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adjuvant chemotherapy, BRCA1, BRCA2, Breast Cancer Treatment, Chemotherapy, Cytoxan, insensitivity, medical oncologist, Mo Mowlam, Oncologist, Oncology, Oncotype DX, Patient Empowerment, possibility of progression, Recovery, Recurrence, recurrence number, second opinion, Tamoxifen, Taxotere, TC
Decision made. At 9:45PM I took my first 20mg of Tamoxifen, having spent the better part of the weekend prowling every corner of the Internet in hopes of finding someone to validate my decision, to tell me unequivocally that having weighed the relative merits of treatment with or without adjuvant chemotherapy, Tamoxifen would be enough. Enough for me not to die from cancer. My head is teeming with highly inventive usernames and passwords for me to hide behind so I can post anonymous questions for nameless experts on the Johns Hopkins Breast Cancer Center or loiter expectantly on online discussion boards. I have poked around the Stage II Breast Cancer forum of one such website, hoping a 48 year old woman with the exact same story as mine will raise her hand and let me copy her notes. When all of this began to feel overly clandestine, I threw caution to the wind and registered using my real name. Signing my name wasn’t the first-initial-last-name standard to which I am accustomed. An ironic pedigree, it included in the following order: date of diagnosis-type of cancer-size of tumor-stage-grade-node involvement-estrogen and progesterone positivity-HER2/neu status. As such, it brought to mind one of the more bookish teachers from my childhood who had what my parents described as a “a string of letters after her name.” I must confess, by this stage in “my journey,” I had not yet memorized the line and lineage of my particular cancer and had to resort to looking up the answers in my pathology report. For extra credit, I added my negative BRCA1 and BRCA2 results and the Oncotype DX number which had thrust me into the bowels of Google in the first place. Twenty-one. My “Recurrence Score.”
For the first time in my life, I was hoping for a zero on the test – zero chance of distant recurrence. Too much to hope for, I’m afraid, given what I am learning about breast cancer and the culture of low expectations in which it has languished. One only has to look at how far we haven’t come in figuring out what causes it. When the usually cheery nurse called to tell me that I am a “21,” she was matter of fact, informing me that I am in the “grey zone,” in “the intermediate group of ladies.” Sensing my disappointment, she sort of reassured me, “Doctor said 21 is a good number.” Pause. Doctor had also said I would probably not need chemotherapy.
Enter Greek chorus, stage left: “But you never know … ”
Still she wanted to send me to the MO, the medical oncologist. Previously, MO would connote a school’s Maintenance and Operations budget or, more poignantly, would bring to mind Former Secretary of State for Northern Ireland, Mo Mowlam, taken by a cancer she tried to hide from members of the tabloid press who, unwittingly, made fun of her appearance. The new MO in my life would probably – not definitely – not recommend adjuvant chemotherapy along with Tamoxifen. When I saw my surgeon, on Valentine’s Day, she reiterated that 21 was absolutely a “good number.” We looked at the charts and graphs on my Oncotype DX report, and I read the section which explained that in the Clinical Validation study which included 688 female patients with Stage 1 or II, Node Negative ER-Positive breast cancer who were treated with 5 years of Tamoxifen, those patients with a Recurrence Score of 21, just like me, had an Average Rate of Distant Recurrence of 13%. A light bulb went off when I realized that “distant” was not a euphemism for “far, far away,” like the “happy land” we sang about as children in Sunday School. No. “Distant” represented liver, bones, and lungs – distant places on my body where the cancer may reintroduce itself.
I nodded sagely as my brilliant surgeon showed me how the graphs flattened out, pointing out what I interpreted as a barely negligible benefit of adjuvant chemotherapy for “21s” who were also taking Tamoxifen. Still, she wanted the MO to confirm her assessment, reminding me she was “just the mechanic or the plumber,” not the expert. So another appointment was made.
Three days later, on a sunny Friday morning, I was waiting again in a windowless waiting room. In my entire life, I have never waited in such a room, at the intersection of disease and treatment. Every time the door opened, I saw one more reason to rage against cancer and its attendant therapies. How I ached for one woman in particular. Thin and stooped, she shuffled in, attached by tubes attached to a bag on the shoulder of a weary and worried spouse. Every single person in this room was shackled to some aspect of this disease. I wanted to flee.
Clearly, everyone there had been there before, well-versed in a drill that was foreign to me. They waited, their names were called, they disappeared with a nurse, and within a matter of moments it seemed, the appointment was over. How could an appointment be so brief, I wondered. Or had I lost all sense of time? Were these chemotherapy appointments? What exactly was chemotherapy? What did it entail? How could I rail against something about which I know so little?
When it was my turn to register as a new patient, the woman at the front desk greeted me wordlessly and instead took a digital picture of my confused face. Next, she asked for my insurance cards, one of which she dismissed as not being a medical insurance card, even though it most certainly was. Perturbed, I argued with her which forced her to send for reinforcements, including someone in scrubs who loudly proclaimed, “Well, it doesn’t look like a medical insurance card,” and while they passed my card around, shaking their heads and raising their eyes to the heavens, my mind raced, trying to calculate the damage done by cancer to the people within and beyond the walls of this room.
Soon enough, I was ushered into a small room, where I waited for the MO. Assertively, she bustled in, shook my hand, perused whatever was on her monitor, and made a comment about my “impressive” family medical history before telling me to undress from the waist up and that she would be back in to give me her recommendations. It was all so quick. I knew the waiting room was full of sick people who needed more attention than I did, so I felt guilty craving more quality time. Nonetheless, I was irritated that this oncologist, whose business card assured me that she was Board Certified in Haemotology and Oncology, had, within minutes, failed a fundamental requirement for a healthy doctor-patient relationship. She hadn’t asked me how I was doing today, how I was faring on my cancer journey thus far. In spite of being billed more than $80,000 by this point, it still hadn’t dawned on me that all these appointments, which required me to drive over hill and dale, were actually part and parcel of a service for which I am paying one way or another. Still polite and passive, I hadn’t yet learned what to do or say when confronted with an outward lack of compassion from a learned oncologist who may have been the best in the world in the treatment of tumors but, based on this brief interaction, fell short in the treatment of people. Specifically, the treatment of me.
She bustled back in, examined my reconstructed breast and the angry hip-to-hip scar. She asked if the surgeons had talked to me about the lesion on my liver. Oh, they hadn’t? Well, did I realize I had a 0.6mm lesion on my liver? No? Well, it’s probably nothing. They also didn’t tell me about the cyst on my kidney that’s “definitely nothing.” So why exactly are we entertaining this discussion? I was beginning to wander off into a new land of ominous-sounding lesions and cysts when she directed me to sit up and get dressed. I obeyed. She disappeared without saying anything, then reappeared with her recommendation that four cycles of Third Generation Chemotherapy would be in order. What? She handed me a printout from Adjuvant Online, with “Shared Decision Making” emblazoned across the top of the page. Oh, the ironies just keep coming, and she explained to me, as though I were a recalcitrant first grader, that if there were 100 women in the room, 11 of them would be alive because they had taken Tamoxifen along with adjuvant chemotherapy. So would I be in the group of 11? Well, she couldn’t answer with surety. Could she talk to me about the quality of life for the 11 women (one of whom may or may not be me)? Well, she couldn’t tell me that either.
Without warning and shocking even myself, the words flew from my lips, “I am not doing chemotherapy.”
Without missing a beat and a swift acknowledgement that she respected my opinion, the MO smoothly transitioned into a lecture that included a litany of available options. I just couldn’t tell if they were available to me or if I should even be paying attention. In addition to describing Tamoxifen and its side effects, she also discussed oopherectomy (more new vocabulary), as well as a shot of something to “chemically castrate,” me (presumably Lupron). Chemical castration! I suppose I should be grateful that she sort of apologized for the barbaric language, but my mind was already wandering back to a History of Music class I had taken in 1981. I had learned all about the male castrati of the 1600s, fascinated by the fact that, because they had been castrated, only they could master the technically demanding coloratura of the day. Of course, I also reminded myself that this was a treatment recommended for pedophiles.
By the time MO was detailing the side effects of the Aromatase Inhibitors to be taken after two years of Tamoxifen, I was nodding like my daughter does when I ask if she has cleaned out the cat’s litter box. She handed me a piece of paper on which was printed a prescription for a year’s worth of Tamoxifen and then nine warm pages that explained all the side effects of the four cycles of TC – I had to wait for the tenth page because the printer had run out of paper, as it always does when you’re in a hurry. TC. Taxotere and Cytoxan for the uninitiated. As the printer spluttered out the information, she casually remarked that I could always call her assistant, if after reviewing said side effects, I changed my mind, but to bear in mind that I only had about a month-long window of opportunity. Kind of like the option to buy the extended warranty on a new dishwasher at Best Buy. Panicked, I glanced at page four and, of course, my eye landed on the list of mustard gas derivatives that included Cytoxan. What? Meanwhile, the MO was explaining that, to make all of this easier, they would install a port in me, but she didn’t explain what a port actually was and what would be made easier or if it would be easier for “them” or for me. Come to think of it, she never actually explained why chemotherapy would be of benefit to me. Me. And I wasn’t quick enough to demand an explanation. It was as if I had been struck dumb.
All of this is what led me, exhausted, to the online discussion boards, second-guessing myself. In other areas of my life, indecision and ambiguity abound. I always perform poorly on multiple choice tests and fail spectacularly when it comes to following directions to anywhere I haven’t been more than twenty times. I will fret over whether to turn left or right, then turn right and, after a while, look over my shoulder and realize I should have turned left. When my best friend, Amanda, and I go out shopping or to see a movie, we always have dinner afterwards, because we both know I take a long time to order, agonizing over the same salad I always order, something completely different, or what the hapless waiter would order if he were me. But driving directions and menus are trifling compared to a Big Decision like choosing not to partake of chemotherapy. Surely this would be different. No. The stillness I had anticipated following the decision made, eludes me.
Not too long ago, an acquaintance told me, “Chemo is tough, but you are too.” I have tossed that around in my mind and come to the realization that I am not tough at all. I am worrying about having made a mistake rather than basking in favorable odds. In spite of knowing that, between them, three of the finest surgeons removed all the cancer that could be detected, and when I woke up almost 8 hours later, ensured I had a new breast; and, in spite of knowing I am alive and in a home that is drenched with sunlight in the middle of February, I am preoccupied by what comes to visit during those unguarded moments, troubled by the decision to dismiss chemotherapy. Was this a decision based on the Oncotype DX Recurrence Number or can it be attributed to some heightened intuition, some special gut instinct. Worse, did I make this decision because I was afraid to lose my hair, the hair on my head, that if it were to fall out, would expose me as sick and vulnerable and dependent?
My surgeon would later ask me if my experience with the MO was like being “on a human conveyer belt.” Yes. And so my committed and compassionate surgeon called me at home one night and stayed on the other end of the line until she was assured that I understood that it was important and the right thing for me to pursue a second opinion, a third opinion, a fourth if necessary. By the end of the next day, her assistant had scheduled an appointment with another oncologist.
To be continued.
Isn’t it shocking how difficult it is to assimilate all this information in order to arrive at a decision? Makes me wonder how illiterate or other educationally disadvantaged woman can ever hope to make good informed choices about their treatment. – and about their outcomes. I wonder has anyone done any research on that! In your case Yvonne, for what its worth, I believe a woman’s instinct is usually right..
Deb – it makes me so angry. I can learn how to navigate my way through cancer country, learn what all the acronyms stand for, weigh all the opinions that are laid before me. … a disease that does not discriminate, while countless others have no health insurance, no access to information, no choices, no power. So unfair
Your description of the waiting room reminds me of the one trip I made with Jefferson’s family to the oncologist. This was about a month after his initial surgery. I was in the room when the doctor told him he would die from cancer but still recommended chemotherapy. It was so final, and matter-of-fact. When they wanted to inspect his incision, I excused myself out to the waiting room, alone. I remember reflecting on the news while watching countless patients enter and exit the waiting room, all at different stages in their “journey”. I wondered how many of those patients had also been told they would die, and yet they continued to “fight”.
About a month later, Jefferson was back in Oregon and joined his dad at one of his chemo appointments. He told me about a woman who was there, alone – no family, no friends, no one to accompany her during the four hour ordeal that is the beginning of the chemo cycle. Jefferson spent time talking to the woman, getting to know her. At one point, she asked him to take a picture of her with her phone, hooked up to the machine.
Knowing what I know about the “chemo experience”, I am SO glad you have chosen an alternative treatment.
Oh, Amy, your comment reminds me of all the “collateral damage,” the untreated caregivers, the onlookers in waiting rooms, the friends and family who go to appointments to listen and provide moral support, the people like Jefferson who take the time to get to know a stranger hooked up to a machine, all by herself. I’m quite sure he will never forget the woman whose picture he took, as I am sure she will never forget him.
Oh Yvonne, I have so been here..not just with Tamoxifen, but weighing up risks (as if I could ever make sense of it) when it came to other decisions which I knew could affect my fertility outcomes. There is no easy answer – if there were I would give it to you. I took Tamoxifen for 3 years, with no side effects, but I came off the drug to try for a baby (but that’s a whole other story!). Things get less confusing as time passes..that I can promise you.
Oh Marie, the entire “if this, then that,” aspect of this wretched “equal opportunity” disease makes me so angry. It is simply not right … having to consider the cancer, the risks of treatment and fertility. Wow.
Truly, I have no idea why I’m even trying to understand some of this stuff …It makes my brain hurt. It reminds me of when I was a teenager, trying to understand chemistry. I’d read and reread and learn it by heart, but I still didn’t get it. So yesterday, I found myself doing the exact same thing, re-reading and re-reading sentences like this: “The phosphorylation cascade can activate either AF-1 on ER-alpha (ERα) directly or the excess of CoAs in a high-ER environment. Reduced levels of ER prevent the signal transduction pathway and promote antiestrogenic actions in a surface-silent cell.” Why am I even reading this??
For what it’s worth, my oncotype score was 20; I elected to do chemo – and it wasn’t *that* bad. Sucktastic, by all means, but doable, four rounds of Cytoxin/Taxotere.
But the permanent ‘side effects’ are killing me now. I could handle cancer with a fair degree of aplomb and grace (IMHO) but *this* – this is utterly wretched, effects they never warned me about, and I missed in my research. I hate myself for that mistake – and there’s no rewinding the time. There are no ‘do-vers’.
But if I could, I would – and this time I’d choose not to do chemotherapy.
I entered chemotherapy a relatively healthy woman, albeit one with a recent cancer diagnosis; I came out the other side distinctly unhealthy. Not everyone has the effects I got, but I know my body, if I had realized, I wouldn’t have.
Your comparison to the castrati is horribly accurate. Only, for me, it’s not just the amputation of my sexual self but a complete systemic change, a cascade effect – nothing is working as it should. Besides the physical symptoms* – which are quite bad enough – it also dumped me into severe and horrendous biochemical depression.
I can’t tell you what to do – and I am probably close to a worse case scenario as far as delayed reaction, this I know – but I can tell you that although chemo is tough, what comes after can be much much tougher. I cannot sustain this as my QoL.
Follow your heart and your head, know that whatever you choose is the right decision for you.
*dry mouth – I *hiss* and clack like an old lady, nothing tastes right; dry throat; dry eyes; drying of all mucous membranes to the point where my genitals are continually uncomfortable or painful; loss of libido (well, yeah, everything *hurts*); weight gain – I never gained weight in my life; slowed digestion; joint stiffness; etc.
the worst is the crushing depression – which is not PTSD, or grief, but pure biochemical fuckery.
I am so very sorry and quite undone by what you have written. I am stopped in my tracks today, to read (and reread) how cancer and chemotherapy has wreaked such havoc upon you, all of you Harrowing. I can in only the tiniest of ways relate in that I think I know my own body. I fear the things I missed in my research too.
Your writing is searingly honest and, while the reason for it is wretched, I am deeply moved by the collision of our experiences in this virtual reality and that you took time to encourage me to follow my heart and my head.
You are not alone.
Reblogged this on time to consider the lilies.
Yvonne, I missed this post last year so am glad you re-posted it. I fell into a similar camp as you in that I too said no to chemo. I had a Grade 1, ER/PR+, HER2- cancer; my Onco Dx score came back at the high end of low-risk (16). My MO told me the risks of chemo outweighed the benefits. I know my body; I am highly sensitive to drugs. I had a gut-level feeling that chemo would destroy me. So I opted for a bilateral MX (with recon) and Tamoxifen, which I’ve been on for nearly 2 years now.
But about 6 months into my Tamox regimen, I got scared and questioned whether my MO was really “all that.” So I got a 2nd oncology opinion. This new MO, upon learning that my cancerous mass was 3.2 cms, immediately said “You definitely need chemo.” Then he asked who my current oncologist was. When I told him, he said, “Hmmm. Dr. D. is one of the best. He doesn’t think you need chemo?” And with that, my husband and I high-tailed it out of there and never looked back. I felt confident that saying no was the right decision for me.
We are all different; we each have our own internal voice. This cancer crap, if nothing else, teaches us to do our research, question our doctors, and listen to our guts. The gut always knows.
Hi Renn
, Wow. I didn’t realize our story was so similar. Did you do DIEP flap too? I was so glad to get away quickly from that first oncologist!!
Well, it’s been a year since i started with Tamox then switched recently to Arimidex, but the side effects worsened. So now working with oncologist to figure it out … so I might be returning to Tamoxifen. It’s just so frustrating, when you want to be done already!
I trust my gut on the chemo. I just know it would ruin me.
Y
I barely got through the first few paragraphs when I found myself skipping to the end – HOPING that the end would be “I got another medical oncologist”. You definitely need a doctor that will be your PARTNER in this – not just spew information. Wishing you all the best and hoping that you find a medical oncologist that will work not only with you, but for you.
Honestly, it wasn’t until I started paying attention to what people were saying on #bcsm and writing in their blogs, that I realized how passive I have always been in my own healthcare. The notion of being a partner in it was completely foreign to me. Before all this, I would just take my ailments to the doctor the way I would take my car to the shop. Definitely not an empowered consumer of medicine or auto mechanics!! So thank YOU and all at #bcsm for teaching me about the importance of being a partner in my own healthcare. And, yes. I now have a wonderful medical oncologist who listens and helps me understand, prepare for, and treat what comes with this.
Thank you
A absolutely fascinating post, Yvonne, which I missed the first time around. What a depressing post (though sometimes blackly funny – love the ‘Shared Decision-Making’!!!). I hear you about how overwhelming these decisions – and all the information-seeking that comes with them – can be. I actually decided early on after diagnosis that -already overwhelmed and not thinking with optimal clarity – I would take the approach of throwing my ‘research’ into finding a great medical team….and would then basically throw myself upon them and do whatever they advised. Not completely ’empowered’, I guess, but it worked for me. The downside was that I didn’t feel 100% confident in the treatment available in Darwin (a small place with a brand new cancer centre and no specialist breast surgeons – I was also new in town). I had ‘contacts’ in Sydney healthcare circles, though, and exploited them shamelessly for advice. At my first appointments with the surgeon, oncologist and radio-oncologist at my Sydney BC centre, I had had an overwhelming sense that id come to the right people – all three of them were extremely warm and really treated me as a ‘person’, as well as seeming at the top of their professional game. I didnt regret sticking with them, despite the long periods of separation from my family during treatment, as I had such a sense of trust in their judgment. They all recommended chemo (my cancer squeaked into Stage IIB butsome scary ‘Stage III elements’ like involvement of the pectoral muscle)….so I just did it; my Dream Team had told me emphatically it was warranted, so I didn’t even question. Don’t know what I would have done if it had been a borderline judgement call. Chemo was an extremely difficult experience for me, psychologically as much as physically (I had great anxiety about infection), but I seem to have come through without major issues…so far. The prospect of long term effects is bloody scary, though. So glad you were able to call you own shots with so little support at this stage of your treatment….and that you’ve found a new MO!!
Hey Liz,
I totally get what you’re saying about it being funny. Seriously, sometimes I thought I was in a “mockumentary,” especially with that first MO. What a piece of work she was.
Oh, it must have been so hard for you to be new to town AND with cancer. Whoever it was that said if you want to make God laugh just tell him your plans, wasn’t kidding. Hey, good for you on the exploitation of contacts in the know. Would do the same myself. I can only begin to imagine how it must have been when you were away from your family during the treatment. But, as Renn said, “the gut knows.” There’s definitely something to be said for instinct and trust when you’re in this game.
Someone else commented here about the fear … she called it “living in the wreckage of the future.” Isn’t that just brilliant?? I think that is exactly what I did when I was questioning myself about chemo and worrying so much about The Return. You’re right. It is bloody scary. I just hate how when you think you’ve moved on some, it just hits you that you have cancer. Right now.
Hugs
y
PS I’ve never found out my ‘number’ with one of these programs – gave asked my surgeon (whom I adore, its not wrong to say!) about this and he has gently encouraged me to let it go, saying it won’t tell me what will happen to ME….though he’s given me his ‘gut feeling’ number (20% recurrence risk) and is happy to crunch the numbers with me in a program like this if I really want to do so. Have somehow resisted plugging my own numbers in as I’m scared ill make mistakes and terrify myself! Am feeling pretty much at peace with not crunching my numbers at present – my surgeon’s gut has proved infallible so far, so I’m going with that (which is scary enough for me). Don’t know if I’ll feel the need to do it one day, though. Have had such a fraud relationships with stats since this all began!
I only found out the Recurrence Number because my insurance paid for the test, but I’ve been really good about not putting it into any of those programs, because I’ll only scare myself. Again 🙂 I am completely useless when it comes to crunching all these numbers, so thank God there are people on my side who can do it for me 🙂
Sorry for the typos….still figuring out WordPress posting on my iPad and find it hard to re-read long rambly comments!!
No worries.
P.S. When it comes to rambling, you have come to the right place 🙂
Am on a proper computer now and am mortified by all the typos – that was meant to say a ‘fraught’ relationship to stats, just for starters!!! I shall try to resist leaping in next time until I’ve beaten a path between the children to the computer – a much better place for a good ramble!
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