As A Cancer Survivor, Here’s What I Wish I Knew About Cancer Treatment

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

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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.

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.

 

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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

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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