hi jessie123

there are a variety of personal factors for each person, but my decision was made after my lumpectomy. the pathology on that showed that the cancer had moved from stage 0 to invasive and was a bit more than expected. the other breast had some spots that had not been biopsied, but I decided if I was getting one removed I'd have both removed both for peace of mind and because I was not planning reconstruction and wanted a symmetrical look. post mastectomy pathology showed 2 lymph nodes were just starting to get involved.

had the lumpectomy been clean i would not have done anything further.

I had 2 tumors and 1 suspicious area. My tumor board strongly recommended mastectomy. It was a very low point for me. But I had an mx then later DIEP with good results. In retrospect, I am glad to avoid radiation accompanied by lumpectomy. So I received a complete pathology, the 2 tumors were ilc and idc separate occurrences and the suspicious area turned out to be normal tissue. So I received very excellent margins avoided radiation and had excellent cosmetic reconstruction. At the time I didn't realize the outcome.

No nodes or skin involved.

Initially after my DX I did have a choice between lumpectomy with rads, or mastectomy. Things changed with further imaging and tumor board recommended MX. But my BS did say in the beginning, when I did have the choice, that if I went with lumpectomy I could still choose mastectomy later. She stated that when it came time for my follow up mammo and I was just too anxious with follow up I could still get the MX. That might be something you could discuss with your BS. As others have said it is a very personal choice and in the end you will make the right choice for yourself. It just sucks that we have to make these choices in the first place. I wish you the best.

For less than stage IV breast cancers, I don't really see some breast cancer as less serious than others, just perhaps less urgent in some instances, or requiring more treatment, or are more difficult to treat, but all of it can become life threatening and there are women here who had stage 1a, grade 1 or 2 breast cancer, or even DCIS and were treated for it, and years later discovered it had spread.

The size of my tumor at diagnosis was the tipping point which pushed me in to the BMX zone. I would have needed radiation if I had a lumpectomy at this point and in terms of volume removed, there would have been little difference between a unilateral mastectomy and lumpectomy for me and one sided reconstruction would have yielded severely asymmetrical results. That combined with the fact that there was a family history of bilateral breast cancer and I had very dense breasts which could obscure breast cancer made the BMX seem more ideal.

However if I had been diagnosed properly when the tumor was still under half a centimeter then I likely would have just had a lumpectomy.

I had small very dense breast tissue that completely obscured conventional imaging. So my cancer was missed twice in one year by mammography and ultrasound and was only picked up through an MRI. Because of the location of the tumor (close to the chest wall) and difficulty to image, I knew I wanted at least a unilateral Mastectomy. But concerns for being able to catch any additional cancers as well as wanting to be even pushed me into the double. I also did not want radiation over my heart if I could avoid it. So it truly is a very individual decision. And there are significant recovery differences between the procedures to consider. I had a benign lumpectomy on the right breast 20 years before my cancer appeared. So for me, double was the best option and I haven't looked back. Take your time exploring your options, and proceed with what feels best for you.

It may depend on whether you're working and/or can take substantial time off from work for surgery. I chose a lumpectomy, even though I was Stage IIIA, because I needed to be back on my feet as quickly as possible. Indeed, I returned to work part-time the day after my lumpectomy.

I also have twins with moderate-severe autism. They are a handful. I needed to be mobile and able to manage them to the best of my ability.

A BMX is a major surgery that is more likely to result in complications than a lumpectomy. If you opt for reconstruction, that's at least another surgery, if not more (unless you get implants during the BMX). (About a third of women who undergo reconstruction have complications.)

Because I was diagnosed with an aggressive form of breast cancer, (grade 3 triple positive), I was going to get rads regardless of whether I did a mastectomy or a lumpectomy. So, doing a BMX wouldn't have meant no rads for me.

Also, unlike other BC patients, my breasts are a C-cup, so removing a golf-ball sized amount of tissue didn't make much of a difference. My right breast is a bit smaller now than my left breast, but you can't tell when I'm wearing a bra. Women who opt for a lumpectomy often retain sensation in their nipples, which (for some) is a definite positive.

It is true that you are slightly more likely to suffer a local recurrence if you do a lumpectomy + rads, rather than a BMX. However, women who opt for a lumpectomy + rads have the same survival rates as women who opt for a BMX. In other words, a BMX does not reduce your likelihood of metastastic breast cancer in the bones, liver, lungs, etc., vis-a-vis a lumpectomy + rads.

Good luck -- there are lots of good reasons to do a BMX, and lots of good reasons to do a lumpectomy + rads. There is no one best choice, just a best choice for YOU.

Years 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 and have continued to refine it and add to it, thanks to great input from many others. In recent years, a number of women here have continued to re-post this whenever this question comes up, but I noticed that no one has posted it lately, so I thought I would pop in and post it here. I have updated a few of the considerations based on new research, what is now available with reconstruction, and new issues I've seen raised on this board, and I have also rewritten and added to the research section at the beginning, to incorporate the latest research findings.

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. Please note that this list is specifically written for those who have invasive breast cancer; some of the considerations are different for DCIS and I posted a similar list for women with DCIS on the first page of this thread: Topic: lumpectomy vs mastectomy - why did you choose your route? (DCIS)

Before getting to the list of considerations, here is some research that compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX or BMX because they believe that it's a more aggressive approach. If that's a big part of someone's rationale, it's important to look at the research to see if that's really true. What the research has shown is that in most circumstances, long-term survival is the same regardless of whether one chooses a LX with radiation, a MX, or a BMX. This is largely because it's not the breast cancer in the breast that affects survival, but it's breast cancer that has moved beyond the breast that could lead to the development of a metastatic recurrence. The risk that everyone with invasive breast cancer has is that some breast cancer cells might have moved beyond the breast prior to surgery. So the type of surgery one has, whether it's a lumpectomy with rads or a MX or a BMX, as a rule doesn't affect survival rates. It is important to note however that with a lumpectomy, it is assumed that the patient will also have radiation therapy. In fact, a number of recent studies suggest a survival benefit to having a LX with rads (vs. having a MX or BMX), possibly due to the effects of having radiation.

***UPDATED*** Here are a few studies that compare the different surgical approaches:

Survival Comparisons for Breast Conserving Surgery and Mastectomy Revisited: Community Experience and the Role of Radiation Therapy

Overall survival according to type of surgery in young (≤40 years) early breast cancer patients: A systematic meta-analysis comparing breast-conserving surgery versus mastectomy

Breast-conserving surgery followed by whole-breast irradiation offers survival benefits over mastectomy without irradiation.

Survival after lumpectomy and mastectomy for early stage invasive breast cancer: the effect of age and hormone receptor status

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

Lastly, the following is not a research study, but is an excellent write-up summarizing the implications of the most recent research:

Decision Making in the Surgical Management of Invasive Breast Cancer—Part 1: Lumpectomy, Mastectomy, and Contralateral Prophylactic Mastectomy

***UPDATED*** Now, on to the list of 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 endocrine (hormone) therapy (Tamoxifen or an aromatase inhibitor) or Herceptin or chemo? It is very important to understand that if it's believed necessary or beneficial for you to have chemo or endocrine 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/an AI 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 Radiation? (Note again that some women who have a MX may still require 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 Mastectomy (MX) or Bilateral Mastectomy (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 have significant problems with your surgery or reconstruction, or 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, options that will help you get a more natural appearance including having a nipple sparing mastectomy (NSM), having pre-pectoral implant reconstruction, or having autologous reconstruction (such as DIEP or GAP surgery). Not all plastic surgeons are trained to do these procedures so your surgeon might not present these options to you. Do your research and ask your surgeon about the type of procedures you are interested in. If he/she doesn't do that type of reconstruction, it may be worth the effort to find a plastic surgeon who does, in order to see if the option you prefer is available for you, depending on where your cancer is located in your breast and your body type.
• 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, 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, but it can take a few years. For this reason, some women choose to have a BMX in order to avoid the anxiety of these checks.
• If you have a MX or BMX, how will you feel about the minimal screening you will have in the future? For most women, a MX/BMX significantly reduces the risk of a localized (in the breast area) recurrence or a new primary breast cancer. However because it's impossible for even the best surgeon to remove every cell of breast tissue, there always remains a small risk (1% - 2%) that cancer could recur or develop in the area of the removed breast. But with no breast(s), most women no longer receive imaging tests - no more mammograms, ultrasounds or MRIs (although some with implants may get MRIs on occasion to check the integrity of the implant). Women who have a MX or BMX should be aware of this and need to consider how they will deal with this and what they will do to monitor their breasts.
• 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. Keep in mind however that over time the fear will lessen, and having a MX or BMX does not mean that you have completely eliminated your breast cancer/recurrence risk; 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 by the type of breast cancer you had (lobular breast cancer may be higher risk to occur contralaterally; the research goes both ways on this) or if you have other risk factors. Find out your risk level from your oncologist. When you talk to your oncologist, determine if 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 to carry a BRCA mutation). Those who have a genetic mutation may be significantly higher risk to get BC (depending on the specific genetic mutation) and for many women, a positive genetic test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative genetic 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 hope that this helps.

And remember.... this is your decision and yours alone. Don't make the decision based on what someone else (partner, parent, child, friend) wants you to do or based on what another breast cancer patient did. How someone else feels about it and the experience that someone else had might be very different than how you will feel about it and the experience that you will have. So try to figure out what's best for you, or at least, the option that you think you can live with most easily, given all the risks associated with all of the options. Good luck with your decision!

Lots of good information here. I'll repeat some that applied to myself, personally.

I opted for bmx because I had D cups and removing one would be cosmetically challenging. My cancer was lobular, which was extremely difficult to diagnose (mammogram and ultrasound and palpation all missed it). I wanted to try and avoid radiation since rads can cause secondary cancers of skin, lungs, etc...but even with bmx, that is not always possible to avoid.

Mostly, I did not want constant monitoring. I would have had to have annual mammograms and annual MRIs because MRI was the only thing that picked up my cancer. Not only is that a lot of money and time, but the stress, for myself, immense. I have PTSD from all this cancer crap and even going to a doc for a routine wellness exam freaks them out with my tachycardia I get from fear. Scanxiety is used here a lot, so at least I know I'm not alone.

BMX does not remove 100% of breast tissue, so local recurrences can and have happened.

Time, money, age, frame of mind, married/single, and acceptance all play into the decision making. Best to you.

My breasts were extremely dense. I knew imaging had limitations and I was not willing to take a chance. Also I was going broke doing high risk screening and I'd had two $5000 out of pocket excisional biopsies in as many years. It is not the same as it was with the originals, but after nearly seven years I don't remember how my natural breasts felt. For me losing my breasts was not a big deal. I was thrilled I'd outrun the beast until I found out I hadn't.

Decisions can be influenced by treatment choices. In discussion with my BC surgeon, upon hypothesising different variations of treatment, his reaction to risk helped me understand the difference; in my case. If I opted for no radiotherapy he recommended a mastectomy over a lumpectomy. Same reaction to the proposition of not taking hormones blockers.

Also, Ki67 readings are controversial and should be, at this stage, referred to as a complete diagnostic profile. Some studies have found that levels are related to the phase a woman is in during her menstrual cycle.

I had a low reading before surgery and a high reading post-surgery due to my menstrual cycle.

This finding is not applicaple to post-menopausal women or men with breast cancer.

I had my right breast biopsied at the age of 18. Pre-mammogram (68 now), doctors fretted about righty's lumpiness. I breast fed my babies for a total of five years. Doctor was concerned about a pea-size growth in that breast about 25 years ago, but determined that a watch and wait strategy would be best. Ten years ago they flagged it again, and did a fine-needle aspiration. It was milk residue. My sense of touch is not good, due to a probably hereditary peripheral neuropathy, and they always ask, and sigh. My most recent mammogram was full of tiny stars; more than before. After an ultrasound and core biopsy, they said it was DCIS, with one disagreeing opinion of IDC. Totally fed up about it, my immediate reaction was to cut it off; I had previously been irritated with their constant concern about righty. With MRI, they found that the DCIS extended from nipple almost to the chest wall, increasing the chance of an invasive component somewhere in there. I no longer had a LX/MX choice.

I have chosen chemo because my HER2+ cancer is so nasty. If they had explained the reasons for their concerns about righty, and shown me the statistics (I have graduate-level training in stats) of my right breast eventually developing cancer, I probably would have chosen a prophylactic mastectomy (note that the choice of mastectomy was immediate), and avoided chemo, which is guaranteed to make my peripheral neuropathy worse. I know PN gets better with time, but I am 68, and nerves heal slowly. One of the consequences of compartmentalization in the medical profession.

fear of recurrence, fear of not catching recurrence in time. Fear of needing more than surgery. Fear of redoing chemo/radiation, etc.

Hi jessie,

My initial diagnosis on the right breast was a 7.5 mm invasive ductal carcinoma +/+/- mass with pre-cancerous calcifications. My breast surgeon recommended a lumpectomy and I wouldn't need chemo. Then I had an MRI on the left breast to make sure we weren't missing anything. It detected a 1.5 cm invasive ductal carcinoma +/+/+ mass with a group of pre-cancerous nodules. It would require chemo. It was at this point, with everything I had going on, I chose to have the BMX. My breast surgeon agreed completely with that decision.

BMX was a no-brainer for me due to my genetic mutation (BRCA1+), the tumor aggressiveness, age, and (honestly) fear. Mentally I could not handle a lumpectomy. It all sucks, but no regrets.

Best wishes to you!

Hi,

I had a lumpectomy and rads but now wish I had a mastectomy purely for emotional reasons. The surgeon that my GP referred me to originally did not present any other options and I was too scared to delay things by going elsewhere.

I've read that lumpectomy and rads has the same effectiveness as mastectomy but it weighs on my mind a lot that I will get another primary tumor. Mentally I find it hard still having them.

I'm stage IV now and I would still be stage IV even if I'd had a mastectomy so no difference for outcome for me. But having a mastectomy is probably off the table for me now.

It's such a personal decision, my only recommenda is to make sure you feel like you have received all the information and medical opinions to make the right decision for you. I will add that I found the recovery from the lumpectomy and rads very doable.