Lumpectomy and Mastectomy

When clinicians are discussing surgery that is happening to the breast and the lymph nodes, there is sort of two parts of a decision being made. The first is what's going to happen in the breast tissue itself, are we going to try and remove just part of the breast around the area where we know the cancer is?

There are occasionally nipple sparing procedures that can be done and that's a whole long story about who might qualify for that, and what, and why.

Or are we going to try and remove the entire breast? And that discussion, usually centers around what do we need to do to get good margins, in other words enough margin or tissue around the cancer, to make sure that the margin is clean and doesn't contain too many cancer cells that we’re really worried that something got left behind in the breast. When we take all of the breast tissue really that we can easily get, including the nipple and areolar complex, usually.

That is referred to as a mastectomy and it's important to remember that most mastectomies do not look like the male chest wall, which I think sometimes patients think they do right. Everything is gone you just basically have a flatline or scar across the chest wall and no real residual breast tissue. Lumpectomy and partial mastectomy are terms that often get used pretty much interchangeably. The idea with a lumpectomy is that you're doing a removal of tissue around there where the cancer that is big enough to get you good margins, but you don't take the entire breast and, in that case, oftentimes what you have, is a fairly, fairly normal looking breast, usually with a scar. There may be some changes, based on radiation to the breast later on. But it may more or less look like the breast that someone has on the other side, or the breasts that they recall from before, depending on how big the lumpectomy was and how successful the healing was.

Surgeons often have a fairly good idea, based on the imaging, the mammogram, the ultrasound, maybe an MRI of how large the area of cancer is. But it's not perfect, and it is certainly very possible for a surgeon to do a lumpectomy and realize, you know there's cancer, right at the margin, or very close to the margin in a way that doesn't seem safe and they either need to go back and do a repeat excision, repeat lumpectomy or sometimes, depending on how concerning it is, or how much how much breast there is still remaining, or even the patients preferences about you know how many times they want to try and go back.

So they weighed out all my options. And I could have a lumpectomy with radiation, or I could have a single mastectomy. I could have a bilateral mastectomy.   They weren't sure about chemo yet because they wouldn't find out until afterwards, but they didn't think I was going to have to, which was great news. And we went home. And my husband I talked about it for hours. We cried, and we cried. For a while, I did the typical "Why me?" You know, “Why do I have this? How am I so unlucky to have this?” But it's not a luck factor. It just is what it is, I finally realized later. At the time, my son was 20 months old. And when I really thought about it--I had, I had talked to multiple people over the course of that weekend--and some people who had had lumpectomies, people who had had mastectomies. And I came to the decision that for me, at that time in my life, I could not have a mastectomy because of the physicality of it because my son was so young. I still wanted to be able to hold my son, cradle my son, be active with my son. And they had told me the survival rates for the lumpectomy with radiation versus the mastectomy were the same. The recurrence rates were not the same because I would still have breast, breast tissue left. But for me, that was enough, that if I was going to survive, same percentage-wise. So, I went ahead, and I had a lumpectomy.

So, from there, they presented me with my options. They would definitely recommend at least a mastectomy on the affected breast because I was smaller chested, and the tumor was pretty substantial. And they said, a lumpectomy - it would be deformed, essentially. So, you know, I was thinking, do I want single or double? And then I got my genetic test results back, and I tested positive for a CHEK2 mutation. And the way my genetic counselor described it was that, you know, it's not as damning as a BRCA mutation, but you know there's some evidence coming out that there are ties to this, combined with some breast cancer history. They would support me if I wanted to go with the double. So, that's what I did. You know, I was kind of thinking that I was only 28. So, I just didn't want to do that every-six-month thing, worry about it. Part of me was a little vain, also, you know. I didn't want one breast to get old and saggy, or if I gained or lost weight, compared to the other one. So, it was definitely, I was very happy with my choice. I don't have any regrets about doing that. But I had a double mastectomy.

When they told me I had a choice, then it was like, I wanted to do the right thing. And they did tell me that the chances of it coming back into your left breast, if you leave it, I mean, if we're constantly checking you, it’s pretty small. You know?  But I still, I think I wanted symmetry, and I wanted to feel beautiful. And I knew that they do less scans on me if they just remove them both. And, so that was another thing. You know, the idea that, I mean, and then with the implants, you think about, like are they going to still be able to see stuff with the implants in there? You know, that was a question that I had. There are so many things that you don't know, and you just have so many questions. But   so, I think there wasn't anything   medically that was, that said, you know, for sure you need to do this.   So, it just really came down to my personal feelings on it.

I felt rushed into that decision, believe it or not, because after the chemo, and even though I had that February month, I think that's the point where I felt like I had enough and I just was tired. And I kind of felt pushed into this decision, and I-, and I grappled with it a lot. But then I got to a point where I was like, it's too late.

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It was probably just, not even two weeks, before the surgery, and I told the surgeon, I'm like, "Mm, why don't we just do both"? She's like, "Well, you know, it's not." She explained to me the statistics of, you know, it doesn't jump from one breast to the next. And, you know, you don't want to have to do that if you don't really have to. And, you know, I was kind of  okay with her opinion and her explanation. But then I just felt like it was, I should have changed my mind. But then, again, I don't know what I know now, and I've actually experienced it.

What I’ve discovered with all of this, sometimes they're doing it because it's easier for them. And you really have to be careful of that. And ask for what you want and say, “this works better for me.” But, of course, at the time, you're scared and you don't know. And you’d like to trust that they know what they're doing, but there's a lot to be said for second opinions.

A breast will typically drain to one or several lymph nodes and which lymph nodes it drains to is different from person to person. So typically at the time of surgery, or before -- well actually really before they take you to surgery the surgeons have talked to patients about what kind of surgery is going to happen in the armpit or to remove the lymph nodes, and I say the armpit because, although there are lymph nodes in other areas of the body, or in other areas that drain the breast such as up in the -- in the supraclavicular area right here or right behind the breastbone called the internal mammary.

For most women in the US. They all ---- their breast cancer will be found early enough that there's no obvious clinically positive lymph node, in which case typically a Sentinel node procedure is offered where the surgeons remove the draining lymph node or lymph nodes and there's a couple of different ways that they find that and that changes over time, but usually they're removing one or a few lymph nodes and then that's going off to the pathologist who's going to look and see - do any of those contain cancer? In which case there might be a discussion about removing more. Sometimes, by the time the cancer is found in the breast it's already obvious that the cancer has traveled to at least one lymph node or more. And in that case, a discussion has to be had about potentially removing most of the lymph nodes under the armpit. And really what they do is the surgeons remove the lymph nodes by level. And so, they would have a discussion with someone about what they are going to do what they're going to take, but typically they're taking a series of lymph nodes and then that tissue goes off to the pathologist and the count and how many lymph nodes are actually involved. The more they, the more the surgeons do the more risk of side effects for the patient just in terms of the complexity of healing how it is going to feel how long, and drain might need to stand.

There are times, where -- when someone's in the or doing a sentinel node that the tissue might get sent to the pathologist and there would have been a discussion with the patient ahead of time saying hey if the pathology -- pathologist sees that there's cancer in a lymph node, we recommend that we do the axillary lymph node dissection at that time, as a way of skipping having to come back for a second surgery. Whether or not that happens is usually based on a conversation with patients and the surgeons before ---before the surgery takes place. There might also be alternatively -- we're going to try and see if we get away with a Sentinel lymph node and then a discussion after surgery in recovery and clinic where they sort of go through does axillary dissection need to happen, and then the patient has to go back to the OR with the surgeon to remove more lymph nodes. So, it could be one surgery [or] two surgeries. They might happen, both at the same time in the OR, or they might be split up depending on what's been discussed and what the patient felt comfortable with.

Chemo was pending any lymph nodes being positive. And then looking at it, they weren't anticipating any lymph nodes to be positive. So she suggested just doing a lumpectomy.  The areas that they found- she found it was a smaller area and I would be successful with just the lumpectomy.

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So we scheduled the lumpectomy, and that was August [DATE], 2017. So it was actually exactly a month after being diagnosed, and went through surgery. They removed five lymph nodes at that time.  And I had to wait approximately a week, week and a half, for pathology to find out, A: if we had clear margins, and B: if any nodes were positive. And [NAME] called me on a personal cell phone, because I was freaking out, you know, how bad is this? First we found out that she did not get clear margins. So she said, “I have bad news. I did not get clear margins. We will have to do a re-excision.” And she said she was hopeful that we, she'd be able to just do a re-excision and not have to do a mastectomy. And then it was a few days later that came back that one lymph node was positive out of the five that was removed. So that's a little bit concerning because it is left the breast. When I went back for surgery, part of me was thinking, you know, "Do I just do the mastectomy and just be done?” [NAME] said, you know, “I don't recommend it. Don't put yourself through more than what you have to, because the reoccurrence factor doesn't change much whether you have a mastectomy or just a lumpectomy.”

You know, my husband has no medical training whatsoever but turned into the best bedside nurse that anybody could ask for. You know, and to his credit the first time he ever changed my bandages, to this day, I don't know what my chest looked like. I didn't, I didn’t look at it right after surgery. It's not that I really didn't want to. It's just, I really didn't have a need to. But he has since told me that the first time that he ever changed my bandages, he had to like freeze frame his face, because it was kind of like in his gut, but he knew he couldn't let that out in his face. He didn't want me to see him do that. But he said, “You, you looked pretty rough.” I was like, “Well, I probably did.” But there's just so much that your life just becomes everything that has to do with cancer or what was the cancer. You know, it's the, as I said, cleaning out your drains, changing your bandages, not being able to take a bath the way that you want to, having limited mobility. You know, I couldn’t get my arms beyond, I mean, I couldn't stretch my arms out. This was per doctor's orders, and I couldn't pick up anything heavier than a gallon of milk, and that lasted for six weeks. And I, you know, I couldn't drive. And just, your whole life changes, and everybody's lives around you changes, because all of a sudden, the things that you were used to just hopping up and doing and not thinking anything about, you can't do anymore. We, we learned to, you know, I couldn't even reach over to get the soap to wash my hands. You know, so we learned to pull everything to the edge of the counters. Or they got down my coffee cups for me. And, you know, I mean, you just turned your house into whatever it needed to turn into. They washed my hair at the sink, because I couldn’t get in the shower.

And I think that the most impact for me was when I got up and didn't see my breasts anymore. That was the most impactful. And I didn't want to see myself in the mirror because I said, "No, not that. I am not myself anymore."

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That was the saddest for me because when you see yourself in the mirror, and you say, "Well, I don't have breasts, I don't have hair. I am not me."

Y creo que más lo impactante para mí fue cuando me levanté y ya no me vi los senos. Fue lo más impactante, y no me quería verme al espejo porque dije, “no, esto no, ya no soy yo.”

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Fue lo más triste para mí porque uno se ve en el espejo y dice, “bueno, no tengo senos, no tengo pelo. No soy yo.”

So, they did an excision along with the unilateral mastectomy. That's probably one of the things that I wish that I had done differently for many reasons. After the surgery, everything was just, the symmetry was all off, and, you know, there's ways to kind of fix that so that no one else knows, but I have to see me. And that made me uneasy every day. And every day of trying to figure out, okay. What can I wear to disguise the disproportion? Or, you know, I didn't think that it would bother me, but it did. It just, besides it just looking weird, it was uncomfortable.

So it wasn't a fall down on the ground, “Oh, my God, my breasts!” I didn't want them, anyway. I mean, I already got rid of them. So I'm not losing anything. The worst now that they were going to do was take a nipple. I mean [You know, when she does the surgery--and she was really good. She went in through another incision and went under, she did a really good job with the surgery. So, so I didn't lose anything pretty much.

One of the things that I worried about is when I would wake up after surgery do you just know? Do you just feel their absence? And that grief. I don't like grieving. I'm a chicken. I don't like feeling sad and grief stricken, and I was so worried that that's how I was going to feel. And so again, another person appeared in my life that was one of my daughter's friend's mom. She had gone through a double mastectomy as well. We were just barely acquainted, but we met at a coffee shop, and she told me what to expect. And I asked her, "What did you feel when you woke up?” I asked her that fearful question I had. “Did you just know, you felt their absence? And she goes, “You don't even notice, hon.” You don't even notice. And she was right. I didn't wake up and have this ginormous absence. You know this, I just didn't. I just was fine. It was done.