cancer survivor. You have a unique perspective on the management of breast cancer since you've watched breast cancer treatment evolve over a 27 year period, and you've had your own experience to draw from. I hope that you are somehow involved in supporting others who are going through the process.

Thanks. I so support other BC patients and anyone with cancer. I have been a volunteer with ACS since 1988, I also volunteer with hospice and Gilda's club, a cancer support community. In my professional life I am a tobacco treatment specialist helping smokers quit and preventing out youth from starting.

I'm always puzzled when women opt for prophylactic mastectomies (in the absence of high-risk mutations) "because I want to do everything possible to not die of cancer!" Well, they are far more likely to die of lung cancer than of breast cancer. So, why not prophylactically resect a few lobes of their lungs? Why not have a prophylactic hemicolectomy too? Might as well also remove the uterus, the ovaries, a kidney, etc. since all of these organs are potentially subject to cancer. In theory, there is all manner of human tissue that could be removed to "prevent" future cancers. Why do these women fixate on removing only their breasts if they are consumed by a fear of getting cancer? It doesn't make sense to me. It is as though the unrelenting media/cultural focus on breast cancer has made women irrationally view their breasts as potential enemies completely out of proportion to their actual risk of getting breast cancer, even as they somewhat naively perceive no threat from the rest of their body. Many people desperately wish to feel safe, but there is no surgery that renders a person forever safe from cancer.

Thank you for bringing up one point I failed to make, which is that there are MANY things that each of us can do to mitigate our risk of cancer. For breast cancer, maintaining one's ideal body weight, regular exercise starting as a teenager, reduction of alcohol consumption, and avoidance of exogenous hormones after menopause have been proven to reduce the risk of breast cancer, just as avoidance of cigarettes dramatically reduced the risk of lung cancer and heart disease. We all need to be aware that surgery is not the only answer to avoidance of and treatment of cancer.

All great points! It is even WORSE in the Gynecology specialty. Hysterectomy is GROSSLY overused (76% do not meet ACOG criteria). And more than half of women lose healthy ovaries (castration) at the time of hysterectomy despite a woman's lifetime risk being less than 2% (absent the BRCA1 or BRCA2 gene mutation).

The uterus (and uterine ligaments) and ovaries have LIFELONG functions - anatomical, skeletal, hormonal, and sexual. Gynecologists who needlessly remove organs are violating their Hippocratic Oath.. Yet unnecessary removal of female organs is an epidemic.

Why are Hysterectomy and Oophorectomy not on ACOG's Choosing Wisely list? http://www.choosingwisely.o...

this article seems to be written from the bias of having reconstruction. for women opting out of reconstruction, going flat on both sides can be a much better choice than a single mastectomy - not the i-don't-wanna-die perspective but rather the simple how to get dressed in the morning and playing sports perspective and other perspectives. can you imagine having just one double d breast, for example? for those of us who opt out of reconstruction, the double mastectomy in many ways can be the better choice. i have symmetry. i can choose to wear two perfectly matched prosthetics or choose to go flat. i can simply run across the room without worrying whether my one breast will fly out my bra. in fact, i never wear bras. ever. and more.

I chose to have a bilateral mastectomy. i had very dense breasts, and they were somewhat large. their density was one risk factor. another issue was fibrocystic tissue, which meant i had lots of lumps and bumps. chasing after every single lump and bump - nonstop - was not going to contribute to a sense of well being. in the interest of feeling calm about my body, choosing the bilateral mastectomy was a wise choice. finally, i'm an athlete at a very healthy weight. i can just get up and jump across the room, jog to a meeting across campus, or dance enthusiastically with my child. honestly? i LOVE being flat. do i miss my breasts? sometimes… but i do not - not for one second - regret my decision to have the bilateral mastectomy.

You bring up a very valid point--for a large breasted woman to have a unilateral mastectomy, there can be health consequences such as back and shoulder pain and even, over a long time, spinal asymmetry. It's one of the reasons that Medicare covers reconstruction. But even reconstruction of the breast which has been removed is not simple in a large breasted woman--often the opposite breast needs to be reduced and/or lifted. Thanks for writing in.

Dr. Fielding: No one I know who chooses a PBM does so just for fun. In my family we are BRCA 1 & 2 negative. As the genetic counselor indicated, my family carries an as yet unidentified mutation. My mother had breast cancer as did her mother and aunt. Her grandmother died of "consumption", and had a rather large mass in her breast. Three cousins in my generation have done the battle, with one losing and one just starting. My OB/GYN suggested having a PBM 20 years ago. I waited. As I neared the age when the time bomb usually detonates, I spoke to my primary care, my surgeon, and my PS. Given the option of waiting until one or the other breast detonated, I chose a preemptive strike and had a SNS direct to implant with alloderm. I was out 10 days. Every last bit of tissue was looked by the pathologist, and it was all cancer free. Did I do the procedure too soon? NO. My cousin, who helped me get the family history, now has breast cancer. The ductal cell carcinoma in situ and minimal risk of contralateral breast cancer......she is the "lucky" 1%. To insinuate that those of us who choose this journey over a journey with cancer are over-reacting, being extreme, or any other negative adjective.....please refrain. None of us wake up one day and say, "think I will get my breast taken off." We all do it to live and to avoid breast cancer. I do not want radiation. I do not want chemo. I want to live. BTW: I must have really good surgeons, I do have sensation.

Stacy, please read what I wrote again. I was not talking about bilateral prophylactic mastectomy at all. I was talking about unilateral prophylactic mastectomy in an acquaintance with NO family history and no risk factors for being BRCA 1 or 2 positive, and who had a small non invasive breast cancer (and who had received NO counseling or second opinions) and the point I was trying to make is that for most women who have already been diagnosed with unilateral breast cancer, especially invasive breast cancer, they need to worry more about the breast cancer they already have than the one they might get.
You obviously made the correct decision for yourself. You did your homework, and you were VERY lucky to be referred to a genetic counselor who recognized that we do not know ALL of the mutations that cause breast cancer. You likely saved your own life. Please read Amy SHainman's comment below, and visit her blog.
Truly, I have spent a 32 year career in radiation oncology treating breast cancer. I care what women think and want, and I appreciate your comments, especially the important point that BRCA I and 2 are not the only breast cancer causing genes, and that when in doubt, especially with a big family history, see a trained genetics counselor.

Dear Dr. Fielding,
I realized even as I chose to have a prophylactic mastectomy of my unaffected breast at the time of my reconstructive surgery that it would be no guarantee that breast cancer would not ultimately be the cause of my death. However, since I had absolutely no known risk factors (other than being female 99% to the 1% of males diagnosed) for the primary cancer, anything which might prevent a second primary seemed prudent. I was 33 years old, with a breastfeeding infant, no family history of cancer at all, and totally clueless about the 2 1/2cm tumor near my chest wall. Had my obstetrician not done a thorough breast exam, no small feat with enormous milk filled breasts, I would not be here today. I've had a ruptured silicone implant and subsequent TRAM flap since (four years after the initial reconstruction) and have almost no skin sensation from mid chest to my hip to hip incision. These are small prices to pay indeed for the reassurance that I was doing something, anything to mitigate the probability of another primary cancer. I do have less muscle strength, both in my chest and upper arms (from the initial mastectomy primarily) and abdominally from the TRAM, but my plastic surgeon, knowing that I was in nursing school and needed what strength he could preserve, excised windows of muscle rather than ligating the rectus, so that I would have some remaining abdominal strength. Twenty five years post cancer, 18 years post TRAM, I do not regret my decision. Diagnostics have improved since my original diagnosis, but I am grateful to have raised my children. And remain relieved to have decreased my odds even ever so slightly of repeating what was without doubt the worst experience of my life.

Barbara, thank you for telling your story. Breast cancer diagnosed at age 33 is one of the most frightening things a young mother can go through. At the time you were diagnosed, we did not have a way of testing for the BRCA genes, which might have swayed you one way or the other--despite your lack of family history you may have had a mutation. As I said in my story, I do not try to second guess any woman's decision about her own management, but I do like to know that women are making decisions based on true facts and not on suppositions and superstitions. It sounds like you made the perfect decision for yourself and I am very glad it worked out for you. In my blog, I discuss a patient diagnosed at the same age as you, 22 years ago, who convinced me to take up horseback riding ("If Wishes Were Horses"). She had a 3 year old, and she chose unilateral lumpectomy and radiation. Her daughter has now graduated from college and grad school, and my patient has never had a recurrence in the treated breast, or the unaffected side. It was the right decision for her. I hope you were able to finish nursing school and have a great career.

Should have mentioned also that I was living in Bryan,TX at the time of my diagnosis and the nearest radiation facilities were 90 miles away in Houston, Austin, or Temple. The logistics of 30 days of daily radiation, chemotherapy, a 6 year old, a 4 year old and a 14 month old child were also part of the equation, making a lumpectomy not feasible. As was the recommendation by a family friend/breast cancer surgeon that a bilateral mastectomy and oophorectomy (which I did not have) were my best options for survival. My initial insurance company refused coverage for all but the single mastectomy. Reconstruction was considered "cosmetic" in 1989. We switched to a different HMO the following year. Yes, thanks, I have been an RN now for 17+ years!

Thank you Dr Fielding.
We rely on our doctors to tell us what is best for us.
Sometimes our fear of cancer takes over.
It is up to the surgeon to be honest and convey to the patient that "just taking everything out" provides piece of mind, has risks, and probably is not needed at this time.

I have learned not to ask the surgeon if I need the surgery, as it is difficult to find a conservative surgeon. Most surgeons want to cut.

Actually no surgeon should be providing peace of mind to anyone. The truth is that the tumor or mass we can see visually is only a symptom of a problem occurring at the microscopic level. Taking out the mass does not resolve that problem. It will recur if you do not deal with it.

Dr. Fielding,

Thank you for this article.

I am always appreciative of articles discussing insight into bilateral mastectomy.

Unfortunately, the Angelina media spots covering her "announcement" did not offer a lot of actual BRCA and/or genetics education. Most of the news stories and articles did put the idea of breast cancer risk in the forefront of women's minds as well as the idea of prophylactic mastectomy/mastectomy.

That is awareness…and that awareness brought with it the ability for women to more easily have breast cancer conversations with their doctors.

Anything that is a conversation starter--I view as a positive.

MY BLOG: http://thebrcaresponder.blo...

The issue that I see (and I go into more detail in my blog) is that doctors aren't referring patients to genetic counseling to correctly assess risk…so that they themselves (as well as their patients) may truly understand the breast cancer risk involved--which is a huge part in the decision making process of any mastectomy.

Did this 40 year old woman actually receive genetic counseling? Was she actually BRCA negative or just no family history? I know you said she had no family history of cancer but who was it that was deciphering her family medical history, asking questions, and deciphering her cancer risk? The counseling is a huge piece of the puzzle as the genetic counselor is an expert who knows how to correctly probe and analyze cancer risk. Primary care doctors are not trained nor do they have the time to accurately assess a patient’s genetically linked risk for cancer. It is not their area of expertise.

You say the patient was 40 years old (younger) …was she of Ashkenazi Jewish descent? Had the 40 year old woman had any previous biopsies or other medical conditions? It is unclear in this article if those issues were addressed. I would be curious.

Without the information to these questions--puzzle pieces are missing it is unclear. It may have very well been in the best interest of the patient to go the mastectomy route--it may not have been.

I completely agree with you that physicians need to remember the principle of “primum non nocere” — first, do no harm. But included in that "first do no harm" is for the doctor to make sure their patients are properly evaluated so that they can make the best possible recommendations to them; and so that the patients can make the best possible medical decisions for themselves. That includes referring to genetic counselors and encouraging 2nd opinions.

Amy Byer Shainman
BRCA /Hereditary Cancer Health Advocate
http://thebrcaresponder.blo...

@FloridaForce

Amy, thank you so much for your detailed response. With regards to the patient I wrote about, she was not tested for BRCA, she did not receive genetic counseling, she had not had previous breast biopsies and she is not of Ashkenazi Jewish descent. Even though she was not my patient (I am her client) I did ask these questions. I absolutely concur with the value of genetic counseling, and with that more physicians would utilize this important resource, available in most major medical centers. I recently had a patient who had to make the difficult decision regarding post mastectomy radiation for bilateral locally advanced poor prognosis breast cancers at age 38--she was found to have Li-Fraumeni syndrome, a likely under diagnosed genetic predisposer to early breast cancer but also to radiation induced cancers. She sought, and I actively encouraged her, to seek second and third opinions from oncologists and genetics counselors at both MD Anderson and the Dana Farber. All of these opinions were valuable and helped her come to a decision she could live with. Again, thanks for your input.

I am a uni- I had my left breast removed due to high grade dcis that was widespread. But, initially it was not obvious how widespread. My story is that the diagnostics don't always show everything. I went to one breast center where they found some suspicious stuff on the diagnostic mammo. They were going to do biopsy/lumpectomy but failed because it was so close to chest wall.
I went to next breast center, where they did new imaging and found more areas that needed to be removed. Had I gone with the first center, I may have never known about these areas for that first surgery. and would have gone in a year later and maybe had to have surgery again.
So at this new center, I had lumpectomy. Surgeon didn't get clean margins so needed another lumpectomy and it would be followed by radiation with no guarantee it would be the last surgery. So I said just take it off! What surgeons sometimes don't take into account is that there are side effects of anesthesia and just surgery in general. And I could have had three surgeries in a short period of time. I wanted the surgeries done, limit it to two! (I had asked surgeon right away to do mastectomy but he talked me into trying lumpectomy) I had issues with my eyes after surgery, phlebitis in my lower leg due to the cuffs that are supposed to prevent clotting that took a year to improve. (need to be better designed so they don't force blood back into the ankle area, maybe a boot design so the blood only gets pumped back toward heart) There is time lost with going back and forth dilly dallying with surgeries etc. By doing the mastectomy, which I had asked for before trying the lumpectomy, I would have been one and done..... I am not brca positive, but I have women in my family on my dad's side who were in their 70's 80's who had to have radical mastectomies. My guess is that their cancers were slow growing and did not kill them and that maybe mine would have been like theirs. Just a guess, I prefer removing mine now than going through it at that late age. I didn't have reconstruction, I was 43 at the time and didn't want even more time wasted and more surgeries and I am athlete, so taking muscle from any other area was out of the question for me.

Thank you for sharing your story. You bring up some very important points, the first of which is that imaging studies are not infallible, and I too have had patients in whom the lumpectomy for DCIS contained all of the microcalcifications (which led to the biopsy in the first place) however the margins were widely positive. Until we get to molecular imaging, this will always be a risk. I try to have a frank discussion AGAIN with a woman who has had a positive margin about the risks and benefits of proceeding to mastectomy versus re-excising the biopsy cavity. At that point, it becomes a very individual decision--some woman will immediately opt for mastectomy, and some remain very motivated to keep their breast. I try to remain neutral and to get a sense of where the patient is coming from. Second, you bring up the point that women can live happily ever after WITHOUT a reconstruction. As the daughter of a plastic surgeon, I am never against reconstruction, but I do like for women to know that oftentimes it's not as simple as it seems.

Thanks for the reply, true, maybe if I was more endowed I might have rallied to try another lumpectomy. It sounds like you listen to your patients and are open to their viewpoints, that is great! My breast are small and while the surgeon did a good job with the first lumpectomy, the breast shape was odd due to tissue removed and I knew it would be tiny and possibly more strangely shaped (my surgeon is a fantastic breast surgeon and takes aesthetics into account, he had a plan to make it look good as possible). He did a great job with my mastectomy scar- nice and tight and no extra skin at ends because of the way he gathered it where dog ears could have been left.
I also had bad infection afterwards (I had quite a bit of LE swelling in trunk and some lymph nodes removed which I am wondering if that contributed) and had I been in the middle of expansion.... or had immediate reconstruction, I bet I would have had to have the expanders or implants removed while the infection was treated.

You would think entirely different about this issue if you had breast cancer

Actually, I would not. I have a family history of breast cancer and have spent a 32 year career treating breast cancer, and once again, I will say that the cancer to be worried about is the one you already have, not the one you might get. More and more we know that it is the BIOLOGY of the cancer which causes it to metastasize and recur, not what is done to the breast, especially the breast which is not diseased to start out with.

Why is there an assumption that when one is in bad situation, that it is automatic that one will allow emotion to overrule rationality and reason? I used to hear, "Oh, you'll think differently about XYZ when you have kids." Well, now I do. And I still have the same opinions. They were based on what I thought was in the best interests of my child patients, and when parents ask me if I would do the same for my child in the same situation, of course. In some cases I have.

Christine, I have been diagnosed with breast cancer. So I think I have every right to say that I agree with Dr. Fielding's point of view. Too many women opt to have bilateral mastectomies with out fully considering their surgical options.

I was told that my only surgical option was a mastectomy after being diagnosed with multi-centric cancer. I decided to have a bilateral mastectomy because I didn't want to have reconstruction, but did want symetry. In addition, I had one biopsy in my colateral breast where the results were not consistent with the imaging. I decided a mastectomy was the ultimate biopsy. I didn't find it easy to make this decision; I would have been much happier if I had been able to have breast conserving surgery. I live with the side effects of mastecomy every day (nerve pain and tightness). I miss having breasts and the sexual sensations. At least I know that my decisions were made for medical reasons and I was fully informed about the side effects of mastecomy. I didn't make decisions based a knee jerk reaction of wanting 'to have them both off,' thinking that a mastectomy would improve my chances of survival.