Fucking Cancer

How Komen Must Change to Get My Support, Part 1

Posted on by Beth Caldwell

Here I go, you guys. It’s time I explained in detail what’s wrong with Susan G Komen For The Cure, and what they’d need to do differently to get me to support them. This will be a series of posts, because I want to write comprehensively about each issue I’m raising. I’m ready for the angry responses from Komen supports, and from metsters who think I don’t go far enough. And I hope I’ll see responses from anyone who sees errors in the facts–I pledge to change anything that people find a documented source that contradicts what I’ve written. Alrighty, let’s get started: today’s post is about the Komen-driven narrative that trivializes breast cancer.

I’ve said many times that the narrative of our existing breast cancer awareness treats a breast cancer like a sorority. The hazing is treatment, and once that’s done, you get to join the sorority and attend its parties that feature pink feather boas and dance music and dogs wearing bras, and your life goes back to being just as awesome as it was before cancer, or maybe even better, because now you’re in the sorority. And no breast cancer organization has done more to promote this narrative than Komen. Just look at their marketing materials and their Twitter and Facebook feeds. 

A problem with this narrative is that it excludes many people who get breast cancer. For starters, there’s men. Yes, men get breast cancer–not as often as women, but they do, and they die from it just like we do. It’s extremely rare to see men with breast cancer in any Komen materials. In addition, until very recently, metastatic breast cancer, which is what killed Susan Komen, was only minimally included in Komen’s materials. I acknowledge that they have made some strides in this area over the past year–kudos to them for featuring my friend Mandi Hudson of Darn Good Lemonade, for example–and yet, the metastatic experience is still too often drowned out by the sea of sorority party photos. Women and men with metastatic disease stay in treatment/hazing for their entire lives, which are most often tragically too short; we don’t get to join the sorority party.

And even for those women whose cancer treatment DOES match with the no-recurrence narrative, the picture of everything being awesome once treatment is over may not be their experience at all. Take my friend Natasha from Strings of Clarity, for example. She had Stage I cancer, so she should be living the pink dream now, right? Wrong. She’s dealing with serious psychological and emotional effects from her treatment and from the experience of facing her own mortality at age 37. The “you just get over it and move on” thing is the exact opposite of her experience, and she’s not the only one.

Which brings up another difficulty with the Komen narrative: that breast cancer is about sexy fun, which is obviousy false. There’s nothing sexy about having a breast cut off, and there’s nothing fun about chemotherapy. Ignoring the reality of cancer treatment and the physical and psychological damage it leaves in its wake does not help people with breast cancer. And hiding that reality behind pink bras trivializes it. The narrative has led many to believe that breast cancer is an easy cancer, one that nobody dies of anymore, one that doesn’t come with lasting scars. The sense that breast cancer is no big deal harms people with breast cancer because it allows vital resources to spent on pink parties instead of on desperately needed research into better treatments.

I have a lot more to say about Komen and that desperately needed research, but for now I’m going to pause this conversation here. I welcome your thoughts on the issue of the narrative of trivialization in the comments.

All In The Family

Posted on by Beth Caldwell

Guess what, you guys? My mom got diagnosed with breast cancer. No, that’s not some kind of sick joke. I know I have a dark sense of humor, but not that dark. Although apparently the universe’s sense of humor IS that dark. Remember how I had genetic testing done and I was negative for ALL the gazillion genetic mutations linked to cancer that they tested me for? Uh huh. We’re actually just that unlucky in my family, and cancer is just that big of an asshole. You can’t even make this shit up.

So far, her cancer looks to be stage 2, no lymph involvement. Notice I didn’t say “only stage 2.” Because ALL CANCER FUCKING SUCKS. It’s not like chemo is less horrible when your tumor is smaller. I will say, though, that as someone whose mother died of metastatic melanoma, and whose daughter will die of metastatic breast cancer, and whose brother died of bladder cancer, I mean, you can imagine how freaked out my mom is, and my dad, and me, and my sister, and her sister. We all know what cancer looks like: it looks Not Good.

Still, one of the few silver linings to having a daughter who’s got terminal cancer…shit, I can’t even pretend like this is a silver lining, that’s absurd. One of the “well, at least this tiny part of it is marginally less awful” things about getting cancer when your daughter already has terminal cancer is that your daughter knows exactly what to do, and who to call. Which is why I’d like to take a moment now to write about my oncologist, and his staff. You guys, I’ve talked about him before and said how awesome he is, and if you follow me on Twitter, you’ll see me using the hashtag #bestdocever when I talk about him. All that praise is probably embarassing to him, but it will pale in comparison to the bragging about him that I’m about to do. Sorry/not sorry, #bestdocever.

When my mom told me she’d found a lump and they’d done a biopsy on it, I immediately texted my oncologist (yes, we text–what, you don’t text with your oncologist? You probably don’t hang out on the weekends with yours and his wife either, do you? Yeah, that’s a shame. Cough cough #bestdocever) and told him what was up and asked if he’d squeeze her in for an appointment if the biopsy came back positive. And of course he said he would. Then he texted to ask if she ended up needing a breast surgeon, who I’d want her to see, and I told him I’d want her to see the one who did my mastectomy, because I really liked her, and he said the scheduling would be tricky (it can be hard to get initial appointments quickly with her) but he’d use his influence to make it happen.

A few days later when the biopsy results came in, I called my oncologist’s office, told them the situation, and his awesome receptionist…hold on, because seriously, that word doesn’t even begin to explain what she does. She figures out billing questions, makes sure scans get scheduled, deals with scheduling snafus–she’s a goddamn genius. Anyway, when I talked to her at 3PM, she set up an appointment for my mom the very next day. No lie. And of course, while being amazingly efficient, she was also kind on the phone. It seems like a small thing, having an appointment scheduled quickly, having someone be kind on the phone. But when you’re in the midst of a shitshow like a new cancer diagnosis, it just means SO MUCH.

So, when we saw my…I mean OUR oncologist, he explained her cancer to her just as clearly as he’d explained mine to me, took the time to answer all her questions just like he does with me, and had already emailed the surgeon I’d seen to make sure my mom could get an appointment with her within a week. He’d also sent in a referral for a breast MRI. All of this less than 24 hours after we’d set up the appointment with him, and after having spent the previous night at the hospital with another patient until almost midnight.

HASHTAG BEST. DOC. EVER. 

How am I feeling about my mom getting cancer, you ask? I’m pissed–how much ridiculous trauma can one family go through?!?!–and scared. Although I know my mom is in good hands and that her prognosis is good, I mean, how can you NOT be scared when your mom gets cancer? I also know what’s in store for her, in a way that most people who haven’t been through cancer treatment don’t, and I wouldn’t wish cancer treatment on my worst enemy, let alone my mom. It’s going to suck for her, and I don’t want her to suffer. But she will, as everyone who goes through treatment does.

Sometimes people ask me why I’m so committed to getting more research done on metastatic breast cancer, knowing that I’m not likely to live long enough to benefit from it. Well that’s easy to answer now: because I don’t want my mom to die of breast cancer. I want her cancer to be gone and never come back, and if it does come back, I want there to be better treatments than just slash/burn/poison. I want her to be there when my kids get married, and maybe research will help make that happen. It’s always been personal for me, but it’s even more personal now.

Futility

Posted on by Beth Caldwell

I’ve been struggling to put on my brave face lately. Partly it’s the fatigue, which has gotten worse with every chemo cycle. I’m now on my fifth round of carboplatin/taxol; neither of these are easy drugs to tolerate, and together, they’re a kick in the gut. When I’m tired, I’m more emotional. It’s just harder to plow through this shitty existence with a smile on my face when I don’t have any energy.

But it’s not just that. I had another brain MRI a few weeks back, and there were three more spots on it. Too tiny to say for sure that they’re more mets, but that’s what I’m expecting the follow-up MRI will show early next month. Which means more gamma knife surgery, more chemo, more treatment. When I got the news about the MRI, I got drunk, and I emailed my oncologist and said “It all just feels so fucking futile.”

I think there is still a part of me, buried deep down, that hopes that I’ll live long enough for a cure to be found, or at least, for some treatment to come along that will make metastatic breast cancer truly chronic. Because, if I could stay alive that long, then all this suffering I’m doing wouldn’t be futile. It’d be a means to an end: staying alive long enough for a better treatment to come along. One that adds more than few months to my lifespan, and one that doesn’t come with the cost of spending days on end lying in bed because I’m too tired to do anything.

But then I have yet another scan that shows yet more progression, and it’s like that tiny little bit of hope gets punched in the gut, and it hurts. It really fucking hurts. And I wish it wasn’t there anymore. I wish I could just accept that this is my fate: to keep being tortured for another year, maybe two, and then to die. Maybe if that little bit of hope wasn’t still in there, it wouldn’t hurt so much every time I see more dots growing on my brain.

But that is the reality of how I’m living with my disease: to live with that tiny bit of hope, to never fully accept that this is all there is for me, and to keep getting punched in the gut over and over again as death inches closer. It’s not just the treatments that are brutal and exhausting. 

Luckily this is my last cycle of carbo/taxol for a while. After this, we’re switching to Xeloda, which is milder and hopefully won’t bottom me out so badly. I really hope so, because when I’m not so tired, hopefully I’ll be better able to pick up the pieces emotionally and keep pushing through this shitty thing I call a life. Because there’s another scan to face in a couple of weeks, and I need to brace myself for another punch in the gut.

Why Awareness is Stupid and Practically Pointless

Posted on by Beth Caldwell

October is coming. I hope it’ll be better this year with the big die-in on October 13, but it’s still gonna be a shitshow. I’ve been thinking a lot about why it drives me, personally, so insane, and I’ve come to a realization: it’s that awareness is stupid and practically pointless. Let me explain.

I feel like there’s a big difference between awareness campaigns and education campaigns. Education campains don’t just try to tell you some information; they also try to get you to do something. In the world of breast cancer, that includes getting people to go for routine breast cancer screening, ask their doctor about their breast density, and become familiar with their breasts so they notice when their breasts show symptoms of breast cancer. In short, there’s an ask explicit with education–it gives information that hopefully will lead people to take action.

Awareness, on the other hand, has no ask. It says, “Be aware that breast cancer exists!” It includes images of dogs wearing bras and pink ribbons on fireworks, because it’s not about educating people. It’s simply about making them aware that breast cancer is a thing. If all you want to do is to say “Hey you, there is a thing and it is called breast cancer” then yes, awareness is the right tool. But why in the fuck would you want to do that? What is the point of making sure people know that breast cancer exists? What does knowing it exists accomplish?

I can only think of one thing it accomplishes: some of it brings in money for breast cancer charities–but not all of it, because some of that awareness isn’t even related to charitable fundraising. Now, if all the money that awareness generates was being spent on education or patient support or research, then OK, I guess I’d feel OK about that. And there are many charities that are doing that, and I encourage you to donate to them. Unfortunately, there are too many (cough cough Komen cough cough) who aren’t. They’re spending it on more awareness. Which brings them more money, to be spent on more awareness.

This is why October drives me crazy: because all that awareness could be replaced with education, and then we’d really be getting somewhere. There are still too many people not getting the screening appropriate to their risk of breast cancer. There are still too many people who need to know what inflammatory breast cancer looks like. Imagine if awareness was converted from something stupid and practically pointless into something that actually DOES something. Wouldn’t that be so much better? Waste makes ne nuts. It just does. And seeing all these resources spent on awareness makes me want to stab a pen in my eye.

So, how about if we, as the breast cancer community, change the conversation from one of stupid and practically pointless awareness, to one of education? And maybe, just maybe, we can change the story for actual people with breast cancer.

Don’t you worry your pretty little head

Posted on by Beth Caldwell

I’m not gonna lie, I just drank some bourbon and I’m already wound up with the onslaught of pink when it isn’t even goddamn Labor Day (I am so sorry, childhood and gynecological cancer peeps, it sucks that Pinktober is eating your awareness month). So maybe this will be even more rangy than my usual feminist breast cancer rant, but I’m not even remotely sorry about that.

I am so fucking sick of the pink awareness machine convincing everyone, especially early stagers, that breast cancer is cured when treatment for early stage disease ends. We don’t know how many people who have early stage disease will later develop metastatic disease, but it may be as many as 36% within 12 years of ending treatment. However many it is, it’s TOO FUCKING MANY. And too many women who have early stage disease think they’re cured, when they are still at risk of developing metastatic disease. 

Why does this happen? I personally think it’s partly a gender issue, and partly a marketing issue. Let’s delve into the gender issue first.

It’s been a thing since time immemorial to treat women like they’re too fragile or stupid or incompetent or whatever to be handle the truth. We’re delicate flowers, you know, so if you tell us that something scary might happen, we’ll probably have some hysterical (did you know that word has the same root as hysterectomy? Because doctors thought our uteruses made us cray-cray) reaction and never recover. So the solution was, just don’t tell women what’s happening to them. 

What. The. Fuck. I mean, WHAT IN THE ACTUAL FUCK, amiright? Except we still do that now. We don’t tell early stagers that their cancer might metastasize because we don’t want to scare them. Why don’t we want to scare them? Is it because we worry their poor little female brains can’t handle it and they’ll start running through the streets screaming and pulling out our hair? For the love of pete, could you all please just stop infantalizing us for five minutes? Women have a right to know what can happen to their bodies. We are not pussies. We’re strong and powerful and we handle horrible shit all the fucking time.

Then there’s the’s the marketing thing. Take a look at practically any marketing for any cancer center, cancer charity, or cancer anything, and you’ll see it’s about selling hope. Hope for life, hope for a cure, hope for never having cancer come back. How can you convince people to hire a doctor or donate money if there’s no hope that they’ll be cured? I mean, if the marketing said “We’ll do our best but 1 in 4 of you will develop terminal breast cancer anyway” they’d never convince anybody to part with their hard-earned dollars, now would they? The truth can be mighty inconvenient, so it’s easier to just focus on hope.

The thing is, though, if women don’t know that their cancer could recur, they don’t know what signs to look out for. They don’t know that unexplained bone pain is something they should mention to their doctors, because it might be bone mets. They don’t know that that headache they just can’t shake should result in an MRI. They don’t know that the tamoxifen they’re on is really fucking important and if they stop taking it, they may be risking their lives. Because nobody told them the risks, because nobody wants them to worry their pretty little heads.

This shit is fucked up. Patients have a right to know that their cancer could come back, that it could become life-threatening. We should respect them enough to trust that they can manage their fears in the face of the facts. We should treat them as adults and tell them the truth. 

October Is Coming…but also in a good way!

Posted on by Beth Caldwell

I fucking hate Pinktober. It’s everything that is wrong with breast cancer culture. You can put pink on literally anything in the name of “breast cancer awareness” as though that actually saves any lives, and suddenly you’re not a fracking company, you’re a “corporate citizen.” A huge number of the pink ribbon products that appear EVERYWHERE in October give literally zero dollars to breast cancer causes, even awareness ones, and even less give money to actual research or patient support. For me, it’s like the whole world is rubbing it in my face that I’m going to die and becausehalf the country thinks they’re helping by buying pink shit, when they’re actually not. During Pinktober, I feel frustrated, angry, impotent, and full to the brim with grief, for my life being cut short, for the friends I’ve lost, for the friends I will lose.

But this year, October won’t just be a shitshow of making the rest of the world less frightened of a genuinely deadly disease. No, this year, us metsters aren’t going to just sit by and wish it was different. This year, we’re taking it to DC, and I want you to come with us. Yes you, person who has never had breast cancer, and you, person who had early stage disease and will always have a fear of recurrence in the back of your mind. All. Of. You. 

MET UP, an organization dedicated to saving the lives of people with metastatic breast cancer, is hosting a die-in on the west lawn of the US Capitol building, at 11AM on Tuesday, October 13. We’re hoping to have 1430 people there, from all walks of life, to represent the 1430 people who die every day of metastatic breast cancer around the world. We’ll gather at 11, and at noon we’ll lay down, in honor of the 1430 who will die that die, and read a eulogy to them. 

And then the leaders of our movement will sit down with Congressional staffers and ask them for 3 things. The first thing we want is increased funding for cancer research. The percentage of research proposals that get funded by NIH and other federal agencies has decreased substantially. It’s not that all those ideas that aren’t getting funded are bad ideas. It’s that we don’t have the money to pay for them. Which is why we need more money.  And we don’t want to fight with other types of cancer for money–we want more money for everyone. Treatment for metastatic breast cancer is equally as horrific as it is for metastatic lung cancer, metastatic pancreatic cancer, or any other terminal cancer. We’re all in this shitty situation together and we all need more research to save more lives and to make our lives better.

The second thing we want is for 30% of the breast cancer research funds that Congress appropriates to go to metastatic disease. Currently that figure is 7%, despite metastatic breast cancer accounting for nearly all breast cancer deaths. If we have any chance of changing metastatic breast cancer from a death sentence to a life sentence, and from a life sentence to a curable disease, then we need research dollars to go towards saving the lives of the people who are dying.

The third thing we want is for the National Cancer Institute’s SEER database, which tracks the incidence of cancers, to begin tracking when a patient has a metastatic recurrence. There has been a lot of debate (especially lately) about what percentage of people with early stage breast cancer will develop metastatic disease, and the reason there’s been debate about it is because we literally don’t keep track of that. Adding that datapoint to SEER would give us a picture of just how effective or ineffective early detection is, and would help us to better understand which types of breast cancer are more likely to metastasize. All of this helps with ensuring that researchers can focus their efforts where they’ll save the most lives.

Now, I said before that I want you to come to our event, AND I MEAN IT YOU BETTER BE THERE OR I’LL CRY AND CRY. But if you’re in treatment or otherwise can’t make the trip, then I’m going to suggest that you write to your member of Congress and ask them to support these three legislative goals. If you need a model letter that you can personalize, drop me an email at cultofperfectmotherhood@gmail.com and I’ll send you one. I don’t often ask all of you for help, but I do often hear from you guys asking how you can. This is a way you can make a HUGE difference.

We’re asking everyone who’s planning to attend (my plane tickets are bought SQUEEEEEEEEE!!!) to let us know you’re coming at the link below. Or, if you’re not on Facebook, just shoot me an email or tweet at me or something.

https://www.facebook.com/events/912441292131635/

Special bonus to anyone who’s stalking me: I promise to hug each and every one of you who comes to the event. (Unless you’re like my friend Jo, who isn’t a hugger.)

I don’t know if you can tell, but I’m super excited about this event, so spread the word that we’re taking October back and it’s gonna be AWESOME. I’ll see you all on October 13!

Why I hate pink ribbon culture

Posted on by Beth Caldwell

Did you notice it was some kind of dog-related holiday this week? Susan G. Komen For The Cure did. This is from their Twitter feed.
  

Know what I was doing on that dog day? This.

  
Here’s another one from the Komen twitter feed earlier this year.

  
Round about that time I was looking something like this, on my way to a blood transfusion.

  
Check it, I still I had eyebrows then! Ah, memories.

Here’s the thing, y’all: breast cancer is not some sorority where the treatment is the hazing and once it’s done, it’s all a party with giant bras and fake boobs on dogs. Cancer is a shitshow that leaves lasting scars. One of my closest friends had stage I breast cancer, and she’d be the first to tell you that although chemo and radiation are over, she’s not done with cancer. She lives with the scars and the pills and the emotional damage every day. And for those of us who are stage IV, the hazing of treatment only ends when we die. We never get to join the sorority.

All this pink shit, the bras and the feather boas? They trivialize a deadly disease. They make sport of our deaths. Actually, what they do is erase our deaths. Because if those dogs are what breast cancer is about, where do I fit into the picture, with my one breast? I’m being tortured so I can buy a little extra time with my kids before I leave them motherless. And I WILL leave them motherless, no matter how many dogs get put into bras. No amount of awareness will save my life.

The next time you see one of these things, I’d like you to register your dislike with the organization sharing it. And while you’re at it, demand that they spend more money on research, which is the only thing that will save my life and the lives of the other 150,000 Americans living with metastatic breast cancer.

List of movies I can’t watch because of The Cancer

Posted on by Beth Caldwell

Terms of Endearment

Stepmom

In the Land of Women

Love Story

Decoding Annie Parker

The Fault in Our Stars

The Family Stone

Dark Victory

Life as a House

American Splendor

Gone Girl

Sisterhood of the Traveling Pants

Forrest Gump

Magnolia

Add any movies that cancer has spoiled for you in the comments.

No, I will not pee in your cup

Posted on by Beth Caldwell

It’s Mets Monday again, and I want to talk about something that impacts young metsters in particular: pregnancy tests. For me, it’s one of the most dehumanizing parts of mester life. Here’s how it played out for me last week.

I developed a cold last week, which doesn’t sound like a huge deal, but when you’re having chemo, spiking a fever means a hospital admission. Ain’t nobody want that, so my oncologist said “No chemo this week, we’ll start the cycle next week instead. How about a PET scan while we wait?” I was like, “Perfect, let’s do it.” We were going to do one after this cycle, but, given the opportunity and a good insurance plan that covers regular scans, bumping it up a month makes sense. My oncologist put in the referral for the scan, and they scheduled it for Thursday morning.

On Wednesday, I got a call from the radiology clinic where the scan would take place, and the scheduler on the phone confirmed the appointment, and asked if I needed her to go over the instructions for prepping for the scan. I told her I’d had several already so I knew what to do–nothing to eat after midnight, last meal low in carbs. She said that’s right, and then said, “And because you’re under 50, we need you to do a pregnancy test up at the hospital before you come for your appointment.”

Now, this isn’t the first time I’ve had to have a pregnancy test before a PET scan. PET scans involve radioactive isotopes and that shit is bad for a fetus. But, since I’ve been in menopause for over a year now from the treatments for my terminal cancer, the last scan they’d said I didn’t need a pregnancy test. Because they used logic. So, I told the scheduler this, and she said, “Well, it’s protocol, but I’ll ask the radiologist if it’s necessary and call you back.” Which she did, with the news that I would have to take the pregnancy test.

I get it, modern medicine: you worry about me suing you if it turns out I was pregnant and the baby has a birth defect. On behalf of the legal profession, I apologize that we’ve driven you to behave in ways that are not even remotely about taking care of your patients, and are solely about covering your butts. Because that’s exactly what you’re doing when you ask a woman who has lost her fertility to cancer treatments to submit to a pregnancy test. That’s not about protecting her, because it’s actually causing her emotional harm.

I didn’t want any additional kids by the time I found out I had cancer–two was my limit, and The Hubs got snipped like five minutes after The Girl was born. But that doesn’t mean it’s not still traumatizing to be menopausal at age 38 from the cancer treatments that are only going to extend, but not save, my life. To then be required to not only be reminded of what cancer has taken from me, but to submit to testing to prove that cancer has indeed taken it from me, in order to get the testing I need to stay alive? That’s incredibly insensitive. Actually, the word I want to use is cruel. It’s cruel to do this to women.

On top of that, there’s the obvious paternalism involved in forcing women to take unnecessary medical tests “for their own protection.” What’s happening in my situation is that this radiology protocol says that I, a woman who hasn’t had a period in 14 months, whose husband has had a vasectomy, and who is actively undergoing chemotherapy, am unable to be trusted when I say “No, there is no chance I’m pregnant.” They know better than us dumb women about our bodies. Just trust us, ladies, we’re only trying to protect you.

Well, fuck you. No, I won’t pee in your cup. I refuse.

I emailed my oncologist and the clinic manager for his office explaining what was going on, and how upset I was about it. I told them that I knew this wasn’t their fault, as the radiology practice isn’t part of the cancer center, but that I hoped they’d pass on my concerns to the radiology practice. He and the clinic manager both wrote back and promised to try to help me out.

A few hours later, after 5PM, I got a phone call from the radiology clinic, this time from a different scheduler. She asked if I’d gotten instructions for tomorrow’s appointment, and I said yes, and she said, “And you know you need a pregnancy test first, right?” This is when I had had enough. Hearing I had to have a pregnancy test for the third time that day was more than I could take. So, I said that I didn’t think I should have to take one given that I’m in menopause and receiving chemotherapy, and my husband has had a vasectomy. She trotted out the “It’s protocol” line and that’s when I snapped. I started crying, and I told her that I think it’s incredibly insensitive to tell a terminally ill woman whose fertility has been taken from her by cancer treatments that she has to take a pregnancy test in order to get the medical tests that guide those treatments.

There was a long pause on the other end of the phone and she apologized, and said they certainly didn’t mean to come off as insensitive. She explained that her supervisor wasn’t there, and she was worried if I didn’t get the test done, that they’d refuse to do my scan when I got there the next day. I explained that the last time I’d been there for a scan, they hadn’t required a pregnancy test, given that I’m in menopause from treatment. And she said, “OK, then, don’t worry about taking the test, I’ll put a note on the file.”

The next day when I got there for the PET scan, nobody at the front desk mentioned the pregnancy test. And in fact, when the nurse brought me back to get me prepped for the scan, she apologized for the whole debacle and said they have some new schedulers who don’t fully understand the rules, and they’ll be doing some training for them. I told her I appreciated that.

Thing is, it shouldn’t take a patient bursting into tears on the phone to make this kind of change happen. And I’m not the only young woman with cancer this has happened to, nor is my story the most horrifying one I’ve ever heard.  One friend told me that after having spent the previous 10 days on the hospital and having several pregnancy tests during the time she was there, she had port surgery. After they started anasthesia for the port surgery, they decided to test her for pregnancy AGAIN. She had to pee in a pan while prone on a bed, half-conscious and in pain from a spine surgery she’d had six days earlier. What in the actual fuck.

I urge doctors to trust their cancer patients, especially those that are terminally ill, to know whether they’re pregnant or not. Making them take a pregnancy to prove it is cruel. Please, stop doing this harm to us.

My Cancer is Rarer Than Your Cancer

Posted on by Beth Caldwell

This post probably won’t mean much to folks who aren’t cancer geeks, but if pathology is exciting to you, read on!

So, you may remember that when I was initially diagnosed, the pathologists who first looked at my biopsy, at the hospital where I get treatment, said that my cancer is neuroendocrine breast cancer. Neuroendocrine breast cancer is ridiculously rare, like 20 U.S. cases per year, out of about 240,000 total breast cancer cases. Neuroendocrine tumors in general aren’t that common–about 12,000 U.S. cases per year, and they typically grow in the intenstines, pancreas or lungs. 

When I had my second opinion, they sent that same biopsy sample off to a different lab, for a different pathologist to look at it. That pathologist said it was invasive ductal carcinoma with neuroendocrine features. Now, invasive ductal carcinoma is the most common form of breast cancer, but it having neuroendocrine features isn’t that common. My oncologist and I scratched our heads at that one, but moved on with a chemo regimen that would be effective on both breast cancer and neuroendocrine cancer. That way, all the bases were covered.

When I had the biopsy of my sternum tumor to confirm that it actually was cancer, the first pathology lab looked at it and said, “Yep, neuroendocrine breast cancer.” That same lab did the pathology on my liver biopsy this year, and sure enough, they found it to be neuroendocrine breast cancer.

At that point, I asked my oncologist if we could send my samples to a third lab, to act as a tie-breaker. So he did–he found a guy at the University of Pennsylvania who’s well respected, and had him look at it. And what he found in that initial sample from my breast was ductal carcinoma in situ, along with neuroendcrine breast cancer. Which completely blew my mind.

You see, ductal carcinoma in situ is also referred to as Stage 0 cancer. When you hear about the increase in diagnoses of cancer that comes from mammogram screenings, most of that is DCIS, and it’s also the center of the debate about overtreatment. Most DCIS won’t ever turn into real cancer–in situ means “in place”, because it hasn’t spread out of the duct it’s in, so it’s not dangerous. But the problem is, we don’t know which DCIS will turn into an invasive cancer, or will end up fostering a happy home for an invasive cancer. Which is why doctors treat it like it was an invasive cancer–nobody wants to look back a year later and say “Ooops, we should have cut that out of you, because now you have a more serious, harder-to-treat cancer.”

Hearing about this DCIS/neuroendocrine combo finding prompted my oncologist to talk to the second pathology lab and ask them more questions about what they found. Turns out, they’d also found DCIS and neuroendocrine breast cancer, but had classified it as invasive ductal carcinoma with neuroendocrine features, instead of calling it what it is. And the first pathology lab had missed the DCIS completely, which is why they just called it neuroendocrine breast cancer.

Does any of this really impact my treatment? No, but it does tell me a lot about how my cancer came to be, and psychologically, that’s somehow comforting to me. It appears that I was one of those very few people for whom mammogram screening at a very early age might have helped–except, there was no way to know that. I don’t have a strong family history of breast cancer, and I don’t have any genetic predisposition to breast cancer. My cells just went sideways on me, and as my doctor told me when I found out I was stage IV, there is nothing I could have done to prevent this. I did everything right based on the information I had. Cancer’s just a sneaky asshole.

At the same time, it’s kind of alarming to hear that three different labs came to three different diagnoses based on the exact same tissue sample. It’s a reminder that medicine isn’t a precise science–it’s extremely complex, and sometimes subjective. This is why it’s important to get second and third opinions.

So, now we know that my cancer is indeed rarer than your cancer, as one of my funny cancer t-shirts says. I’m totally gonna make an awesome research paper someday!