One in Six Women Choose Double Mastectomy

It's now three months since I posted here. Circumstances have changed a little: my tumor-cavity seroma has resorbed to the extent that my lumpectomy breast—while round, firmer, perky, and still very large—is a cup or two smaller than my “healthy," droopy & pendulous left one. But only while I'm naked. Dressed, even in just my undies, you can't tell a difference. I might be more inclined to have the left one reduced to match, but its composition (100% fat, no fibrosis) is so different that unless I happen to form a seroma in it (and a seroma of the same size and in the same location) I will never be symmetrical. I would be fully symmetrical only if I were to get a BMX…but w/o reconstruction. The tissues on one side, having been radiated, are different from the other. It's just a fact.

But I don't care about asymmetry unless it were to affect my posture, cause physical pain or be obvious while clothed. My left hip is higher than my right. One facial profile is more attractive than the other. And what I look like naked? I have a postmenopausal jelly-belly (which actually began after I had to have a C-section at 33). And it's full of scratches and scars from my cat, who likes to knead but would rip my face off were I to trim his claws. I have no qualms about telling people “no, I'm not abused and I'm not a cutter—and the thought of either giving up my cat or declawing him is abhorrent."

19 months after lumpectomy, I have had three mammograms. When I first entered our “sorority" (with a a few honorary frat brothers), I wondered how I would deal with the anxiety I was going through if I had to go through it every six months. But I was surprised to find that as each 6 months rolled around, I was getting calmer and calmer. Much of that is because I already know what I'd be up against—treatment & followup--in the case of a recurrence or new primary; because I've been through much of it and am still here on my feet and living a life much the same as before bc. Had I chosen BMX, my recovery would have been much longer (even longer than that had I also chosen reconstruction); and I would not have been able to experience the pleasures of life which I have had (nor would have those happy memories) in the 16 months since completing radiation.

And that's assuming no untoward complications. (The exploding SNB seroma? Not in my breast, but my armpit—and had I chosen mastectomy I'd still have had that SNB). A BMX for me—flat or reconstructed--might have meant bilateral LE—arms and trunk.

“Peace of mind?" Not really. I am old enough, and have seen enough, to know that true “peace of mind" about breast cancer (or any other disease) is an illusion. Look at all the people who had BMX, reconstruction, rads nonetheless, chemo, endocrine therapy, drastic dietary changes, etc., and still ended up with mets. From what I understand, that in the case of ER+ bc, those “seeds" may have been planted elsewhere in the body even before that first diagnosis.

One person here said that with other cancers, if they appear in an organ not necessary for survival (e.g., uterus, part of the colon, one kidney, one lung, ovaries, one eye, etc.) that entire organ is removed for safety. Heck, even a gallstone warrants the removal of a gallbladder, and infection of the appendix or tonsils & adenoids, appendectomy or T&A. They reason that since the breast's function is nourishment of an infant, it is a nonessential organ when it comes to the life of the rest of the body and should therefore be removed, no matter how tiny or indolent the tumor, no matter how old the patient; and that those of us who want to be as noninvasive as possible are either wusses who can't handle major surgery, vain fools, conflate our femininity with our exterior anatomy or any or all of the above. I find that every bit as offensive and condescending as the article which inspired this post.

Let me tell you, all major (and sometimes minor) surgery carries life-threatening risks. As a cardiologist's wife, I know what can happen—complications can disrupt one's life forever or even kill. My husband nearly died after a colonoscopy went very wrong and perforated his bowel. He has seen bypass and sometimes even angioplasty patients die on the table (not his, he isn't a surgeon or interventionalist). He has seen patients unable to survive long operations under general anesthesia. And he has seen post-op infections occur despite the most rigorous precautions.

It's not about vanity—Lord knows if it were, I'd have been rigorous about diet & exercise all my life, gotten my teeth capped & further straightened, body-sculpted, and my face lifted before it needed it (and now it's too late for that). I don't view prophylactic mastectomy as “mutilation" if it is necessary. But I think too many are operating under the illusion that removing a healthy organ because it might grow a cancer later on is foolproof-edly protective. It isn't. It may lower the odds but it will not eliminate them.

Let me give you an analogy: malignant melanoma—more aggressive than the vast majority of breast cancers. Let's say it appears on your forearm. If it is in situ only, it is removed with a reliable margin only. If it is Stage I or II, it is removed with a much wider excision. But you still don't amputate the arm. Another is colon cancer. If one small polyp in the lower bowel is found to be malignant, several inches of colon around it is taken and the rest sewn back together. (Same with diverticulosis or as in my husband's case, a perforation so located). They don't remove the entire organ and establish an ostomy unless there is no other way to prevent spread of tumor or infection.

Same with my bc—small tumor, fortuitously located on the outside of a very large breast. For me (and I stress “for me"), even a UMX, much less BMX, would have been like bringing in a Sherman tank to crush a cockroach. (And I would have been stuck having to park that Sherman tank forever). I have allergies to the three major antibiotic groups that are most effective in fighting a post-op or hospital-acquired infection. (It made treating my post-C-section endometrial infection a challenge). I know I have always been a seroma-former (it happened with my T & A and appendectomy as a kid). I have asthma (which makes me an anesthesia risk). I might lose my ability to sing or even speak should an airway placement injure my vocal folds. And I have a disastrous family cardiovascular-pulmonary history. For me, my mantra has to be Hippocrates' primum non nocere (first, do no harm). To me, that means cut only when necessary, remove only what needs removal, and keep me “under" for as short a time as possible.

I am not telling anyone here their BMX choice was overkill. Had I a more aggressive cancer, multifocal, larger, or smaller breasts, family history, mutations—and fewer surgical risks—I might have taken the same route. But it all comes down to: what degree of uncertainty (and there will ALWAYS be some) are you willing to live with? What permanent and irrevocable consequences are you willing to accept? How well does your body handle trauma (and major surgery is unquestionably physical trauma)?

As they say in the fine print in car ads, your mileage may vary.

yes I know funny numbers - the boys call us a cluster - it's enough for our lot for a while - hope the trend stops!!!😊

i jinmo! Starting to get a bit antsy - working very hard on getting final exams ready and assignments graded, on top of trying to make sure the house is "guest-worthy!" I have another appt with my BS in a week to go over some questions that I didn't have or forgot to ask during my last appt (brain went to oatmeal as soon as I got the diagnosis and took a good breath for the first time in about 24 hours). And I have to remember to call to get my admitting time later this week.

Trying to get my solo recovery plans in order. I have a great friend coming down for the first week post-op so I'm not completely on my own right off the hop. But I do live in "Very Small Town" BC, so will have to do some driving reasonably shortly after - like maybe the day I run her out to the airport!

I find myself standing in the middle of my kitchen/dining room and slowly turning around and around - not making much headway here at home. The guest room is the laundry over-flow, on top of being the catch-all for the spring/sumer jackets & the motorcycle gear from last summer (don't expect I'll get a lot of riding in this summer - glad I didn't renew the insurance yet). But, I've always done better at the last minute - planning well ahead has never been my strong suit - more of a "fly by the seat of my pants" kinda gal. First - move a winter's worth of recycling blue bags out of the garage and get them down to the depot, then move the broken-down cardboard from the store room into the garage, then I will have somewhere to put the motorcycle gear... Simple!

Still looking for that round tuit tho'....

Got that right jinmo! And yeah - she's not gonna be that worried about a guest room, and she knows me far too well to expect anything close to perfection - Martha Stewart I'm not! Might even park her in my bed anyway since I will in all likelihood be in my little recliner for at least a few days. Someone may as well take advantage of the kingsized bed besides the dogs and the cat! And maybe I'll take the guest bed since it's a little lower and might be easier getting in and out when I get to that point.

I should have all of the work stuff done before the week is out (final exams are pretty much ready for someone else to invigilate and grade - gotta be an easier way to get out of marking exams tho'!). I'll be able to concentrate on the house this weekend and most of next week - getting meals in the freezer and relocating everything to the counter.

Monica - of course it's an individual decision and you didn't say how old you are. I ask about your age, because of course you loose the sensation in your breasts so that's a consideration.

You didn't list what chemo you had. Was the SNB clean? Did they test both sides? My choice with dense breasts & HER2+ would be a BMX - which I had, and then more chemo after surgery then & rads. Do they plan to do more chemo? It looks like you've had only a mammogram and an ultrasound. You can push for an MRI to get another picture of the tumor (s) - and I would be sure they do both breasts. Does you BS agree with your MO? Do you feel like you'd like a second opinion? Some hard choices. Do keep us updated.

Sorry, I'm fairly new to the boards, but I am 50, have had a MRI and pet scan. The tumor did show up on the MRI and none on the other side, the petscan showed one positive lymph node. I had Carbo, taxotere, herceptin and perjeta. From the LND, it was positive in two nodes, and only one side was checked, I have asked for more genetic testing, but that too, the onc doesn't think its necessary. I have no previous family history and have a 26 yr old daughter. the BS did not even call the MO about this, last I knew.

RacerMom - if you decide on BMX, you should get a plastic surgeon involved right away. Also find out if either of these docs are taking your case to a "tumor board", where a group of docs with various specialties review your case and weigh in with their professional opinions.

Yes, thanks for adding that ksusan.

So I spoke with the MO this morning and the path report says I have IDC and DCIS, so he and the BS recommend the mastectomy. I have decided to do the reconstruction and have an appointment tomorrow. Thank you all for your suggestions and information, greatly appreciate it all... MO says he's going to run tests for HER2 again on the surgical specimen. Thank you

I ultimately went UMX. I made the surgeon PROVE to me that I should keep the left breast. I had a stereotactic core breast biopsy (like a crazy alien abduction). I'm VERY happy with the extra effort of the surgeon and that I read up on the statistics and stepped away from the emotion.

@NotVeryBrav

I don't have an answer for you, but wanted to post that I have a similar outcome except my original plan has always been a double mastectomy. I was diagnosed with IDC and DCIS in the left breast and am also HER2+. I also had 2 enlarged lymph nodes on the left and at least 1 node is positive for cancer (they didn't biopsy the 2nd node). When I went for my MRI it was discovered that I had two additional suspicious areas in the right breast (these did not show up on my mammogram). I had an MRI guided biopsy on both suspicious areas within the right breast, clips were placed and the biopsies came back as fibrocystic changes, BUT I was told to come back in 6 months to check the right breast once again.

I recently had my pre-op MRI after having gone through neoadjuvant chemo (TCHP) and there is no visible mass in the left breast and both lymph nodes are now regular/normal sized. On my pathology report the doctor noted that there two artifacts shown in the right breast which are the two clips that were placed during my MRI biopsy on the right side. However, there is no mention of the 2 suspicious areas that were present before chemo.

My situation is different than yours because as I stated I had already made up my mind on a BMX and haven't wavered from that.

I'm not scheduled to with my BS again until surgery on May 4th, but I do plan on asking her about my right breast and asking wether or not that tissue will be looked at again.

I know this doesn't really address your post, but wanted to point out that I also have questions about what is or could be possibly going on in the right breast.

~Dee

I read about this study on CNN and was mystified as to the researchers' mystification over why women choose BMX. Here's my perspective: standard of care dictated I have a unilateral mastectomy. I could choose lumpectomy with radiation on the less effected side, or BMX. Saving my less effected breast would then commit me to frequent 3D mammograms with any suspicious lesion needing immediate biopsy. I could fight to save what was left of that breast, but to what end? I've already nursed my babies; functionality wasn't an issue. It seemed silly to commit myself to a lifetime of vigilance and painful procedures and disruption to my schedule to salvage what's left of my other breast.

Incidentally, I'm a health care worker, and almost all my female MD colleagues said they would choose BMX, while about half of the males thought they might try to salvage the one breast. I thought that was interesting

Chiming in here.

I had a normal screening mammogram in June 2011. Three months later I found the inflammatory breast cancer features that led me to my gyno, then biopsy, then lumpectomy, then chemo, UMX, rads. A year later I had delayed DIEP recon/DIEP immediate on "healthy" side.

THREE MONTHS after a normal mammogram I had Stage III BC with six positive nodes. If I had not noticed the strange skin texture and redness in a little area of my breast, it wouldn't have been long before I was Stage IV. This monster sneaked up on me fast and turned my life upside down for a long time. I had no interest in keeping the "healthy" breast and peering at it every morning, squashing it for a mammo every few months, and hoping for the best. Yes, I know "some" breast tissue still lives on my chest, but it's a helluva lot less than it used to be.

Anyone--researchers, doctors, other women--whose opinion is that I should have kept the other breast is welcome to take a long walk off a short pier. My body. My choice. And a BMX is not an unreasonable or overly emotional choice.

Not very brave...get another surgeon or at least another opinion. I think there are less women regretting BMX than lumpectomy. You not only have lots of breast tissue left to grow new cancers but much more estrogen in your body (breast hold much of our estrogen) with a lumpectomy. With your diagnosis of HER2, you certainly want to give yourself the best chance

i feel like many articles that talk about women choosing mastectomy over lumpectomy write as though these are fear driven decisions--when in fact every woman educates herself as much as she can and makes the best decision that she can for herself taking into account all the pros and cons and how they fit into her life. It is not an easy decision and it requires much thought to go through a major procedure

If someone chooses less surgery , then thats her choice . If someone chooses more surgery then thats her choice --- choices that are made after understanding all the pros and cons are the best choice .

I feel like one thing that doesnt get talked about is that we arent just comparing lumpectomy to mastectomy --we are comparing lumpectomy plus radiation to mastectomy. So if mastectomy can help one avoid radiation, that is also a part of the decision making. My surgeon favors lumpectomy plus radiation for me .

However, i had a left sided tumor on the upper inner part of my left breast --and radiation to this means some radiation to the heart. It doesnt matter how good modern radiation techniques are, i think that there will always be some internal scatter to the heart. My breast is not essential to my life, nor is it essential to my femininity . My heart on the other hand is essential to life and i dont want to do anything that risks my heart, no matter how small supposedly the risk. The cardio-oncology literature all talks about cardiac disease as a potential leading issue in BC survivors in the reading that i have done. I almost feel like its a defeat of feminism for me to be advised to take on radiation risks for saving the breast, which doesnt serve my life any purpose other than adding a curve under clothing-yes we lose feeling, but comparing that to the various issues re life--life wins hands down. I understand that its major surgery, i am more worried about the drains and pain etc , but i wish that less people woudl view this as a fear based decision . Its a medical rational decision. Weighing the cons carefully isnt being fear based.

Another factor for me ---my breasts are very dense and nothing was seen on my mammogram . The fact that i felt the lump is what has saved my life. So our radiologic screening methods are far from being the best for each and every one of us . It is certainly reasonable to take into account how well screening methods have served us and factor that into decision making . According to some current US screening guidelines, i wasnt old enough to even start screening ---but i had an aggressive her 2 positive tumor .

For now i am choosing unilateral mastectomy--my choice going against the lumpectomy that my surgeon would prefer, although she supports me 100% and she is just a great surgeon and good person --i am not up to having both arms out of commission at the same time . Will finish my year of herceptin and then think about the other side.

I apologize if i offend anyone with how i have phrased things above --it takes time to get ones head around everything when it comes to decision making especially when i am the driver of the decision, not the doctors . It does take a lot fo courage to be the driver of your decision and not just go with what the doctors recommend . Sometimes i do second guess myself since i am going against the doctors advise, but the more i think about left sided tumors and the heart, the more i am clear abotu the surgical choice I have thought a lot abotu why the surgeons favor breast conservation so much --i feel there shoudl be more support for folks choosing more surgery .

Thank you ladies for listening