Years ago I put together a list of considerations for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy. Over time I continued to refine the list and add to it, thanks to great input from many others. Over the years I have posted this many times, and although I don't spend much time on this board anymore, a number of the long-time members here have continued to re-post it when the question comes up. In reviewing the post, 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. I have also rewritten and added to the research section at the beginning, to incorporate the latest research findings. I posted this yesterday in someone else's thread but upon thinking about it, I decided to start a new thread instead, so that the post is easier to find, since so many people ask about it.
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 Unilateral Mastectomy, or a Bilateral Mastectomy. 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 that there may be a small survival advantage in having a Lumpectomy with rads (vs. having a UMX or BMX) possibly due to the benefits of having radiation.
***UPDATED*** Here are a few studies that compare the different surgical approaches:
Breast-Conserving Therapy is Associated with Improved Survival Compared with Mastectomy for Early-Stage Breast Cancer: A Propensity Score Matched Comparison Using the National Cancer Database (July 2020) "Conclusions: BCT is associated with superior overall survival compared with mastectomy for early-stage breast cancer using well-matched, contemporary data. In a propensity score matched comparison of a contemporary cohort of female patients with early-stage breast cancer, breast-conserving treatment was associated with improved overall survival compared with mastectomy. Although not practice-changing on its own, these data contribute to a growing body of evidence that suggests a benefit to breast-conserving treatment in this population. Continued efforts toward patient education and decision-making tools may further help to combat the increasing rates of mastectomy utilization in this population."
Breast-conserving surgery followed by whole-breast irradiation offers survival benefits over mastectomy without irradiation. (June 2018) "This large prospective cohort study has provided further support for the survival benefits resulting from BCS followed by whole-breast irradiation in patients with early breast cancer. The data indicate a contributory role of partial RT coverage of the lower axillary levels in the avoidance of axillary recurrences; however, the improvements in breast cancer-specific survival and overall survival call for further explanatory factors, and socioeconomic variables and co-morbidity should receive closer scrutiny. The present data do not support the historical claim that there is a higher risk of local recurrence after BCS followed by RT."
Survival Comparisons for Breast Conserving Surgery and Mastectomy Revisited: Community Experience and the Role of Radiation Therapy (June 2015) "We found no difference in overall survival by breast cancer surgery type when the effects of adjuvant radiation therapy and other covariates were eliminated using statistical methods. However, comparison of BCS plus radiation to mastectomy alone revealed a significant survival benefit with breast conserving therapy, suggesting that the prognostic differences reported here and by others may be related to use of adjuvant radiation therapy after BCS rather than to the extent of surgery itself. Given the limitations inherent in this type of study design, prospective confirmation of this finding is necessary."
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 (February 2015) "Young age is an independent risk factor for local recurrence after breast conserving surgery (BCS) and whole breast radiotherapy (WBRT) for breast cancer. The aim of this study was to carry out a systematic meta-analysis to address the issue as to whether type of surgery might have an impact on overall survival (OS) of young patients with early breast cancer. CONCLUSION: Considering all the limitations, from the present meta-analysis carried out on 22598 patients it appears unlikely that mastectomy provides better OS compared to BCS + WBRT in early breast cancer patients aged 40 years or younger."
Survival after lumpectomy and mastectomy for early stage invasive breast cancer: the effect of age and hormone receptor status (April 2013) "In a population-based cohort with early stage breast cancer, BCT was independently associated with an advantage in breast cancer specific survival at almost 10 years of follow up. The magnitude of this benefit was greatest among women 50 years or older at diagnosis with HR-positive tumors, although this effect was seen regardless of HR status and age at diagnosis. These results provide confidence in the efficacy of BCT even among younger patients with HR-negative disease thought to be at relatively higher risk for local failure."
Twenty-Year Follow-up of a Randomized Trial Comparing Total Mastectomy, Lumpectomy, and Lumpectomy plus Irradiation for the Treatment of Invasive Breast Cancer (October 2002) "Conclusion: Lumpectomy followed by breast irradiation continues to be appropriate therapy for women with breast cancer, provided that the margins of resected specimens are free of tumor and an acceptable cosmetic result can be obtained."
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 even if you have a mastectomy, radiation may be necessary, 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? Breast cancer 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). This second breast cancer diagnosis could happen in just a few years or not for decades. As compared to the average woman who has not had breast cancer, several studies estimate that breast cancer patients have about double the risk to be diagnosed again over their lifetimes. This risk level 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 and 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 again (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 some women a negative genetic test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your doctor. Because we've all had breast cancer one time, we are all higher risk than the average woman to be diagnosed again but the risk level is different for each of us so find out your risk, based on everything that is unique to you.
- 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?
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 each of these considerations, and the experience that someone else had with their surgery and recovery might be very different than how you will feel 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!
Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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