Square Two

Ah, the long-anticipated visit to the radiologist today. The idea was to see if my breast-conserving surgery could be given a radiology boost to make another recurrence less likely down the line. As Dr. C., my dashing surgeon, had explained, you usually can't re-radiate breast tissue: it tends to shrink or collapse or do something dreadful under the rays a second time. But with new techniques, it might be possible to do "targeted" radiation and get away with it. A study is underway at Sloan-Kettering, and he thought I might be part of it.

I was sort of hoping not to do it, actually: the idea of trooping an hour each way to the hospital for lengthy periods of time is pretty unthinkable right now. But then, who wouldn't want a boost to one's chances?

This idea was pretty much crushed when the radiologist Dr. M., who is doing the study of re-radiation I would have been part of, announced on meeting me that she'd just reviewed my chart and had news: their "protocol" says they can't radiate after Paget's Disease. She told me why, but to tell the truth, I forget, and I had the impression she wasn't sure herself. It had something to do with the skin, but all I remember is that she remarked that the skin on my breast above the scar was quite good: soft, with a smooth appearance. What a strange thing is the mind, or at least this one: I'm such a compliment hound that I didn't retain the reason for not radiating, but do remember the random and totally irrelevant praise for the surface of the top half of my mutilated breast! Really astonishing.

Then came the bad part. She wanted me to know that since I won't have radiation, and the DCIS was close to the margins of the excision in two spots, I really should have a mastectomy, with or without reconstructive surgery. Dr. C. had warned me that she would say that. But here's the thing: this is what Dr. L, my oncologist said too (the "gold standard"). I asked for hard statistics: she said that would be difficult to come up with. So I asked my Big Question: how come Dr. C. says there is no survival advantage to mastectomy, when there's a greater risk of recurrence? This is what's confusing to me.

Her answer: My close margin indicates there could be DCIS left in my breast: Dr. C. said 10-20% chance of recurrence. DCIS, left untreated, will turn into invasive cancer half the time. So take the recurrence statistic and slice it by one half, because a recurrence of DCIS isn't a big deal. Then take the half that is invasive and say you most likely will catch it early and treat it with the usual stuff (mastectomy and chemo, if necessary). That will grab most of it. But a very small percentage of that will not be cured by the treatments and metastasize, threatening life, killing you sooner rather than later. That's the risk: a percentage of a percentage of a percentage. It's probably life-threatening to only a few, so statistically it doesn't show up when compared to a recurrence after mastectomy.

What's disturbing is that the pro-mastectomy gang clearly feel: why are you hesitating for a breast that's "asymmetrical in size" (as Dr. M. put it) and doesn't even have a nipple? Whereas Dr. C., the surgeon, spins it the other way: why not hold onto the breast and play such good odds?

Now what? I've progressed past Square One = Know Your Pathology, but I feel like I'm solidly back in Square Two = What To Do.

One Order of Gratitude, Please

I sharply remember a moment soon after the diagnosis when I confronted the brutal possibility that this new cancer could be a death sentence for me. It was one of those Lifetime Movie Moments, when you go all Elizabeth Kubler-Ross and bargain : I'll do anything to live. If You (God, fate, the Universe, the cancer itself, those teenage boys in outer space who are using me as their avatar in their amusing video game) will only let me live, I will be grateful... So grateful that I will have a proper sense of perspective on all complaints about the woes of my life, the annoyances and sad absences and worries, the relatively minor discomforts of other ailments and such.

This seemed like such an epiphany that after the tests and pathology report came back with news so good that many patients would rejoice to hear it, I said to my friend, "You know, everyone should go through the interesting experience of thinking your life may be over." He kind of snorted, so I added, "That is, if it turns out it's not." This may be true. It certainly seemed true for a while.

Because here I am, 10 weeks or so past that moment of recognition about the larger perspective that cancer can bring, and I can tell you in all honesty that I cannot hold onto it. It's slipped out of my fingers like smoke and disappeared into the overwhelming desire -- need -- for the mind to orient itself to the normal and everyday. The truth is I am not any more grateful than I used to be, except in small moments when I shake myself and scold that I have got to stop bitching about the usual stuff (as on Valentine's Day, when being no one's Valentine seems particularly, if ridiculously, oppressive). I do not revel in the incredible excitement of just being alive, damn it...except for other small moments, when I actually do.

So much for all those books and movies and guests on talk shows telling us that they "now realize" something-or-other, which "saved" their miserable lives, and how that empowered them to never do Whatever again, which explains why they are So Happy now. I am here to say it has not worked for me. And I can't say I much want to try it again so I can get it right next time.

A Dream, It's Only a Dream...

The title quotes a song by Neil Young...if only. What I mean is that some corner has been turned in my heart, and I have returned to the probably deceptive feeling of normalcy, with its small cares and joys, that I had before the diagnosis two and a half months ago. I no longer feel in crisis, and while my brain tells me that I could be in danger of dying of a recurrence of breast cancer in the future, my mind (more plastic than the brain) says "La, la, la" sort of blithely and refuses to wrap itself around the statistics. Too many other items on the list of worries: will my students give me good evaluations? Will I finish the book, and will the editor laugh derisively when I do? What are the chances I can find the money sometime to help my daughter buy the house she so much wants? Is it possible to protect my five beloved grandchildren from future harm by worrying about them night and day? How do I program THREE reality shows on my DVR at the same time?

Yes, I think I do worry a bit more about my health in general than I used to, and I still do lament that I have some reasons for worry. Plus I'm seeing the radiologist on March 18th, and that should be blog-worthy, as I suspect I'll have to make yet another burdensome and anxiety-filled decision that will have an impact on my life and health. But in general I've returned to floating through the days, doing just enough to keep up with what must be done while never quite feeling I've done enough. In other words: regular life.

The Price of a Breast

Yesterday was my one month check-up with the dashing Dr. C., my surgeon. I was looking forward to this, as I was determined to pin him down on the question that seems to get talked around every time, including with my oncologist: if I don't have a mastectomy, how much more likely am I to die of breast cancer?

Thinking about it since I saw Dr. L, the oncologist, I realized that we had discussed odds of recurrence. Of course, this is salient too: no one wants to go through the wicked uncertainty and discomforts of the experience I just had, even if the results are, happily, a good prognosis. But the more important, the crucial question is simpler and razor-sharp: am I risking death by not having a mastectomy, and if so, by what odds?

Funny how difficult it was to put this question into the clearest and most direct phrasing. While I waited two and a half hours to get into the examining room (he was "backed up", as the receptionists say, which conjures constipation more than crowding), I tried out different versions till I settled on the one above. Meanwhile, patients all around me were tapping their feet, buttonholing staff, and generally in a bad mood about the interminable wait, especially one elderly Russian lady who had originally had a later appointment and had been shifted to a much earlier one, only to be taken an hour after the original time. As for me, I'm an old hand at this, so I know you have to come armed with very long books -- fortunately, I never run out of those I'm supposed to be reading for my job as college professor.

Dr. C. looked worn, and I felt for him: it was dark by the time I saw him, most of the staff had gone home, and there I was with my questions. First he looked at the breast in question, and he was pleased with himself: "It looks as good as any reconstructed breast would," he remarked with innocent pride; I felt like Galatea. "I have a question for you, and I'm going to be blunt," I said when he was done. "Go right ahead," he said generously. After all that mulling over phrasing, you'd think I would have gotten it right. But I only got half the question out when he interrupted me to say that yes, mastectomy is the standard procedure, and the radiologist I'm going to see will probably tell me the same thing as Dr. L, but he thinks it's okay to save the breast. I mentioned statistics for survival versus reccurence, but his answer was confusing, and he was in such a rush (poor man, I don't blame him) that there was no time to parse it out.

Basically what he seemed to say was that my chance of getting a life-threatening cancer (i.e. one that has advanced too far to "cure") is less after this surgery than it was eleven years ago, because this was DCIS. If I do get one, and the chances are low (I could not seem to get him to say how low, and I tried), it would be from the original cancer, not this one. On the other hand, the rate of recurrence from this one could be as high as 10-20% (!), though not life-threatening recurrence. If that happened, mastectomy would be necessary. In sum, he seemed to claim that studies did NOT show a survival advantage from mastectomy in my case, though it would have a recurrence advantage. And meanwhile, I get to keep my breast, such as it is.

And just to complicate matters, even mastectomy would not reduce the risk of either recurrence or survival to zero. Welcome to the wonderful world of cancer.

Which brings me to the question in the title: at what price do I get to have two more-or-less matching breasts? On what scales am I supposed to weigh all this? It's like playing poker for your house, your job, your life, while unable to see all your cards.

On the one hand, there are the odds, which is to say the studies and the statistics they proffer from which the odds are derived, that imply the risk is worth taking. Get into the car, book that trip, cross that street...it will probably be okay, so why not? On the other, there is the worth of that breast...a globule of soft fat (with some scar tissue thrown in and no nipple, in my case) that evens out the bra, the shirt, the bathing suit, the nightie. Why risk anything at all for this hunk of stuff? What's it worth?

I don't know, right now. That's the truth. I'm waiting for March 18th, when I finally get to see the radiologist. Maybe that will shed some clearer light on all this. I hope so. Because I'm flying blind.

Doctor, Doctor, Give Me the News

In a perfect world, when there's something wrong, an expert is there to diagnose it and fix it: and so in medicine, A (illness) leads to B (diagnosis) leads to C (cure). I suspect we all have that in our heads somewhere; it's just a question of finding the right doctor, like finding the right person to marry.

My dear old-world mother, who revered doctors as much as any self-respecting Jewish immigrant, would relate in reverent tones, "And she's seeing a big shot on Park Avenue". We never saw Big Shots, Park Ave or otherwise, because there was no money. We saw sweet Dr. Leban, who had wire-rimmed glasses, never asked questions, and came to our house to deliver a "shot" in the butt to anyone lying on the living room couch with the flu, for which he was paid in cash. Before she could afford that, she took subways and buses to Coney Island Hospital on a regular basis to treat my older brother's asthma in the Emergency Room, as so many poor people still do today.

But I was socially and economically mobile, as she intended me to be, and when I was a married lady with a child in my late twenties, I acquired an actual doctor on Park Avenue. It's not that we had a lot of money; my husband was a lowly Assistant Professor at a public university, and I was a graduate student. But I'd suffered from a misdiagnosis (in an Emergency Room) of an ectopic pregnancy and had to have emergency surgery to save my life. Afterward, the idea was to get nothing-but-the-best, and so I found myself a patient of Dr. Z, a portly (to put it nicely), chain-smoking OB-GYN with a lavish office and a long wait to get in to see him. Dr. Z. had an excellent rep -- yes, a Big Shot -- and you could tell he was beloved by his patients because pretty photos of the babies he delivered adorned the walls of his waiting room, along with gushing letters along the lines of "Dr. Z, we love you JUST BECAUSE YOU'RE YOU!" My friend DK will testify that I'm not making this up.

Anyway, when I entered my forties, an odd thing happened: unexpectedly, my periods stopped coming regularly, and then, at age 44 or so, not at all. It seemed too early for menopause, but that's what it was, apparently. Dr. Z. said not to worry; he had just the thing. All I had to do was take this prescription for HRT -- hormone replacement therapy, a combination of estrogen and progesterone -- and I would not only avoid the symptoms of menopause (none of which I actually had), but it would be good for me in every way. I remember something about prevention of heart disease and dementia, not to mention looking and feeling young till I was 120 or thereabouts.

Cut to age 53, when I'd been taking this little pill daily for nine years. That's when I was diagnosed with breast cancer, and before I knew it, it was all over the paper: major studies had shown that taking HRT for more than five years was definitely correlated with a higher risk of breast cancer (it's now known to be even worse than that). I had an estrogen-positive tumor, too, meaning this cancer was fed by estrogen. This was appalling, but how could I be mad at Dr. Z? It wasn't his fault, right? That was the wisdom of the day. However, I remember that while I was taking HRT, an aunt once told me her female doctor, who tended to be skeptical about pharmacology, advised her not to take HRT and she had done without it. I remember thinking this was wacky; Dr. Z. was, after all...a Big Shot. On Park Avenue.

The reason I'm thinking about this is that The New York Times ran an article the other day about a new study showing that lymph node resection does not prolong survival for breast cancer patients. Oh. No kidding. Really? Because eleven years ago, when I had my first surgery for invasive cancer, the sentinel node (the one nearest the tumor and thus most likely to be malignant if any are) was removed and found cancerous. So I had another surgery, excising more tissue, and also had twenty or so more lymph nodes taken from under my arm, hunting for the supposedly all-important number of malignant nodes that would tell us about my prognosis. There were no more, so the flesh cut from my underarm and the numbness in the area that makes it a torment to scratch an itch there were for nothing (actually I was very lucky not to get lymphedema, possibly thanks to the skill of the famous Dr. C, my once and future surgeon).

So now you tell me that this wasn't necessary. It didn't prolong my life. It didn't do much at all, except cause more pain after surgery and a deformity in my underarm.

Plus Dr. Leban's shot of antibiotic (though for all I know, it could have been saline) almost certainly didn't help us get over the flu.

This does not raise my level of faith, hope and trust in the medical field, dear reader. I suppose that is the way medicine works, yes. Except that there is a class action suit against the pharmaceutical company that produced the drug I took, because, according to a lawyer who works exclusively on the suit, the drug company suppressed evidence of a suspected estrogen-cancer link long before the study that exposed it. I won't see any of the money, though, if the suit is successful, because I didn't learn about it until it was too late to sue. Put that in your pipe and smoke it. Or rather, don't smoke at all, unless you trust what the tobacco companies were telling you.

Gratifying, Frustrating

I was glad to see my old oncologist, Dr. L, today, partly because I really like her, and partly because I had many questions that my surgeon either didn't want to or cannot answer.

And I did get some answers and learned one or two interesting new facts, which was gratifying. But I didn't find out what I most wanted to know, which was frustrating (yes, thus the title). And there was an awkward moment at which I teared up and she actually apologized for what she'd said. More about that in a moment. First, the answers:

1. Was this a recurrence or a new cancer? Supposedly an recurrence is more dangerous because it means the original cancer cells haven't been eradicated, so I'd like to know. The surgeon was quite vague and seemed uninterested in the question; Dr. L, on the other hand, appeared to give two contradictory answers at different points. First she said that my original invasive cancer eleven years ago had been estrogen-positive, and that recurrences of estrogen-positive tumors tend to peak twice (as opposed to estrgoen-negative ones): the first peak is 2-4 years after, the second around ten years. "So I'm right on the second peak?" I said, amazed because I had never heard this nugget of info before (why? did no one want to tell me to avoid alarming me?). "Yes", she said. So that implies recurrence, right? But later she said it wasn't a recurrence, because it was DCIS rather than invasive, and apparently the surgery, chemo and radiation did wipe out the original invasive cancer. This is confusing. Is the 11 year gap from diagnosis just a coincidence?

2. Why were the mammogram and the MRI just after the diagnosis of Paget's both normal, when the path report showed DCIS? Answer: Because I didn't have enough DCIS to show up on the imaging. "After all, the amount you had was minimal," she said. It WAS? No one had told me that, not even the surgeon. I read the path report, and the word "minimal" isn't on there. "No," she said, "But it says 'a few foci of DCIS found', and that means it's not extensive." So that's good, going on great. But you'd think I would have been told that before.

3. What about the dread "dirty margin"? Dr L said I didn't actually have a "dirty" margin, which means cancer found ON the margin of the excision. I didn't know that either. What I had was a close margin, half a millimeter from the incision. Is that as good as a greater margin? No. The bigger the better. But it doesn't necessarily mean an automatic re-excision either. It's a judgement call, as so much else in cancer treatment seems to be. She did add that the path report says only "one of five slides shows DCIS .5 mm from the margin" -- I'd read that but didn't know that one of five is not considered much at all. What do I know?

4. Hormone treatment: shouldn't I go back on it, given that I was diagnosed with the Paget's one year after finishing my course of estrogen inhibiting drugs? Hmm, she said. Hard to say, she said. There's a study being done now about extending hormone treatment for women like you, but we won't have the results for three years. And if it does no good, you run the risk of osteoporosis, higher cholesterol, and possible heart damage for no reason. So she will consult with other oncologists and get back to me in a few days with their collective decision. Apparently majority rules. Another judgement call.

5. Radiation: this isn't up to her. There's no question that radiation prevents further recurrences after lumpectomies, but the standard is not to re-radiate an already treated breast. "The breast tissue usually can't withstand it at the levels needed to eradicate cancer," she said. Nevertheless, I'm to see the radiologist in about a month: she said the one my surgeon recommended is their best expert on this, so that's nice.

6. My prognosis: this is where we ran into trouble..my tearing up, her apology. She repeated several times that the "cure rate" for DCIS is 98%, which is wonderful, but then added that this is after lumpectomy and radiation -- in other words, for first timers..."So if you can't do radiation, you should rethink getting a mastectomy, because that's the gold standard." NOW? I thought. I'm just beginning to come out on the other side of this surgery, which after all was minimal compared to mastectomy (not to mention breast reconstruction, which I hear is even more painful). Am I going to up the ante now? She saw that I was getting upset, and quickly apologized: "Wait, I misspoke," she said, "Decisions about surgery have to be made in consultation with the surgeon. That's not my call. It's just that it's the gold standard."

Ah, the gold standard! Who wouldn't want the gold standard? Why take silver or bronze medals when you can Go for the Gold? The feeling that I am being cowardly because I hate surgery and want to look normal is distressing; the idea of risk, even a small risk, is dismaying. On the other hand, I really, really don't want a mastectomy right now. I don't like making this decision myself, but I also don't know that I trust Dr. L. OR Dr. C. (the surgeon) or anyone to make the right choice. It all seems so much a matter of luck, a cost-benefit analysis based on unknowns. This is the weird and frustrating part. The answer to every question seems to be "hard to say".

There's Nothing Like the Right Bra, Baby

It should be a song. Because just as all men are not alike, and all boobs are not alike, some bras just make you look and feel better than others.

It's not only small vs. large-breasted women, though; it's women who have been through the cancer mill and come out with one or more boobs that don't look the way they did...and yes, the way they should, in some boob-utopia of the mind. I've been twisting and turning in that mill-of-the-mind for weeks now, waiting and hoping that the poor beaten-up boob will return to "normal" or some semblance of it, and slowly realizing -- not. It's not what it used to be, and probably never will be, and I'd better get used to it, and I'd better be grateful for however long I get to hang on to it (so to speak) at all, and do what I can.

As soon as I returned to work, I went back to wearing my bras. But it was a disaster unless I wore the loosest, maternity-like sweater and crossed my arms a lot. This made me so sad I obsessed about it during a few sleepless nights. Would I have to ditch my entire wardrobe,really? And no more cleavage, ever again?

Then one day I idly found a chat room on breastcancer.org and cyber-spoke to the ladies who happened to be on at the same time. I don't much like real-time chat, but they were great, a true example of people who help each other for the sheer comfort and pleasure of doing so. My thought at the time was that I would buy inserts (like falsies) to put on one side, and didn't know where to get them. The Ladies Online immediately gave me a link, and I bought some. But when they came, they didn't look the way I hoped, and they didn't help with the discomfort I felt when I wore my usual underwire bras. I think it was my daughter A. who advised me to go to a bra fitting store and get a special bra instead.

I was reluctant but willing to try, dreading the process and the results. No one had seen the breast naked except for medical personnel, and I didn't look forward to awkwardness and suppressed embarrassment. So I rehearsed what I'd say when I went into the Town Shop: "I'd like someone to help with fitting a bra, but I have a special situation. I had breast surgery recently." Oddly, I never got to the second sentence, because at the sound of "special situation," a young woman was called from where she was lurking at the back. I told her the deal and she just said sweetly, "OK, let's see." I took off the bulky sweater and bra, and then I knew she'd seen it and probably a lot worse many times before. "Wait here," she said cheerfully, and then came back with just the right bra. It wasn't a mastectomy bra or a modified regular bra, just an actual bra that doesn't have underwire to cut into my incision..instead it has double stitching and support and is shaped in such a way that when it's on, it's really not possible to tell that anything is different -- unless you're staring directly at my boobs, in which case why are you?

I could have kissed her. She was so unimpressed with my freakishness that I felt less freakish. And when I left the store she had also provided me with a lighter and looser version for sleeping (at least till I heal). Plus they weren't very expensive, as I'd expected. And since then I've worn just about any damn thing I feel like. So there. Thank you, Imperturbable Young Lady from the Town Shop, and thanks to the wonder we call The Bra.

Tomorrow is my important first visit with my old oncologist, Dr. L.