Treatments for Implant-Associated Anaplastic Large-Cell Lymphoma

This podcast is made possible by the generous support of the Center for Restorative Breast Surgery in New Orleans. 

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here’s your host, Breastcancer.org Senior Editor, Jamie DePolo.

Jamie DePolo: Hello, as always, thanks for listening. Our guest today is Dr. Sarosh Zafar, a board-certified microsurgeon in plastic and reconstructive surgery and general surgery at the Center for Restorative Breast Surgery in New Orleans. She specializes in the most advanced methods of breast reconstruction, complex reconstruction, and microsurgery. She joins us today to talk about treatments for breast-implant-associated anaplastic large-cell lymphoma and how a woman selects the right surgical options for her unique situation. 

Dr. Zafar, welcome to the podcast.

Dr. Sarosh Zafar: Thank you so much. Thank you for having me, Jamie. I’m very happy to be here, very happy to answer, I think some really important questions, about a topic that is very important but also can be very confusing for patients. So, thanks for having me.

Jamie DePolo: Absolutely. Thank you for answering these questions and giving us all more information. Before we get into the treatments, I was hoping you could briefly explain to us what implant-associated anaplastic large-cell lymphoma -- which is a mouthful -- what it is, and then what the current thinking is on the causes because I know as more cases have come out and as the FDA has been tracking this, there’s been, I guess, additional information put out on it. So, that at first it was we don’t know, then it was, we’re pretty sure it’s textured implants, so, if you could just get us…give us the latest information. 

Dr. Sarosh Zafar: Sure. So, BIA-ALCL just like you said, stands for breast implant-associated anaplastic large-cell lymphoma. What it really is, is a lymphoma in the tissue around a breast implant that is caused by what we think is chronic inflammation. It’s important to know, like I said, that this is a disease process or a lymphoma of lymph cells, not actually of the breast cells in your tissue. We believe that it’s due to chronic inflammation, and there are two main theories that exist for why this can develop in patients.

The first theory is that the texturing on the outside of breast implants can cause a chronic inflammation. The chronic inflammation is caused by a special type of texturing on the outside of breast implants, and that chronic inflammation can make a specific type of cell in the lymph tissue called a T-cell, multiply out of control, which cells multiplying out of control is the basis of how cancer develops. And we believe that this probably only happens in some patients who have DNA or genetics that are susceptible to that happening.

The second theory is that bacteria around the texturing tend to stick around more because of the texturing and can create what’s called a biofilm or a filmy substance, and that substance can lead to inflammation, which can then again make your T-cells multiply out of control and create a cancer. 

So, those are the two main theories for how it develops.

Jamie DePolo: Okay, and it sounds like the thinking in both theories is still that women with textured implants, that’s where the risk is. The smooth implants are not linked to this. 

Dr. Sarosh Zafar: That’s correct. There has only been one case where it’s possible that a smooth implant could have created this ALCL, but the data behind that is unclear because we don’t know if that patient had any sort of textured implant before that smooth implant that they had. But in general, we do believe that this is related to textured implants only.

Jamie DePolo: Okay. Thank you. Now, my understanding also is that surgery to remove the implant, which I believe is also called explant surgery, is the primary treatment for this lymphoma. Is that correct?

Dr. Sarosh Zafar: Yes, that’s correct. Surgery, including removing the implant and the capsule around it, is definitely the primary treatment for this surgery and the National Comprehensive Cancer Network, or the NCCN, has guidelines for how to treat ALCL and those are the main treatment modalities. In some patients with advanced disease there may or may not be a benefit to some chemotherapy and/or for some radiation, but that is in advanced disease only, and that’s a decision that really has to be made with the whole team, a whole multidisciplinary team approach of medical oncologist, surgical oncologist, your plastic surgeon, radiation oncologist as well. 

Jamie DePolo: Okay. Now, I’d like to talk specifically about capsulectomy, which is the procedure to remove the scar tissue, the capsule that develops around an implant. And my understanding, too, is that scar tissue, that capsule, is where the anaplastic large-cell lymphoma is most likely to develop. And also my understanding, there are three types of capsulectomies: partial, total, and en bloc. And from what I’ve read and from some of the patient advocates I’ve talked to, there seems to be a little bit of controversy or discussion around these types of capsulectomies and which is best, so -- this is a long question, I apologize. Could you explain the differences between those types of capsulectomies and how decisions are made on which...which type is best for which person?

Dr. Sarosh Zafar: Sure. Like you said, the three different types…and I like to start with sort of taking the most to taking the least amount of capsule when I think about it and when I talk to patients about it. 

So, the first type in my mind is an en bloc capsulectomy. There’s also something called a total or complete capsulectomy, and also something called a partial capsulectomy.

So, an en bloc capsulectomy is when the plastic surgeon removes the capsule with the implant inside, in one unit, and so, that is the ideal situation. At the same time, sometimes for technical reasons or to prevent damage to a patient, instead of removing the capsule with the implant inside, the plastic surgeon will make an opening in the capsule and remove the implant first and then go back and remove the entire capsule.

From a cancer standpoint, both, in theory, are equivalent and both are the correct thing to do for the patient. The decision whether it should be an en bloc or a total is really something that’s made in the operating room based on each patient’s specific anatomy and based on each patient’s specific capsule.

So, some of these capsules are very thick and are very easy to remove from surrounding tissue, but some of the capsule or some parts of the capsule can be very thin and very filmy and if you try to remove them with the implant it can cause pain, bleeding, nerve damage, and in extreme situations, you know, inadvertently entering into the chest cavity, which is obviously something that we never want to do in plastic surgery. 

So, sometimes it’s safer for a patient and will cause less damage if they have a total capsulectomy instead of an en bloc. So, both of those in my mind are equivalent, very good quality cancer-safe surgeries to do for ALCL.

What is very different from those two is a partial capsulectomy. So, a partial capsulectomy is when some of the capsule, but not all of the capsule, is removed. In that case you may still have some ALCL that remains within the patient, and obviously from a cancer standpoint that’s not acceptable. The situations where that might happen would be situations where it would be very dangerous to remove all of the capsule for the reasons that I said before, undue pain, bleeding, entering into the chest cavity, nerve damage. And so, really, if you have a diagnosis of ALCL, your entire capsule should be removed.

The situation where maybe a partial capsulectomy I could see happening would be if the chance that you have ALCL is extremely, extremely low, then sometimes I think a plastic surgeon may decide in the operating room to do a partial capsulectomy for the safety of the patient, knowing that the risk that they have ALCL is close to zero, or very minimal. 

Jamie DePolo: Okay, and I do want to ask, sorry to interrupt. So, that would be say, somebody who has implants for whatever reason, but then decides they’d like them removed and it’s not because they’re having symptoms of anaplastic large-cell lymphoma, it could be they just don’t want their implants any more. So, in that case it sounds like a partial capsulectomy could be safe depending on as you said, the thickness of the capsule?

Dr. Sarosh Zafar: That’s absolutely correct. Absolutely. That’s exactly correct.

Jamie DePolo: Okay, and do we know why? I guess I’m curious from a sort of a body mechanics standpoint, why some capsules are thick and why some are thin? Is there…do we know is that just how a person’s anatomy and how the body works?

Dr. Sarosh Zafar: Exactly. It’s usually just specific to that patient or specific to why that patient had a thickening of their capsule, and so, sometimes thickening of the capsule can happen from an infection, from bleeding, an inflammatory process, a whole variety of reasons can cause thickening of the capsule around an implant.

A lot of times the capsule that is near breast tissue itself will be thicker than the capsule that is sitting on top of or below your pectoralis major muscle, or capsule that is sitting on your chest wall where your ribs are. And so, sometimes parts of the capsule can be much thicker than other parts just based on different mechanisms for why capsules can become thick, and also based on what type of tissue that capsule is sitting against. 

Jamie DePolo: Okay. Interesting. And I have to ask this, too, because it sounds like it’s the exact opposite of what I would expect. I would think that if you’re removing something, a thinner capsule would be easier to remove than a thick capsule, but it doesn’t sound like that’s the case. Could you explain that a little bit for us?

Dr. Sarosh Zafar: Sure. A thin capsule is a little bit harder sometimes to remove because the junction between something that’s thin and filmy, and the tissue either above or below it that it’s connected to, if there isn’t a good sort of what we call surgical plane, which just means any kind of separation between those two layers, if there isn’t a good separation then it can become difficult to remove something that’s very thin. Because as soon as you pull on it, or in surgery what we call as soon as you retract it, it can tear very easily and that makes it more difficult to remove it.

So, capsules that are a bit thicker, you can usually manipulate thicker tissue a little bit more easily in surgery and so, for that reason it can become easier to remove things that are thicker actually. So, that’s a great question.

Jamie DePolo: Okay, thank you. That was because I was like, oh, okay. Interesting. 

Dr. Sarosh Zafar: Yeah.

Jamie DePolo: Okay. So, I know there are several questions we don’t really have all the answers to regarding this type of lymphoma but I’m hoping you can sort of fill us in on what the latest thinking is. So, if a woman has two implants and has symptoms of anaplastic large-cell lymphoma on just one side, is the thinking that both implants should be removed, or is it considered okay to leave one and remove the other?

Dr. Sarosh Zafar: That’s a great question. Even though the chance of having ALCL on both sides is extremely low, probably about 5% or less than 5%, I think most women would feel more comfortable after getting the diagnosis and after developing something like this, to just go ahead and remove both implants, as long as you know you’re healthy enough and you understand the risks of what comes along with having an implant in a capsule removed. 

So, even though the risk is relatively low to have bilateral disease, I think most women would opt for wanting both out, mostly for peace of mind. And I think as long as you could go to a plastic surgeon who is experienced in doing breast-related surgery, the risk is relatively low to have the other side removed. And so, I personally, you know, if this happened to me or my mom or my sister, I personally would probably have both removed.

Jamie DePolo: Okay, thank you. And then if a woman has had an implant removed because of anaplastic large-cell lymphoma, can she have another implant put in? Is that considered safe or is that not recommended? And if it’s not recommended, then what are her reconstruction options after that?

Dr. Sarosh Zafar: Because the smooth implants are not…we don’t believe that they really will cause ALCL, we do think that it is safe to have a smooth implant placed to replace the textured implant that you had, but at the same time I would think that most patients who experience this would not necessarily want an implant placed again. And so, then your options become using some of your body’s own tissue, or if you’ve had this for aesthetic reasons, possibly forgoing having an implant. Even if you’ve had this for reconstructive reasons and this happened, some women I think would choose to forego having any implant at all.

We do have very good options for using your own tissue for most women, including tissue from your lower abdomen, tissue from your upper buttocks area, tissue from the upper back area, or a combination of those things, which especially for patients who are having this for reconstructive reasons are all very good alternatives to having implant reconstruction. 

Most women will have enough tissue to have at least one of those options available for them, but I do think it takes going to a plastic surgeon who’s experienced in doing those types of surgeries, for you to get the best answer about what the best reconstruction is going to be for you. And really, ultimately, the decision for what’s going to be the best of are you is a conversation between you and your plastic surgeon based on your specific body, based on your experience, based on a whole host of things which should be really a conversation that everyone should be able to have with their plastic surgeon 

I really encourage women to try to find a plastic surgeon who specializes in this type of work, and if you as a patient feel like you’re not getting the information that you need, or you feel like you’re not being offered several options that may work for you, I definitely encourage getting second opinions, third opinions. 

Probably one of the most important things is feeling comfortable with the plastic surgeon who you’ll be working with because that peace of mind and that feeling of okay, I’ve been educated, I’ve made a good decision, I’m comfortable with the plastic surgeon I’m working with, will help you more than anything else, in my opinion, in having a successful reconstruction after having gone through a very traumatizing experience.

Jamie DePolo: Absolutely. I did want to ask a follow-up question about not having an implant or not having reconstruction with your own tissue after this. I believe there’s a type of surgery called aesthetic flat closure, so that there aren’t any dog ears or any sort of lumps of skin left over. And if somebody has had an implant say for a while, decides to have it removed or have both of them removed because of anaplastic large-cell lymphoma, is doing that type of surgery, that aesthetic flat closure, is that possible? Are there usually good outcomes with that? Or is because the skin say has been stretched because of the implant, is that a problem? Are there any risks going that route?

Dr. Sarosh Zafar: I would say that it would depend on…every patient would have a different answer to that question because the size of your implant, how long your implant has been in, how much it stretched out your skin, is going to be different for every single patient. Some women are going to be very large-breasted and have a small implant who’ve had it for aesthetic reasons, some women will have had their entire breast replaced by an implant for reconstructive reasons. So, it would have to be determined on a case-by-case basis with your plastic surgeon how aesthetic flat closure would look on your particular body.

The only downside I would say to having that done is that if you have that done and you later change your mind and say, you know, I really do want breast reconstruction, or I really do want a breast mound, then having removed extra skin that you have could possibly mean that you would need to replace that skin to be able to get the volume or size of breast mound that you would like. So, I would say that that’s probably the biggest downside to aesthetic flat closure.

But for some women that’s the right thing to do, and again, that’s something that is a conversation that you would have to have with your plastic surgeon to be able to figure out what’s going to be the right thing for you.

Jamie DePolo: Okay. Thank you. And finally, I want to ask about finding a surgeon. If somebody decides to have implants removed, have explant surgery, I’m assuming that it’s a plastic surgeon that would be doing that. Is then that plastic surgeon the same person that somebody would use then for reconstruction with their own tissue, aesthetic flat closure? Or is it really there are surgeons that specialize in the explant and then other surgeons that would specialize in the re-reconstruction, if that’s the correct term?

Dr. Sarosh Zafar: That’s a great question and I think probably one of the most difficult ones to answer because every plastic surgeon’s experience, and every plastic surgeon’s practice is different. I think the key things to know are that you should always be looking for someone who does a lot of this type of work as a patient. You know, for example, if you have a bad shoulder injury or a very rare shoulder injury, most patients would feel most comfortable going to someone who does a lot of shoulder surgery or a lot of complicated shoulder surgery. 

I think that this is not any different from that. So I encourage patients to try to find someone who does a high volume of breast surgery, preferably, honestly, someone who does a high volume of breast reconstruction surgery because even if you had an implant placed for cosmetic reasons, once it’s removed with its capsule, figuring out how to make your breasts look great again is more of a reconstruction than it is a simple straight forward, first-time aesthetic surgery. 

And so, I encourage women to find someone who does a large volume of breast reconstruction surgery if they go through this process. I also encourage them to work with someone who is affiliated, or can at least figure out how to coordinate their care with a high-quality, multidisciplinary team because I think having a medical oncologist involved, possibly a radiation oncologist involved, possibly even a breast cancer surgeon involved as well, can be very important. So, I definitely encourage women to try to find someone who does a lot of this work and is very experienced in this work. 

Now, unfortunately, throughout the country in different parts of the country and the world, there’s limited access to plastic surgeons who do a very high volume of breast reconstruction, but anything that you can do to try to find out, you know, someone who does a large volume of this I think will be best for you.

Jamie DePolo: Okay, thank you, and just to clarify, from your experience and perspective, are there plastic surgeons that specialize say, just in explant and then others that specialize just in the reconstruction, or is it really all together? If you do explant you’re probably doing reconstruction as well?

Dr. Sarosh Zafar: I think it actually works the other way. 

Jamie DePolo: Oh, okay. 

Dr. Sarosh Zafar: I think that if you are experienced in reconstruction and advanced reconstruction, then doing the explant is very straightforward. I think if you do the explant but you don’t necessarily offer any options for using your own tissue as a reconstruction, I think that’s where as a patient you may fall short. So, I would actually look for someone who does a high volume of the breast reconstruction, and for anyone who does a high volume of breast reconstruction, removing the implant with the entire capsule is relatively straightforward. 

Jamie DePolo: Okay. Okay. Wonderful. Dr. Zafar, thank you so much. This has been so helpful and enlightening and I really appreciate your insights.

Dr. Sarosh Zafar: Oh, well, thank you so much for your time. I hope this was helpful to all the listeners out there. And thank you so much for educating patients or their loved ones. That’s the best thing that we can do to fight such a terrible, terrible disease process so, thank you so much.