The Doctor is In

The Facebook time machine reminds me that today marks ten years since I defended my dissertation and (more or less) officially became a PhD in Rhetoric and Composition. My husband likes to call me a “doctor of words,” but more accurately, I am a teacher and scholar of the way writing is used to make things happen. Of everything I learned in my education, what helps me the most in the real world is not my writing skills but my research skills. Not only am I adept at finding research, but I know how to read it, analyze it, critique it, and corroborate it.

Of course, like everyone else, I will scour the internet for hours looking for an answer to a question, especially if it’s related to my health or the health of a loved one, but I fortunately also have access through university libraries to research databases filled with medical journals that provide me with information well above and beyond Webmd. Unfortunately, this also means that my research can take me down a whole lot of extra rabbit holes, even if they might be more credible. In the BRCA+ community, we like to opine that “knowledge is power“: that’s supposed to be the gift of genetic testing, right? You know about your mutation, and now you can do something about it. But although I have often written that the knowledge of my BRCA mutation has saved my life, I’m done with claiming that the knowledge has empowered me – instead, I’m realizing that it has had power over me, just as the idea of breast cancer has for most of my life.

Since I found this lump last week, I have done hours and hours of research, beginning by meticulously analyzing my pathology report from 2013 while simultaneously teaching myself how to understand pathology reports. Just like that year, my mutation has taken over my life, and I am spending all of my spare time reading research studies and typing up notes on them, trying to predict what the ultrasound/biopsy will show.

So, here’s what I know about the DCIS in my right breast, which was removed (along with my left breast) in January 2013:

  • It was high grade, nuclear grade 3:  this means it “has a high mitotic rate is more likely to come back (recur) after it is removed with surgery” (American Cancer Society).
  • Evidence of comedo-necrosis: this means there were lots of dead cells in there, showing that the cancerous cells are fast-growing.
  • Tumor was present in 7 of 15 slides: there are a few ways to measure how much DCIS is present. Mine was measured by noting “the number of microscopic slides that contain DCIS…The larger the area of DCIS, the more likely it is to come back (recur) after surgery” (American Cancer Society). I’m a bit stumped on this one because I don’t know if the slides represent the entire breast (whole breast divided into 15 slides, so tumor present in more than half of breast), or if the slides only represent the part(s) of the breast where tumor(s) was found (tumor area(s) divided into 15 slides). This protocol seems to suggest the latter; however, if these tumors can only be seen microscopically, it stands to reason that they’d need to look at all of the breast tissue to find each tumor. Yet, in my memory of preparing microscope slides in high school biology class, I don’t see any way that all of my breast tissue could possibly fit on only 15 slides.
  • Negative surgical margins: this is good because “If DCIS is touching the ink (called positive margins), it can mean that some DCIS cells were left behind” (American Cancer Society).
  • It was Estrogen Receptor (ER) and Progesterone Receptor (PR) Positive: knowing this can help predict response to hormone therapy if necessary; “Women with hormone receptor-positive cancers tend to have a better outlook in the short-term, but these cancers can sometimes come back many years after treatment.” (American Cancer Society).
  • Sentinel lymph node removed from under my right arm was negative for tumor; this means that the cancerous cells had not spread to other parts of my body.

Once I understood everything I could about my DCIS, I went to work doing research on chances of recurrence or new cancers after DCIS with these features – after all, what I’m trying to figure out (since there’s no way I can wait until the results of Wednesday’s test, which probably won’t come back until Friday at the earliest), is what the fuck is this lump.

I found a few articles that definitely have me scared. For instance, this teaching piece describes a case study similar to mine (although I am more than six years out from my original surgery, and this woman was only one year out). Here’s what worries me:

The recurrence of breast cancer after mastectomy for DCIS is uncommon, but for women who do relapse with invasive disease, the mortality rate is high.[2] While there is ongoing debate regarding the overtreatment of DCIS, there are factors associated with an increased risk of locoregional recurrence even after mastectomy; these include young age (< 40–45 years), close/positive margins (≤ 2 mm), and large multifocal disease.[3] In addition, a tumor grade of 3 has a small but significant negative impact on relapse rates, suggesting the need to optimize therapy in these patients.[4]

What concerns me here is that of the factors listed associated with increased risk of recurrence even after mastectomy, I have three of the four. Obviously, the “mortality rate is high” part is a bit disconcerting as well.

This study has me even more scared, to be honest. While it discusses women who had lumpectomies to remove DCIS (rather than mastectomies), it is nonetheless a bit frightening:

Among 190 patients with grade III, the 10-year recurrence rate was 35% with margins <1 mm, increasing to 70% for patients with closer margins.

So, for women who had DCIS like mine – grade III and clear margins – 35% had a recurrence within 10 years. Thirty-five percent is not an insignificant number. I am surprised that my surgeon did not tell me this – in fact, no one told me any of this. No one said, “Look, you had the mastectomy; we removed the DCIS. But you should know that your type of DCIS, while not invasive, was pretty much the worst kind — like, any minute it was about to become invasive cancer. And research shows that there is a pretty decent risk of recurrence with this kind of DCIS.” Instead, I was given the standard BRCA mutation post-mastectomy line:

“Because even the most experienced breast surgeon cannot remove all breast tissue, a small risk of developing breast cancer remains after prophylactic mastectomy….mastectomy surgery alone lowered the risk for breast cancer by about 90%” (FORCE).

I was told that my own risk was now lower than the general population of women. While I do believe that my risk of developing cancer was certainly lowered, I think it’s a stretch to say it was that low given the kind of DCIS I had.

Like I said at the onset, however, I am adept at critiquing and corroborating research, and there is no exception here. Doctors and scientists are doing research on DCIS in order to determine if it’s being over-treated: when does a woman need to have mastectomy when diagnosed with DCIS? This review of literature points to many of the challenges and biases in doing this kind of research, demonstrating that even the studies  I’m citing above – those that have me most concerned – have problems in research design and reporting, and their results could easily be flawed.

Amidst this work, I received a call from the imaging center where I will have the ultrasound (and possible subsequent biopsy) on Wednesday. The call came while I was in the car with my husband and son on our way to our Niagara Falls vacation. I was driving; my son was in the backseat, headphones dutifully attached to his ears while watching movies on his iPad. Because my husband gets carsick, I could not ask him to take notes; instead, I did my best to commit what she said to memory, then voice-recorded them into a text message to myself: “Shower that morning (can’t shower the following day) and eat lunch beforehand; must wear bra; no deodorant; arrive at 1 for 1:30 appointment; keep taking meds.” That last part is important – I can keep taking my anti-inflammatory for my back pain, even on that day. So while I sit here and write this, and while I obsessively do my research instead of all of the things I probably should be doing on a daily basis, I’m not in agonizing pain.

One thing I should remember is that even though I do need to be my own advocate, I am not a medical doctor. All of my research and understanding of this comes from solitary late-night reading – I have no expert with whom to discuss this right now, and I do not have the years of medical training it would take to 100% understand all of it. And, while I am confident in my research skills, as a “doctor of words,” I know there’s nothing I can really do about any of this until the test results come back.

Deer in Headlights

When you drive in Western Pennsylvania — and it doesn’t matter whether you’re in the city or the country — you’re going to see dead deer on the side of the road…. a lot of them. When you commute between city and country, it’s inevitable that you will see several each week. Despite living here most of my life, I don’t ever get used to it. This morning, for the first time ever, I drove past a doe that was still alive. She lay in the gravelly dust of the Rt 22 shoulder, her legs splayed out beneath her, head raised from her heavy torso; she looked around, as if attempting to meet the eyes of each motorist as we sped past. I couldn’t decide what to make of this: a sign, perhaps, of life where we typically see death? Or a warning: the undeniable horror of slow pain in a creature being shown no mercy.

My mother took me to the surgeon’s office on Tuesday afternoon, where they did not have me registered for an appointment even though I’d spoken to them on the phone only six hours earlier. The look on my face must have convinced the receptionist that I wasn’t going to leave until someone had seen me, so they managed to fit me in.

In the exam room, two nurses did the usual – temperature, blood pressure, a review of medications, my medical history (which I hate repeating in front of my mother, who cannot even bear to look at me as I describe the diagnoses, surgeries, etc). They asked me to change into a pink gown. Ah, pink. Always with the pink.

When the PA came in (my good friend Google tells me she graduated with her MA as a PA three years ago, so she must be at least… what… 23 years old?), she introduced herself and then proceeded with an exam. She asked me a few questions about my recent health (yes, I had been sick about three weeks ago with a pretty bad cold; no, I don’t do self-breast exams because I don’t have a menstrual cycle nor do I have real breast tissue). After finding the lump and palpating it for a few minutes, she reminded me that I had been clear at my checkup in January, and that self-exams are really important. Victim-blame much? (am I being over-sensitive here? No – fuck her). I reminded her that I found this lump while in the shower feeling my own breast, and I had called the doctor’s office immediately. She left the office to call the doctor who was in surgery at the time.

Upon returning, she babbled on and on, waffling between wanting to being over-cautious in my case because of my history and my BRCA mutation, yet attempting to convince me that this lump is most likely an inflamed lymph node related to my cold from three weeks ago (although I do not trust that my anatomy is normal in any way since the mastectomy, I am pretty convinced that this lump is well below any lymph node). She said the office would call me to schedule an ultrasound and then an immediate biopsy depending on what the ultrasound reveals.

Yesterday, in the online portal for my health record, her notes appeared:

An ~ 2 cm mobile, palpable mass is noted laterally at approximately 10 o’clock that is more easily palpated while the patient is upright. There is no overlying fluctuance or skin changes. No fibroglandular thickening. No axillary, infra, or supraclavicular adenopathy.

Obviously I spent several hours yesterday Googling the terms in this note, as well as comparing them to my pathology reports from my double mastectomy and bilateral oophorectomy and hysterectomy, all in 2013, reports from the original mammogram and ultrasound that first discovered the DCIS in my right breast – images taken in December 2012, and pretty much every other document in my electronic medical record.

Based on my research, here is what I think I know (this chart is quite useful, although it assumes a woman with breast tissue, not someone like me who has had a prior mastectomy):

  • the ultrasound should be able to show if the lump is a cyst, and if so, that would be good news
  • if they move on to do the biopsy, then they suspect it is a malignant tumor
  • the biopsy will tell them if the tumor is invasive or not
  • the PA was bullshitting me about the lymph node (swollen from a cold three weeks ago? in my breast?)
  • the PA might be incorrect about the lump being mobile; I’ve been feeling this thing during every moment I’ve been alone since Tuesday, and I am pretty positive it is quite fixed in place.
  • yes, I do think I know more about this stuff than a 23yo PA, at least for now

Ultrasound/biopsy are schedule for June 19th.

5045 days

It has been 5,045 days since I was tested for the BRCA2 mutation (thank you, handy online calculator), the day that began everything I’ve written about on this blog. Today, it is 2,318 days since I had surgery to remove my breasts, thus removing the grade III DCIS found via mammogram in my right breast, and to reconstruct them through DIEP/SEIA.

Since I said I would keep this blog in “real time,” as this story happens to me (since I rarely feel as if I make it happen) I report here that this morning, while in the shower, I found a lump in my right breast, toward the end of the slightly indented line of tissue that follows my lymph nodes into the space that once housed my mammary glands. Here’s a list of things it could be:

  • scar tissue
  • necrosis
  • fibroadenoma
  • lipoma
  • dead fat cells
  • some sort of cyst
  • a benign tumor
  • or, of course, cancer.

Doctor’s appointment in 4hrs, 20min, 23 sec.