It’s Breast Cancer Awareness month. You see all the little pink ribbons around and you probably think, “Hey, that’s nice, now I’m aware.” And then one day you’re minding your own business, and then out of no where it happens: you feel a lump. Or your doctor finds a lump. Or your mammogram does. And suddenly you’re thrust in this horrible, awful, scary cancer world and if you Google ANY of it, all you’ll find are terrifying statistics that tell you how likely you are to die and nothing about the experience or what actually happens. At least, this was my experience when I found out I had cancer exactly one year ago. It’s even worse to Google if you get super lucky like me and end up with the worst possible diagnosis (it’s stage 4 triple negative). Everything I Googled told me that based on my diagnosis, I should be dead within the year, which is super lovely and uplifting in the scariest time of your life. But my one year was last month, and I’m still cancer-free, so cancer can suck it.
Since I went through this with very limited information except the stats not being in my favor, I’ve written a few articles about what’s happened to me. But I wanted to do another one to just kind of sum it all up for you, so if you DO get The Diagnosis, you’ll know what to expect, how, when, and why. And let me tell you, the first rule is Cancer Club is we don’t look at statistics. Because you are not a statistic and your situation is not the same as anyone else’s. So here are the things I wish I knew about cancer treatment.
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The First Steps
When you find a lump, the first few things that happen are ultrasounds (or mammograms), and if it looks suspicious or causes pain, biopsies. Not to freak you out, but as a cautionary tale, they actually were not initially going to biopsy mine because they thought it was clearly a cyst, soooooo maybe just play it safe and get any lump drained and checked out anyway. From there, they will try to stage the cancer based on the biopsy. This will determine further treatment. These appointments and biopsies take forever to schedule and get results, so this whole process can take weeks. Mine took about a month. In this diagnostic phase, they will also do scans: MRIs (sees one area, like the breast), CTs (sees the torso), or PET scans (sees the entire body) to better see the cancer and whether it spread. They’re also checking if the cancer is hormone-related. There are three hormones that can fuel your breast cancer—Estrogen, Progesterone, or HER2. If the cancer isn’t positive for any of these hormones, that’s when they call you triple negative (like me). If it is hormone positive, they can treat it with a hormone blocker—without access to the hormone, the cancer cells will die off. This is why triple negative is harder to treat.
When it comes to breast cancer stages, the stage actually means how far it’s spread throughout your body. You can’t actually die from breast cancer in the breast—it has to spread somewhere else, or metastasize. So, Stage 0 means there are cells that can turn into cancer but they’ve done nothing—it’s actually considered “precancer”. This is best-case scenario. Stages 1 and 2 are early breast cancer, meaning, yes, those cells are cancerous BUT they are just in this spot. Stage 3 means your lump is BIG (I believe it’s over 3cm), or your cancer is very aggressive, or it’s spread to your lymph nodes (so on its way out of the breast, which is bad). It is rare to die from stages 0-3—the survival rate for stages 0, 1, and 2 are 90-99%, while the rate for 3 is 66-98%. But when you get to stage 4, that means the cancer is now metastatic, and outside of the breast. Once you hit stage 4, the cancer has spread from its origin to other areas of the body. Even if you only have it in one other spot (mine went to my liver), it can show up now anywhere else in your body and at any time. This is why stage 4 is not considered curable, because you never know if it will come back. But the further away from the initial cancer you get, the safer you are from recurrence.
With an early stage, slow-growing breast cancer, most patients will skip chemo and go straight to surgery. But for the rest of us, chemo can look very different depending on the cancer. They actually couldn’t stage my cancer from the biopsies, so I had a lumpectomy (which I’ll talk about below) before I started chemo. I then froze my eggs because certain chemos can make you infertile. I took about three weeks to freeze my eggs, and then I started AC-TC (Adriamycin, Cytoxan, Taxol, and Carboplatin) chemos. I did eight weeks of AC (four sessions total, one every two weeks), and then 12 weeks of TC (one every week). This whole process took like, five and a half months. Some people only do it for six weeks, it’s just depending on diagnosis.
I shaved my head before I started chemo, which I highly recommend doing because it actually makes your hair HURT before it falls out! All my hair fell out exactly three days after my second session of AC. My eyebrows and eyelashes lasted until about halfway through my TC treatments (damn you, Taxol!). Taxol also made my nails turn black and start lifting, but all that grew out and healed pretty quickly once I finished it. I was super sick, it sucked, but it was manageable and I mostly ate a lot of pho and watched Netflix.
Other side effects I got were: hand-foot syndrome, where your hands and feet swell, turn red, and then all the skin starts falling off (lovely!), bleeding from literally every orifice (and the nurses don’t even panic about this BTW), vision changes from extreme dry eye, blood/metal taste for weeks (that’s Adriamycin, aka the Red Devil), bone pain (that would be the Neulasta injections they gave me to up my white blood cell count), menopause (complete with hot flashes), and pretty much every other side effect possible. But it works! So it was worth it. I also started Keytruda (immune therapy) about halfway through my chemo. My hair started growing back while I was still on chemo, but it took until maybe three months after for all of my bald spots to go away and it to come back completely. Eyebrows and eyelashes only took maybe two months after finishing chemo.
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These photos were taken two days apart. Wigs and makeup make such a difference! I’m halfway through chemo now, with 10 weeks left. Only one out of four tumors still remains! And a lot of other treatment to follow. But I can’t wait until I no longer look like an egg. 😂 🥚🥚🥚 #eggscellent #fuckcancer #cancerous #stage4cancer
Chemo often happens before surgery, because if there is a risk the cancer got into your bloodstream, it could be growing anywhere in your body. Cancer spreads microscopically first, so a scan wouldn’t pick it up until a mass appears. So, they treat it systemically first to kill all of it at once. I had a lumpectomy first because they did not realize my cancer was bad enough to warrant the chemo. A lumpectomy is just where they cut out the tumor and maybe take some lymph nodes to biopsy. It’s a fast surgery, and I was only in pain for maybe the first week, and then I had to take it easy on that side for about a month. That arm/side felt a bit tight for a few months after, but it bounced back pretty quickly.
After chemo, I had a double mastectomy, which I wish I had done way before I got cancer when I found out I was BRCA2+, and then this would have never happened to me to begin with. A double mastectomy is where they remove both breasts completely (and sometimes lymph nodes), including the breast tissue in your upper chest and into your armpits. The double mastectomy hurts (I mean… duh) but I really only had nerve pain under my breasts for the first week. That was pretty painful, then just discomfort from the drains for the week I had them, then I was stuck with little useless T-rex arms for about three weeks. I still could wash my own hair, but I could not work out, drive, or lift anything for six weeks, and then I was good to go. It was way easier than I imagined it and not too different from the lumpectomy. Also, usually at stage 4, you can’t even GET surgery, because it’s never safe to go off of chemo (since the cancer could come back at any time). Being triple negative, I was able to get my double mastectomy only because of immune therapy, which kills cancer cells but doesn’t ruin your body’s ability to heal the way chemo does. This was life changing for me as a stage 4 patient!
Here is the difference between radiation and chemo. As we talked about, chemo treats the entire body for cancer. Radiation is only to prevent recurrence and only where you’ve already had cancer, so it’s localized treatment. So I only had radiation on my right breast (not the left!), and the accompanying lymph nodes (up my neck, and into my armpit). I did 31 sessions, every day except weekends (so five days a week), totaling six weeks. Weeks 1-4 were a breeze. You go, you lie topless on a table with your arms pinned up, they zap you, the whole thing takes about 15 minutes. It doesn’t even hurt.
But then, the last two weeks, my skin finally became aware that we were doing something bad to it, and became very burnt and then started to, well, fall off. This part hurt, but the burn creams they can prescribe (shout-out to Silvadene) work extremely well. So, I suggest getting the burn creams immediately, and don’t wait until your skin starts splitting to say something. The radiation basically melted my temporary implant that I have until I can get reconstruction surgery, but it looks okay in clothes, and I’d rather NOT die of cancer, so I’ll take it. Also? They tattoo four little dots around your breast to line up to the machine. They look like freckles, but they are actual tattoos. Then they draw all over you with Sharpie anyway.
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Ummmm I knew about the permanent tattoos you get with radiation but no one told me about the beautiful artwork I get to come home with. 🤨 only 29 to go! #cancerbaby #cancerpatient #fuckcancer #metastaticbreastcancer #stillalivebitches #triplenegativebreastcancer #cancersurvivor #yesitsawig
So… that whole thing was a year of treatment for me, and now here I am, just having finished radiation last Thursday, expected to now get on with my life. Being stage 4, treatment never technically ends, so I still get my immune therapy infusions of Keytruda every three weeks, and will do that for at least a couple years. I get my reconstruction surgery in six months.
Even though my active treatment is suddenly over, the mental toll that cancer takes and a lot of physical side effects are still with me. My eyes are kind of yellow, I’ve still got radiation burns, I’m absolutely exhausted all the time, my nails still have ridges from my chemo treatments, I gained like 25 lbs during chemo (FUN FACT: most breast cancer patients actually gain weight during chemo instead of lose weight! No one cares or tells you this!), and my hair is growing in kind of like a fluffy helmet. I have a PET scan, brain MRI, and liver MRI in a couple weeks to check for recurrence.
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Today is a little weird. It’s my one year Cancerversary of when I found my first lump and my entire life changed. This is a big deal for any cancer patient, but it’s a little different for me. Stage 4 metastatic triple negative breast cancer is one of the worst diagnoses you can get. It is terminal and so difficult to treat that most patients are given a year to live. I have stage 4 metastatic triple negative breast cancer. And today is my one year. I am still cancer-free. And only 29 years old. The only reason I can say that is because of my amazing doctors at @cedarssinai , particularly @drbreastcancer for getting me immune therapy (Keytruda) in addition to every possible treatment. My insurance wouldn’t even cover Keytruda because they assumed I’d just die anyway. (Lovely.) I literally sit there and get stabbed, poisoned, shanked, sliced, mutilated, zapped, with only an elementary understanding of what is happening because I majored in animation. This is why research is so important. 100% of stage 4 breast cancer patients die from it. 30% of earlier stage BC becomes stage 4. And yet, only 2% of BC research is for stage 4. Not everyone has access to this specialized treatment and so I hope you consider donating to breast cancer research because we need it. I am BRCA2+ with no history of breast cancer in my family because it was passed through the men. Get tested for BRCA. Get preventative mastectomies if you’re positive or it runs in your family. Check your boobs. Support research. Today, I am one year out. I am so grateful for my burns from my 22 radiation sessions (9 more to go!) and my scars because they mean it’s less likely to come back. Every year you get away from the initial disease, the safer you are from recurrence. I hope to make it to 2 yrs. My odds are much better at 5. I will be almost cured by 10. I won’t feel safe from it until I hit 100, but at least my robot boobs won’t sag. Thank you for your support always. Don’t give up on mets patients. Don’t give up on me. 💕 #Stage4NeedsMore #tnbc #stage4cancer #triplenegativebreastcancer @tnbc_thrivers @susangkomen @metavivor
I mostly feel really lucky that I was one of the patients with this diagnosis that had a doctor say, “Here are all the things we’re going to do to fix it”, and not “Hi, you have one year to live,” like so many that came before me. But I do feel weird and like this last year has been a complete mind f*ck, or maybe it didn’t even really happen, and I’m in some weird play about cancer, but it didn’t actually happen to me. I’m not sure how long it’ll take for me to feel like a person again, or even like myself. So no matter what stage you are, or how much treatment you went through, cancer is a total bitch. Be kind to yourself and let yourself heal, mentally and physically. And ask for help if you need it. I’m always happy to talk to anyone about this or answer other questions, just let me know in the comments or hit me up on social media!
Images: hollydoesart / Instagram
I wrote this while I was on day three of my chemo flu haze, so this is authentic info. (Keep in mind that I am now finished, so this doesn’t apply anymore.) But on day three, I was like, “Holy F*CK, do I feel like sh*t. My hair is falling out all over my keyboard. I look like death warmed up and somehow feel worse. This f*cking blows.” However, I am so grateful that chemo exists, and that I was able to get it, because it was the only thing strong enough to kill cancer at this level (stage four breast cancer with mets, what up). At the time of writing this, I was two sessions down, only 14 left to go. And I was only half-joking when I asked one of my best friends who brought me pho one night to kill me, so I think I handled it pretty well.
Since I’ve been dealt the most bullsh*t of hands, I figured the least I can do is give you some insight in case this happens to you or your best friend. One in eight women get breast cancer, just FYI, and October is Breast Cancer Awareness Month. If you’re forced to undergo the incredible poison that is chemo, there are some ways that you can prepare.
Shave Your Head Beforehand
There are some chemos that don’t cause a ton of hair loss, but most of them do. Chemo works by killing off fast-producing cells in the body. The fastest producing cells are cancer. But so are the ones in the lining of your mouth, your stomach (which is why you get sick), and your hair follicles (which is why your hair falls out). The sickness and the hair loss just really show you, hey, it’s working! Your doctor will let you know the likeliness of hair loss based on your medication. I was on the AC-TC track (very common for aggressive breast cancer) and my doctor basically was like, “You’re going to be a baldie; go get your eyebrows microbladed.”
Since I knew there was no shot in hell of keeping my hair, I got my eyebrows tatted on, bought some false eyelashes, and had a head shaving party the night before I started chemo. I also bought a ton of fun wigs. My friends came with me to the hair salon and we all shaved my head together. It was actually really fun to do something so chaotic, and made me feel more in control of the situation. I did a buzz cut because you don’t want to risk cutting your head (your skin doesn’t heal well on chemo). I’m so glad I did it, because after my second session, my little buzzed hairs fell out all over the place—and it would have been totally traumatic with my long hair coming out like this. Also, my head felt sore since the first day I started chemo, due to the weight of the hair in the follicle (even with the little hair I had), so it’s more reason to just chop it off on your terms.
You can watch me shave my head here:
You Actually Want A Chemo Port
I had never even heard of a chemo port until I met with my oncologist, and the idea of it was horrifying. Basically, they surgically insert a sort of button under your skin that is connected to the main vein of your heart. So when you get chemo, IVs, or blood drawn, they stick the needle right into the port instead of going after the veins in your arms. They do this because some chemos (like mine) will actually collapse all of your arm veins. But yeah, go ahead and pour it directly in my heart, sounds good, guys! This really freaked me out until I got it done. My port then became my favorite thing in the entire world.
After freezing my eggs, my veins were absolutely shot from the near-daily blood draws, to the point that I was in tears every time I got an IV. The port made this so easy: they couldn’t miss, so there was no more digging in my veins and no pain other than the small needle puncture. Best of all, I couldn’t feel any of the chemo/saline/whatever they were pumping into my body. A blood draw took, like, two seconds (and they took a lot of blood at the oncology office). If you aren’t getting the really strong chemo, but are bad with needles, have small veins, etc., I would highly recommend actually requesting a port. When you’re done with treatment, they’ll just take it out.
My surgeon was really good, so you can barely see my port in this picture. This was three days after I got it in, so the incision was fresh and looks way better now. You can see it sticking out through the skin, but barely, and it doesn’t hurt at all. The port is the round circle below the incision:
You’ll have tiny incisions near the neck where they connect the port to the veins (gross). I also discovered that I didn’t like wig caps (too tight!) and preferred wraparound headbands for my wigs. Your skin will become really sensitive on chemo, and I preferred not to have the indents from the caps.
You’re Going To Be Sick AF
I’m not going to lie, I was so F*CKING sick. Like, I was mostly lying on the floor in the fetal position. They will give you anti-nausea drugs, and while they do work, you’re still not going to feel okay. They told me the third day after chemo was the worst, but for me, it was the same day. Everyone is different, though. I would get my chemo every other Tuesday, so I knew that, Tuesday through Saturday, I would feel like I’d had the worst flu of my entire life and that I’d also been run over by a semi-truck… and then the truck backed up, just to make sure it really got me good.
But then, come Sunday, I’d be more like could-maybe-go-to-class-if-it-was-a-test-day sick. And by Monday/Tuesday of my off week, I almost felt human. Not amazing, like I still would have major body aches and was completely exhausted, but I could at least do laundry, watch Netflix, and go to dinner with a friend. Once you know how you react, it’s easier, so you can plan ahead, and let your friends/family know when you need their help.
Getting Chemo Is Easy
I thought the experience of getting chemo would be awful—I pictured tiny, dark, crowded hallways like in the movies, with all the sick and old people lined up in chairs with their IV bags. I’m sure some places are this depressing, but mine was not—it felt like a first-class cabin. There were these cute little pods with lots of light, comfortable chairs, big windows, and seating for friends. And there was WiFi! Plus, with my chemo port, I couldn’t feel anything while getting the chemo. (The sickness didn’t hit until a few hours later.) So chemo was like social hour for me, with my friends and family hanging out for a few hours. Like happy hour, but except instead of alcohol, it was just a bunch of poison. The only bad part was that while I couldn’t feel the meds, I could taste them. (They tasted like blood and pennies, and that taste reappeared for the next week after starting the meds.)
Food Is Not Your Friend
As mentioned above, chemo causes a very metallic, very revolting blood-and-pennies taste that keeps reappearing. This makes it hard to eat or drink because everything tastes like it—even water. It’s kind of like having food poisoning—you know exactly which food poisoned you and never want to have it again. Or like how you can’t drink screwdrivers after that one time in college. Your brain knows this taste made you sick, and you get nauseous every time it comes back. So it’s like having horrible food poisoning, and then being forced to eat the same thing that made you sick every meal. You just openly reject it.
So here’s my advice: take the nausea meds before you get sick (they work better that way), don’t eat anything with strong flavor or that you really like the first few days of chemo (it will be ruined), stock up on very bland meals ahead of time (grocery store chicken soup, saltines, bagels), and buy every water flavoring product you can find to mask the chemo taste. I also found that I really liked pho during chemo, and it gives you extra hydration since it’s so hard to drink water. But, basically, the chemo diet is whatever you can keep down, so do what you’ve got to do.
I hope this answered some of your questions about chemo, but if you have any questions about my cancer journey or if there are more articles you’d like to see, please let me know in the comments. I’m a very open person, and I wish I had had more resources for this process that weren’t just about statistics. Because let me tell you—at stage four, they’re really f*cking bad, so reading them is not helpful. Also, CHECK YOUR F*CKING BOOBS. Mine are consistently trying to off me.
But don’t worry, guys. I’m a pretty tough bitch.
Me to my boobs:
(Because after chemo ended, they got chopped the f*ck out of me via double mastectomy.)
Instagram: Shutterstock.com; Giphy (2); hollydoesart (2)
Hi, remember when I wrote an article about finding a lump in my breast? Remember how I was like, “oh they said it was fine, it’s a less than 1% chance of being cancer?” Remember how all the signs pointed to it not being cancer? …Do you see where I’m going with this?
Not to freak you guys out, but I got that cyst drained and it turned out to be f*cking cancer. I’m now a f*cking cancer patient. If you learn anything from this, it’s get weird sh*t on your body checked out immediately. I just found out (today, actually), it’s much worse than expected, and I’ll be starting chemo immediately and then getting a double mastectomy and later radiation. I’m not joking. I’ve already had surgery to get the tumor out (5.5 cm, btw, which is bigger than a tennis ball). So, I’ll live, thank God, which is the most important thing. But I’m about to spend the next year doing basically nothing but having cancer. And I’m only 28. Now that I’m about to go through this sh*tty, draining, miserable process, since breast cancer affects 1 in 8 women, here’s what I wish I knew about actually being diagnosed with breast cancer.
It Takes Ages To Get Results
I found my lump over a month ago at this point, and I just got it finally cut out last week. In that time, it grew from the size of a golf ball to bigger than a tennis ball. And it hurt! I couldn’t sleep, like that’s basically my entire breast. This is why it’s important to go to the doctor the second you find anything abnormal: biopsies take at least a week each to get results in, and you’ll have many biopsies. If you wait, you could be growing cancer the entire time. This is what happened to me. I got into my regular OB-GYN the next morning after finding my lump. She had me go to a breast cancer center for a better ultrasound. It took a week to get that appointment. Then they drained my cyst and sent it to biopsy because it was abnormal. Another week for results. Then I had to get a core biopsy at a cancer surgeon. Almost another week to get in there. Then we waited for those results for a week. Then I had to schedule my surgery, but first I needed blood work, cardiac clearance (I have heart issues too, I’m basically an old, fragile lady), an MRI, and to get dye injected into my tumor for my lymph node biopsy. So go to the doctor right now if you have anything wrong at all, because it takes FOREVER to get some real answers or solutions.
Treatment Takes Forever
Do you like your job? Too bad, because cancer will make you too debilitated to do anything. Breast surgery restricts your arm usage (see below), you can’t do repetitive movements afterwards (hi, drawing and writing and typing for me), and chemo and radiation both make you too sick to drive or function or really do any work. Awesome. So. Be prepared if you get The Diagnosis that you’re going to have to come up with a backup plan for a while while you take a year for treatment. I had no idea that chemo took six months. Or that a double mastectomy and reconstruction is actually 3 surgeries, not just one, like getting implants is. That makes it a roughly three-month process, minimum. My doctor literally told me to clear my schedule for a year. It sucks, but what’s the alternative? “Guess I’ll just die?” Not really the way I wanted to go.
Chemo Makes You Infertile
Hi, did you know this? Because I did NOT. But to be fair, everyone I know who’s had chemo is well past childbearing years, so I guess it never came up. But *fun facts* about women. We’re born with all the eggs we’re ever going to have. So like, if you shoot your body full of poison, it’s also going to mess those eggs up. I literally told my doctor, like if I didn’t already have cancer, these treatments seem like they’d definitely give me cancer. But because of this, I am now about to see a fertility specialist and freeze my eggs before I begin chemo. I don’t even like kids or think I want them, but I’m not ready to make a decision on it yet. The cancer fun just never stops!
You’ll Have Useless T-Rex Arms
THIS is the thing that I found absolutely nowhere on all of the internet. You cannot move your arms well after breast surgery. You can’t raise them above your head. You just have these little useless T-Rex arms that can’t reach anything and hurt to move. For the lumpectomy, it’s two weeks of T-Rex arm on whatever side your tumor was on. For a double mastectomy, it’s both arms for at least a month. Here are all the things I can’t do with only having one sad T-Rex arm: wash my hair easily, put my hair up at all, pluck my eyebrows, put my dishes away, reach my tall cabinets, water my plants, put on a regular T-shirt without buttons, and the list keeps going. You also can only lift a max of five pounds, which is literally nothing. It’s a weird problem I didn’t previously consider.
They Will Tattoo Your Nipples Back On
When I was first told I had cancer, I hyper-fixated on the nipple issue. I don’t know why. I think just the thought of my nipples being cut off against my will was so invasive, I couldn’t comprehend it. I wasn’t even that concerned about the cancer at first—like, I just wanted to know, what happens if they can’t save my nipples? I guess it was easier to deal with that problem than face the horrible cancer diagnosis. But my surgeon showed me pictures, and it turns out, if you have to have your nipples removed, they can tattoo nipples on that look exactly the same. You can’t even tell. They can even make them out of other tissue from your body. I thought they’d look like horrible painted-on cartoon nipples, but no, you’d never know. So. That doesn’t exactly solve any problems, but at least if you have to have them, know that this is an option. Some people even replace their nipples with awesome tattoos, or don’t bother at all. You do you.
You’ll Need A LOT Of Help
I hate admitting defeat. I hate asking for help. I like to do everything myself. But with breast cancer, that is no longer an option. You’ll need rides to almost every appointment, particularly surgery, radiation, and chemo. You’ll even want moral support for biopsies and the subsequent results. You won’t be able to eat, shower, get dressed, or do anything by yourself. So, be nice to your friends because you never know when you’ll have to ask them to help you put on your squashy surgical bra with the nine tiny clasps. I’m super grateful that my friends have stepped up and are amazing, taking me to all my appointments and basically dropping everything in their own lives. Plus, you’ll need drinking buddies to cope in between treatments.
So, if you’re going through this, please know that so many other people are too, including me, and while it sucks, we will get through it. Hopefully this gives you some insight into what you’ll experience so you can be better prepared. Hey, it could always be worse, right?
Images: Ladislav Bona / Unsplash; Giphy (6)
It really was my fault for being so optimistic. I went to bed early, at 10pm, and didn’t even take any anti-anxiety or sleeping pills. I suffer from horrible insomnia, but I was like, “you know what? I’m not super stressed right now. I think I’m going to read for a bit and fall asleep early.” So, of course, this the exact moment when I rolled over and felt a sharp pain my chest. I went to feel the spot that hurt and I realized that I somehow had a hard, f*cking golf-ball sized mass in my breast. Out of nowhere.
This would be scary for anyone, but thanks to doing 23andMe earlier this year, I found out that I have the BRCA gene mutation. This gives me a 70% chance of developing breast cancer in my lifetime (and my doctor told me it’s more like 85%). It’s what Angelina Jolie has and what made her decide to get a preventative double mastectomy. I’m also predisposed to BRCA because I’m 65% Ashkenazi Jewish, which gives me a 1 in 40 chance of having it. Average people who are not Ashkenazi only have a 1 in 800 chance of BRCA. In a totally unfair twist, my mom is 99.7% Ashkenazi and does not have BRCA but was probably a carrier. In the middle of the night, this means I am 100% certain I have cancer.
I immediately began prodding at my mass and then the other breast to compare. Nope, the other one was fine, and this was definitely not normal. It’s cancer, it’s for sure cancer. So I started obsessively Googling and WebMDing breast cancer, breast lump, etc. for the entire night until my doctor’s office opened at 9am. The craziest part of it was that I took a shower maybe six hours beforehand where I washed and moisturized my entire body, and would have definitely felt an extremely painful hard mass in my chest. I mean, I wasn’t like, doing a breast exam, or really looking for anything, but this thing was huge and it hurt. I didn’t even know something like this could develop so quickly. In my panicked internet searching, everything kept saying a hard mass is a tumor and a soft mass is fine. Mine was hard, definitely hard. But then I’d roll over and try to sleep and five minutes later be like, “but IS it hard? It can’t be hard. No, it’s still hard.” I ended up with some very sore breasts (since I kept poking at them both to compare) and no answers. The complete lack of helpful information is what really freaked me out. We’re all told to check our breasts for lumps regularly, but no one tells you what to do/what happens if you find something.
I called my doctor literally at 9:01am after having not slept and I swear to God, that stupid lump got even bigger. It’s normally really hard to get into my doctor, taking at least a month to get an appointment, so I prepared what I needed to say ahead of time to convince the evil desk minion to get me in NOW. The second she answered the phone, it came out like this: “Hi-IhaveBRCA-andmydoctorsaid-it’sanemergencyifIfindsomething-andIFOUNDSOMETHING-IHAVEALUMPONMYBREAST-ANDIHAVEBRCA-INEEDTOSEEHERIMMEDIATELY”. I also had three other arguments prepared, but she just said, “Of course, come in at 11.” I guess “lump” is the magic appointment word.
I was sitting next to pregnant women for the 30 minutes as I waited to see the doctor. They were laughing and having an enthusiastic conversation about pregnancy and I wanted to tell them to shut the f*ck up because I probably have cancer, but I didn’t. I got in and the nurse asked why I was there. I actually have a slew of medical issues and I normally am able to kind of detach and find the humor in it, but this time I actually teared up when I had to explain to her that I had this massive lump. Then I apologized to her for bumming her out. She didn’t know what to say to me and left quickly.
Thankfully, my doctor is awesome, and she came in like, “What are you doing here, I just saw you and you were fine?” Referring to my May annual exam where I definitely did not have any lumps. I told her “I have a lump, I have BRCA, therefore I have cancer.” She’s very cool and never panics, which is everything you need in a doctor, so she rolled her eyes at me and said, “You don’t have cancer, let me see it.” She felt it, though, and then said, “Uh, what the F*CK is that?” To which I burst out laughing because that is not very reassuring, but it was kind of funny because I could tell she thought I was being dramatic (me? Never!) and NO, that’s a BIG-ASS lump.
She was able to do an ultrasound on my breast, and here’s what I learned. It’s full of liquid, meaning it’s likely a cyst and has a 99% chance of being noncancerous. The “hard” vs. “soft” lump debate is bullsh*t, mine is technically soft but it obviously feels hard, so that’s not a good way to do a DIY cancer diagnosis. Also, even if it is a hard mass, there’s an 80% chance that it’s still not cancer, so really the texture of it is meaningless. If you find anything weird, you need to just go to your doctor. My doctor only had an abdomen ultrasound, so she’s making me get a more in-depth ultrasound that will get in/up/around my lump to know for sure it’s a cyst and before she’ll drain it (ew and also upsetting). And my appointment isn’t until Thursday. So I’m just like, living with this weird, painful breast lump for the next week, but at least it’s probably not cancer, right?
My doctor also told me that the fact my lump was so painful and grew so quickly are signs that it isn’t cancerous. It grew so fast because it just started filling with liquid. Most cancerous tumors aren’t even painful, which is surprising and kinda scary. She couldn’t tell me why this happened or why it’s so huge. (I’m just lucky, I guess.) But apparently cysts are super common, they’re just usually way smaller and left alone. They only drain cysts when they’re massive and causing pain (like mine).
I also learned that the BRCA statistic is mostly for when you’re older. It’s still unlikely to get breast cancer at such a young age (I’m 28), but it can happen, so it’s best to be vigilant and come in for every little weird breast thing (even if you don’t have BRCA). I also asked her about my risk because I found out recently that my great-grandmother had breast cancer at 90 years old but she didn’t die from it. My doctor said that lineage that far and at that age, that’s no longer considered genetic cancer. It has to be a first or second, like your mom or your grandma, to be considered genetic. Also, at 90 years old, your body is going to break down in one way or another. So while my BRCA mutation sucks, at least breast cancer doesn’t exactly run in my family.
Finally, she told me that even if it was cancerous, most people fully recover. If it’s only in the breast, you have a 99% chance of living. This is why it’s so important to do your breast exams and check out any weird thing you find. When I first found the lump, before I appointed myself as an honorary doctor and diagnosed myself with cancer, I had a moment where I was like, “it’s probably fine, I don’t want to be over-dramatic and rush to the doctor over nothing. I probably won’t even be able to get an appointment.” But I learned that it’s so important to go for any weird thing, although you don’t need to jump to conclusions and keep yourself up at night with stress if you can help it.
If you just found a lump and are freaking out, here’s what you need to know: it’s probably nothing to worry about, if it’s painful it’s likely a cyst, hard vs. soft is meaningless, but you definitely need to see your doctor. Offices should be able to get you an emergency appointment that day, BRCA doesn’t automatically mean it’s cancer, you’ll probably need additional tests, even if it is cancer you’ll be fine, and whatever you do, do not f*cking Google it because you will not find anything reassuring. I promise you, I checked the entire internet.
Hopefully this will help you out if you’re ever in this position, and maybe some poor soul obsessively Googling breast cancer in the middle of the night will now find this article and be able to calm down. Giving yourself an MD after doing some internet research does not help anyone. And please, remember to do your breast exams, annual appointments, and mammograms if you’re at that age. Things can really change over night.
Images: Mitchell Orr / Unsplash; Giphy