What’s it like to get diagnosed with breast cancer at age 28? It’s as bad as you might imagine. But there are some unique challenges associated with being diagnosed at such a young age that you might not think about. To start, most people I interacted with between finding my lump and getting diagnosed thought I was way too young to have breast cancer. They didn’t take my lump seriously, repeatedly telling me there was nothing more I needed to do. I felt a bit crazy, like I was just too obsessed with the lump being breast cancer when in reality it likely wasn’t. Having a PhD in cancer research and being told the story of my aunt’s diagnosis at age 17 only made this drive to investigate it even more intense. Even my family thought I was a bit crazy, but I could not shake my unsettled feeling. I had to keep pushing, harder than I expected I would have to.

I talked to as many medical professionals as I could that would listen to my story. And I think we can all agree that it takes a lot of courage to stand up to medical professionals. Even with my background, I often go into a doctor’s office with a list of 10 questions, ask the 3 easiest and tell myself I’ll save the rest for later (which never happens). This is true especially when the questions are deeply personal or related to reproductive health. But this time, I knew I couldn’t do that. The stakes felt too high, the consequences too scary. It’s scary and hard to advocate for yourself and not all medical professionals make it easy to speak up. It turns out, a year and a half out from being diagnosed with stage 2 breast cancer, I’m definitely not too young to have breast cancer and I don’t have any known genetic mutations that would have predisposed me for this disease. So here it is: the first crappy thing about being young with breast cancer is that getting diagnosed can be a challenge. And the scariest part is, I’ve heard so many other young women tell the exact same story as me. Weeks and months go by with the cancer growing inside you while you’re repeatedly told it’s nothing. I was fortunate that with my background, I used my knowledge to push hard and fight to get the answers I needed, but not everyone does. And really, no one should have to.

Ok so now you’re 28 and you have breast cancer. What happens next? You’re bombarded with life-altering decisions. The clock is ticking and you have to make these decisions in a matter of weeks. A huge one for me was whether to have surgery or chemo first. This decision would directly impact another big decision: having children. If I chose to do surgery first, I’d be able to squeeze in an egg harvest before starting chemo, allowing me to preserve my fertility. If I chose chemo first, I would not be able to freeze my eggs, but we would have the advantage of being able to monitor my tumor to see how responsive my tumor was to the chemo and make changes if necessary. So what this came down to was one key question - do you want to have kids? I’m not married, divorced actually. I am dating a guy, and at the time, we had been together for less than a year. I guess I always assumed I’d probably have kids but I’ve always been very career oriented so I hadn’t spent much time thinking about it yet. Most women with breast cancer have already had kids if they’re going to have them. Yet, here I was, left to make this life altering decision with no time to spare. “Hey guy who I’ve dated 10 months, assuming we get married and have kids, how many do you think you’d want? Ok great, now on to deciding chemo regimens.” That’s pretty much how it goes. And to top it off, since I’m a scientist, I felt that I had to read every study published in the last 10 years about treatment of breast cancer to feel confident in my decision. Again, back to feeling like I’m annoying my family and my doctors by going back over the stats and pro/con lists a hundred times, living in so much anxiety about this life altering decision.

“Hey guy who I’ve dated 10 months, assuming we get married and have kids, how many do you think you’d want? Ok great, now on to deciding chemo regimens.” 

So now that we’ve talked fertility, relationships, and making totally overwhelming, life-altering decisions in a matter of weeks, what else do young women with breast cancer face? Well, there’s the impact treatment makes on our careers. We don’t have long-established careers. It’s quite the opposite, actually. In fact, for most of us, we’re just getting started. I was 1.5 years in to my first job, since I spent the early half of my 20s getting my PhD. I had landed my dream job, hired my first employee, and there I was, being told I would have to miss significant chunks of time at work. I was assigned one of the most challenging and crucial projects in my group and couldn’t be there to make progress on it. The deadlines around it weren’t going to change but I couldn’t be there. So all throughout treatment, I worked hard to maintain as much of an involvement in my job as I could, often taking the first or last appointments of the day and spending all of the time in between at work. It was not that my job didn’t support my leave or my manager wouldn’t let me take the time. It was that I didn’t want cancer to get in the way of my blossoming career. Cancer was already taking my breasts, my hair, my fertility, my strength. I wasn’t going to let it take something I had worked so long and hard for. Working throughout treatment was exhausting, both mentally and physically. It drained me, but it was the one thing that kept my life feeling somewhat normal. I was happy when I was at work and could spend a few minutes forgetting about ‘cancer me.’ Was it worth it? Absolutely because I earned a promotion this year and I’m so proud of the progress we made on the project. Was it the hardest thing I’ve ever done? Absolutely.

So now that the tough decisions are done and we’ve worked really hard to maintain our lives and our careers throughout treatment, how do we feel? Mixed, very mixed. I’m relieved to be cancer free, but that came at a price. Imagine this, you are a young, single woman with a rocking body from running marathons. Your hair is thick and long and your brows are fluffy (the kind of fluffy people pay lots of money for). Enter cancer. Over the course of treatment, you lose all of your hair, your muscle tone, and your bone density (among many other things). Essentially, you aged 30 years in the span of 1 year. For me, I was ok with them telling me I had to lose my breasts. They actually offered to just take one boob and I told them to take both, without any hesitation. I didn’t want one real boob and a higher chance of recurrence. But when they told me I had to lose my hair, I couldn’t cope. I always had long hair and, like many women, I felt it was a part of my identity. I knew if I lost my hair, I’d look like a cancer patient and at the time, that seemed like the worst punishment of all. Take my breasts, my energy, my fertility, but please don’t take my looks. I know that sounds vain, but I was 28! What 28-year-old doesn’t care how they look? The idea of wearing scarves or wigs was mortifying. What would people think?

I have 1 really striking memory related to my hair loss journey. I had been feeling pretty bold as I prepared for hair loss. I buzzed one side of my head, then my whole head. I felt a bit like GI Jane. Then my hair started to fall out after a few rounds of chemo so we decided to shave it clean. My dad did it and we cried together the entire time he was doing it. I was completely torn apart inside when I looked in the mirror. It was the first time I didn’t recognize myself. It was an out of body experience, like someone else was looking back at me. My clothes had stopped fitting well. A skeleton of me was there, but that surely was not me. After that moment, I stopped looking at myself in the mirror at all. I tied scarves, but I felt it was obvious I was bald under them. My face was puffy. My nails fell off. I felt hideous. I didn’t even have the energy to try to look better. On days I did try, it was even more disappointing because I still felt ugly, and it was as if there was no hope for me at all. It wasn’t until I started finding other women with breast cancer online who were rocking bald looks that this feeling of not wanting to look like a cancer patient changed. I couldn’t change my circumstances, but I could change my attitude and approach. Being bald started to feel empowering.

On days I did try, it was even more disappointing because I still felt ugly, and it was as if there was no hope for me at all.

The hardest thing I have had to deal with as a young cancer patient? Isolation. This becomes obvious in waiting rooms. As a cancer patient, you practically live in waiting rooms (as I’m pretty sure you spend more time in them than at home), and your companions are all at least 30 years your senior. People look at you strangely and assume you’re the daughter or granddaughter. That is, until you lose your hair and then you get even more strange looks. Not long after getting diagnosed, I remember starting to feel really strongly about the way breast cancer is portrayed. Breast cancer is defined as women in pink in their 60s doing walks, smiling and laughing with their friends. I was so angry at this stereotype because first of all, it’s not happy or fun by any stretch of the imagination. And we aren’t all 60. But that’s what it felt like sitting in those waiting rooms and that’s all I knew during my diagnosis and early treatment. You feel totally alone. You feel totally isolated. I was mad at the world and everyone that was healthy. Yes, that sounds totally irrational, but it’s how I felt. I desperately needed community. I desperately needed to know if there were any other young women dealing with all of these losses that could relate to me.

There are so few of us that I couldn't let her go. I needed her in my life.

I remember one day at the cancer center I was waiting in line to check in for an appointment. I noticed another young woman in line in front of me. It was like I saw a celebrity. I got so excited and nervous. I was desperate to meet her. I watched for a few minutes, confirming she was the patient, not the daughter or granddaughter. I noticed her looking at me, too. She actually ended up speaking to me first. We became friends instantly, asking each other questions about treatment plans and reconstruction types. We parted ways and I regretted not finding a way to connect with her. I ran back over to her and asked for her number. There are so few of us that I couldn't let her go. I needed her in my life.

Young women need a voice in the breast cancer community. We need each other. I have so much life I want to live after cancer. I'm not preparing for death. I'm just getting my life started. I have so much I want to see and do and experience. Hell, I have eggs in the freezer I hope to thaw one day. But for now, I'm going to keep trying to live as a young woman, one that is not too young to have had breast cancer.

#longlivelaila

(Blog post written for and professional photos provided by the Let's Get Cancer #OffOurChests Campaign by Jaanuu x The Breasties. For more info, see www.jaanuu.com/offourchests).

Yes, you read that right. I have a message that's really important to get out there to all of the ladies who are receiving or have received breast implants. This message isn't just for breast cancer survivors. It's for everyone. Breast implants have been associated with a type of lymphoma called breast implant-associated anaplastic large cell lymphoma (BIA-ALCL), which is in the non-Hodgkin's lymphoma family. BIA-ALCL was officially designated as a disease by the World Health Organization in 2016. The FDA has received over 600 reports of BIA-ALCL since 2010 and 9 deaths. That means a woman who has just battled breast cancer could develop a new cancer from her implants.

BIA-ALCL is more strongly associated with textured implants than smooth implants. So what's the solution? It's easy! Don't get textured implants (especially where there is a perfectly reasonable alternative: smooth implants). But why would someone choose textured? They're thought to integrate better with the surrounding tissue and potentially not move as much. But that small potential benefit holds no weight compared to the risk of developing cancer. The FDA has issued a new statement after a meeting earlier this year which resulted in a letter that has been sent out to all relevant healthcare providers. The warning just focuses on raising patient awareness of the disease for all types of implants. But let's look at some numbers that are pretty convincing of the strong association between the disease and textured implants. In 2017, there were 414 reports. For 272 out of the 414, they had info on the type of surface the implant had. 242/272 were textured and 30 were smooth. That's 90% textured. 90% of the cases with known surface info were from women with textured implants. That's a pretty high percentage. So to say I'm not satisfied with the FDA just sending out a letter encouraging health care providers to inform patients of the risk associated with any implant is an understatement. I have actually been planning to write this article since the end of last year (I'm super behind on all blogging fronts). When I read a few days ago that the FDA had their meeting to discuss the topic, I thought that it was probably being widely publicized and would be resolved. I figured I probably didn’t need to write this post. But alas, I'm here writing it. Because I’m unsatisfied with their lack of emphasis on the association of BIA-ALCL with textured implants. And I think they need to start taking action towards removing these implants from the market. But none of that is happening in the US. Allergan has suspended sales of textured implants in Europe because they were not deemed as safe by French regulatory agents. So let’s get the word out and make that true in the US too. If you are considering breast implants for any reason, I highly recommend you do not choose textured implants. My smooth implants don't move around at all. And they look quite good. So if you want to know more about mine, DM me and I can give you more dets.

So what if you already have textured implants? First and foremost, you don't need to freak out. The FDA is not recommending for women to get prophylactic implant removal surgery if they have textured implants. The risk of developing BIA-ALCL is still pretty low. There's not a lot of data, but the risk is estimated at 1 in 4,000 to 1 in 30,000. The biggest early sign is swelling or fluid accumulation around the implant (known as a peri-implant seroma). So if you experience that (or any change for that matter), it is best to go see your doctor. And what happens if you get BIA-ALCL? Sometimes all you need is removal of the implant and capsule, but sometimes you also need chemo and radiation. So let's recap, a woman who just went through at least a year of multiple surgeries, chemo, and radiation may have to, in the very least, have another surgery, and at the very most, repeat the horrible evil that is chemo and radiation!

Ok, now that the gravity of the situation is apparent and we all know what to do, let's figure out why the hell this is happening. You can probably guess where I’m going next - the science! There are 2 main theories about the link between textured implants and BIA-ALCL: the method to create the textured surface and biofilm formation.

1. Textured surface process: one texturing process is called 'lost salt' and creates small silicone particles that accumulate in the capsule and lead to a chronic immune system response and then malfunction (and since lymphoma is a disease of the immune system, that's the link to cancer).

2. Biofilm: biofilm is the buildup of bacteria on a surface. Because there is more surface area on a textured implant, it can harbor more bacteria than smooth implants and the bacteria causes an enhanced immune system response. Check out a picture of biofilm buildup on implants of increasing roughness below. In one study, a research group performed pig and human studies and found more lymphocytes (the type of white blood cells that get lymphoma) and specifically T cell lymphocytes (the type of lymphocyte associated with BIA-ALCL) on textured implants compared to smooth implants.

Bacteria stained in green on implants ordered from smoothest to roughest demonstrating increasing biofilm formation with increasing roughness (Figure adapted from James, et al., referenced below).

The debate over cause is heated. Ok, heated for a science debate (like the science equivalent of a some solid soap opera drama). And I wonder if any of this debate is related to the fact that some of the studies are being sponsored by implant companies, such as Allergan. There's no evidence of this; it’s just one of my conspiracy theories. Regardless of the cause and if we can say for certain that it is the textured implants, it seems like a safe bet to avoid textured implants altogether.

So in addition to this story hitting home since I'm a survivor and a scientist that has read the facts, there's a personal component for me. I want you to officially meet my kickass, original breastie, Jenna. Jenna and I went to middle and highschool together. Fun fact, she was my brother's first girlfriend (I think I've got the timing right - Jenna and Jill, you can weigh in!). Point is, we go way back. Jenna is the type of person that’s always so much fun to be around. She is the caring, thoughtful wife and mom of a beautiful little girl. This breastie will stand up for her friends and what she believes in and go to bat in an instant if needed. She was diagnosed with breast cancer almost exactly one year before me. And right after I was diagnosed, Jenna was the only friend I could talk to. I was so upset at everyone who was healthy and didn't have cancer and she was there for me. Just knowing she was my age and had gotten through it was incredibly helpful for me. So when Jenna told me she was having implant issues, my heart immediately sunk. Hearing her story made me so fired up to get the word out about this horrible issue so I've asked Jenna to share her story with all of you.

Message from Jenna:

In March of 2017, at the age of 27, I was diagnosed with stage 2 breast cancer. My oncology

team immediately started me on a difficult chemo regimen. Then I had a double mastectomy, which was followed by radiation. When going over my options for reconstruction I knew that I wanted to have implants put in so that it would limit the amount of surgeries I would have to go through versus going the route of a flap reconstruction which would require multiple surgeries. My surgeon informed me that he would do his absolute best to put in the implants right away so that I would not have to have a second surgery but it would be very difficult. I was pleasantly surprised to wake up from my mastectomy with my new implants in. For over a year, I never had any issues.

In September of 2018 I noticed swelling in my right breast. This seemingly happened over night and although it wasn’t particularly painful, I was immediately scared. Being that I was more than a year out from surgery, I knew something was not right. I called my doctor and after going over my symptoms he asked me to come in. He quickly requested blood tests and an MRI. All of the initial blood work came back negative but the MRI showed a large amount of fluid behind my implant. A few days later, a needle aspiration was performed. They removed over 120 cc’s of fluid out of my breast and sent it off for testing. A couple of weeks later, while still waiting on the test results, the swelling in my right breast came back. I went back for a follow-up appointment, and it was not until then that I learned about textured implants. I knew that I had gel implants and what size they were but I was not aware that they were textured or that new studies have shown that these textured implants can cause lymphoma and that the symptoms I was having were the same as the early signs of the implant-associated lymphoma. Imagine my shock and surprise when my surgeon informed me about this. Thankfully, my initial tests for lymphoma came back negative. After going over my options, I decided to remove the textured implants and have them replaced with non‐textured. This was the last thing I wanted. It was what I had been trying to avoid all along: another surgery. During surgery, the fluid was once again removed and sent for testing. I recently learned that the fluid was negative for lymphoma.

Our friend group that goes all the way back to middle school

Although I am absolutely thrilled to learn I am not one of the cases of lymphoma caused by textured implants, the thought that it was even a possibility was absolutely terrifying. I keep trying to go back over my conversation with my doctor in my initial appointments and as far as I can remember, we never once talked about this being a concern. I trust my doctor more than anything but the thought of having an implant in me that could have caused a secondary cancer is just not okay. I feel that I can say with confidence that any breast cancer patient (or any woman really) would not want that risk. I just can’t understand why this isn’t being talked about more. Why are the doctors not making a bigger deal about this? If I had known about the risk from the very beginning I would never have chosen the textured implants to begin with. After everything I have been through, I want to do everything possible to avoid any further issues or complications.

---

Message from your favorite survivor scientist:

So to recap, if you are getting reconstructed or augmented, avoid textured implants. Ask your surgeon about only using smooth implants. If you already have textured implants, keep an eye on them. Issues are uncommon but they might cause you some trouble. Ultimately, these implants should be banned. Plastic surgeons need to warn patients not only about the risk of the BIA-ALCL from all implants, but also about the specific association between textured implants and the disease. The FDA needs to call for more research and independent studies to be performed that are not sponsored by implant companies. And lastly, breasties need to share this information with other breasties to make sure no one chooses textured implants. Let's get the word out so no other breasties have to deal with a second unnecessary cancer.

Read the FDA's recent release here.

REFERENCES:

Hammond, D. “Chronic Biofilm Infection in Breast Implants Is Associated with an Increased T-Cell Lymphocytic Infiltrate: Implications for Breast Implant-Associated Lymphoma.” Letters. Plast Reconstr Surg. 2015. 135(6): 1057e-1058e.

Hu, H, et al. “Chronic Biofilm Infection in Breast Implants is Associated with an Increased T-Cell Lymphocyte Infiltrate: Implications for Breast Implant-Associated Lymphoma.” Plast Reconstr Surg. 2015. 135(2): 319-29.

James, G, et al. “Bacterial Adhesion and Biofilm Formation on Textured Breast Implant Shell Materials.” Aesth Plast Surg. 2018. [Epub ahead of print].

Webb, L, et al. “Textured Breast Implants: A Closer Look at the Surface Debris Under the Microscope.” Plastic Surgery. 2017. 25(3): 179-183.

Guest blogger: Jenna Baskin (@jenna.baskin on Instagram)

#breastcancer #texturedimplants #breastimplants

My goal every day is to eat a healthy, balanced diet that’s full of veggies and fruits of all of the different colors (#eattherainbow). When I was going through treatment and my parents were staying with me, they’d put on daytime television every day. And one day, Kristi Funk was on Megyn Kelly talking about foods that fight breast cancer. Both Megyn Kelly and Kristi Funk are now controversial people (Megyn for her comments and Kristi for her questionable science / stats) so ignore that portion of it. The point is, she talked about a smoothie she drinks every day to fend of breast cancer. I loved this idea so I looked up the recipe and that’s where my smoothie started. She had some weird, fad-esque stuff in it that I chose not to purchase. I just stuck to the ingredients I know are good for me. Then I came across Kathy Mydlach Bero, whose story of going from stage IV inflammatory breast cancer to no evidence of disease (NED) with non-traditional treatments got me super interested in how she did it. What I found was simple and something I was already doing: she eats lots of organic fruits and veggies and makes sure to eat the rainbow every day. So I incorporated a few more things into my smoothie based on her must-eats list. I also talked with some nutritionists and friends in the breast cancer world, as well as my health nut family members, and made some modifications from their recommendations too. So it has evolved some over the course of the last year. My copy is hand-written and taped up on my wall in my kitchen right next to my blender which makes it easy to follow (and on days when I was feeling too sick to make it, friends and family could make it for me). In terms of volume, it makes enough for me to split it evenly between 3 days. It has a LOT of ingredients and can be annoying to make but since it makes so much, I only have to do it twice per week (I will admit I usually take that 7th day off).

OG smoothie recipe on my kitchen wall

So what does it do for me? First and foremost, it makes me feel more energized. If I’m feeling fatigued or even like I may be starting to get a little sick, it wipes that out. I haven’t had 1 cold since I started drinking this smoothie, which is incredible given I had low white blood cell counts for so much of chemo. Also, I love knowing everything anti-cancer I want to eat in a single day is in this smoothie and I never have to worry about getting it through meals. It alleviates some of my stress about eating well and makes me feel like I’m kicking cancer’s ass every time I drink it. If you’re counting your colors eating the rainbow every day, it checks off red, yellow, light green, dark green, and blue. So all you have left to eat are orange, white, and brown (which are super easy colors). I’ll share more on how I track my colors in an upcoming post! Nothing is powder that may have sneaky ingredients or artificial fillers or preservatives. It’s all stuff we all know is good for us. So basically this smoothie predominantly a bunch of good fruits and veggies. And with all the sugars from the fruits (and cacao nibs), you don’t need to add sugar to sweeten it. This isn’t a nasty hold-your-nose health drink either. It actually tastes good.

Food science is such a tricky road to navigate because frankly it’s so hard to study the individual impacts of a single ingredient in our complex bodies in true, controlled studies with large sample sizes. And animal studies just don’t cut it because our bodies don’t act the same way mice do. So I am not going to make any claims about curative factors of these foods. I base my decisions for eating on tried and true ingredients and eating strategies.

Ingredients (all organic):

The must-haves

1.5 cups almond, cashew, or dairy milk*

1 banana

1 tbsp ground flax

1 tbsp cacao nibs

1 tbsp chia seeds

2 dried dates

1 teaspoon (about 1 inch shaved nib) of fresh turmeric root, grated (Whole Foods has these, substitute with ½ tsp dry turmeric)

1 teaspoon (about 1 inch shaved nib) of fresh ginger, grated (substitute with ½ tsp dry ginger)

½ tsp cinnamon

½ tsp black pepper

1 green apple

2 stalks celery

2 packed cups spinach or kale (I usually rotate every batch)

½ lemon squeezed

2 cups berries (equal mix of raspberries, blackberries, and blueberries)

1 mug of green tea (do this first: microwave water for 1 minute, add green tea bag and let steep until the end, then dump in - I usually chill with a ice cube or 2 so you’re not adding hot liquid into your smoothie)

The nice-to-haves

3-4 fresh mint leaves

1 inch diameter bundle wheatgrass

Instructions:

Add all ingredients to a blender and blend together. My blender is filled to the very max after adding all this stuff (which is why I usually add the green tea at the end based on space - and just drink whatever amount of green tea doesn’t fit). I usually blend on high for 2 cycles on my blender to really liquefy everything (Cuisinart SPB600, 48 oz). I split this into 3 days-worth so it’s about 16 oz per day. It tastes better cold so you can refrigerate it before you drink, or just drink directly after blending. Also, feel free to add in any other fruit you have on hand or that you really like. I’ve tried adding mango and strawberries and both were a nice addition!

When I'm traveling on a road trip, I make a batch to bring with me if I can. If I'm flying, I just bring with me a few of the powders I have from yoursuper.com. They make organic powder blends of different ingredients and I add them to milk. It's nowhere near as powerful as the smoothie, but they give me that green+berry boost I want in my day.

*I was always into non-dairy milks until we started suppressing my estrogen and now I use organic cow milk to help keep up my bone density.

Let me know if you try it out and what you think!

Cheers!

#smoothie #smoothierecipe #eatorganic #organic #anticancer #breastcancer