Lumpectomy or Mastectomy - How did you decide?

DsMom

I have been given the choice...surgeon said he is completely comfortable either way. I have one confirmed 2cm tumour, another possible .5cm (not yet biopsied) lymph nodes "appear" to be clear. I am 43, I have a 3 year old and my mom, her sister and her own mom all died of cancer between age 40-56. I think I am being guided by fear right now...my gut tells me take as much as you can - take it all...I just need the best chance of full recovery and no recurrence. For those of you who had a choice...how did you decide? My husband always says don't kill a fly with a sledge hammer but this is my health...maybe I want to use a sledge hammer.

Icietla

It is not a fly! It is nothing like a fly!

Your choice -- if it is indeed your choice -- will be the one that is right for you.

Icietla

You are going to hear (and/or read) it stated (or implied) that the big-number statistical studies indicate that the surgery type chosen makes no (appreciable or significant or practical) difference. Those statistical studies generally lump together so many cases of early stages of breast cancer diagnosed within their particular time windows -- whatever types, and whatever ages at diagnosis. Each patient is a person, not a mere statistic, not some fungible unit. Each has his/her own particular cancer type, tumor characteristics, tumor configuration and positioning, disease state, maybe more ongoing or upcoming health concerns, personal circumstances, and other personal concerns unique to him/her. Also keep mindful that (differences in) overall survival rates are to be distinguished from (differences in) recurrence rates, and survival rates are also to be distinguished from disease-free survival rates.

Here are some some pages you may find helpful__

https://community.breastcancer.org/forum/47/topics/840801?page=1#post_4630441

http://www.breastcancer.org/treatment/surgery/mast_vs_lump

http://www.breastcancer.org/research-news/best-surgery-for-early-stage-may-depend-on-age

DsMom

Thank-you very much! The third article in particular was VERY helpful! I had not found that one as of yet. Much appreciated!

Icietla

You are very welcome, DsMom. We will support your treatment choices, whatever you decide.

flaviarose

I chose lumpectomy, because my surgeon said that my survival would be the same as a mastectomy. I also had two tumors. Subsequent to the surgery, I had genetic testing done, and found that I have the chek2 mutation. In hindsight, I probably would have chosen the mastectomy if I had known of the mutation, because now I am at high risk for a recurrence or a 2nd primary. Since you have a family history, you need to get genetic testing to make the most informed decision.

debiann

If you are node negative and the tumor is not over 5cm or close to the chest wall you can usually skip radiation if you do an mx.

Some people sail through rads with no problems, others have horror stories, some run into health issues years down the road.

Due to the location of my tumor, radiation would have been close to my heart. I chose an MX so that I would not need radiation.

I chose to do a double mx for symmetry, I wanted both sides to look the same.

Initially my husband convinced me that mx was over treatment, so I did start with a lumpectomy, but I had close margins and needed a second surgery anyway. That's when I went with the mx. When we learned that with an mx I could skip rads, my husband was totally in agreement.

I did immediate DIEP recon plus 3 small surgeries for revision and nipple recon. The results are fantastic and they look and feel very natural.

The decisions are the most difficult part and there are no "right" answers. You need to pick the treatment plan that fits your lifestyle and gives you the most peace of mind.Good luck to you.

ruthbru

I had a lumpectomy. My thought was that if I wasn't happy, I could do a mastectomy later but once my breast was gone, it was gone forever. As time has past, I am even more glad that I made that choice. This is just me, but I would have had a hard time being flat, but the more I have learned about the problems with reconstruction, the less I think that I could ever go through that process (and it is a process, not a one shot and you're done type of thing). I also wanted as quick of a recovery time as possible, with the least chance of complications (which, like any surgery, the more extensive the surgery, the more chance there is of that). Radiation, for me, was the easiest part of the whole treatment. I had no bad SEs then or later. That breast actually looks 'perkier' than the other one. A friend of mine had BC about 35 years ago. Back then the only choice was a mastectomy. One reconstruction became widely available, she did reconstruct. She is a surgical nurse, so has seen the whole thing from both sides of the operating table. When I asked her advice, without skipping a beat she said, "If you have a choice, go with a lumpectomy."

ruthbru

Beesie is one of the resident experts on the boards. I am copying a very well thought out post she did on this topic.

"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?

.I hope that this helps. And remember.... this is your decision. 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!"

BarredOwl

Hi DsMom:

I am assuming that you have invasive breast cancer (e.g., IDC, ILC). It would be helpful if you could fill out some profile information, such as at least whether the diagnosis is IDC or ILC or something else and ER, PR and HER2 status.

Regarding the Breastcancer.org summary linked above and entitled, "Best Surgery for Early-Stage Disease May Depend on Age", the underlying document was a meeting abstract, which may be preliminary in nature. Therefore, I searched for a full-length, peer-reviewed paper (using the abstract title and first author as search queries), in case the final analysis, with additional details, caveats, limitations, and a discussion of other studies, is available. In this case, there is such a paper:

Laurberg (2016): "Age-dependent outcome in breast cancer - Long-term age-dependent failure pattern after breast-conserving therapy or mastectomy among Danish lymph-node-negative breast cancer patients"

Main Page: http://www.thegreenjournal.com/article/S0167-8140(16)31109-4/abstract

PDF version: http://www.thegreenjournal.com/article/S0167-8140(16)31109-4/pdf

Patients were all "lymph-node-negative patients in Denmark . . . who received local treatment only". More details regarding the study population and treatment are available:

"Study population and treatment

The study cohort included 813 lymph-node-negative patients with tumor size <5 cm and no previous cancer. Included were all histological tumor types except invasive ductal carcinoma grade II/III. All patients had given informed consent to be enrolled in the DBCG-89a-protocol [24–25] administered by the Danish Breast Cancer Group (DBCG). Data were collected prospectively. All patients received partial axillary dissection and were advised to receive mastectomy (with no other treatment) or lumpectomy and whole-breast RT of the residual breast (48 Gy in 24 fractions+ boost of 10–16 Gy in 5–8 fractions) [26]. No patients received adjuvant systemic treatment.

The study cohort had a balanced proportion of patients within each 5-year age group. Geographical inclusion criteria were used to secure an unbiased cohort (Sup. Fig. 1): Young patients were included nationwide; old patients from a particular region of Denmark. Patients with known BRCA mutations were excluded (N = 10)."

This is quite a specifically drawn subset of patients. The BC.org summary mentions that the patients did not receive "chemotherapy"; however, the paper refers to patients receiving no "adjuvant systemic treatment", a much broader term, which by its plain language could include endocrine therapy (for hormone receptor-positive disease) and HER2-targeted therapy (for HER2-positive disease) in the appropriate cases as well. As noted in the Discussion:

"Almost all of the patients in our study would have received adjuvant anti-hormonal therapy, chemotherapy, and/or Trastuzumab [HERCEPTIN] if they had been treated according to present-day guidelines. This evidently affects the generalizability of our findings to today's clinical practice. Systemic treatment reduces LR [14,22,46–47] and may improve survival, especially in young patients who undergo BCT [12]. However, LR rates have decreased over the past decades, and a 10-year LR risk at 2–3% has been published [48–50]; however, long-term data from this period are lacking. The low 5–10-year LR rate seen today would likely reduce the observed survival difference between young patient receiving BCT and mastectomy in the present study."

To ensure proper understanding, please ask your breast surgeon about the treatments received by these patients, how they might differ from your treatment plan (to the extent known at this time), and the implications of that.

As always, if this paper influences your thinking about surgical choice, please be certain to discuss the findings and your thinking about them with your surgeon, to ensure accurate understanding and applicability to your specific case.

Regarding Beesie's post copied over by Ruthbru above, please note that Beesie recently issued an update on Sep 15, 2016 that can be found here:

Lumpectomy vs. Mastectomy (Invasive disease):

https://community.breastcancer.org/forum/82/topics/848049?page=1#post_4802494

BarredOwl

ruthbru

Thank you, BarredOwl, I had missed Beesie's latest update.

Chloesmom

Had to change doctors as the first one was pushing for lympectomy

my deciding factors were

1) mine was ILC. Harder to see on mammograms. Didn't want to wonder and go theough more MRIs.

2) even if motality the same quality of lufe is impotrant- didnt want any more surgeries

3) was i itially anxius about being flat, but actuallt enjoy my new small wardrobe. O lt wear foobs for dressup

Racy

Bumping for Jillybeantabby.