cancer journey – Page 2

A Millennial’s Guide to Breast Cancer: Let’s Talk it Over

I didn’t know what my ring tone sounded like until this spring. Most people don’t call me, and I figured that, if anyone did, they’d leave a message and I could call them back later. Once your number starts getting around to various medical professionals, you have to start answering the calls.

For one thing, you can’t always just call someone back. The number that shows up on the phone, usually labeled healthcare so at least you know it’s not spam, isn’t a direct line. Sometimes it gets you a menu, and other times it’s a recording informing you that this particular number is never answered. At least if you get the message (and listen to it or have a good transcription), you’ll have the direct number for the service in question and you can save it to your directory for future reference.

Other times you want to answer at the initial call because you want to get the next thing scheduled right now so you can plan things out. Even the soonest available appointment can often feel like it’s too far in the future (don’t these people know you have cancer?) so answering and getting that conversation going means making your wait time as short as possible. Honestly once you know there’s cancer in there somewhere, you just want it out.

It’s not just about answering your phone and keeping track of the information coming in, though. You’re not merely becoming the expert on your cancer and your treatment. You also have to immediately become a teacher.

“Oh, it’s going.”

Telling people you have cancer sucks. You’re just going about your day, someone hits you with the usual “Hey, how are you?” greeting and you have to make that decision: tell them? Don’t tell them and have them find out later? Duck into the nearest sewer grate and avoid them for the rest of your life?

I knew there was no way I’d be able to say it out loud to many people, but even once you’ve decided on texting, there are still so many questions. How much do you say? How do you even start? What order do you text people in? What if you miss someone important in the first round? Seriously all the logistics of trying to inform everyone you think feels like they deserve to be informed directly so you don’t offend them on top of sharing your cancer news is ridiculous. Like you shouldn’t really be concerned with propriety in the middle of all this, but hey, you’re going to live through it, so you’ll be potentially dealing with their hurt feelings for decades. Right?

At first it didn’t seem like such a big deal. I went ahead and drafted a text, just to get it down, and decided I’d just sent it to everyone. At that point, “everyone” was basically anyone who texted me on a semi-regular basis. The number wasn’t that large, so it was easy enough to do: copy, paste, send. Paste, send. Paste, send.

Not everybody chooses to make their diagnosis public, so that’s a personal decision, but I opted to write a Facebook post about the situation. Basically I decided I wanted to eliminate the awkward “How are you?” conversations as much as possible. It didn’t quite end up working the way I thought it would—I still had to tell all of my high school students, one class at a time—but it did help get the news out there. Part of that made it feel more real, so of course I wasn’t in denial or anything, and part of it was just the act of doing something when what I was really doing was waiting for a call from the surgeon’s scheduler. I had the news, and I had nothing pressing to do, so I told everyone.

Part of what I said in that initial post was that people didn’t have to respond. They could hit the heart react, and I’d know what they wanted to say. Again, this was a two part deal: I didn’t want to have to come up with a response to every single comment, and I didn’t want to force people to think of something to say.

What do you say when someone tells you they have cancer? I don’t have a right answer, but I do have a wrong one: the number of people who rushed to reassure me that I’d be fine was, uh … not reassuring. It felt dismissive, like they didn’t want to be bothered thinking about what I was going through and therefore decided that I had to be fine, so they wouldn’t have to worry about it. And honestly, I’d already gotten the wrong end of the odds with the cancer diagnosis. Who were they to say that the next step in the process would turn out sunny-side up?

This isn’t to say, of course, that I think all these people honestly felt this way. I think it’s simply hard to know what to say when this situation comes up, and the first instinct is to be reassuring. I would suggest, though, that all well-meaning reassuring people start practicing a variation on I’m here for you, no matter what comes next. Even relating a story of a friend’s or relative’s experience isn’t necessarily reassuring, because every cancer experience is different and, especially early on, there are just so many directions our lives could end up taking.

Over and over again

You’d think that telling people would get easier, but I don’t think it has. I just met up with someone for the first time since before my diagnosis and had to go through the whole story again as part of our catching up. I may be guilty of avoiding people on days when I simply don’t have the energy to go through it all again: telling someone. Dealing with their initial reaction. Usually reassuring them so they don’t have to feel bad. At times listening politely to advice that simply has no bearing on my situation. It’s a lot, okay?

I try to remember that it’s the first time for everyone I tell. They haven’t had to internalize this and make this a part of their everyday life. It’s not something anyone expects to hear from someone who seems to be healthy. But it’s still such process, and some days I just don’t have the energy to guide someone else through it after all the informing I’ve already done.

From the initial texts and Facebook post informing people of my diagnosis, things just got more complicated. There were updates to share after every appointment, and even though I tended to keep specifics to texts and only share more general updates on Facebook, more and more people crept into my to text list. I would leave an appointment, sometimes overwhelmed by more than an hour of information, and type up a summary and the next steps. I could copy and paste again, but as I kept pasting and sending, more people would respond. I’d have to go back and make sure I didn’t forget to send anyone the initial message, and then also make sure I’d responded to responses, at least with an emoji react. People who care want to know what’s going on, but man, it can snowball.

Most people are lucky and don’t know all the steps involved in getting a breast cancer diagnosis and proceeding with treatment. They are lucky people, but this just means a steeper learning curve. After I’d spent an hour or more—I think the record without a break was three hours, but I’ve had two appointments per day more than once—answering questions and getting things sorted out, I had to distill it into something that made sense for everyone who received my texts. Spoiler: it rarely did. Follow-up questions were the norm.

I had one person (a cancer survivor herself) offer to pass on the information to a branch of my support system, and that helped a lot. She did try to warn me about how overwhelming it would get, but it’s hard to imagine it at the beginning, and then you’re already stuck in your new “usual” procedures. Could I have changed things up? Sure, but it would’ve taken too much energy, and by that point I needed to save every spoon I could.

And again and again

Part of the overwhelming nature of a cancer diagnosis is the simple number of new people you meet. They all want to help, but you’re also kind of at the worst point in your life, so it’s hard to be grateful … especially when they’re coming at you yet again with something sharp. It also means explaining to other people the difference between similar-sounding titles, or why different appointments are necessary even though, yes, of course you know it feels like things are just being delayed. I’ll give an overview of all the different appointments and professionals in my next post, but until then, do something kind for yourself today. Memento vivere.

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A Millennial’s Guide to Breast Cancer: Translating Medicalese

Missed the first post? Read it here.

One of the things I learned this year (one of many I’d be fine not knowing, thanks) is that documents can hit your online patient portal hours before your primary care provider sees them. I knew that, if I logged in and saw the results there, I’d have to deal with them on my own without her input and guidance.

Of course I looked. Granted, I did have my parents to fall back on if there was information on the pathology report that I didn’t understand, but honestly that first “carcinoma” was enough. What else did I need to know?

The initial pathology report actually has a lot of information on it. It doesn’t have everything—people will want to know your stage as soon as you tell them you have cancer, but you don’t get that information until after the surgery—but it has a lot. Your doctors will go over what things mean specifically for you, tailored to your results, but this is a basic overview of the information available on the initial report.

Invasive vs. in situ

This designation is an either/or: if the cancer isn’t invasive, it’s in situ. The Latin means “in place,” so an in situ carcinoma hasn’t spread beyond where it started. “Invasive” means the cancer has spread beyond the original site into the surrounding tissue. It sounds scary, but most breast cancers found are invasive. (Okay, it’s still scary, but the fact that it’s common means the medical field knows how to treat it, and a cancer labeled “invasive” can still end up being a Stage 1 in the end.)

Ductal vs lobular

This one indicates where the cancer was found. If it’s ductal, then it’s in the milk ducts. Lobular cancer was found in the lobules, which produce breast milk. The location of the cancer helps guide treatment.

Histologic Grade

This section has a lot of data and a lot of numbers, but the final one—the cancer’s grade—indicates how quickly the cancer is spreading and how different the cancer cells look from normal cells. It’s like golf, so you’d like to see lower numbers here. A Grade 1 is slow-growing, less likely to spread, and has cells that look close to normal cells. Grade 3 looks very different from normal cells and has a potential to grow and spread faster. This information will also help guide your treatment.

Hormone Receptor Status

Breast cancer can be “receptive” to three main hormones. If it’s receptive, then that hormone acts like a key turning in a lock and starting an engine: that specific hormone causes the cancer to become active. My surgeon had a whole speech about it with hand gestures, but I’m going to make this into a metaphor about my cat.

Van Go was a little old lady (she had a crumpled ear, which was why the Humane Society gave her that name) who was very particular about cat food. She preferred dry food to wet because she was a contrary cat, and she only ate specific colors of the dry. After Van Go was done eating, there’d be a little pile of the rejected color, separated out from the two colors she’d eaten. Van Go was receptive to two colors of cat food, but not the third.

The two colors she did eat fueled her for her little old lady adventures. If, for some reason, we’d decided to go through the bag and remove those two colors, she would have starved. Those were her food, and she ignored the third color. Van Go was a cat and not a tumor, but you get the picture. (In case you’re concerned, she lived a very long and happy life to an age the vet could only estimate as “19+” and she was always full of purrs and head bonks and her two favorite colors of crunchy food.)

If a tumor is receptive to a hormone, then part of the treatment can involve the reduction of that hormone. We’ll get to hormone therapy later, but yes, suppression of estrogen leads to hot flashes. This is your cue to send the cancer survivors in your life their favorite chocolates.

And finally, a note on the size estimate: the report will include an estimate of the largest size in all three dimensions, but it is only an estimate. It’s not uncommon for the final measurements after surgery to be slightly larger than this initial report. In my case the estimates different from the final by 2mm, so it’s not a huge difference, but it was something more than one friend warned me about, so I’m passing that along, too.

Information overload

Already we can see that even just this initial pathology report is full of data and overwhelming. The diagnosis is already individualized at these different levels, depending on where the cancer started, how much it’s already spread, how different the cells are, how likely it will continue to grow and spread, and what fuels it. All of these answers helps the team of doctors make their plan of attack so they can remove the cancer and take the most efficient steps to decrease the chances of it ever coming back.

At this point, though, right at the diagnosis, it can feel like those are all just tiny details. The main point is that, after all those scans and the core needle biopsy, you can’t just breathe a sign of relief because it was a false alarm. You have to shift your plans and, at some level, even your perception of self. You’re not a healthy person anymore. You have cancer.

This is also the moment where you start having to decide what to tell other people, or even if you want to tell them anything at all. That’s a very personal decision, and I’ve known people who’ve made choices all the way across the gradient from making it public to only informing those who absolutely need to know. My next post will discuss information, both getting and disseminating, in more detail. For now, though, fix yourself your favorite drink—make it a pumpkin spice if that’s your pleasure—and memento vivere.

all posts in A Millennial’s Guide to Breast Cancer

A Millennial’s Guide to Breast Cancer: The Beginning

I turned 40 earlier this year and decided to go ahead and get a mammogram. The American Cancer Society says women can start annual screening at 40, but should definitely start at 45. Considering my family history, I opted to start just to be sure. Unfortunately, we were quickly sure that I had breast cancer.

On the plus side, I was surrounded by all kinds of support. My parents are both retired ob-gyns, so they could answer a lot of my questions about my results and various reports. I also know a number of people who were diagnosed with breast cancer themselves, at different times in their lives. But then another friend of mine was diagnosed with cancer, and as we were talking about it she said that she doesn’t actually know anyone else who went through it.

Every patient’s cancer journey is different, in large part because of how customized treatment has become. Even when others shared their side effects from, say, radiation, it didn’t line up with my experience. (Okay, even the techs said they don’t usually see side effects as quickly as mine cropped up.) But there are still a number of things that I think would be useful for recently-diagnosed people—or their support crews—to have access to.

“I hope I never have to know as much about this as you do”

Any cancer journey comes with an overload of information. Earlier this summer I was talking to one of my colleagues and explaining the process so far when she pointed out exactly how much information I had handy that most people (thankfully) don’t. Pamphlets binders, reports, prescriptions … it’s a lot of information and can be difficult to take in. At least one person came with me to every appointment (only one appointment specifically limited it to one) and listened along with me. At times we disagreed over some of the details, but we were able to write down or remember enough to feel like we knew what was next, and why, and so I could keep everyone else updated. Yeah, there’ll be a whole post of its own about “keeping everyone else updated,” but for starters:

You want to get the mammogram before you have any idea that you might have cancer. Not every lump you can feel is cancer, and you won’t be able to feel every cancerous lump. It depends not just on how big the tumor is, but the depth in your breast. Mine ended up being 1.3 cm along the longest measurement, but it was in the bottom third of my breast tissue, and even my surgeon couldn’t feel it. At the time the mammogram flagged a mass, there was no way for me to know it existed.

There are signs that mean you should get things checked out, though. You should be performing monthly self-examinations (and if you haven’t been, now’s a good time to start). Breast tissue isn’t uniform, so you’re acquainting yourself with your own personal normal. Tissue can be dense and perfectly normal. You’re really looking for any changes month to month. If you notice a change, that’s when you want to get checked out.

Other signs of breast cancer might not be so immediately obvious as a lump. Changes in the skin, including dimpling, or drainage from the nipples should be checked out. Part of the monthly self-exam that doesn’t always initially make sense is checking for swelling or tenderness in the armpits. This could be a sign that the lymph nodes are working hard to filter out harmful substances or cells. Later on we’ll discuss why lymph nodes are tested as part of cancer treatment.

During my first appointment with my surgeon, he not only checked to see if he could feel the mass, but also spent time looking for swelling or tenderness at the lymph nodes in my armpit on that side. The lack of either was a good sign that we’d caught the cancer early, but of course we still wanted to go through all the proper medical steps to be sure.

Begin at the beginning

It’s not abnormal to get called back for a second scan after a first mammogram. There are no prior images for the radiologist to compare them to, so your own personal normal hasn’t been established yet. Different parts of the breast can be a different density, and sometimes the image is just unclear. A mammogram uses x-rays to examine the tissue, and the way you’re positioned during the procedure can affect how clearly the images can be read. No, it’s not comfortable, but it doesn’t take very long. I know a lot of people who’d been putting off getting their first one … and who have since texted me their own all-clear results because my diagnosis made them finally schedule it.

A mammogram isn’t the only way for doctors to see inside our bodies, though, so my next step was an ultrasound of the questionable spot. An ultrasound uses high-frequency sound waves for a different look at the soft tissues involved. Different scans can give doctors different looks, and sometimes these looks clear things up and allow them to agree that the spot is a harmless cyst. Friends of mine have also had MRI scans for yet another level of noninvasive imaging. Doctors really, really don’t want to move to invasive procedures unless absolutely necessary.

My ultrasound indicated that the next step for me was an ultrasound-guided biopsy. This meant going back to the same room, with the same tech, but this time with a radiologist, too. (You meet a lot of specialists on this journey. Some of them show up for a single appointment and are never seen again.) Yes, you’re awake for the needle biopsy, which involves numbing the tissue at different depths before inserting a needle and taking samples of the tissue. There’s no pain, but I wasn’t expecting the weird amount of pressure. This is totally a time when they told me I handled the procedure well and I think they were just being nice—I definitely felt faint until they adjusted the head of the table. The radiologist took two samples and had them sent off for a diagnosis.

Each of those samples means a small piece of tissue was taken from the tumor. The ultrasound meant he could guide the needle right to it and make sure the samples were, in fact, the questionable part. After those are taken—it makes a loud click, so you know exactly when it happens—they insert something called a clip. This is a non-magnetic marker that stays in the breast (and won’t be a problem if you need an MRI in the future). If the results come back as benign, the clip indicates to all future techs and radiologists that this questionable mass has already been checked.

The tissue samples taken are small, but you’ll still probably have discomfort. I was told to ice the area pretty drastically for the first few hours, and although I did it, the ice just seemed to make it hurt worse. It’s better for the long-term, though, so I obeyed my orders to the letter even though I was grumpy about it.

This was the part where things could have diverged. I was told a range of dates for when to expect the results, so of course I updated my online patient portal on a regular basis, just in case the report had posted and the system failed to email me an alert. My biopsy was on a Monday, and my results were in that Friday.

“ORDER_RESULTS_PATHOLOGY”

My results were in my patient portal hours before my primary care provider was alerted to them. I could read them enough to see the word “carcinoma” and honestly, at that point, that was enough. That was the answer: it was cancer. Anything else on the report was just going to have to wait.

In my next post I’ll walk through all the information that is—and what isn’t—on that initial report. In the meantime, do something for your health today … and something for fun. Memento vivere.

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