What's Capsular Contracture?

Today I'm reflecting on the science related to last week's episode talking to Christina Miner about her Capsular Contracture and Breast Implant Rupture. Lot's of good resources linked below about this....

Links:

Another great podcast episode on the history of implant mis-regulation is here.

The checklist I mentioned is here: https://www.center4research.org/wp-content/uploads/2019/07/Black-Box-and-Checklist-Consent-Form-PDF.pdf

A report on Breast Implant Illness is here: https://www.center4research.org/wp-content/uploads/2021/01/Breast-Implant-Illnesses-Whats-the-Evidence.pdf

The website I mentioned for implant-associated lymphoma is here: https://justcallmeray.org/

And a short interview about Squamous Cell Cancer and implants: https://podcasts.apple.com/us/podcast/breastcancer-org-podcast/id781242172?i=1000584263441

A great advocacy group that will help you to advocate for better research: https://ourbodiesourselves.org/

Transcript:

Today's another solo episode where I'm reflecting on my last guest conversation with Christina Miner. We talked about capsular contracture in the last episode, and I just want to reflect a little bit more on the meaning of this, the implications of this, the frequency of this, and a little bit about some of the risk factors.

I realize that this is a very controversial and touchy issue. And by talking about these things, I want to remind listeners that I'm not taking a side. I don't have an opinion on whether breast implants are good or bad. I feel like it's still very gray, and it's a very personal decision, very much having to do with your tolerance for risk.

I feel like I made an intentional choice to invite my first guest on, Michaela Raes, to talk about her positive experience with implants because I do feel like I am skewed in that most of my friends in the breast cancer community are flatties and a lot of those friends have explanted it because they have become sick as a result of their breast implants.

But I don't want this podcast to be singularly about the flattie perspective and rah rah flatties. I really want it to be helpful for everyone in the breast cancer community. And I'm doing this episode in particular, not just for the brand new patient that has to decide about whether or not to get implants.

I'm doing this episode to talk about ongoing risks for my friends out there who already have implants. You need to be vigilant. You need to watch those implants over the years. And certainly you need to get them replaced when they're wearing down and breaking down in your body.

It's still the case that most of the people who get breast implants are not breast cancer survivors. About two thirds to three quarters of the folks who get breast implants are just getting augmentation. They are not cancer survivors. And so these things that I'm talking about today, whether it be capsular contracture or breast implant illness or cancer, So I'm going to read the definition from the National Center for Health Research about what capsular contracture is.

Their definition says it's one of the most common complications of breast implants. In fact, it's over 50 percent of the population of those who get breast implants that have some amount of capsular contracture. Capsular contracture is when the scar tissue capsule that forms around the implant hardens.

So it's natural for an implant to have scar tissue around it, but it's not natural or intended for that scar tissue to harden. And in some cases, the hardening of that tissue can be quite painful. And it can distort the shape of the breast, and it can make mammography more painful and less accurate.

Removing the implant and the capsule without replacing the implant is the only recommended way to guarantee that this problem is corrected. According to the National Center for Health Research. Which is a National non profit think tank and lobbying group that tries to help the FDA be more responsible in its use of or approval of medical devices in general.

It's kind of the main aim of that organization.

Now with capsular contracture, you don't always have a problem for the patient. If it's just slight hardening, it may not be something the patient ever notices or is bothered by. Uh, but I, when I go to breast cancer walks and I table for Stand Tall, AFC, to talk to folks about flat closure. A lot of times I will have women walk up to me and talk to me about how unhappy she is with her implants.

And the most common complaint is that they're rock hard. And why didn't they tell me these things were going to be rock hard? I don't like hugging people anymore. I don't like holding my children because I've got these rocks in between me and my children. What they're describing is, I now know is capsular contracture, but because we don't go back to our plastic surgeons and have ongoing conversations with them about how our breasts are feeling and how we're experiencing our breasts, we don't get told that.

And so, you know, you can go on and on and even be in a breast cancer support group and have three or four of the other women in that group say, Oh yeah, mine are really hard too. I guess that's just the way it goes. So when I'm tabling now and I hear that story, I tell women to please go back

to their plastic surgeons and ask for them to advocate for the insurance company to pay for removal of their implants and to get a Goldilocks procedure instead. You can still have a small breast with just the skin that's around your implant. with a Goldilocks procedure and most plastic surgeons are very happy to do that.

Very, very cognizant of the discomfort of capsular contracture and the fact that it's not an intended outcome. It's not something that they want for you.

So with Christina, she had an extreme case of a capsular contracture. Not only did she have lots of hardening, lots of contortion, but that thing was being eaten by her body. It was also an immune reaction. She was having multiple responses to the implant, and she experienced rupture, which is another side effect and possible risk factor in getting implants that we just don't hear about.

Even folks that are given implants, they don't get to read about or talk about the likelihood that they would have a rupture or a leak. And so I want to read the description from the National Center for Health Research about rupture and leak. When a saline implant ruptures, it usually deflates quickly.

But when a silicone gel implant ruptures, you may not notice any changes. And the rupture may not be detected by a doctor or a mammogram or an MRI or ultrasound. And MRI is recommended for silicone implants every 3 years for everyone following surgery. And every 2 years after that to check for a silent rupture.

So it's likely that after 3 or 5 years that your breast implant will rupture. And you may not know it if you have a silicone implant. These MRIs that are recommended for follow up are not usually covered by health insurance, and this is something that people really should have been told really early on.

Um, they are highly recommended to, um, just make sure that your implants are still intact and still the same shape that they should be, but they may not be paid for by your health insurance, which is a really big bummer. And silicone might migrate in to the nearby tissues such as the chest wall, lymph nodes, upper abdominal wall, and into organs such as the liver or lungs where it can't be removed.

And since migrated silicone can cause health problems, it's currently recommended that any ruptured silicone implant should be removed immediately after the rupture. And treatment of these conditions might be at your own expense, not covered by insurance, or the manufacturer's warranty, unfortunately. And when I talk to friends in the breast cancer community that have had their implants, for more than 10 years already. A lot of times they have a really nonchalant attitude about that. Oh, I'm sure it'll last 20 years. I heard somebody say that their aunt's lasted 20 years.

Maybe mine will too. I really discourage them from letting it go that long because the likelihood is that It will break down in your body and you will have some health effects from it.

So another risk of breast implantation is something that we talked about in episode 13 with my friend Anna. She had something called breast implant illness. And this is something that's really hard to quantify or even explain in an objective way since the medical community has still not come together around a definition of it.

It is. very well acknowledged by most medical professionals now as a true condition. So that's good. That's progress over about 10 to 20 years ago when it was kind of denied in the medical community. And the FDA has started to study it, which is great. They started tracking in 2008. the number of complaints that they had about breast implants and the number of complaints that they had specifically with the types of symptoms that come with breast implant illness and they found about a little over 10, 000 reports between the years of 2008 and presently, 2024, that qualify with the the relevant symptoms, which are fatigue and pain, usually mostly joint pain, skin conditions, migraines.

memory loss, and brain fog. Several studies of women with breast implants have shown that they're significantly more likely to be diagnosed with one or more of the following diseases compared to other women. All of these diseases are autoimmune diseases, so they are chronic fatigue syndrome, multiple sclerosis, Sjogren's Syndrome, which my guest in episode 15 had as a result of a drug, um, coincidentally, and systemic sclerosis or scleroderma. There are so many different accounts of how many women get breast implant illness every year and unfortunately there's not a lot of studies on it so there's not a lot of objective data.

I can't really tell you how many women are actually struggling with this. Mostly because, like my friend Anna who was in episode 13, they don't know that they're struggling with something related to breast implants so they can't go to the FDA and complain about their implants. So So many women have lingering symptoms for decades without running into anyone that knows that this set of symptoms actually is a result of your breast implant.

So we need lots more awareness, lots more education. That's why I'm talking about this issue again on this episode. Just to get it out there so that we can talk about it in our breast cancer support groups and in our breast cancer communities.

But the legitimacy of this condition is proven by the fact that removal of the implants resolves the symptoms in so many cases. The FDA said that in seven out of eight cases,

there was a relief of symptoms in the folks that did get get their implants removed. So this shows that it is a legitimate medical issue that does need to be formally acknowledged by the medical community and defined well and taught about when we're giving out breast implants, right? There's another really scary side effect of breast implants that I will not focus on in this episode because I do want to have a guest on to talk about it who has more experience than I do.

But there is a type of cancer that is believed to be associated with breast implants. And originally it was thought to be associated with the textured types of implants only, but it is still kind of being sorted out whether or not it's just that type of implant. And it is called “breast implant associated anaplastic large cell lymphoma.”

And to a smaller degree, there's another type of cancer that is thought to be associated with breast implants called “squamous cell carcinoma.” And I hope to have Raylene Hollrah on as a guest to talk about this. She is the loudest advocate out there. She was, I think, the 30th person in the U. S. to be diagnosed associated anaplastic large cell lymphoma diagnosis after implantation. She has a website called Just Call Me Ray, and it's ray, spelled R A Y, dot org, and that's where she tells her story of having been diagnosed with a second cancer because of her implants. Uh, like I said, I'll hope to have her on to talk about that sometime.

And I won't go into all of the details about this cancer risk, but it is, uh, thought to be a risk of 1 in 4, 000 patients, so very, very low risk. But, um, still being ironed out which types of implants are possibly going to cause this type of cancer and at this point, I just want to say again that it is my belief that most of the women who get breast implants are very happy with them. They don't call their breasts rock hard. They are very pleased with the outcome and they don't get any sort of disease or autoimmune disorder as a result of their breast implant.

But because these risks and possible side effects do add up to a lot of concern and worry, I think for those of us who are part of our community who have implants or who are going to pursue them, we just want to make sure you have the whole picture. That you know how to watch and monitor and what to look for.

When I went to get my tattoo on my chest after mastectomy and a delightful woman who did my tattoo art, uh, told me the story of how she had almost no breasts, kind of like I do now. And, um, she is really, really happy with her new breasts.

And she wears clothing that accentuates them and really celebrates them and in her relationship with her husband. And she couldn't be more thrilled with them. So I think for people like her and me who have had both of the experiences of Almost no breasts and large breasts. Um, it's easy to know kind of where you stand and what you feel, as a result

of that body type, but you never really know what you're missing if you haven't experienced it. And that's part of the difficulty of making the decision to get breast implants. I think, especially after breast cancer, you don't know what being flat is going to be like ahead of time until you experience it and look in the mirror afterward. So I understand why it's really hard. And it's, it's hard to be rushed into that decision as well.

I think for patients like Christina, last week's guest, it's really easy to know what's right. You know, if your breast is, you know, implant is exploding outside of your, your body and it's like, Telling you that it wants out right away. You know, it's, it's easy to get that explant and to go on to be flat, but I think for people like Anna who had to live for a dozen years with these mysterious symptoms that she had no idea were connected to her breast implant, then it's a little bit more of a sad story to look back on and to tell.

So if you'd like to read more about all of these phenomena, the rupturing, the possible cancers, the breast implant illness and capsular contracture, the website I would send you to is the one for the National Center for Health Research. Their website is www.centerforresearch.org, and it's right on the front of their page.

Um. the information about breast implants and risks. And you can go and look for their black box warning document and their checklist document. And I would recommend printing it out. So you have it handy. I had a good friend just diagnosed with breast cancer a couple of months ago, and I was able to be strong and objective and holding this in my hand while talking to her, knowing that I'm not using my bias as a guide, but Just listing out the facts for her because, unfortunately, I know that her surgeon probably doesn't have time to do that.

So, I would highly recommend going and printing out the checklist for friends of yours who are going through the decision making process or friends of yours who are suspecting that they might have a problem with their current implant. Unfortunately, the FDA is pretty slow to correct any of this.

industry sloppiness. And we don't know exactly which kind of implants cause which kind of problems. The industry has not been pushed to do enough good research on the effects of their products, unfortunately. And so we also need to really push Our Congress people to push for the FDA to regulate this stuff better so that we can feel more confident recommending that our friends do get implants when they feel the need to without being nervous about them.

And so I think that's a really important thing for those of us who are comfortable talking to Congress. People or writing to them or sending them an email. I think that would be a good use of our time around this issue as well.

The bottom line is I think some of us just have bodies that respond more strongly to foreign objects. So it's good to know these things and have conversations. Know where to point people for the resources. Be sure to let me know what you think of this. I have a new Substack newsletter that's really interactive and I have a number of threads for discussion on it So I'm excited to see your your ideas and input on this.

If you subscribe to my Substack you'll get the email updates for it, and it's just Uh, abreastcancerdiary. substack. com if you want to join. And that would be the place to respond to these kinds of kind of touchy discussions.

Next week, I will have a very personal interview with a dear friend of mine here living locally, um, to me. I've decided to do a couple of interviews with friends that I see often in my own breast cancer community who are pretty newly diagnosed and still really struggling with their diagnosis and outcomes. One is still struggling with an early cancer diagnosis, early breast cancer diagnosis, and the other one is dealing with a second cancer diagnosis.

 

I feel like I've kind of erred on the side of telling stories of victory and encouragement and coming out of the struggle with a great perspective. But my next couple of interviews are going to be a little bit more personal and raw and kind of from, uh, the midst of the struggle, I guess, and things not being resolved yet.

So I'm happy that I can tell their stories too because these are really important stories and maybe even more meaningful for those who are really struggling and coming out of the midst of change and body resolution. And hopefully you'll relate to them. If not, feel free not to listen to them. If they're a little bit too triggering for you, they won't be for everyone, but I look forward to having these very special guests that are friends of mine from my local community.

And I'll talk to you then.