WARNING: The truth shall make you hurl — possibly.
You wouldn’t think I’d have trouble dashing off blog posts during Pinktober, would you? But I have. It’s the overwhelming surfeit of potential topics that has had me stymied. There is just so much to say, I don’t know where to begin. I finally decided to pick the subject that’s been festering the longest.
Regular readers of this blog already know that I have something bordering on a demonic obsession with the subject of informed medical consent and its importance to long-term survivorship. And although I certainly don’t need to explain why to most of you, there is a back-story which helps explain how I came to feel so strenuously passionate about it. I’ve already told pieces of it, but not the whole thing. Now I’m finally going to tell all.
Shock & Awe
I really wish I’d hidden a tape recorder somewhere on my body during all my visits to cancer doctors. I might have to do that from now on. And if you’re reading this at the beginning of your own cancer odyssey, you might want to do this yourself. You can get yourself a nice, brandy-new iPod Touch (it does NOT, by the way, come in pink as I’ve Photoshopped it here), which will do the job nicely. You can even video your encounters with it should you so desire. In any event, I did not have an iPod and still don’t, but the following is — to the best of my recollection — an annotated timeline of my early treatment visits.
I could definitely be the poster girl for the value of screening mammography. My own ductal carcinoma was first seen by a mammographer on a regular screening mammogram. A subsequent diagnostic mamm confirmed the need for me to get a biopsy. During that stereotactic biopsy, a radiologist guided by further mammography was able to extract one of the calcifications, replace it with a marker clip should surgery be needed, and send it to the pathologist. The pathologist returned a verdict of positive for ductal carcinoma, a verdict I infamously ended up hearing over the phone. I was quickly sent by my breast surgeon for a breast MRI to get a more three-dimensional picture of the spread of the calcifications throughout my breast, so that she could see them more clearly in order to excise them. She would also discuss my case with the weekly tumor board, which is a multi-disciplinary group of surgeons and oncologists from the major Providence area hospitals who meet to review the diagnostic data for newly-diagnosed cancer patients to arrive at cohesive recommendations for treatment.
When I had my first visit with her following all of this folderal, she gave me a copy of the pathology report and told me that the best way to address my ductal carcinoma was to have a lumpectomy followed by radiation. Women used to have mastectomies for this, she said, and a few still elected to do so, but for someone in my circumstance, lumpectomy followed by radiation was the standard of care and was just as effective as mastectomy in preventing recurrence. And recurrence was the big ugly elephant in the room with breast cancer, so treatment plans were made with a view to lowering the risk for recurrence as much as possible. Thus far, however, she assured me that there was no evidence of invasive disease, which would mean I would not need chemotherapy or surgical removal of lymph nodes. It would be recommended that I go on something like tamoxifen after active treatment, but that would be something I would discuss with a medical oncologist. She could schedule me for surgery in as soon as one week’s time. Radiation would not be started until four weeks after surgery, so I would need to make an appointment with a radiation oncologist during that time. Yes, she could certainly give me some names of oncologists. Whew. Brain melt. But still, it all sounds about as reasonable as treatment for a life-threatening disease can sound, right?
I don’t need to tell most of you how I felt at this point in the proceedings. My normal respiratory rate was just shy of hyperventilation, my heart rate probably only a few beats below atrial fibrillation. My blood pressure, remarkably enough, was normal. The only reason I know this is because it was always taken at the beginning and sometimes at the end of every cancer doc visit I had. Amazing really. But my other vital signs bordered on horrendous. That’s what happens when you’re completely and utterly flabbergasted. Which is putting it gently. Because I work in health care as a clinician, I probably had a somewhat better grasp of the technical details of all this than the average person, but that did nothing to allay my sense of shock and awe. Thank goodness that I have lots of nurse friends, who were all very happy to drive me to these blasted visits and debrief me about them on the way home.
The problem with getting diagnosed with cancer is that no matter who you are and how much you understand, you can’t help feeling like you just want someone to evict this treacherous invader from your body as soon as possible. So, even if you’re not in any danger of immediate death by cancer in the next week or month or whatever, you’re not likely to want to dilly-dally too much before starting the big eviction process. So, being the medically-trained, decisive person I was, I wasn’t so panicked that I wanted to schedule surgery in a week. But I figured maybe two or three weeks would be enough time to plan for a leave of absence from work, get my own patients finished up or transferred to colleagues for the duration, and get all my other ducks in a row. Yet it wouldn’t be so long that I’d turn into a complete basket-case while waiting for my surgeon to get in there and kick the Beast to the curb. Little did I know that already my cancer ship had been steered into stormy waters.
When a breast surgeon recommends a lumpectomy, I don’t know about you, but I expect the excision of a lump. Call me literal, but that’s how I am. Allowing for clear margins — i.e., a good-sized margin around the excised cancer that has no cancer in it — I figured a lumpectomy would involve a hunk of tissue no more than, say, about the size of a marble. A shooter marble, yes, but still a marble. Maybe a golf ball at the worst. So, I figured, yeah, no biggie, and if that’s all it’s going to be, then heck, that’s better than having the whole boob lopped off. When a colleague of mine, a nurse, rather insensitively recommended that she’d opt for getting the whole boob off and skipping the radiation, without so much as a by your leave to explain herself, I was a little shocked, to say the least. Plus, she wasn’t the one who had the cancer, so it was easy for her to say what she’d do when nothing was at stake for her.
My surgeon, over the course of various conversations, certainly did not recommend that course. I asked her a few questions about radiation, but she said I should talk to a radiation oncologist about them. So I called to make appointments with people, but was told that I would not need to talk to one until after my surgery. At this juncture, big flashing lights should have been going off somewhere, with loud sirens blasting. But they weren’t, and frankly, I was too distracted with trying to get through the next few weeks of work, not to mention wrapping my brain around this whole thing, to worry much about radiation. Chemotherapy was the thing that everyone always seemed to dread the most, and I was off the hook for that so far. So I was feeling awash in relief over that, at the same time that I was still stunned to have this treacherous thing in my body at all.
Meanwhile, my driving got a whole lot worse. Since I drive all day for work, this was not a good thing. I would find myself stopped at a stop sign down the street from a patient I’d been seeing for weeks, and I’d forget whether I was supposed to turn right or left. I would pull into a driveway, stop and prepare to get out of the car, but forget to put on the parking brake or turn the key off. So, I’d start to get out, and the car would start to roll. I’d catch it, of course, and jam on the brakes, but it was disconcerting nonetheless. It got so bad that one day, I actually rolled a few feet into a garage door. Unfortunately, this door was made of metal and dented easily. So there I was, awaiting breast surgery to remove cancer, and having to shell out to buy these people a new garage door. After the replacement door was installed, they were completely ungracious about the entire thing. We played phone tag for a few days, trying to arrange for me to drop by with a check. After a couple of days of this, one of them had the nerve to stomp into my workplace demanding to see me only an hour after I had left a voice mail message asking if I could stop by. I was on medical leave by then, and the day this happened, I was out at a doctor’s appointment and happened to stop by the office to pick up some paperwork. I called them once again, dropped off the check, and was done with them. The one I knew thanked me. The one who’d stopped by my office treated me like I’d been trying to leave the country with their precious $500. Wanker.
At last, Boob Day arrived. It was scheduled as an outpatient procedure. Another nurse buddy drove me and was allowed to hang out with me in my little waiting cubicle, until it was all over and she could drive me home. Before surgery was to begin, one last procedure was done, to make a final check of my calcifications and mark the center of the area with a thin wire so that the surgeon could essentially just cut out a sphere around that wire to remove the Beast. This is called wire localization. Sounds straight-forward in theory. In practice? Not so much.
“It is easier for a camel to go through the eye of a needle…”
I journeyed once again to mammography, wheeled in a wheelchair by a short, well-meaning, but extremely annoying aide who yacked constantly and billed herself as the be-all-and-end-all of imaging aides. I formed a different opinion. I got to stay seated in the wheelchair this time while I was positioned before the mammography machine, but my boob had to be squished with a paddle that had a large window cut in the middle. Through this window, at a ridiculously awkward angle, the radiologist would have to apply local anesthetic to numb me and then run this long, needle-thin wire towards the center of the cancer. By this time in the proceedings, it was late morning, I had not eaten since dinner the night before, and I hadn’t gotten much sleep. I had never been a wuss about getting my boobs squished, but when the mammographer made her first attempt to position my breast in the window paddle, she apparently thought my sternum was part of my breast. Had she pulled on me any harder, I wouldn’t have needed surgery at all because my breast would have come off in her hands. So, that position didn’t work, but the damage was done. Tears sprung to my eyes and I could feel a large bruise already forming.
After that, anything short of a gunshot wound would have been more comfortable. My boob was adjusted more comfortably, and I was ready for the radiologist. She, poor woman, was twisted around the mammogram unit, trying to look at the imaging screen, aim the anesthetic accurately, and not throw her back out, all at the same time. She was also muttering. I was a tad faint by then, so I didn’t catch everything she said. But I did hear the words, spoken in some alarm, “The spread is wider; I’m going to have to use two wires to bracket it.” Huh? Had I been more alert at that point, I might have called for a time-out to discuss these remarks. Alas, I did not. The anesthetic did its thing and the first wire slid in uneventfully. The second one, on the other hand, apparently got inserted just outside of the, shall we say, sphere of influence of the anesthesia. It felt like I was getting stabbed. Duh. I was getting stabbed.
Meanwhile, the excessively annoying aide kept wrapping her hand around my throat and pushing my chin up and exhorting me not to look down and to keep breathing. I remember having fuzzy thoughts of committing some kind of violent act toward her later on. I also remember being aware that it would have been a lot easier to breathe had she not had me in a choke hold, and had I not had a large hematoma forming over the inner half of my breast, and were I not being stabbed with a wire without anesthesia. Beads of sweat popped out on my neck and forehead and I felt my vision dimming. I managed to squeak out, “I’m going to faint.” Which prompted immediate action by all three women. At once, the aide let me go, the mammographer released the paddle, and the radiologist wheeled me away from the machine and helped me put my head between my knees. Didn’t do any good. I blacked out anyway. When I came to, all three women were gently daubing me with cold, damp clothes. That felt nice. My head bobbled up, I smiled at everyone blearily and announced, “I think I’m going to throw up.” A pink kidney-shaped basin appeared and more towels were obtained. Since there was nothing in my stomach, all I could heave up was bile. At that point, death or at least a nice IV of Versed would have been welcome.
I won’t bore you with the rest of the blow-by-blow. Compared to the above, the surgery itself was cake. For one thing, I missed all of it and slept like a baby, thanks to that most wonderful of sedatives, Versed. For another, right before surgery, everyone connected with it asked me how the wire localization went. Thus, I got some immediate revenge by being able to repeat my dark tale of torture, one listener at a time, to the day-surgery nurse, her boss, my surgeon, the OR nurse, the nurse-anesthetist, and the anesthesiologist. It was very satisfying to watch each of their faces go from smiling concern to open-mouthed chagrin. When I awoke after surgery, I felt refreshed.
…what I would subsequently discover was that I’d not had what, in my opinion, would qualify as a lumpectomy. The post-surgery pathology report gave the dimensions of the excised tissue as 10.5 cm x 5.5 cm x 2.5 cm, or slightly larger than two of those family-sized boxes of Trident chewing gum. The margins were nice and clear, but the surgeon admitted she’d had to go right down to — but not through — the chest wall. I started measuring various household items after this, and discovered that, besides boxes of gum, the tissue she removed came out to be the exact dimensions of two of my cell phones, stacked on top of one another. If you go back to the top of this post and refer to the iPod, which is shown life-sized, and imagine stacking three of them on top of each other, you’ll get the idea. To my way of thinking, this does not constitute a lump. More of a slab, I’d say, at the very least, but they don’t have the term “slab-ectomy” in the ICD-9 Code Book. Much later, I would discover that all partial mastectomies, no matter how extensive, are referred to as lumpectomies. Huh. One might not think it possible, but I can tell you that it is indeed possible to develop an instant, murderous loathing of medical euphemisms. I was glad the surgeon was able to tell me she had gotten it all. But for a B-cup girl, losing that much breast, without being so informed of the possibility beforehand, was nothing less than appalling, and on many levels at once. For months afterward, it seemed like it might not perhaps end up looking as dramatic as my old breast minus two cell phones. Once all the swelling went down and I’d been subjected to the shrinking influence of radiation, I repented my optimism. And I was devastated.
Here’s the thing. My insensitive nurse colleague turned out to be prescient after all. Had I known how much of my breast was going to be removed, I would have considered a mastectomy while I was at it. Had I known how adversely radiation was going to affect my life — and is still affecting my life — I would have wanted to avoid radiation entirely, which a mastectomy would have accomplished. But I was not given the opportunity to make that choice. Or any choice, really, except the main one. I did choose to live, to treat the cancer and survive it. It just would have been nice to choose perhaps a way of surviving it that might have had less impact on how I survived.
And that, girls and boys, is why I became a demon about informed consent.
Please click on the post title or the comment link below to post a response.