Lumpectomy versus Mastectomy- How to Decide?

Hi:

Here is Beesie's text re-posted by Ruthbru

https://community.breastcancer.org/forum/44/topic/...

Bc.org's page:

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

BarredOwl

I don't know that there is ever a right or wrong choice, only what we can best live with (or why Beesie's post was so helpful for so many of us) I chose lumpectomy/partial mastectomy, thinking that I can stop tamoxifen, even stop rads, but i can't put my breasts back on. That said, many women do choose mastectomy, for a variety of reasons, and they feel that that choice is appropriate for them.

tmcfizer, I was also diagnosed with IDC x 1cm. I wanted a lumpectomy but didn't want radiation therapy for 6 weeks.

I thought about single and double mastectomies but that terrified me too since my tumor was small and considered stage 1.

As I was researching treatment options and how to get a second opinion, I came across a treatment called IORT.

This past Tuesday, 8-25-15, I had a lumpectomy and intraoperative radiotherapy (IORT). My breast surgeon removed the tumor, then the radiation oncologist administered 20 minutes of radiotherapy directly in the tumor bed in surgery. The breast surgeon sewed me up and that is it.

I'll get the pathology report this Monday. If margins and lymph nodes are clean, I'm done.

I would encourage you to google "IORT breast" and your city to find breast surgeons in your area who do this.

Here is the website of my surgeon and an explanation of IORT:

http://drholmesmd.co...e-radiotherapy/

Wow, Suzette, that's amazing and frightening at the same time! I'm so glad that you are on the mend, though. Whew.

My team only uses MRI as a benchmark once a diagnosis is made, and for good reason. My experience is similar to Suzette's. I had a mammo with u/s and it showed my tumor to be 1.7 cm. I knew it couldn't be correct because I could easily palpate the lump, and it was at least 4 cm. My surgeon went ahead and recommended lumpectomy and rads pending MRI results. The MRI showed an 8 cm tumor (IDC) plus diffuse sites of DCIS throughout the breast. Needless to say, the plan of attack changed radically.

Now, after neoadjuvant chemo for nearly five months, my main tumor has shrunk to within lumpectomy limits as palpated by my onc. MRI will ultimately determine the surgical course at the end of September.

Here's Beesie's post (so you don't have to hunt for it).

"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!"

I was absolutely horrified to hear my surgeon say mastectomy because 2 tumors and a suspicious area. It was emotionally awful but the pathology after mastectomy confirmed I could of had a lumpectomy I felt so happy the extend and report showed the best outcome. They were able to tell the tumors were separate and small and the suspicious area was normal. I would not have that info if I had lumpectomy. I spent 4 sad months before I could be scheduled for the DIEP. The results were fabulous I feel like the horror of disfigurement was fixed very minor scars very fine white lines. My DIEP looks just the the other real one. No radiation and the skin issues.

With this being said cancer treatment is barbaric and I hope to live to see this change and we won't have to go through the cut burn and poison approach.

My understanding is that plastic surgeons hate working on radiated skin but I'm not sure why I know 2 ladies that had very successful diep surgeries even though they had radiation therapy. I have read lumpectomy surgeries can have successful plastic surgery results. A good plastic surgeon can fix just about anything.

Wow, 614, that was a lot to go though. I am very happy it worked out for you and you are pleased with your results. Not sure why you went to Texas, but it sounds like you made the right decision. I had my breast tissue slides sent to Johns Hopkins since I wasn't comfortable with the doctor who wrote my pathology report. I even went for a 2nd opinion with an MO since I wanted to make darn sure if I was going to have chemo there was a good reason for it.

Unfortunately, so many women are scared and listen to the one doctor they get their results from and go no further. Sometimes it's those ladies who end unfavorable results. I also didn't let the RO tattoo those blue dots on me. I knew they would bother me and it was only being done for their convenience even though they will tell you otherwise. They had darn good records of where my radiation was directed and I kept pics of the black sharpie mark :-).

In the end, I feel very fortunate that my breasts look the way they did before all this began. I am not deformed, my hair is long again and I don't look half bad for 50 :-). I have aged a bit quicker with the treatments and have a tad of lymphedema in my left breast/back, but I've passed the 4 year mark. My follow up is now one screening mammo a year and it isn't even diagnostic.

"Lately it occurs to me what a long, strange trip it's been."

I agree, Meow13, that breast cancer treatment is barbaric. I've thought that many times over the last months. It is a harsh word for a doc to use, but I suspect she was trying to make a point. I also agree that ultimately, everyone has to make their own decision - as my surgeon says - you have to be at peace with the decision.

I was diagnosed in December of 14 with a very small tumor, but a very aggressive cancer. I had several positive Level I and Level II lymph nodes, and an intramammary lymph node as well. My Ki67 was 60%. At that time, I wanted a BMX, thinking that the later the stage, the more aggressive the surgery should be. I was first told LX would still be possible, then was told that UMX was the only possibility, and was satisfied with that. They switched the tx plan to neoadjuvant chemo, and I finished that about a month ago. As a result of the chemo, MRI shows that the tumor and mass have shrunk significantly, and all the nodes look clear.

I am now once again a candidate for LX; the surgeons in the practice all agree that because of the response to chemo. That's the decision I've made, knowing that I may end up with UMX if the margins aren't clean. I am okay with that, because as 614 said, you can always have more, but you can't go back. I will have rads no matter which surgery I chose, so I chose to go with less to begin with.

For me, the trauma of the initial dx, and the whirlwind of tests, appts, etc. made me think that I just wanted both breasts gone immediately, and that would take care of the problem. I think I was looking for control in an uncontrollable situation. I'm glad I had the last several months to make the decision, although that kind of patience is not in my nature!!

Barb

Rockym, thanks for your post regarding the tatoo'ed dots! It never occurred to me to just say no! What a fabulous idea! I don't want those horrific reminders on me forever! Has anyone else done this?