Journey through the labyrinth -- My breast cancer treatment choices

"You know what? I think you're going to be one of those women who just sails through this!" So says my oncologist -- my God, I have an oncologist -- with a practised, satisfied tone. I'll call her Dr. Lee.  

She's a maternal, larger-than-life woman with shoulder-blade-length black hair, huge, quizzical eyes and serious eyebrows that betray a hint of having had to help patients choose cancer treatments (in my case, breast cancer) one too many times.

Doctor knows best
I grin stupidly, all the while seeing, as in a corny movie, a hazy picture of my eight-year-old self in a similar office nearly 40 years ago, where an orthopedist is persuading my parents that I need a spinal fusion immediately. The deal-closer comes when he tells them, "If she were my daughter, that would be my choice," and Mom and Dad grin stupidly, too, thinking, what better endorsement? But the orthopedist's daughter is 12, and I will have an eight-year-old's torso length for the rest of my life.

Decisions, decisions. In my parents' day, you didn't make them. That was the doctor's job. But even my parents have wised up; when I got cancer, my mother gave me a book called Priority Patient. "Take charge of your health care!" its cover blared. When cancer strikes, the spectre of death has a tendency to obscure the fact that you're still alive, and you have choices to make, and homework to do.

Research begins
My first round of decisions came after a mammogram showed a high likelihood of invasive breast cancer and I was booked for surgery. I had 10 days to research a field about which I knew next to nothing. The doctor and nurse at the breast clinic had hurriedly handed me a photocopied sheet on what to expect post-lumpectomy (the option of mastectomy was never mentioned): I'd need to do arm exercises; I shouldn't operate a stove (!). As I stumbled out of the office, nearly rigid with terror, the surgeon said, as though it were an afterthought, "Oh, by the way, I should tell you that this is a very curable disease."

How, exactly, wasn't entirely clear to me. I took the nurse's suggestion that I buy something called Dr. Susan Love's Breast Book, often referred to as the bible for women with breast cancer, which opened up a whole new world, not to mention a formidable pile of questions. I skimmed over the tables on life expectancy with one eye closed and headed for "Treatment Options: An Overview." 

Learning about lymphedema
I knew that step one was removing the lump as well as a hunk of lymph node-containing flesh in my armpit to determine whether cancer cells were spreading elsewhere in my body. Losing a lot of lymph nodes and surrounding tissue can lead to postsurgical discomfort and fluid drainage, along with the lifelong potential for lymphedema, which can cause pain and swelling in the arm and hand. Or not. "Lymphedema is a real possibility," said the surgeon who diagnosed me. "Almost no one gets lymphedema these days," said the surgeon who actually took out my lump.

But Dr. Love's book mentioned that a newfangled technique called sentinel-lymph-node biopsy could make the question moot. It usually involved removing only one lymph node -- the one that, after blue dye or radioactive fluid has been injected at the tumour site, is found to be the first stop on the way to the lymph system. Though it wasn't standard practice, everything I could find on the procedure said its accuracy rate was high -- but only if the surgeon performing it had lots of experience.

Patient takes action
After a bit of phone tag, I spoke to my surgeon on my boss's cellphone from a storage closet at the open-plan office where I worked.

"Sure," he said. "We can do a sentinel-node excision."

"Have you done very many?" I asked, crossing my fingers.

"I'm part of the North American trial," he replied.

Relieved, after I'd hung up, I thought, if it was as easy as asking, why hadn't he told me about this option in the first place?

Scheduling a lumpectomy according to your menstrual cycle
Other oddities popped up in Dr. Love's book, such as the suggestion that the chance of cancer recurrence could be reduced if the lumpectomy were performed at a particular stage in one's menstrual cycle. Huh? I checked out online medical literature late into the night, along with such links as breastcancer.org and the U.S. National Institutes of Health's cancer.gov, as well as "alternative" or "complementary" websites such as annieappleseedproject.org.

The Toronto office of Willow Breast Cancer Support Canada had tons of info, too. The studies I read showed contradictory findings, natch. By that time, I'd decided I was close enough to the supposedly preferred part of my cycle to simply forget worrying about it.

Tape recorder supports memory
When I woke up in the recovery room, the surgeon sat down beside my bed along with my parents, and I signalled Dad to turn on my tape recorder. The doctor balked; I imagine he was afraid of lawsuits or pesky magazine journalists, but I assured him that my motive was simply the conviction that I'd forget 99 per cent of what he said the instant he walked out the door.

Mom and Dad winced as he confirmed that I did, indeed, have an invasive malignancy. I wasn't surprised; I'd already accepted that part. But I was deliriously happy to learn that no cancer cells had been found in the sentinel lymph node.

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A second lump
Then came the punch that would complicate my future decisions: in addition to the 1.2-centimetre lump I had found while scratching myself in front of the TV one night, the surgeon had removed another lump of similar size that was hiding nearby, not visible on the mammogram or ultrasound. 

What did this mean? It took a couple of weeks before the final pathology report was complete, and I took Dr. Love's advice to ask for a copy of it. There are many types of breast cancer, but they're all classified by stages from one to four; Stage 4 is where you really don't want to be. Breast cancer is considered to be at Stage 1 if the lump that has been removed is less than two centimetres across and no cancer cells appear to have spread to other parts of the body.

Chemotherapy and breast cancer stages
Either a larger tumour or spreading cells into the lymph nodes can vault you into Stage 2, which may mean a recommendation of chemotherapy (a concentrated course of powerful drugs that should kill any leftover cancer cells, though they also wreak havoc on other rapidly reproducing cells in your body, such as your hair and the mucosal lining of your gastrointestinal tract).

On my first visit to Dr. Lee, she doesn't mention chemotherapy until I bring it up. "Do you think you need chemo?" she asks. Unlike the male doctors I've had -- whose style is decisive and who would rather have their pubic hairs plucked out one by one than admit they're not sure about something -- this woman likes to think out loud. I find her approach both refreshing and scary.

Stage 1 or Stage 2, tumour grades and menopause
At first she tells me that radiation followed by five years of the hormone inhibitor tamoxifen should do the trick. My tumours were small-ish. I'm a Stage 1, then, I say. She concurs. But there were two tumours. Should we add them up? Some experts would, Dr. Lee replies. So, I press, that could make me a Stage 2. True, she admits. But my lymph nodes were clear. Ah, she says, but you only had a sentinel node taken out. Dismayed, I point out that the false-negative rate is very low. Yes, but that's not the gold standard yet. Maybe, she muses, chemo's not a bad idea.
OK, so I'm at either Stage 1 or Stage 2 -- does that about cover the numbers game? Not even close. My pathology report contains a gazillion other figures. For example, a tumour has a "grade" of either 1, 2 or 3, a measure of how aggressively it is growing. Mine was a 2. More confounding still is my age. I'm 46, and have already begun to experience minor hot flashes and irregular periods. I learn that there is a whole set of assumptions and post-surgery treatments (called "adjuvant therapy") for premenopausal women and another for those who've passed menopause.

Tamoxifen might help
After the numbers come the letters: ER, PR, Her2-neu, markers that express whether certain hormones and proteins can trigger your particular cancer to attempt to take over your universe. These triggers in turn determine which, if any, long-term drug treatments (such as tamoxifen, if you're premenopausal, or Arimidex if you're post) might help prevent a recurrence. I was happy to find I was Her2-neu-negative, but ER- and PR-positive: tamoxifen might help.

But would a course of chemotherapy help, too? On just about every score, I am betwixt and between treatment conventions. Dr. Lee tells me plainly that she doesn't know what to do with me. She takes my case to the annual breast cancer convention in San Antonio and asks several colleagues for their judgment.

Flaxseed to ward off breast cancer
Half recommend chemo, the other half don't. I seek another opinion myself from a breast cancer specialist who has recently been in the news because of his role in researching new hormonal therapies. Less well-known are his studies using ground flaxseed, mixed into muffins, to prevent recurrence. The muffin doctor is charming. "If you were my wife," he says, "I'd recommend chemo." Warning bells go off; I'm eight years old again.

Apparently chemo will give me an extra two per cent chance of survival. But there's chemo, and then there's chemo: an alphabet soup of different drug combinations, administered in a variety of different ways and over different time periods, are on the menu.

Chemotherapy treatment options
Dr. Lee prefers a combination called CMF that takes six months to complete, but with powerful additional drugs, nausea would be minimized, and hair loss is less likely. Dr. Muffin, however, favours a course called AC, which would last only 12 weeks but would make my hair fall out and my stomach wretched. It may also be hard on one's heart. How hard? "Well," says Dr. Muffin cheerily, "if you should have a heart attack when you're 73, you might not survive it."

I would prefer to survive a heart attack at 73, thank you very much. But I make a chart that compares all the side-effects of the two chemo types on offer and I listen to the tapes of my discussions with various doctors and nurses. (Sure enough, several things come up that I didn't hear at all the first time through, or have forgotten.) I meet with members of my family. Finally, I opt for chemo of the CMF variety.

But not before a cousin tells me about the latest innovation: for a few thousand dollars, a company in the U.S. will do "genomic" testing on the DNA inside tumours like mine, which, I was told, would allow them to predict whether I'm among the 20 per cent of women with my stage and type of cancer (I think) for whom it will probably recur, and therefore whether chemotherapy is indicated.

Aside from the effort and expense such a test would require, I'd rather the future remain behind a curtain of hope. I'll simply do everything I can up front.

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Radiation treatment options
By now I feel as though I have two full-time jobs. All of this research has taken a great deal of time, and I still haven't sorted out radiation treatment.
Yes, there are options there, too: instead of the traditional five to six weeks of daily radiation treatments, I could go to Montreal to be part of a trial of something called brachytherapy, in which tiny beads are inserted at the site of the excised tumour and radiated from within during just five days (in fact, a new method will soon be in trials that gets radiation over with on the day of surgery). I make arrangements to take this shorter treatment, then change my mind; since I had two tumours, I decide I'll be better off having my entire breast irradiated.

The PICC catheter
I take a nine-month disability leave from work and book my first chemo treatment -- and find out only the night before (in my addled state, I didn't notice some of the pamphlets stacked in the clinic waiting room) that I'll be getting something called a PICC catheter inserted in my body so that I can have frequent intravenous infusions without repeatedly having my veins poked by a needle.

It's a long tube that will be inserted in my arm and pushed through to a spot very close to my heart. The line will remain there, hanging out of my arm, for six months, and will need to be flushed with a syringe of saline solution every single day by a visiting nurse, unless I learn to do it myself.

Why didn't anybody explain this earlier? In tears, I nearly cancel the entire deal. Then I remember my godfather, who is going into his fifth year with Lou Gehrig's disease, and tell myself to buck up and take my medicine.

Side effects from breast cancer treatment
Three years have passed since I finished chemo. Did I "sail through"? I've never been on a sailboat in my life; maybe that should have told me something. Mind you, on some days I feel like a fraud; there are far worse things than breast cancer treatment (see godfather, above).

Compared with the stories I've heard of other cancer patients' experiences, my actual treatment, though time-consuming (I could never have done it if I hadn't taken a leave), wasn't so bad. I didn't lose my hair, and I threw up only once, though my stomach was constantly misbehaving. The PICC line was a nuisance that got infected near the end -- I learned to flush it myself, which, for a wuss like me, was an accomplishment. Radiation exhausted me, and I got a nasty burn that cleared up in a week or two.

But there are other days when I wish I had sprung for the pricey DNA testing; maybe I could have avoided ingesting those powerful chemicals. To tell the truth, I don't remember a lot of the experience -- and that's the problem. I now see that Dr. Lee purposely avoided telling me about some of the long-term effects of chemo for fear they'd become self-fulfilling prophecies. They happened anyway. 

Ill-prepared for menopause
I thought I was prepared for the sudden plunge into menopause that the chemo would cause, but I wasn't (hot flashes every 45 minutes, 24-7 -- you can almost set your watch by them -- a creaky libido and a matronly 25 pounds that arrived seemingly overnight). I really wasn't prepared for what's known as "chemo brain": not just memory loss, but an inability to concentrate, which -- fingers crossed -- seems to be diminishing. And my arthritis and sciatic pain, which were tolerable, are now much worse, particularly since I switched from tamoxifen to Arimidex.

The bottom line is I feel old and tired, which makes getting back in shape tough. Would my experience of menopause have been the same whether or not it had been induced? I'll never know.

Treatment choices
I do know that I'm still alive. There's little point in asking whether I'd make the same choices knowing what I know now, since the knowing only comes after the choice-making. I feel fortunate to live at a time when so many new treatment options are available; on the other hand, sometimes they resemble nothing more than a slightly sophisticated form of voodoo, as mysterious as herbal tinctures or applying leeches. Becoming an informed patient means confronting a lot of contradictory evidence without the background to comprehend it, and the array of remedies makes one's head hurt.

In his book The Paradox of Choice, psychologist Barry Schwartz explains that just as having no choices can be damaging to our emotional well-being, having too many choices can lead to stress and depression. (On the other hand, a Danish study found that highly stressed women were less likely to get breast cancer than their easygoing sisters. Are we getting into grain-of-salt territory here?) Schwartz quotes research showing that while 65 per cent of people surveyed said they would prefer to choose their own treatment if they were to be diagnosed with cancer, only 12 per cent of people who really had cancer wanted to make treatment choices.

When the hypothetical becomes real, we miss the days when the doctor was always right. Sometimes I envy women I've met who did no research after they were diagnosed, preferring to follow their physicians' lead -- as well as the ones who eschewed conventional science altogether and went the natural route.

Minding the medical studies
In the meantime, I've been taking a low-dose Aspirin every day because I read a single 2004 newspaper headline connecting daily Aspirin to a reduction in the incidence of breast cancer (until, while writing this article, I found a 2005 story reporting that daily Aspirin has been associated with an increase in the incidence of breast cancer). I take a tablespoon of ground flaxseed every day because of Dr. Muffin. In response to other recent headlines, I take vitamin D and, when I think of it, wear an eye mask in bed and stumble to the bathroom at night without turning on any lights (reportedly there's a connection between nighttime light exposure, melatonin production and breast cancer).

I eat a lot of organic fruits and vegetables, along with mountains of cheese popcorn and Oreo cookies, and I don't drink -- much. I shop for paraben-free lotion and shampoo and (occasionally) use a glass water bottle instead of a plastic one. And I'm trying to bring back the daintily waved hand fan as a boomer fashion accessory rather than take some powerful drugs that are thought to prevent hot flashes.

Those may or may not be the best choices -- but they're mine.

Find more inspirational anecdotes from outstanding women with Shared Stories and Personal Growth from our Life & Balance section.

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