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.
Rebecca Frost 
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