Decision Trees

The Monday after Dr. Hwang calls with the initial news from the surgery, we go to have our official post-op appointment in the clinic.

Dr. Hwang greets me with a gentle hug. Never give a bear hug to someone who’s just had breast surgery. I wince a little. She asks if I’m in pain. I say I’m mostly off the Vicodin, but that my breast gotten really swollen in the last 24 hours, and that it hurts. She asks to take a look, and I pull aside the hospital gown to reveal a breast that is as taut as a soccer ball and a lovely shade of deep purple on the lower half.

“Oooh. You ARE swollen,” she says. “I bet it feels like those first days when you were nursing. You’ve got some major bruising. I didn’t realize you were that bruised. I don’t think you’ll be ready to have another surgery in two weeks. We should wait at least a month.”

Apparently, it’s more difficult to operate on swollen tissue. Apparently, it wasn’t such a good idea to help clean out the lower floor of my childhood home on Sunday. I didn’t feel sore then, and I don’t think those contractor bags weighed more than 10 pounds. Well, of course they did! I don’t think I actually lifted any bags. Well, of course I did, a few anyway. I went on a hike this morning with the dog, I don’t think my heart rate got up too high (too much blood pumping around can add to swelling). Well, of course it did! We were walking straight up a hill in Marin County. How I can be so consistently stupid in the same way?

Dr. Hwang pulls my hospital gown closed, and then summarizes the conversation we had last Friday: They removed some tissue. They found some invasive cancer, but it was a small tumor. They got most of the DCIS, the cancer that hadn’t turned invasive yet, clean margins on three sides, but not on the fourth side. Eventually, they will need to go in again and clean out that last bit of DCIS.

She sits back in her chair, looking slim and lovely in a heavily starched lab coat, an elegant gray wool dress just visible beneath. Her legs are crossed, ending in stylish boots with pointy toes, but not too pointy. “I think it’s good news!” she says with a big smile.

My husband Pete, sitting next to me and not saying much, sends off glowering vibes. He kind of smiles back at the doctor, but I can tell he does not think this is good news.

We spend the rest of the half hour appointment talking, not so much about the surgery, but about what what I should do next. There’s a pathology report that still needs to be completed, one test result has yet to come in. What’s in that report will determine the twists and turns of my path.

Dr. Hwang says I need to find an oncologist. She says I should do some research, think about what kind of practitioner I would like the most. She describes three of the UCSF oncologists whom she most likes. One is a world-class research scientist, who deeply cares about patients but is insanely busy. She will meet with me once, and be totally present for that meeting, but then will manage my case through email and nurse practitioners. Another is a man who’s super thorough and tends to see things in black and white. Then there’s a younger doctor, who spends almost all her time doing clinical work, not so much research.

“They’re all excellent,” she says, “But I think you’d like the senior researcher the best. Yes, that’s what I’d recommend.”

Then we talk about possibilities. The partial information we have now is that my tumor is receptive to the hormones estrogen and progesterone, which means that it might respond to chemotherapy but perhaps not as well as others. But the tumor is high grade, meaning the cells were growing like Topsy and looking pretty abnormal. That sort of aggressive cancer does respond to chemotherapy. Plus, I’m under 50, and younger patients also respond better to chemotherapy. We’re still waiting to find out for sure if my tumor was producing too much of a protein called Her-2. If so, I might need to take a targeted drug called Herceptin. And even though my tumor was small, it’s still an aggressive type, so I need to think seriously about chemotherapy.

There are a few things that I already know I will probably have to do: Because I haven’t gone through menopause, the docs will likely recommend hormone therapy, to block the effects of estrogen that seem to make my cancer want to grow. Then I can, joy of joys, rocket into early menopause. And they’ll also recommend targeted radiation on that left breast.

Or, like some women, I can choose to do nothing. Perhaps 75 percent of women who do nothing more will not have their cancer come back. But when I went in for my first biopsy, I only had a 5 percent chance of having cancer. Do I want to live with 5 times that chance of going through all this again in five or ten years. Can I really live with a 25 percent chance of reccurrance?

Pete asks a question about why I need all this other therapy, if the cancer has mostly been cut out. Dr. Hwang explains that surgery and radiation are local therapy. But there’s a risk that the cancer has spread, microscopically, elsewhere. It’s impossible to pinpoint at that level, so treating the whole body system with hormones and cancer-fighting drugs is usually recommended. Dr. Hwang makes a little joke. Pete doesn’t say much, he rarely says anything nasty, but I can tell he’s annoyed.

After we leave the cancer center, he sits in the car like a storm cloud. He says he’s angry, really angry that she’s just handing me off to someone else: the oncologist, the radiologist. “Sorry we didn’t get it all, see you next time!”

My eyes narrow. He says he’s knows it’s unfair, he knows she’s a good doctor, but he’s angry that she didn’t get it all. He asks me to make him a drink when we get home. He rarely drinks hard liquor, and never on weeknights. He says he feels like hitting something. I encourage him to hit the couch. I explain that I’d hold up a pillow for him to hit, but that it might make my breast explode. I laugh. He does not. He sips his drink.

While Pete sits on the couch and tries to compose himself, my daughter Erin and I talk what we might do if I have to be bald. I hate the idea of a wig. It sounds fakey, hot, scratchy, not nice. I say that maybe we could get an artist to draw some pretty design on my head in indelible ink. I don’t want a tattoo, too permanent. But maybe, instead of freaking people out, I could just let them think I’m a freak. Erin thinks it’s a fabulous idea and says that maybe the incredibly pierced and tattooed guy who pierced her ears last weekend might draw on my head. We laugh.

I look over at Pete on the couch. He obviously does not think our flight of fancy is funny. A few minutes later, when Erin is in the shower, he punches the Crate and Barrel easy chair. “Damn!” he yells. “Damn! Damn! Damn! …Why is it such voodoo? …It just seems like they’re guessing. If your lucky numbers don’t come up, well then, sorry!…Cancer treatment is barbaric!…I just don’t want you to go through this. This was supposed to be over! It was supposed to be small!”

I don’t know why, but right now, I don’t feel the anger he does. 21st century cancer treatment is indeed barbaric in many ways, but it’s what I’ve got to work with right now, in this moment. I don’t have choice, and yet, I have many choices.

It’s clear that, to a large extent, Dr. Hwang’s work is done for now. My breast needs to calm down enough to be ready for surgery, which can happen either before, or after, any radiation or chemotherapy I choose to have.

The point is, the decisions are largely mine: Find a surgeon. Decide what kind of imaging and surgery to have. After surgery, choose an oncologist. Balance your tumor’s personality against all the risks. Decide what kind of risk you can live with. Decide what kind of therapy you can live through: Hormones or no hormones, chemo or no chemo, targeted drugs or no targeted drugs. Then choose whether to have the followup surgery first or last. Then find a radiologist. Then, if necessary, find someone to reconstruct the left breast.

It’s like a giant tree of branching decisions. You do your very best to find the very best doctor to advance you along one branch. You put all your trust in that doctor, until you get to a fork in the tree, then you find another doctor, transfer your trust and hope to that person until that specialist pushes you along to another fork. Then a new doctor, a new decision, a new therapy. All the while, you’re hoping that no one will push you out onto a branch that breaks. You’re hoping that someday, somehow, you’ll be able to get back to solid ground. For now, however, it seems that the decision trees stretch to the horizon.


About leftbreast

I have had breast cancer. I was diagnosed at 47, and am now 49. I have finished "active treatment," two surgeries, chemo, radiation, monoclonal antibodies. These days, I only take a drug to suppress my uptake of estrogen, since my tumor was highly reactive to that hormone. I have been married to my husband Pete for 21 years. I have a stepdaughter, Maureen, 30, and a daughter, Erin, 10. I've been a freelance magazine journalist for 20-plus years, covering everything from Chinese foreign policy to Catholic nuns to endangered species. I have had a great life. I have lived in Asia and all over the United States. I have spent nights with tree-sitters in Oregon and with astronomers at the Mauna Kea observatory in Hawaii. I've been to a cocktail party on the poopdeck of a British destroyer docked in Shanghai. I've taken the bus to Tibet, and tramped through the cloud forests of Panama with biologists. A magazine sent me on a raft trip down the Colorado through the Grand Canyon; another sent me to cooking school for a week. I have spent time with celebrities, presidents and heroin dealers. I love my work. I have a loving, supportive family and more friends than I probably deserve. I have had the space and time to camp, ski, cycle, garden, cook and spoil my pets (an Australian shepherd, a German shepherd and a tabby cat). If it all ended tomorrow, I would have to say that it has been a really, really good ride. When I was in thick of treatment, I was simply fighting for more time. Now, I'm trying to connect the experience of cancer with the rest of my life, with the time that's been won. I hope the cancer never comes back, but if it does, I'll be ready. That's what this blog is about.
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1 Response to Decision Trees

  1. Catherine says:

    Can I just say it again? Cancer sucks. Breast cancer sucks. I feel for Pete, and for you, of course. Can I also just say, whatever branch you go out on, get a 2nd opinion (and more, if needed). I did it before the initial surgery, and again with oncologists when trying to figure out how aggressive to be with chemo and other post-surgical tx options. I think it will be helpful to Pete also. (I was told to go out of the hospital system I was in to get 2nd opinions; just like you did in NYC.)

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