So, you've been diagnosed with breast cancer

A guide for the new members of the shittiest club

A year ago this week, I got the call from the breast clinic at my HMO that the second of two biopsies turned up positive for Invasive Ductal Carcinoma, the most common form of breast cancer. Very quickly, I learned two things:

• There is a lot of misunderstanding out there from people who have not had breast cancer or who haven’t had a close friend or family member with breast cancer. These people will say some frankly wackadoodle shit to you and this will go on for quite some time.

• You might be luckier than me in this regard, but while I had a great medical team, the mental health side of how my HMO handled this was a complete disaster, and since my only good friend to go through breast cancer sadly died from the disease, I had no one to talk to about my diagnosis and treatment who really got it.

So I offer this as a guide for anyone newly diagnosed. If that’s not you, and you don’t think you know anyone who will get breast cancer, for all of the pink ribbons shoved down our throats in the “race for the cure” we are still talking about 1 in 8 people with breasts. You absolutely do know more than one person who is going to get breast cancer. It might even be you.

But this is mostly for those who, like me, are the person actually facing this fucker down. We’re going to talk about some kind of catastrophic stuff here, so if you prefer your cancer talk happy clappy and “start a gratitude journal!” style, this isn’t it, and if my previous writings about cancer here are any indication some of you might not read it at all. That’s totally fine. But if even one person finds it helpful, it was worth the effort.

• You’re going to be asked approximately 100,000 times if anyone in your family had breast cancer. My answer was yes, both my grandmothers had it. But the vast majority of people with breast cancer have no family history of the disease. And factors like not having children or being overweight only raise your risk by a small percentage. The biggest risk factor for breast cancer is having breasts. Tell nosy people that and watch their faces.

• Speaking of stupid shit people will ask you: “what’s your prognosis? how long will you live? did you use antiperspirant? did you wear a bra to bed? did you take birth control? did you use HRT? did you ever put a cell phone in your bra? I heard 5G/the Covid vaccine/sugar/drinking milk/not believing in Jesus causes cancer, is that true?”

• If you, like me, got your mammograms and still got cancer, you may be wondering why they couldn’t see your cancer on those mammograms. 50% of people have dense breasts, which makes it easier for cancer to hide on a mammogram. MRIs are more accurate, but guess why you don’t get one of those every year? That’s right, they cost more money. Congrats, you might die because health insurance executives like to cut corners.

• Speaking of health insurance¹: if you don’t like your medical team, change doctors. I got absurdly lucky with mine but now I’m stuck with this insurance provider probably for life. However, some people feel more comfortable traveling to an NCI designated cancer center. If you have the most common kind of hormone positive breast cancer like me, no matter what insurance you have, your cancer will be examined by a tumor board and your treatment won’t vary much. You can still get a second opinion, but multiple cancer patients told me with my kind of cancer the second opinion at a cancer center was the same as the first at their HMO, and they had to pay out of pocket for it. If you have HER2 positive cancer or triple negative cancer, things get more complicated, and it might be more worth the cost and travel. But bottom line: you have no control over the cancer, but you have some control over who treats you.

• You may find support groups helpful. But I tried a few, and each of them had some kind of problem. One was primarily people talking about physical symptoms with almost no conversation about mental health. Another one had a “facilitator” who said “does anyone want to say anything” to 20 people on Zoom and let one person interrupt everyone over and over again which drove me ABSOLUTELY BONKERS as a teacher. Others were only for people under 45, only for people who could meet at noon on Wednesdays (let’s talk about why people assume no one with cancer has a job at some point) etc. Eventually I gave up on support groups. The downside is that I only have one friend who also has cancer. The upside is that I learned I don’t like support groups.

• You are going to go on an emotional rollercoaster like never before. If you had anxiety and depression in the past, it’s going to look like Disneyland in comparison. [TW for the next bit] If you are prone to depressive thinking, you’re going to think on occasion that it might be better to be dead than going through cancer. You might start thinking about ending your life. Should you start having thoughts like that, your oncologist can get you hooked up with psychiatry for meds, but I went through three different therapists my insurance covered before discovering they all use Cognitive Behavioral Therapy, which only works short term (surprise: this is why insurance covers CBT and not long term talk therapy). It did not help to hear that I should use affirmations and keep a gratitude journal. Eventually I started paying out of pocket for a therapist who specializes in working with people with life-threatening illnesses and has a background in social work. I can barely afford this, but it’s worth it. Lots of therapists offer sliding scale for people with cancer. It’s worth asking around.

• Some of your friends are going to desert you, mostly because they don’t know what to say or do, so they do nothing. Weirdly, this isn’t actually personal. They are worried you might die, and so they go into a kind of emotional paralysis. I would bet you may have experienced this yourself when someone you cared about got sick. “Cancer ghosting” is real, and it sucks, but it is also very clarifying. You’re going to learn who will actually show up for you when it matters. Hold on to those people. They’re the real deal.

• You get to choose who to tell, how to tell them, and when to tell them. Many of us who have cancer think of this as the inner ring versus the outer rings. In the inner rings are the people who you know can handle it or need to know for pragmatic reasons (like your boss). In the outer rings are the optional people. For example, I chose not to tell most of my co-workers for the first six months. My academic program doubled in size over the past few years, and I barely know some new colleagues. But when people got nosy and when some folks started sending out email after email about holiday parties and happy hours, I was in the worst days of chemo and got annoyed by the volume of emails², so I sent an email saying “sorry I can’t attend any holiday parties this year because I have cancer.” It might have been a little passive aggressive (okay, it was totally passive aggressive) but, again, when you’re the one with cancer you get to decide who to tell, how to tell, and when to tell.

• You will also meet a plastic surgeon even before you know much about your tumor, how many nodes are involved, or anything about treatment. That plastic surgeon will probably ask you to make a very quick decision about your boobs. It’s not a decision anyone should have to make but it will impact what kind of surgery you have, follow up surgeries, follow up treatments, etc etc. In other words, it’s personal. So it’s about what you want and are comfortable with. I chose the simplest solution (take these murderboobs away!) because I wanted to avoid complications. But there’s no right or wrong here. Remind yourself of this when they start showing you slideshows of boobs. I found this website helpful.

• If you have things that make you feel better, do those things, even if they’re trashy, “bad” for you, or distasteful to others. I watched multiple seasons of Love Island UK and 90 Day Fiancee and got really into cannabis edibles (a godsend for cancer patients) and ate nothing but carbs (my favorite chemo meal was mashed potatoes washed down with fruit punch Gatorade; my oncologist said this was fine). I got dressed up for chemo because the nurses’ compliments made my day but saw other people in chemo wearing pajamas and thought they were super smart. If you don’t feel like you’re “kicking cancer’s ass” that’s not on you. It’s because cancer treatment is horrible. Do not let anyone guilt trip you into the “shoulds.” If someone thinks everyone with cancer should read War and Peace and run marathons and eat only macrobiotics, that’s their problem, not yours.

• People will want to do things for you, but mostly not in useful ways. They’ll say “do you need anything?” and mean well, but the answer is “yes, I need not to have cancer,” and that’s probably not what they want to hear. For example, I got sick in September, which is the hottest month of the year in the Bay Area, and no less than six different people brought me soup, and I even turned down additional offers of soup. God bless these people and the soup was great (my spouse ate most of it), but it was 90 degrees outside. Consider telling people that saying “do you need anything” is actually more work for you and what you really need might just be texts, phone calls or messages just checking in. DoorDash gift cards are nice too. You don’t want to cook when you’ve got cancer. I loved every card people sent, every text just saying “I love you” or “I know this sucks,” every person who gave me the grace of letting me vent.

• For the love of Banana Jesus, do not buy a person with breast cancer any breast cancer merch! We do not want socks that say “dear cancer, you picked the wrong bitch” or a sweatshirt that says “cancer warrior” or any of that nonsense. Please google “pinkwashing.”

  

  Banana Jesus is judging you for buying cheap breast cancer merch that contributes to some of the environmental pollution that has caused cancer rates to soar.

• There are only two books and one essay about breast cancer I’ve found that talk about it in honest and unflinching ways. You may want to wait until treatment is over to read them, or they might feel appropriate now. You can read a sample online and decide for yourself. The books are The Undying by Anne Boyer and The Cancer Journals by Audre Lorde. The essay is “Welcome to Cancerland” by the late, great Barbara Ehrenreich. There are many other books about breast cancer that are full of sentimental garbage and self care nonsense. Don’t bother, and if someone gives you these books, put them in a Little Free Library. You don’t need books telling you things will be okay when that might take a long time.

• Speaking of a long time, I’m a year out from diagnosis and just went back to work full time and my first day of teaching three classes back to back kicked my ass hard. My hair is growing back but it looks like Eraserhead, I get tired very easily, and my eyes, guts and fingernails are still impacted by chemo. There is no “back to normal.” There is instead a new normal, one which is not easy. You still think about cancer every day. People want to know if you’re cured, in remission, a survivor. It’s much more ambiguous if you’re still on meds (for 5-10 years in most cases) or had a double mastectomy (because you will no longer get mammograms). You will be in a liminal place for many years to come. Some of us refer to this as Schrödinger’s cancer. We don’t know whether the cancer will return or not. We’ll never know, and we have to live in that space of not knowing.

• That liminal place, however, can be full of unexpected moments of joy, delight, and, yes, gratitude. People will tell you to be grateful and to practice gratitude but you have to get their on your own, or it’s not real. The other night I was at a minor league baseball game (I used to hate sports, who am I any more?) and they played a Mac Dre song and I just about choked up just because I was there, with people I love, in the city I love, and not dead. The end of active cancer treatment is not a happy ending. It’s a new kind of life, just with fewer tits and more medications. You can feel about that however you want. Many days life with cancer is exhausting, demoralizing, and haunting. But once in a while, it’s actually kind of great.

1. Since it’s Labor Day, true story: the union saved my life. Lecturers at Berkeley unionized a few years into my being hired, which got us health insurance. Without health insurance, I wouldn’t have had the biopsies and scans that confirmed my cancer. Here’s your freebie slogan: Unions Save Lives.

2. This semester, we got Slack. Thank God.