Considerations: Lumpectomy w/Rads vs. UMX vs. BMX
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:
***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?
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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 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!
Comments
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Thank you for the well researched links and questions. This was very helpful.
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Awesome list of research! Definitely a great set of readings.
Only my experience: If I had had more sick leave and (sorry, this is just me), not married, I would've gone for BMX. I know there are no guarantees, but it would have eased my mind. I was pretty ragged after 12 weeks of Taxol and 5 weeks of radiation (and there were physical changes as well). I had challenges with the AI, but I'm managing okay on Tamoxifen. I had my ovaries out several years before BC due to benign cysts. Still, things are going pretty well.
Thank you again,
Dee
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thank you so much for you post.
going today to surgeon, had IDC 18 years ago treated with lumpectomy and rads right breast and dcis left breast - just lumpectomy, now IDC in left breast and seriously considering BMX with reconstruction, have had enought mammo's and mri's dont want more rads.
is there a similar post somewhere on reconstruction - different types to consider, recovery issues, reconstruction after rads?
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That is a lot of good info. I am IDC stage 1, 1.7 cm grade two. I will have my last chemo on April 4 (6 of 6) and will continue herceptin every 3 weeks for a year after. I met with my surgeon yesterday and she supports my wanting a double mx for reasons of sanity. Neither she nor my mo can feel anything left of the tumor and will have mri tomorrow. The surgery will tell if it is in fact cPR. I do not want to live constantly feeling and wondering what could be and having mamo and mri every 6 months. It is a very personal decision and not an easy surgery but I have none since diagnosis I would go that route. We all need to do what we feel is best for ourselves for continued wellness...mentally and physically.
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I just had to make this decision and honestly it was the hardest decision I have ever made in my life. This post is going to help a lot of people --- it needs to forever stay in the forefront.
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jessie, thank you!
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what a wonderful post! I, too, just went thru this agonizing process of making this decision. Ended up figuring out all that you mentioned and linked too, but would have made life easier to have just read this post. Hope it helps others in the future (I’m sure it will). I am doing lumpectomy with radiation on the cancer side and have 2 open surgical excisions on the other side to remove a bunch of clusters of ADH. I am not a worrier by nature and know I will be very compliant with all the follow ups needed. But after trying to sort this out for myself realize how it’s such a personal choice and only the person it’s affecting can make that choice. Still waiting on a surgery date.
Thanks again for the information!
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I think many of us instinctively lean towards one or the other but I imagine a lot of people are in the middle and torn. This is a very comprehensive list of thoughts to consider.
I am very athletic -- tennis, hiking, pilates-- and part of my leaning towards the less invasive surgery was being able to resume a lot of my loved activities... I felt like MX/LE might make some of that much harder and for me that would be a quality of life issue.
I just finished rads last week -- so I am at *peak* skin irritation from rads, and it's uncomfortable... bad sunburn, w/ peeling. I had 28 sessions which is a lot. But it is tolerable... more tender than painful. I am so looking forward to a healed boob!!!
With TNBC I will get a lot of follow up regardless... I am so happy I kept my breast and I am very happy with the cosmetic results-- enough not to monkey with it further... very good symmetry consideing a chunk of flesh came out. My BS did an excellent job. As soon as the skin heals I am DONE with treatment! Which is exciting!
If radiation is scary to people, re exposure to lungs/heart: look into proton radiation. I was covered for my left sided TNBC. The skin BS is the same as regular rads, but nothing passes through the body. The proton is programmed to go into the tissue of the breast and to release all its energy there. No exit dose. Not every area has a proton center. Mine does not. I went to NJ for mine (since I used to live in NYC and have many friends there.) I was able to have fun with friends up till the last week of rads, and that made it pass quickly.
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Great post, Beesie. Saving it with my Favorites!
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Bumping for all you newcomers. The is excellent and should very much help you with making your decisions.
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I had large areas of microcalcifications and density in both breasts. I am older so I could have opted for unilateral mastectomy, tbh I couldn't bear the thought of US, mammogram, and MRIs, some every 6 mos,, followed by biopsies etc. My life expectancy is 16 years based on tables. I am still depressed just being diagnosed with breast cancer. I had a strong family history with no brca but a variation of unknown significance. My mother was diagnosed at 80, Treatment was hard on her.
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Beesie - so glad this was bumped. I agree, it it an excellent presentation. Thanks
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Thanks Beesie. Three things I want to add that I feel are deficiencies in the system that can affect decision.
1. Radiation with Mx. When I found out lumpectomy automatically has radiation but Mx does not I was very disturbed with this. I don't think any surgery can be sure it got all the "cells". I went for double mx with anxiety, ended up with 2 positive nodes, lymphovascular invasion and extra capsular extension. The RO recommended radiation based on the lvi. I was ready for a fight, but didn't have to. If you look at the NCCN guidelines BINV-D , it states that patients with Mx and 1 or 2 positive sentinal nodes (macro), should have ALND, due to the assumption they are not doing radiation. As surgeons are moving away from ALND, this implies to me Mx should automatically get radiation if no ALND. Guidelines clearly indicate to me one or the other. My BS would not discuss this logically which is one of the reasons why I am not going back to her. I also think nodes with micrometasis should be offered radiation. I shouldn't be happy about having 2 mm in my node to meet the criteria, but spent 2 weeks of SEVERE anxiety over this issue knowing I had one positive node post surgery, not knowing if it was micro or macro, waiting for surgical pathology report. I also asked BS if chest wall would be radiated along with the nodes and she took this as an insult because she got clean margins. Then RO said yes it would.
2. ILC: The studies don't really separate ILC and IDC and don't account for special considerations of ILC. As it is very hard to detect on imaging, especially mammo, doesn't always form lumps and LCIS is not detected on mammo, I didn't want to spend the rest of my life wondering if the imaging was accurate.
3. Post Mx screening: I am also very disturbed that there is no screening for Mx. I haven't figured out how to deal with this yet, except to get silicone implants just to get MRIs, when I really don't want silicone implants. Maybe as time goes on I'll be happy I don't need to get all that screening. But once in a while would be good.
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One other thought on lumpectomy vs bmx -- if someone isn't keen on lumpectomy because of concern of later asymmetry, and wants to do bmx because with reconstruction they might be more symmetrical, that isn't necessarily a problem. You can have lumpectomy in the cancerous breast and reduction in the healthy breast to make it match more closely. This can either be done as surgeries at the same time, or at different points in time. I had my reduction surgery almost 7 months after the lumpectomy and almost 2 months after radiation was over. That was in mid-November. Today I had my final follow-up appt with the reduction (plastic) surgeon. He and I are very pleased with the symmetry and basic aesthetics, and it should still get better from here.
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JRNJ, you said: "When I found out lumpectomy automatically has radiation but Mx does not I was very disturbed with this. I don't think any surgery can be sure it got all the "cells".". I would be concerned about whoever told you that rads are sure to be not required after a MX. While that is usually the case, there certainly are plenty of instances where rads will be required, even after a MX. I explain this in the very first bullet of the considerations.
I do mention ILC in my discussion about contralateral risk, but probably should add a better explanation about the screening issues that could affect both breasts, for those who choose to have a lumpectomy. Thank you for this input.
I already have a bullet that discusses the issue of lack of screening after a MX - see the bullet 6th from the end.
MountainMia, that's a good point about the options to achieve symmetry after a lumpectomy. Another thing for me to add next time I do an update. Thanks!
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Beesie, We are agreeing, I was commenting on what you said. "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."
I agree with your statement that this is important to note and wanted to highlight it. But also think the system is deficient and guidelines are a little gray, but with the right RO it might be ok. You shouldn't have to pick lumpectomy over Mx in order to get radiation. Radiation is "automatic" with lumpectomy, but not "automatic" with Mx, in accordance with NCCN guidelines BINV-1 and BINV-2. With lumpectomy and negative nodes NCCN calls for radiation of breast area and to "consider" nodes. For Mx, BINV-2 says "no radiation' if tumor less than 5 cm, neg nodes, and margins greater than 1mm. If 1 to 3 pos nodes "strongly consider" radiation, if 4 nodes pos, than radiation.
What my BS actually told me before I found the guidelines is no chemo or radiation with Mx if less than 4 positive nodes, which I realize now is not necessarily the case. There are other considerations. And I was concerned with many things she told me and will not go back to her due to misinformation, lack of information, and many other things that happened. I do know other people with Mx that did not get radiation or chemo. I personally couldn't live peacefully with neither treatment, but I know others feel differently.
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JRNJ, thanks for the clarification. That's a very interesting perspective, one I hadn't considered. On this site I have reads hundreds of times (not exaggerating!) comments to the effect that someone is choosing to have a MX specifically so that she can avoid radiation. That leads to posts explaining that sometimes rads will be recommended even for those who have a MX. And I've read so many posts where someone bemoans the fact that she had to rads despite having the MX. So most often, the fact that rads usually isn't given after a MX is considered a positive selling point in favor of having a MX, and people who have a MX expect or hope to not require Rads. You are looking at it from the flip side, noting that rads, including rads to the nodes, is an effective treatment to reduce recurrence risk, and it may be concerning to pass on rads just because someone is choosing to have a MX.
As for chemo, if your BS tied the need for chemo to your choice of surgery (lumpectomy or MX), as well as to the final pathology, that's flat out wrong. If the pathology and/or genetic make-up of the cancer (i.e. the findings from an Oncotype or Mammaprint test) suggests a moderate to high metastatic risk, then chemo will be recommended regardless of the type of surgery the patient had. Similarly, if the pathology and/or genetic make-up of the cancer suggests a low risk of mets, then chemo will not be recommended, whether the patient had a lumpectomy (with or without rads) or a MX (with or without rads). This is standard practice and isn't some unusual treatment protocol, and it's scary if your surgeon presented misinformation about this. A good reason to not go back to her for sure
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JRNJ, it sounds like a second opinion could be very helpful. I found my oncologist who was a second opinion for me. Absolutely love him and have been with him for 10 years.
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Wow! I just read this thread and it has a lot of good information. When I found out I had BC, I immediately decided for a double mastectomy and never waivered. I’m glad I wasn’t on the fence and had to decide. I think we all have our reasons. I am 46 and have been dealing with call backs since 31. The anxiety wasn’t worth it and my lifetime risk is 30% so I felt that even if they got this one out, I would inevitably get it again. My breasts are extremely dense. The crazy thing is after MRI,s 4 mammos, ultrasounds, etc. they never found the LCIS/DCIS next to my invasive until after the surgery and even my BS said the LCIS alone, he thought I made the right decision. I just couldn’t deal with this process again even if it continued to be early stage. Now don’t get me wrong, I’m in the reconstruction phase and it’s not easy.
The one thing I do struggle with is no recommendations for rads or chemo. Will Tamoxifen be enough? I am going to question my MO when I meet her next week as apparently they don’t even want to give me an Onco test which I will demand.
I will say that I have had several women whom are dealing with it again and told me they wished they had taken them off the first time and many of these women alsohad rads/chemo. I think it’s all a crap shoot in the end.
I wish it was more clear cut because so many of these studies conflict with one another it seems. Just like what foods to eat😂
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Beesie and Cowgirl13, Yes, I wanted to be aggressive and saw radiation as an effective treatment. But am getting a little scared now of side effects such as lung cancer since I have smoked casually. And need to work out reconstruction around treatments as already had one failed attempt with infection, but feel like cancer treatment is the priority. But regardless of bad BS, RO was clear right away, after I finally met him 2 months after dx, he recommended radiation and I didn't need second opinion. My chemo story is more complicated and discussed on other threads. The short version is I fell into a gray area, and wanted to be aggressive. MO sent me to Rutgers, they said no chemo. I wasn't happy with this so went to Sloan for another opinion and they said yes to chemo, but CMF, which I am doing now.
Also note, I think the studies showed overall survival similar, but local recurrence much higher with lumpectomy. You can correct me if you've seen otherwise.
Badluckbday, I struggled with this too. You shouldn't "give up" radiation because you decided mx. But I have positive nodes and you don't, so hopefully you'll be fine. But I made the decision not knowing if I had positive nodes, and stressed about no radiation. Although my BS was saying lumpectomy for a while, due to my huge LCIS that kept getting bigger in different scans, in the end, I had to get the mx in right, left was voluntary.
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I need to decide about my upcoming surgery very soon. So far, I'm leaning toward a lumpectomy with a bilateral reduction/lift, followed by radiation. My initial reaction was to have a BMX with reconstruction. However, the BS seemed to think it was too radical for my diagnosis. Since my visit with BS, I've read a lot of research that seems to agree with her. There isn't any significant improvement in the recurrence rate and I will be saying goodbye to my natural breasts forever. I think its an almost impossible decision to make, sinceI would have to lose my breasts forever when there is a 3%ish chance of recurrence. At the same time, will I regret it 5 years down the line. Ack!
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JRNJ,
It sounds as you have been through the ringer. I agree with you that that has been my understanding. I also noted you had LVI. If I had, I would be opting for rads/chemo. It’s sounds like you’ve done all the right things.
dyson, my mom did lumpectomy and rads six years ago and is fine. She second guesses it sometimes, but for now is on the clear. The doctor explained to me (when we thought we were only dealing with a small IDC), that lumpectomy with rads and a double mastectomy had equal outcomes for survival and I agree that literature supports that. I felt with my density and young age (if I were my moms age I probably would have chosen differently), I was bound to get it again and he agreed there was a higher chance. And, at least for that one breast, I did do the right thing is I probably would have had to go back and get a uni anyway after finding more during surgery. A lot of mine was centered around anxiety and he said having my density naturally increases my rate of breast cancer anyway and I’m nowhere near menopause and mine was er. I think you are making a good decision. A double is a far greater surgery with more risks.
There doesn’t seem to be a right or wrong answer for surgery or treatment. It’s crazy🙄
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I don't want to hijack this thread as my post is about rads but I just wanted to say to JRNJ that I am 10 years out from radiation and I haven't had any side effects (this far). My tumor was left side at 2:00. I was 63 when I had radiation and had the hypofractionated protocol which is about 19 rounds. It was very easy and I didn't have any burn or blisters. I slathered Aquaphor on my breast and under my arm. Again, I don't want to take away from the intent of this thread as it is about Lumpectomy w/Rads vs UMX vs BMX. I should post this in the radiation thread.
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Sometimes, the location of the tumor is what dictates rads, even with an MX. Within fifteen days of diagnosis my tumor exploded in growth and an MRI indicated it had invaded the nipple (when it was nowhere close at the biopsy). Even though I had a BMX and had a complete response to chemo, the concern that it could have gotten into the skin (like inflammatory), was what drove radiation in my case.
JRNJ, I found radiation to be the easiest part of my treatment and I had a full thirty with boosts. Where I received radiation, the technology they use to protect your heart and lungs is similar to what the military uses with surface to air missiles. In NJ, you should be able to find a place that does everything they can to protect your heart and lungs.
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Badluckbday, Cowgirl13 and Beesy: Thanks for the radiation support. On right side, so easier on heart. My main paranoia is lung cancer. My mom died of it. But she was a heavy smoker. And yes, LVI was my ticket to radiation. Which disturbs me because NCCN guidelines also recommend it for positive nodes and I don't know if they would have given it to me without the LVI, but I can't keep dwelling on it, I got what I wanted. But that is why I commented on this thread, because the "system" is inconsistent regarding lumpectomy vs. Mx.
Dyson, Its a really hard decision, I dwelled on it for a while. I was almost swayed by wanting a tummy tuck, lol. My PS told me single Mx, we can do DIEP, double I need implants. But in the end I didn't want to worry the scans would miss something for the rest of my life. But I have ILC, which is harder to detect. You need to follow your gut. I didn't know there would be so many decisions we would have to make. That is the worst part.
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Bumping for Bep.
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Bumping for kmldlp.
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Bumping for cangold.
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moth posted this article on another thread, but it is new research and also relevant to this thread, so I am posing it here too.
The article "Breast-Conserving Therapy is Associated with Improved Survival Compared with Mastectomy for Early-Stage Breast Cancer" can be found here:
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.
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buttonsmachine and moth, thank you! I will add that into the research list that I have in my opening post.
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