Off My Chest

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.

Nomenclature

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.

Matthew 19:24
“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.

However…

…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.


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This entry was written by Kathi, posted on Thursday, October 21, 2010 at 04:10 pm, filed under Diagnosis, Recurrence, Screening, Health & Healthcare, Nitty Gritty, Radiation, Surgery & Reconstruction and tagged , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

10 Responses to “Off My Chest”

  1. First of all, my CAPTCHA code today was AM2P…. and I am going to pee my pants because I am glued to this screen reading my own story over and over and over again…written by someone who is NOT me! Kinda creepy really…

    Of course my lumpectomy really WAS a lumpectomy, but I didn’t get out of chemo as you know. Other than those two 3xI-phone sized details, you have nailed my feelings right down to the head of a certain surgeon, oncologist and Radiation Oncologist.

    There is ZERO doubt in my mind that if I HAD any kind of informed consent at all, I would NOT have consented to this. In fact, (classic If I Had Known Then…) I would be boobless and probably foobless today.

    Yes, I signed those informed consent papers. No question about it. That’s my unique scribble, right there in electric blue. But how do you KNOW if you have been informed when you don’t even know where to begin asking questions? My surgeon laid out the best course of action for me, we talked all about the risks of anesthesia, the possibility that a node would come back positive, how long to wear the bandages… we were so excited that I was even going to be able to do the “short form” rads! (Chemo Brain won’t spit out the term…all I can think of is Braxton-Hicks, which is entirely on the opposite spectrum of this discussion, YAAAARG!)

    Little did I know…

    Amen Sistah. Amen. You just keep right on preachin’ it because one day a woman is going to get to this blog BEFORE she gets back to her surgeon and her choice really will be her own.

  2. There are so many ways that the health care system can prevent this from happening, or at least improve the picture, it makes me spit. One of the most frustrating things about still feeling like crap now is that there are a lot of things I’d like to do as a clinician to improve this, but I don’t have the energy or wherewithal to do most of them yet. But I can do this. And every now and then, I get a comment or email from someone who did get to this blog before having to decide what to do, and found some help and encouragement to ask more questions & insist on discussing more options. And that’s what it’s all about. Love you, Sistahs.

  3. Kathi,
    Big hugs, and thanks for sharing your experience. It’s disgusting how little information we are given while going through the turmoil and panic of a Breast Cancer Diagnosis. All the books in the bookstore didn’t even touch what a real Patient goes through… I also experienced a gougectomy… hematoma… seroma… and shock at how much tissue was taken in the segmental partial mastectomy. I interviewed 5 doctors, and was lucky to find a kind, compassionate Surgeon, who was experienced with Sentinal Node Biopsy. After seeing the numbers, I bought an orange, filled it with grapes and an almond, in order to visualize just how big the thing was… and it was 2 mm from the chest wall, as well. Circulating cancer cells… pain, and ultimately, an attitude surrounded my questions, which made me feel like less than a moron. Surgeons are a strange brew, and legally, medically, they are not required to tell us, the patients, anything! Found this out as I read, researched, and saved every article I could find about Triple Negative Breast Cancer. Sometimes, I felt, and still feel exploited, disappointed, and stunned at how deeply this disease has affected my life, and the lives of millions of women. I was crying the other day, because, I should feel happy, lucky, overjoyed at having insurance, a home, a family, and excellent physicians, while thousands of women don’t have a glimmer of hope. I’ve often wondered, shamefully, how much longer would I have lived without the treatments, and would my quality of life been superior if only the lump had been taken without chemotherapy or radiation?
    I was told by many, that I should be grateful… and whatever I do, don’t look for medical information on the Internet. Emotionally, I could not, would not have survived without the support of women I’ve come to know, like you, who are great sources of understanding, knowledge, hope, caring, and compassion! Thank you, again, (((Kathi)))
    Love,
    Indi

  4. Word, word, word.
    Glad you are a demon.
    How about a 600 word op-ed? I’m not kidding. You should write it.

  5. You know, Jeanne, maybe I will this time. I’m so sick of this crap.

  6. Hi,
    I’ve just had a second mammo (had one a year ago) that shows microcalcifications. Had core-needle biopsy last year, all mc’s removed. Mammo showed no more problems. Then this year’s (last monday) shows two areas of microcalcifications. One larger than the other and about a half inch apart from each other. Doc sent me to a surgeon to do a excision biopsy. Surgeon says she’ll take out as much as needs be using the wires as guides. I’m freaking out. We don’t even have any pathology on these yet, but I’m having what I’m thinking is going to be quite a chunk taken from my breast. I’m having the surgery this coming friday and I don’t know what to do. I’m just freaking! Is there anything you would tell me to do at this point? I want to ask for a core biopsy like last time to be sure first that there is a problem and if there is then do the mastectomy. Is that what I should be doing? Thanks, Elizabeth

  7. Elizabeth, first of all, how did the pathology come back on the microcalcifcations that came out last year? Were they cancerous or benign? It’s hard to have an intelligent opinion about this without knowing that first. Do you feel that you have a good enough rapport with the surgeon to insist on a core biopsy first? And perhaps you can get a second opinion before you do anything else. Maybe postpone the surgery until you get a 2nd opinion. If they’re microcalcifications, it’s not like you need to be in a hurry, even though it’s always hard not to feel a certain amount of panic. But you do have time to think, get second opinions, do some research. Take your time, Elizabeth. That’s the best piece of advice I can give you. I wish I had taken more time. Big hugs.

  8. Hi Kathi, I can’t thank you enough for your help. The path last time was Atypical Hyperplasia. They wanted to put me on Tamoxifen, but I’d read a lot of negative reports from women who had taken it and I thought, ‘I don’t have cancer why do I need to take it?’ The two new areas of microcals are adjacent to the old site and one of them is a tad larger and seems to be increasing at a faster rate. After reading your posts last night and from some others I’ve read online I’m thinking if it is DCIS that I will go with the mastectomy. I do not think the chemo and radiation are paths I want to go down given the survival numbers compared to mastectomy.

    As to the surgeon it seemed like every door to every other surgeon was closed. All of them are out of town/vacation and the final one that was left was ordered to Afganistan! The only one left is this guy who is a general surgeon who does a lot of cosmetic breast work as well as lap-band for weight-loss. He was upset with me last year when I didn’t go on the Tamoxifen. When I went to see him this time he said, And now for round two! He seems to give a damn. He said that he will take out only what is needed as shown by the mammo+wires etc. I so appreciate your advice.

    I’m so sorry you didn’t have the time to gather all the information you needed, but am so deeply thankful that you have made it your mission to help we who have just found ourselves in this awful road to see a little clearer and make informed decisions. Thank you! ((Hugs))

  9. You’re welcome, Elizabeth! Just make sure the radiologist who does the wire insertion with the window paddle on the mammogram provides adequate local anaesthesia, and gives it time to work!! I was not aware that they prescribe tamoxifen for atypical hyperplasia. Hmm. Learn something new every day. Now I want to check on that. I don’t recall any friend with AH who went on tamoxifen. If it’s just DCIS, make sure the path lab grades it. If it’s not high grade, I don’t think they recommend any further treatment these days besides local excision. No radiation or chemo is needed. Although I can certainly understand you’re wanting to consider a mast & not wanting to go through all this every year. Oy…

    I was on tamoxifen for a year but had to quit due to side effects. My med onc agreed with me. In the case of DCIS, it usually only confers about a 7% decrease in recurrence risk. I’m not a candidate for aromatase inhibitors because of family history of osteoporosis. My surgeon (new one) also agreed with that. It all depends on what you can live with, in the end. Good luck with everything & let me know how things work out.

  10. Thanks Kathi. Two medical oncologists, a surgeon, and my GP all wanted me on Tamoxifen a year ago. So, I think in this part of the world (South Texas) it is the standard protocol for AH.

    Thanks again for the info, It’s helping me make better decisions. 🙂

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