Numbness after a mastectomy no one warns you about [PODCAST]

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Most women lose feeling in their chest after a mastectomy, and almost no one warns them ahead of time. Emily Hansen, a patient advocate who has spent nearly two decades in health care communication working with surgeons and breast cancer survivors, joins to explain a consequence of survivorship that stays largely hidden. You will learn why loss of sensation is nearly universal after mastectomy, why nerves are among the slowest tissues in the body to recover, and why patients so often feel guilty raising it with the surgeons who saved their lives. Hansen describes the real safety risks that follow, from burns to injuries patients never feel, along with the impact on intimacy that rarely gets discussed. This episode is based on her article “Living with numbness after mastectomy: the unseen impact on survivorship,” published on KevinMD. You will come away with the specific questions every patient should ask before surgery and how the whole care team can raise this earlier.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today, we welcome Emily Hansen. She’s a patient advocate. Today’s KevinMD article is “Living with numbness after a mastectomy: the unseen impact on survivorship.” Emily, welcome to the show.

Emily Hansen: Thanks, Kevin. Great to be here.

Kevin Pho: All right, so let’s start by briefly sharing your story and then jumping into why you decided to share this article on KevinMD.

Emily Hansen: Great. Yes, I’ve worked in health care marketing and communication for almost two decades, and really one of the things I’m passionate about is trying to bridge the gap between the patient community and the health care and clinician community, because I find that there just tends to be kind of a wide divide in terms of how we communicate with each other, and I think there’s a real opportunity to help patients be better informed and ensure better decision-making and things like that.

So my work most recently over the past eight years or so has been focused on working with the surgeon community, breast cancer survivors, and patient advocates to really raise awareness around a problem that seems to be pretty hidden, and that’s really the loss of sensation after a mastectomy.

Kevin Pho: One of the things that you mentioned was that gap between the clinician community and the patient community. So during the work that you’ve done over the last eight or so years with the breast cancer community, what are some examples that you could share with us that really illustrate that gap?

Emily Hansen: Yeah. So first I would say, specific to breast cancer, that’s a heavy diagnosis. And so when women hear that, I feel like they tune everything else out, and naturally you’re kind of going into survival mode.

And so it can be hard. You’re having conversations around the breast parenchyma and what type of surgical treatment you’re going to have, if you’re going to have radiation, and anything beyond immediate surgery is kind of an afterthought. But what I’ve really learned from talking to so many women over the years is that as your likelihood of survival increases, your expectations and your capacity for understanding also increases with that.

And so I think one of the big gaps is just the terminology that we use, right? We’re using clinical terminology that laypeople, I would consider myself a layperson, don’t really understand. And so if you don’t have context for something, we’ll take sensation, for example. If you don’t know that having sensation is just really feeling normal, being able to walk around, you can tell where your body is in space, versus when you have altered sensation. An example would be if you’ve had lidocaine for a dental procedure and how different just the proprioception is and things like that. People may not know those words, but I think they can relate to those common experiences, and that’s really where we can try to do a better job at helping to prepare patients for some of the realities of daily life.

Kevin Pho: Your KevinMD article specifically talks about that. It’s titled “Living with numbness after mastectomy: the unseen impact on survivorship.” So talk more about this phenomenon, how common or uncommon is it, and what do, from your perspective being involved with that patient community, just tell us what their lived experience is like.

Emily Hansen: Yeah, that’s a great question. So I think to maybe start at the beginning, what I found from patients is that they weren’t necessarily asked questions about sensation or told in a way that would make sense to them. And they also don’t really realize the impact, like the full impact of what it means to not have sensation until you’re several months past your surgical healing, regardless if you have a breast reconstruction, which type, things like that.

So there’s a bit of a time lag for when that settles in. And then I think a lot of patients have told me that they feel guilty bringing these types of things up. They don’t want to hurt the feelings of their surgeons and care teams because, of course, they saved their lives. And so a lot of these women just really express that it’s hard to talk about, they feel guilty, and also that they feel pressure from others around them, even in their own lives, right?

People expect them to kind of move on and be done after they’ve had their breast cancer reconstruction. But they still have this sensation issue that unlike scars or radiation burns that you can visibly see, sensation is something that’s on the inside, and so it really stays under discussed. And now if we translate that to the clinician community, I think from a surgeon perspective, they’re very operational in nature in terms of understanding how to deal with the disease, remove the disease, reconstruct the breast.

And they’re thinking about how do we recreate form? How do we recreate a breast that looks OK? But we’ve come so far, even in a short period of time. Just take, for example, two or three decades, we’ve gone from radical mastectomy with no reconstruction to now having multiple options available, that it’s a really unique position that I think everyone is in to be able to start to address functional issues like sensation, and really start thinking about how do we define survivorship beyond just removal of disease, and start thinking about function and quality of life for patients.

Kevin Pho: So for patients who have abnormalities in sensation after breast surgery, this goes beyond what they feel, right? I think that in your article you wrote there are some safety concerns as well because of this. So talk more about that.

Emily Hansen: Yes. So I think a lot of people don’t appreciate the role of peripheral nerves in our body, but they’re really our first line of safety or defense against injury.

So if you think about if you were to put your hand on a hot stove, you’re going to reactively pull it away, and that’s your sensation telling you, “Hey, you need to be careful here.” We have nerves that run throughout our entire body, and if they get disrupted, if they get cut or crushed, it can really impact the ability for those signals to communicate to the brain.

And so when you have a mastectomy, which is truly an amputation of the breast, you have to surgically cut and remove the breast tissue and nerves. And so you’re taking them out, and if you don’t reconstruct them, there’s really no pathway for that to continue. And so that’s what results in numbness for people, and it can be partially across the chest to completely across their chest.

Some of those things depend on anatomy. But really, I think because patients don’t understand this and they’re not thinking about the safety, so they may have a reconstructed breast. They may look, quote unquote, “normal” on the outside. But in a recent market research study, one in four women reported having injuries or near misses to their breast due to the loss of the protective function of sensation.

So examples of that would be burns from curling irons, from cooking, not having your proprioception if you bump into doorways or even an underwire from someone’s bra can poke through their breast. They’re not going to feel those things. So they may not even notice until they undress later, they go to take a shower or something like that, that they have had an injury, which is a real safety issue for people.

Kevin Pho: So the phenomenon of numbness after breast surgery, I don’t have a good sense of how common that is. Is this something that is a universal complication or it, does it only affect a minority of cases or somewhere in between?

Emily Hansen: That’s a great question. I think the data are varied in the published literature, and I think it’s because the instruments used are also varied.

But when we just ask patients, so, in that article I do talk about a recent nationwide survey that was conducted on women that have undergone mastectomy, and 87 percent of them report losing sensation, feeling numb, not being able to feel temperature of water or the sun, feeling pressure changes and things like that in their chest.

So that’s a nearly universal impact. I think the degree of how much sensation loss people have can vary a bit, but it’s a pretty significant issue.

Kevin Pho: Now, in an ideal world, tell us how this should be addressed preoperatively. What kind of language, what kind of expectations not only should the surgeon set, but how about the other clinicians within the team, the primary care doctors, the obstetrician gynecologist? Just tell us just from your experience and from talking to all these patients, what’s the best way from the clinician side on how we can approach this?

Emily Hansen: Yeah, I think that’s a fantastic question because it’s not only the role of the surgeon to have these conversations.

And as I mentioned earlier, people are overwhelmed with a diagnosis, and so they need time. They’re obviously going to spend time with multiple clinician types. And so being able to hear about this from multiple people, whether it’s your primary care, your OB/GYN, your radiation oncologist. I think talking to people about sensory changes, letting them know, again, in simple terms, I think the dental analogy is good, or if someone’s ever had their foot fall asleep, things like that, pins and needles feelings.

And in addition to that, I think it’s also an option to connect people with other survivors. Because a lot of times these communities will communicate with each other and be able to share some of these experiences. One of the biggest challenges for someone newly diagnosed is you just don’t know what you don’t know.

And so until you have context, you’re not going to really think about asking those questions ahead of time, too.

Kevin Pho: Now from what I understand, after nerve disturbances like this and changes in sensation, there is a lot of variability in terms of when sensation comes back, if it comes back at all. It can vary from weeks to months to years. Is that your experience as well from talking to patients who have experienced this complication?

Emily Hansen: Yeah, I think the when it sets in for people can vary. I think the level of disruption to nerves also can play an impact to whether or not they feel it completely over their chest area or partially kind of on the lateral sides, a lot of people talk about.

But I think in general, nerves are some of the slowest regenerating tissues in the body, and so they do take time to regenerate. Even if you perform like an active nerve repair procedure, it’s not like you would think about a light switch turning off and on. This is really something that’s going to take time.

It can take months and even up to a couple of years for, you know, whatever level of sensation may return for that to fully return. The other component is really the mental component of sensation. So this is something that happens in our brains. And so there’s also kind of a cognitive rewiring or relearning that your brain needs to do to where you can start to recognize if you’re touching in a certain area, your brain may think that you’re touching over here on your arm, right?

Because the circuits are kind of misfiring, and there is some kind of rehabilitation therapy, retraining therapy that’s common, even in the hand space, for people to help them kind of along that journey to reincorporate what sensation is going to mean and feel like.

Kevin Pho: Now how about from the patient’s standpoint? If, like you said, they’re overwhelmed with all this information that’s coming at them, anything that they should be asking specifically as it relates to sensation? They may be listening to you certainly on this podcast. What specific questions should they be asking specifically as it relates to post-mastectomy sensation?

Emily Hansen: Yeah. I would encourage patients, number one, write things down. It is overwhelming. If you can bring someone with you to your appointments, that really helps too, just because if you’re overwhelmed you’ve got an advocate on your behalf. But I really encourage patients to try to ask practical conversations of, “Hey, is this going to impact my ability to exercise? What’s going to feel different from an intimacy standpoint?” Which could also be a really uncomfortable topic for people to discuss, and even for health care providers to discuss. They may feel under-prepared and not specialized to talk about those things. But that’s one other component that has really shined through in that market research is that almost 75 percent of women reported issues with intimacy and sex lives after this.

And so, thinking about what your life is like today pre-surgery, the activities that you do, I would encourage people to ask how are those things going to be impacted? What do I need to be careful about? So for example, even going to the beach, because you won’t have sensation most likely you’re not going to recognize if you can get sunburn. And you could end up getting deeper burns, third-degree burns, things like that. So you want to really understand what are those impacts that you need to prepare for.

Kevin Pho: We’re talking to Emily Hansen. She’s a patient advocate. Today’s KevinMD article is “Living with numbness after mastectomy: the unseen impact on survivorship.” Emily, let’s end with some take-home messages that you want to leave with the KevinMD audience.

Emily Hansen: Yeah. I would just say for anyone who’s listening, the first step is even just being aware. This is a topic that I think most people aren’t thinking about as much, and that’s whether or not you’re on the health care provider side or if you’re on the patient side.

So sometimes just understanding that this can be a challenge for people is important. I think being comfortable asking questions, from a health care provider to a patient of what’s important in their life, how sensation may impact them or not. And on the patient side, really being comfortable learning a bit more about this, how to advocate for yourself, how to understand what your options are, so that way you can make more informed decisions and really think about what’s the best treatment pathway for you.

Kevin Pho: Emily, thank you so much for sharing your perspective and insight, and thanks again for coming on the show.

Emily Hansen: Thank you.

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