We had hoped that we would never have to get to this point, but here we are: In the UCSF Breast Care Center waiting for my appointment with the medical oncologist. She’s the one who will analyze the small tumor they found in surgery and decide how to weight the genetics and hormonal personality that the pathologists find in it. What do those genetic markers mean? Does the tumor grow quickly in response to hormones like estrogen or to growth factors like Her2-neu?
We drag daughter Erin along because she’s home sick from school and too young to leave alone. We’re hoping that she’ll agree to sit in the waiting room, or that she won’t really understand everything. This is not an optimal parental choice, nor is it very realistic considering Erin is a human tape recorder and has been more clingy since the move and the cancer. But we don’t have a nanny so there is no alternative. Erin brings an audiobook on an iPod and a stack of Simpsons comic books.
After the usual stop at the weight-blood pressure-temperature station, a medical aide leads me into an exam room that is beginning to seem awfully familiar. I think they always take me into the same one. We wait a while, until two women, an oncology fellow from Australia and a med student, come in. They’re students of the oncologist, Dr. Hope Rugo. (Again, I’m not using full names in my blog, but Dr. Rugo, like Dr. Hwang the surgeon, is a well-known authority on breast cancer. She seems quite public besides: speaking, researching, collaborating, being quoted in lofty publications like the Wall Street Journal and being filmed for YouTube with my surgeon, Shelley Hwang. How she has time to be an acclaimed teacher and to see patients like me, I can’t fathom. These high-powered breast cancer docs must never sleep.
We chat with Dr. Rugo’s students about Melbourne, the fellow’s hometown, and how crazy American politics is, and restaurants in San Francisco. Then, they proceed to take the most detailed medical history that I have ever been asked to give. They ask many questions common to the breast cancer routine: Date of first menses? Periods still regular? Allergies to drugs? But they also ask careful, detailed questions about every system in my body, every operation I have ever had (only one prior to the lumpectomy), every drug I take or have taken, all my habits of exercise (not as much as I should, but fairly active) and diet (too much butter and mayo, but plenty of veggies) and alcohol consumption (moderate) to recreational drug use (almost nothing for 20 years). They ask about my cancer case so far, mammograms, biopsies, ultrasounds, MRIs—when were they done? What were the results?
Then they drill even down deeper: Do you have any bone pain? Do you have any aches which seem to be new? You have cough-variant asthma, have you noticed any coughing lately? Any skin changes? Mood changes? Sleep changes? Weight changes? If you get cold sores, have you noticed a lot more of them lately? You had migraines in pregnancy, have you had any since then? Any recently? After a while, I begin to realize that they’re looking for clues to any possible metastases, any little tip offs that might indicate that my small, but aggressive, cancer has set up shop somewhere else in my body. With minutes added for all the times I go off the reservation and ask the medical students about themselves, and comment on the state of health care and the body politic and so on, the interview takes well over an hour.
Then, they leave. They’re gone for about half an hour. I presume that they’re “presenting” my case to Dr. Rugo, drawing her attention to any little details they think noteworthy and then explaining why they noticed those details, and then getting reaction from Dr. Rugo, all of them trying to bring my case, my cancer, into focus. While they’re gone, Erin, the pre-medical intern and Harvard grad who’s been taking notes for us at big appointments comes in with her computer, her thumb drive recorder and the list of questions she and I prepared during a phone conference yesterday. She seems like a familiar friend by now, and we all chat about the hospital Halloween costume contest until Dr. Rugo, the medical fellow and the medical student return.
Something about Dr. Rugo just inspires confidence, and it’s not just because her first name is Hope. Under her starched medical coat, she’s wearing a bright pink dress shirt accented with fabulous jewelry and she greets us warmly. Patients have given her the pin on her lab coat lapel and a bracelet coiling around her right wrist. She must be able to connect with people. Yet she also seems somehow very commanding, analytical and businesslike. That’s a combination you want in someone who’s going to make sense of the dizzying pathology and the array of chemical cocktails we have to fight it.
Like a good trial attorney, she sums up the case so far: ductal carcinoma in situ (DCIS), invasive carcinoma, surgery on September 7. She sums up the pathology so far: Tumor .9 centimeters. No lymph node involvement. Tumor is high-grade (meaning it’s the most aggressive type). It is very responsive to estrogen, not really responsive to progesterone. The Her-2 (human epidermal growth factor 2, which affects how fast the tumor grows) result is “indeterminate.”
She explains that a committee got together to try to determine rankings for Her-2, and like most committees, it came up with a solution that pleased no one, a middle range Dr. Rugo feels is a bit too wide. My tumor is on the high end of middle according to the committee’s standards. But if it had been a different committee, perhaps the tumor would definitely be Her-2 positive. We outsiders like to delude ourselves that healthcare is definite, concrete, knowable. Yet it is really just a constellation of humans and human organizations.
Dr. Rugo figures out that I’m interested in the science and know what cytoplasm and RNA are, so she launches into a detailed discussion of the tests necessary to find out the exact level of nastiness to assign to my tumor, now cooling its jets in a UCSF freezer somewhere. She talks about how RNA, the single-stranded string of phosphates that makes it possible to carry out the directions in DNA by making proteins, doesn’t stay around for long. It stays in a cell just long enough to help create the needed protein coded in the DNA. Then it fades away like an assistant director, and lets DNA take the Oscar. Thank goodness, because if all the RNA stuck around, proteins would proliferate willy-nilly, all over the place. Another word for that is cancer. So that’s why doctors freeze tumor tissue. If they didn’t, the RNA would disappear quickly, and the RNA yields clues about the tumor. What proteins is the RNA helping to make and how fast? What does that imply for the cancer’s future, about my future?
Then Dr. Rugo talks a bit about cancer genetics. She says they’re really crazy. An extra chromosome can cause Down’s syndrome. Cancer makes that look like child’s play, apparently. I’m not sure of all the details. I’m sure I can understand them eventually, but not yet. About halfway, Dr. Rugo starts to go really fast, and my comprehension goes from about 95-100 percent down to about 60 percent. I catch the gist, but not the details. I can’t wait to have some time to listen to the audio recording that pre-med intern Erin took, slowing it down to non-doctor speed.
I’ve said for years that you can’t just find the cure for cancer, because it’s not one disease, it’s 400, it’s 500. And as I sit listening to Dr. Rugo explain all the markers and genetics and the way cancer cells behave, all I can think is that it’s like two giant, dueling webs: a web of different kinds of cancer cells, and a web of drugs to fight them. I remark that the choices seem endless, and Dr. Rugo looks at me as if she’s just a tiny bit disappointed in this patient-student.
“No, for your cancer, there aren’t that many choices,” she says. “It’s pretty clear.”
Like a journalist, I am talking about the big picture, my impression of the field as a whole. Like a good scientist, Dr. Rugo is focusing upon specifics.
Here’s the clear upshot about my breast cancer. “If this tumor was 2 centimeters, we wouldn’t even be sitting here talking about the decision to do chemo, I’d be outlining your chemo regimen,” Dr. Rugo says.
I make it clear that I do not want the treatment that is easiest, I want the treatment that makes recurrence the least likely. I’ve got a kid sitting over there buried in a Simpsons comic. I want to know her children.
“My feeling is that I’m going to recommend a short course of chemo, but let’s wait for the test results to come back. We should have them this week, and then I’ll be in touch, and we’ll talk it over,” she says.
I’m pretty sure chemo is in my future. I’ve thought that since the first pathology came back from surgery. So here are some things that are likely to be in the mix:
Taxotere: This is a plant alkaloid that attacks fast growing cells. It has a frightening grab bag of side effects including: hair loss, low white and red blood cell counts, nausea, mouth sores, fatigue, nail changes. The nails may fall off “but generally grow back,” according to the website Chemocare. Also look for fluid retention and weight gain. No fair!
Cytoxan: This also attacks fast-growing cells and also has something to do with alkaloids. It has side effects similar to Taxotere but, I am assured by “Chemocare,” not all patients will get all the symptoms. I hope they’re right.
Oh yes, and Cytoxan can cause leukemia, a cancer of the blood. But that’s very rare, apparently, and all cancer patients are really gambling and hoping for the best odds. So bring it on, I guess.
Taxol: Another plant alkaloid, Taxol is an “irritant” that can cause inflammation of the vein into which it is given. It shares the usual side effects with the others, and adds muscle and joint pain and “neuropathy,” tingling and numbness in the hands and feet.
Herceptin: This is a “monoclonal antibody,” a new class of anti-cancer drugs that can attach to certain receptors on cancer cells. This one attaches to the Her-2 receptors in my tumor, the ones that are in the fuzzy “mid-range” in the pathology so far. Usual nausea etc. side effects plus rhinitis (a cold) , dizziness, shortness of breath and insomnia. In a small number of cases, it causes heart problems. Chemocare says that treatment may be “discontinued if symptoms of heart failure persist.” Oh, good. Was I serious when I said I didn’t want the easiest treatment?
Dr. Rugo outlines the various regimens, some schedules give a drug every three weeks, some every week. If I take Herceptin, I’ll probably take it for year. And I’ll also need to take hormones, do radiation, and have a “re-exision” surgery after all that. When I count out the weeks of treatment, the recovery time, the surgery, I’m in the cancer soup until next April or May. This is going to be a tough year, but at least I feel I’m getting the best care I possibly can. After we say goodbye to Dr. Rugo, the Australian fellow, and the med student, I realize she has taken 80 minutes to get to know me, to outline my situation and my possible treatment. Altogether, her team has spent three hours on me. My doctors continue to amaze me.