BMX vs. lumpectomy--please help me understand

Here is a post by one of our resident experts, Beesie. I have copied it for you in case she misses your post:

"Some time ago I put together a list of considerations for  someone who was making the surgical choice between a lumpectomy,  mastectomy and bilateral mastectomy.  I've posted this many times now  and have continued to refine it and add to it, thanks to great input  from many others.  Some women have gone through the list and decided to  have a lumpectomy, others have chosen a single mastectomy and others  have opted for a bilateral mastectomy. So the purpose is simply to help  women figure out what's right for them - both in the short term but more importantly, over the long term. 

Before getting to that list, here is some research that  compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX because they believe that it's a more aggressive approach.  If that's a big part of someone's rationale for having an MX or BMX, it's important to look at the research to see if it's really true. What the research  has consistently shown is that long-term survival is the same regardless of the type of surgery one has. This is largely because it's not the  breast cancer in the breast that affects survival, but it's the breast  cancer that's left the breast that is the concern. The risk is that some BC might have moved beyond the breast prior to surgery. So the type of  surgery one has, whether it's a lumpectomy or a MX or a BMX, doesn't  affect survival rates.  Here are a few studies that compare the  different surgical approaches:

Lumpectomy May Have Better Survival Than Mastectomy

Twenty-Year Follow-up of a Randomized Trial Comparing Total Mastectomy, Lumpectomy, and Lumpectomy plus Irradiation for the Treatment of Invasive Breast  Cancer

Twenty-Year Follow-up of a Randomized Study Comparing Breast-Conserving Surgery with Radical Mastectomy for Early Breast Cancer

Now, on to my list of the considerations:

• Do you want to avoid radiation? If your  cancer isn't near the chest wall and if your nodes are clear, then it  may be possible to avoid radiation if you have a mastectomy. This is a  big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some cancer cells are found near the chest wall, or if the area of  invasive cancer is very large and/or if it turns out that you are node  positive (particularly several nodes).
• Do you want to avoid hormone therapy (Tamoxifen or an AI) or Herceptin or chemo? It is very important to understand that if it's believed necessary or  beneficial for you to have chemo or take hormone therapy, it won't make  any difference if you have a lumpectomy or a mastectomy or a bilateral  mastectomy.  (Note that the exception is women with DCIS or  possibly very early Stage I invasive cancer, who may be able to avoid  Tamoxifen by having a mastectomy or a BMX.)
• Does the length of the surgery and the length of the recovery period matter to you? For most women, a lumpectomy is a relatively easy surgery and recovery.  After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer.
• How will you deal with the side effects from Rads? For most patients the side effects of rads are not as difficult as they expected, but most women do experience some side effects. You should be prepared for some temporary discomfort, fatigue and skin irritation,  particularly towards the end of your rads cycle. Most side effects go  away a few weeks after treatment ends but if you have other health  problems, particularly heart or lung problems, you may be at risk for  more serious side effects. This can be an important consideration and  should be discussed with your doctor.
• Do you plan to have reconstruction if you have a MX or BMX? If so, be aware that reconstruction, even "immediate" reconstruction, is  usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the  reconstruction process but other women find the process to be very  difficult - there is no way to know until you are going through it.
• If you have a MX or BMX, how will you deal with possible complications with reconstruction? Some lucky women breeze through reconstruction but unfortunately, many have  complications. These may be short-term and/or fixable or they may be  long-term and difficult to fix. Common problems include ripples and  indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both (if you have a BMX).  If you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret  the decision to remove your breasts or your healthy breast? Are you  prepared for the possibility of revision surgery?
• How you do feel about your body image and how will this be affected by a mastectomy or BMX? A reconstructed breast is not the same as a real breast. Some women love  their reconstructed breasts while some women hate them.  Most probably  fall in-between. Reconstructed breasts usually looks fine in clothing  but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction.  If you do  choose to have a MX or BMX, one option that will help you get a more  natural appearance is a nipple sparing mastectomy (NSM). Not all breast  surgeons are trained to do NSMs so your surgeon might not present this  option to you. Ask your surgeon about it if you are interested and if  he/she doesn't do nipple sparing mastectomies, it may be worth the  effort to find a surgeon who does do NSMs in order to see if this option is available for you (your area of cancer can't be right up near the  nipple).
• If you have a MX or BMX, how do you feel about losing the natural feeling in your breast(s) and your nipple(s)? Are your nipples important to you sexually? A MX or BMX will change your  body for the rest of your life and you have to be prepared for that.  Keep in mind as well that even if you have a nipple sparing mastectomy,  except in rare cases (and except with a new untested reconstruction  procedure) the most feeling that can be retained in your nipples is  about 20% - the nerves that affect 80% of nipple sensation are by  necessity cut during the surgery and cannot be reconnected. Any  breast/nipple feeling you regain will be surface feeling only (or  phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will  feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.
• If you have a MX or BMX, how will you deal emotionally with the loss of your breast(s)? Some women are glad that their breast(s) is gone because it was the source  of the cancer, but others become angry that cancer forced them to lose  their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this  diagnosis, and the fear, is well behind you.
• If you have a lumpectomy, how will you deal emotionally with your 6 month or annual mammos and/or MRIs? For the first year or two after diagnosis, most women get very stressed  when they have to go for their screenings. The good news is that usually this fear fades over time. However some women choose to have a BMX in  order to avoid the anxiety of these checks. 
• Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breast(s) is gone? Or  will the loss of your breast(s) be a constant reminder that you had  breast cancer?
• Appearance issues aside, before making this decision you should find out what your doctors estimate your recurrence risk will be if you have a lumpectomy and radiation. Is this risk  level one that you can live with or one that scares you? Will you live  in constant fear or will you be comfortable that you've reduced your  risk sufficiently and not worry except when you have your 6 month or  annual screenings? If you'll always worry, then having a mastectomy  might be a better option; many women get peace of mind by having a  mastectomy.  But keep in mind that over time the fear will fade, and  that a MX or BMX does not mean that you no longer need checks - although the risk is low, you can still be diagnosed with BC or a recurrence  even after a MX or BMX. Be aware too that while a mastectomy may  significantly reduce your local (in the breast area) recurrence risk, it has no impact whatsoever on your risk of distant recurrence (i.e.  mets).
• Do you know your risk to get BC in your other (the non-cancer) breast? Is this a risk level that scares you? Or is this a risk level that you can live with? Keep in mind that breast cancer very rarely recurs in the  contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again with a new primary breast cancer  (i.e. a cancer unrelated to the original diagnosis) and this may be compounded if you have other risk factors. Find out your risk level  from your oncologist. When you talk to your oncologist, determine if  BRCA genetic testing might be appropriate for you based on your family  history of cancer and/or your age and/or your ethnicity (those of  Ashkenazi Jewish descent are at higher risk). Those who are BRCA  positive are very high risk to get BC and for many women, a positive  BRCA test result is a compelling reason to have a bilateral mastectomy.  On the other hand, for many women a negative BRCA test result helps with the decision to have a lumpectomy or single mastectomy rather than a  bilateral. Talk to your oncologist. Don't assume that you know what your risk is; you may be surprised to find that it's much higher than you  think, or much lower than you think (my risk was much less than I would  ever have thought).
• How will you feel if you have a lumpectomy or UMX and at some point in the future (maybe in 2 years or maybe in 30 years) you  get BC again, either a recurrence in the same breast or a new BC in  either breast? Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you be grateful for the extra time that you had with your breasts, knowing that you made the best  decision at the time with the information that you had?
• How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast? Will you question (either immediately or years in the future) why you made  the decision to have the bilateral? Or will you be satisfied that you  made the best decision with the information you had?"

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I like Beesie's list because it is so impartial, but now I will tell you my personal opinion; if you find that you really are not sure, then I'd suggest you go with the lumpectomy. With that you can change your mind later; but once your breasts are gone...they are gone forever. I chose a lumpectomy because it is a much less invasive surgery, has a much quicker recovery etc. Also, I like having breasts, but knew, after talking to people who had done reconstruction and also by reading some of the reconstruction threads here, that I would most likely not be willing to go through all the time/expense/pain/hassle/uncertain results etc. of reconstruction....so I'm glad having a lumpectomy was an option for me. Also, unless there is something genetic involved (such as BRCA), even though your chances of cancer in the other breast are somewhat higher; they really are not that much higher, and it seemed to me the risks of complications of a major surgery for something that might (but probably won't) happen didn't seem worth it to me. (A second cousin of mine did that and has had horrible problems on the side where the 'good' breast was removed ever since....so that tilted my opinion totally away from that option). When I was first diagnosed, I was talking to a friend of mine who is a surgical nurse and a 35 year BC survivor. Back when she had it, the only choice was a mastectomy, and years later, when that became an option, she had reconstruction. So, she has seen the whole situation from both sides of the operating table. Her advice to me was, "If they give you the option of  lumpectomy, TAKE IT!"

I think Ruthbru is right. Unless you are Braca positive or have other risk factors that make you at a higher, HIGHER risk, being conservative is the way to go. For example in my case, I had a long history ( since I was twenty six ) of benign breast disease. I don't think I ever had a normal mammogram. In addition, I have a sister with ovarian and parents who had cancers that share the Braca genes. I was neg but they suspect there is a sub gene. Given those three factors, and the fact that my lesion was found by me AND was superficial AND yet they still couldn't see it on any screening( mammogram or ultrasound) I immediately opted for Bil mastectomy. I knew that it was prob only a matter of time before something showed up in the other breast  and if it did, they may not see it and it could be at a later stage. In fact the pathology of the other breast was worse than the breast with the cancer. I had three or four different kinds of benign breast condition in that tissue. If I had come to the table with no history or maybe even only one of those risk factors, I def would have gone consevative. The only other consideration you have to think about would be that radiation does change the tissue a bit and does make reconstruction a bit mor challenging sometimes but far from a reason to go radical when it's not neccessary. Hope this helps.

This is a really good article today in the New York Times opinions section regarding over treatment...

http://www.nytimes.com/2014/07/27/opinion/sunday/the-wrong-approach-to-breast-cancer.html?_r=0

I'll just weigh in here as someone who went the double mx route 3 yrs ago in the face of no medical recommendation at the time to do so. Iwannacookie you understand the issues.  Surgeons see it as a great improvement when they can do less with the same result.  Hence, the big push for lumpectomy over mastectomy when the case indicates lumpectomy can solve the problem.

For me, my breast cancer was not visible on a mammogram and was not palpable. Might well have been stage 3 before it was discovered if I followed the conventional medical wisdom at the time. I felt lucky (was lucky!)  it was discovered when it was (stage "1"), so I did not trust that conventional imaging, and the conventional wisdom that went with it for that matter, would guide me well in the future.  I did not want to deal with the angst and expense of multiple screening modalities I would require annually.  Seemed to me much more efficient to remove them, as I had no particular attachment to them and did not need them. I was premenopausal and we are talking years more of screening I did not want to deal with.  I also liked the idea that I'd be done with no risk of more surgery due to dirty margins and eliminating whatever my lifetime risk of contra lateral bc was to as close to zero percent as possible.

Everyone is different with different situations.  People often recommend what they chose themselves. Read my opinion supporting bmx choice,  and all other, through that prism. 

Ps - A huge plus with bmx is you forgo all radiation.  That appealed to me too. People on this board freak out at chemo-radiation is toxic too. 

A mastectomy is not a guarantee that you will not need radiation, so you shouldn't base your decision solely on wanting to avoid radiation.

Sorry, posting at the same time as Ruthbru! Posting same answer!

As Ruthbru and Ariom have stated, a mx is not a guarantee of avoiding radiation.  I had a mx and had a small positive margin (not chest wall though).  It is hard to understand how you can have a positive margin when there is so little breast left, but it does happen.  Mine was positive in the tissue above the mx.  Very tiny spot and bs did not feel that any further treatment was required.  I could just not leave it at that and decided to have radiation.  I agonized with that decision and was very fearful of rads.  My drs were not recommending radiation, but supported my decision.  I did breeze through rads and am very happy with my decision now.  My bs did warn me of this possibility though even prior to my surgery as my dcis was large and my breast very small.  The mx was a given in my situation.  Good luck with your decision.  

iwannacookie,

I chose a lumpectomy with SNB and am comfortable with my choice.  I had 35 rads and am looking forward to my 3 yr cancerversary in September.  The surgery was uneventful and the rads were not bad at all.  My thinking was that I would "start small" and if later I had to "go big", I could do that but once they are gone, there is no looking back.  I didn't want to have to live with "I wish I wouldn't have" so lumpectomy was the way for me to go.

I pray that your BRCA comes back neg and that you make the decision that is perfect for you.  God bless you.

LaDonna

and yes, latest study cited by Orenstein in nyt today says they use some incomprehensible mathematical model to show less than 1% survival benefit - (mast over lump) BUT insofar as a second contralateral developing and ultimately metastasizing the article says:

"As for developing another cancer, Dr. Tuttle said, when that does happen (and remember, it’s far less common than patients believe), 91 percent will be early-stage lesions, so more readily treatable."

The opinion piece is against bmx so does not cite stats other than "far less common than patients believe" and writes them off as 91% "early stage"

My oncologist told me "early stage" in the med literature is 1,2, and most of 3. "treatable"!!!!  Gotta love it. Spoken only like someone who's never had bc can say it.

This is such an individual decision - as you can see, so many different view points and ultimate decisions... I am in the medical profession, I study the data probably a bit too much, and the data didn't sway me. I knew that the anxiety of what could be lurking in remaining breast tissue would be too much for ME to handle. I felt so "lucky" that my smallish cancer was felt by a very experienced physician - to the amazement of several other specialists who tried to feel for it afterwards. I never would have found it on a self exam. A diagnostic mammogram was negative, only seen on MRI, etc, etc.

I also didn't love my breasts. I was honestly planning on cosmetic surgery at some point. I am 'only' in my late 30's and I would say I am a little vain - ha! I tell you this because my reconstruction did not go well. I ended up losing an implant due to infection and will need tissue transfer on that side if/when I choose to move forward again with reconstruction - much more complicated surgery and recovery, additional risk. I was devastated (and still am), but I would make the same decision again. I had a prophylactic surgery without reconstruction on the other side afterwards (I am not BRCA positive), but my surgeon supported this decision. My plan is to pursue reconstruction when I have put a little more time between me and the nightmare of last year. My point is that - even with the reconstruction failure, even with being admittedly a little vain, even with a good understanding of the data supporting less surgery - the double mastectomy was right for me. I know it doesn't eliminate my risk, but it helped ME to manage my fear a little better. 

Good luck to you - wishing you an easy surgery and quick recovery regardless of what you choose!

Well said Nan54,

I am similar to you, medical, and prob read to much. Analyzed and over-analyzed and in the end it comes down to your own specific history, personal and family and your own emotional make up. Only each person knows what they can live with and what they can't. Just as important as life and death statistics. In the end, the thing is to LIVE life. You can't do that if you live in fear all of the time. In my opinion, all answers are correct. Lumpectomy, mastectomy, single or both, reconstruction, single or both or not at all. Whatever allow that person to live as much without fear as possible. Oh, and no regrets. Whatever decision was made was the right one at that time. If a complication occurs, you deal with it and solve it the best you can. Always moving forward and not looking back. No what ifs. 

Absolutely, our advice is only that; information and stories based on our own personal experiences and from our own personal biases. I would add that along with the information gathering part of it (including our stories), and listening to your heart, to also take your doctor's medical expertise into the mix. Sometimes when people are afraid (as we all were/are), they will over treat, or under treat, their condition (not referring just to this choice, or even just to BC, but any serious medical condition) based on emotion, not facts.

With respect to Peggy Orenstein's NY Times Op-Ed, more than a year ago, Orenstein penned a much longer NY Times Sunday Magazine article, Our Feel-Good War on Breast Cancer.  Her previous article discussed the major fault line that continues to grow with respect to population based screening mammography.

I think her most recent article addresses another growing controversy with respect to breast cancer, that is, the growing popularity of BMX.  I don't think in either article she simplifies the issues.  Instead, I think she clearly spells out these controversial issues.   I think what readers take issue with, is the personal feelings that patients may have attached to these controversies that might color their judgment and reflect their own opinions of these controversies.

Since my breast cancer wasn't noticed on a mammogram, I fall into the camp that doesn't believe  population based screening mammograms save many lives.  One would think that because I'm skeptical of imaging that I would be more in favor of BMX.  However, I'm not.  When I make decisions, I usually embrace ideas from my mind rather than from emotion.  I guess you can say I am a stoic.  So, in deciding what is "right" for me, I'll tend to look for numbers.  I guess my thought process is genetic, because when a close maternal cousin of mine was recently diagnosed with a very aggressive breast cancer that was also missed on mammography, she also chose to base her decision on the numbers. Ultimately, both of us chose lumpectomy on the affected breast.

So, what I think this boils down to is....do you decide from an emotional or intellectual perspective?  There is no right or wrong way to decide.  Nor is there a right or wrong answer.

I thought the op-ed was excellent.  What Peggy Orenstein wrote represents what I've seen on this board for 8+ years.

"So, what I think this boils down to is....do you decide from an emotional or intellectual perspective?"

VR, I agree.  I'm analytical by nature, and I know that my emotions and how I feel about a situation will change over time, so on a critical decision like this one, with so many long-term implications, I will always choose to decide based on the data.

Personally, I think that whether one ultimately chooses to put more weight on the emotional side or the intellectual one, it is nevertheless still critically important that one understand (and not deny or ignore) the data, and fully understand the pros and cons of all options. If everyone truly went through a detailed and complex decision-making process, that would be great and everyone would be making the decision that's best for themselves.  But that's not what always happens.

The 'cons' of lumpectomies seem to be well understood and are often discussed here (possibly higher recurrence rate, the almost certainty of needing rads, scars on the breast and the possible deformation of the breast) but because choosing to have a BMX is often an emotional decision, the 'cons' of having a BMX are less often discussed. As the article states, "Many of those same young women underestimated the potential complications and side effects" of having a BMX.

If you opt for BMX for peace of mind, do you understand that it will not reduce your risk of mets (i.e. mortality) from your current diagnosis, nor will it completely eliminate your risk of recurrence or a new primary?  Do you understand that having a BMX will not mean that you will not need chemo or hormone therapy if it's deemed to be necessary (the exception being Stage 0 women, who will be able to pass on hormone therapy after a BMX)?  Do you understand that having a BMX may not preclude your also needing radiation, depending on your diagnosis?  Do you understand that having a BMX will eliminate most of the feeling from your breasts and nipples (those who
joyously proclaim that they still have sensation in the months after
their surgery usually don't realize that those are phantom sensations
that will fade with time)?  Do you understand that having a BMX does not ensure that you will end up with symmetrical reconstructed breasts and that revision surgery or surgeries may be necessary (approx. 30% - 40% of women need extra surgeries)?

"I had a BMX so that I could avoid rads, but it turned out that I needed rads anyway"

"I've had a BMX and my nodes were clear; I thought I was done.  Now my oncologist told me I need chemo/hormone therapy."

"I had a BMX for symmetry, but I've had an infection on my contralateral side...."

"When do I get the feeling in my breasts back?"

"The loss of my breasts is really affecting my sex life."

"I'm 2 years out and I still get muscle aches/phantom pains/itching....."

"After my BMX I'm not getting any screenings anymore and that has me really concerned."

"I had a BMX so that I'd never have to worry about BC again, but now I have a lump on the scar line."

I've spend years on this board, and I could fill pages upon pages with quotes like this. 

Of course many women do make fully educated, knowledgeable decisions, whether it's ultimately an emotional decision or an intellectual one. The BC community needs to enable a system and we need to do what we can to ensure that all women are making fully educated, knowledgeable decisions.  At that point, I think our doctors will be more accepting of women's choices, and we won't need to have articles like Ms. Orenstein's. 

Iwannacookie, I'm sorry about the experience you just had.  Please don't take what I wrote here to be specific to your situation - I'm talking more generally about what I've seen over 8 years here and I'm reacting to what's been said in other posts in this thread.  I hope your discussion with the surgeon goes better.  This is your decision, not your surgeon's, although your surgeon's input (about what's involved with each surgery, about your risk level with each option, about your treatment plan with each option) is valuable.  The woman you just spoke to, on the other hand, should just be keeping her mouth shut and butting out.  This is between you and your surgeon.