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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Second to last chemo 💁🏻♀️ what like it’s hard? #fuckcancer #stage4cancer #breastcancer
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.
Chemo
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.
Surgery
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!
Radiation
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.
Afterwards
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.
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
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
Dana Donofree, Invasive Ductal Carcinoma, HER2+, ER+ Early Stage breast cancer patient. NED since 2010. After Dana’s own experience with breast cancer in her 20’s, she took her fashion design background and experience coupled with her newfound life as a cancer patient and created AnaOno, an intimate apparel collection for those just like her. People that no longer fit traditional lingerie, and wanted and desired something beautiful that would help them feel empowered in strong in their new bodies.
I was shopping for my honeymoon when the doctor called with a cancer diagnosis.
It was supposed to be one of the most exciting days of my life. I had just moved from my fab fashion life in New York to Denver, Colorado with my boyfriend. We got engaged shortly after the move, and it was exciting to be sharing this phase of my life with someone I loved deeply. I didn’t own a single piece of clothing that fit a Mexican beach vacation, so my Mom and mother-in-law-to-be were treating me to my bridal shower gift: a shopping spree for our honeymoon. And then the phone rang.
It had been just weeks earlier when I found a lump while I was in the shower (actually checking in on a pimple that was in my armpit). It was the slightest touch of my wrist that rubbed up against the inner part of my breast that said to me, “that wasn’t there before.” So I called the doc. I was still running around like New Yorkers do, business meetings here, plane there, business meeting there…so of course I did what any young person would do and called to reschedule my appointment so I could take a few more business trips to further my career. When I called to reschedule, I was given a choice: wait four weeks, or come in the following week for an appointment with the PA instead of the doctor. I took the early appointment. To this day I am thankful for this spur-of-the-moment decision, because, well, it saved my life.
My appointment started out pretty typically. Knowing I had just seen the doctor a few weeks before, I thought, “this is more than just being cautious, this is actually extreme precaution—maybe even frivolous.” Even though I felt a little silly, I went because just months earlier my bestie and my little sister called their doctors because they had lumps in their breasts, and thought since they did it, I should too. (They were told they have dense breasts, like many young women do, and that there were no concerns, but to keep an eye on something that felt out of the ordinary.) But this lump felt “weird” to me. I had never felt something like it—it was like a pea was growing in a pod under my skin, not hard like a pimple, and the overall texture and feeling was just odd.
The PA reassured me, several times, that since I was just 27 years old, there was only a slim chance that there would be anything wrong, and that as a young woman we tend to have dense breasts, and that can feel like a lump. But in this case, due to the lump’s location and feeling, she wanted to send me for an ultrasound, which led to a mammogram, which led to a needle biopsy, which led to a call from my doctor on the eve of my bridal shower and my 28th birthday. Even though I was reassured countless times by different professionals, “don’t you worry, it’s probably nothing, you’re so young,” I did get that dreaded call that nobody ever wants to get. I had cancer.
I was only 27 years old. Suddenly I had breast cancer. Would I even be alive to get married to the man that I love? My head was spinning, my world went black…I was now a cancer patient.
My cancer, although caught early, was very aggressive. I was diagnosed with invasive ductal carcinoma, stage 1, HER2+. My options were limited and aggressive, but they would hopefully save my life.
I had a mastectomy on my infected breast, and because the likelihood of cancer returning was high, I made the very painful choice to remove my healthy breast by getting a preventive mastectomy. I also chose to undergo breast reconstruction after getting my breasts removed. My wedding was postponed for a year—I wanted to get all my treatments done in time so my fiancé and I could celebrate our new life together.
My mastectomy was tough, my treatment was tough, and I experienced many changes in my life, my body, and my mind. Cancer treatment took a huge toll, and I fought as hard as I could to get through it. After my mastectomy, my life changed again. I was in pain from the aftermath of removing my breasts and replacing them with new ones. My range of motion was limited and working out became an additional challenge. I loved lifting weights and dancing, two things that, after surgery, became more trouble than they were worth. It took months, even years, to recuperate. Coupled with the side effects from medications prescribed to me, I found myself searching for what would be normal in my life, trying to navigate both pain and fatigue but keep going every day.
That’s when I realized that cancer was more than just chemotherapy and surgery. It was going to affect many other aspects of my life. Beyond just losing my hair, gaining weight, and losing weight, cancer affected my wardrobe, too.
All I wanted was to feel like myself again: to feel strong, to feel empowered, and to feel beautiful. But wearing the clothes I formerly loved to wear was tough—nothing fit me the way it used to. And a big part of that was because I couldn’t find a bra that fit and was not uncomfortable, ill-fitting, or painful. I found myself dressing differently because I was covering the neon green straps of my sports bra in board meetings. I started to lose myself and my identity because I couldn’t express myself in the ways I was used to. No hair, no eyebrows, no breasts, and now this.
I woke up in the middle of the night after my final reconstructive surgery and realized that dressing myself every day had become depressing, and I was making depressing wardrobe choices because I couldn’t wear a bra that fit me. So I took my years of fashion design experience, pulled out my sketch pad, and started designing bras that would work for my new body.
From that, AnaOno was born. I wanted other people to know that even though cancer took our breasts, it wouldn’t take our personality, self-expression, and fashion from our lives too.
Now, almost 10 years after my mastectomy, I have been designing bras, loungewear, and swimwear for others that have had breast surgery, often related to a cancer diagnosis, or who are living with chronic pain. Intimates that help keep women confident, proud, and even sexy! Because I felt so alone, living with breast cancer as a young woman, I wanted to use my skills and talent to help make life better for others just like me. I also work as a patient advocate and have helped shine a light on many topics that are often brushed under the rug, from sex and intimacy after a cancer diagnosis, to dating without nipples, to finding confidence after reconstruction. Getting the opportunity to open the door to these tough but important conversations has been what keeps us going not only to support our community but to engage newly diagnosed patients on a level that affects all of us so intimately. I just want people to know that whether you have one breast, two breasts, new breasts or no breasts, you are never alone.
Dana Donofree, Invasive Ductal Carcinoma, HER2+, ER+ Early Stage breast cancer patient. NED since 2010. After Dana’s own experience with breast cancer in her 20’s, she took her fashion design background and experience coupled with her newfound life as a cancer patient and created AnaOno, an intimate apparel collection for those just like her. People that no longer fit traditional lingerie, and wanted and desired something beautiful that would help them feel empowered in strong in their new bodies.
Images: anaonointimates (2) / Instagram
