Ann Kim today: “Here I am with my two sons on New Year’s Day this year. We’re at Ocean Beach in San Francisco. They were just 3 and 7 when I was diagnosed, and now they are young men. I am so grateful for each day I have with them.” Photo courtesy Ann Kim.

Shortly before my 39th birthday, when I was taking a shower, I felt a lump about the size and shape of a pea in my right breast. I felt a chill go through my body. A week later, on my 39th birthday, I got a biopsy. When the doctor called with the results (I was setting out the birthday cake for my older son’s seventh birthday), the news was bad: I had breast cancer. I wanted to cry, but I couldn’t. It just felt surreal.

In literature and film, medicine is often depicted as a paternalistic profession, with patients given little information and expected to follow their doctors’ orders blindly. In real life, my experience was the opposite. Instead of having an all-knowing doctor telling me what to do, I found myself with a team of doctors relying on me to make the critical treatment decisions. I was like a president with advisors, but I knew nothing about the topics, and the choices and the information were overwhelming. What I expected was Dr. Brilliant Guide; what I got was Dr. Me.

My first appointment was with a pre-eminent breast surgeon at a top-rated comprehensive cancer center. She carefully laid out the options for me: lumpectomy with radiation or mastectomy with reconstruction. The lumpectomy would mean a less invasive procedure and a quicker recovery but also require several weeks of daily radiation and a lifetime of mammograms and MRIs. The mastectomy would entail more invasive surgery and a longer recovery time but eliminate the need for radiation and ongoing screening. Long-term survival odds were the same. My surgeon had no recommendation either way.

Anxious to get her to cast a vote, I tried a personal approach. I had Googled my surgeon before the appointment and found that we were of the same age and ethnicity, and we were both mothers. “You and I could be sisters—twins, even,” I told her. “If you were in my shoes, what would you do?”

Ann Kim during chemotherapy in 2005: “This is one of the few photos I have of myself when I was bald. My sons and I are cuddling together in bed during a trip to Yosemite in the winter.” Photo courtesy Ann Kim.

She paused before answering. “Whenever women ask me that, I tell them that it’s a personal decision, and that I can’t make it for them,” she said. “But when I look at you, I see myself. I would choose a mastectomy with reconstruction.”

I was grateful for her answer but also frustrated on behalf of other patients. Why do doctors express their much-more-informed opinion so reluctantly?

I had more decisions to make when I met with a plastic surgeon. He laid out the options: saline implant, TRAM flap (which uses skin, fat, and muscle from the belly region to construct a breast), or LAT flap (which uses skin, fat, and muscle from the back region to construct a breast). I chose to get an implant, but I developed severe capsular contracture, which is when scar tissue forms around the implant and causes painful stiffness and hardening of the tissue. After multiple surgeries, I had to remove the implant altogether. In retrospect, I wish I’d considered the choice of no reconstruction at all, but it was not something that I even thought to discuss with the plastic surgeon, nor did he mention it to me.

The hardest phase of my medical training was choosing an oncologist, the person responsible for administering chemotherapy and other systemic cancer treatments. Weeks had passed since my surgery, and I was convinced that the cancer was already beginning to spread. I wanted to begin chemotherapy right away. But the oncologist offered me the most intimidating set of choices yet.

I could take four rounds of Adriamycin plus Cytoxan, either at four-week or three-week intervals. I could add four rounds of Taxol or Taxotere, again at either four- or three-week intervals. I could participate in a clinical trial in which I would receive either a new drug called Herceptin or a placebo. After my chemotherapy ended, I could choose to take five years of an oral hormonal drug called Tamoxifen, or I could suppress my ovaries by taking a drug called Lupron or Zoladex and take five years of an Aromatase Inhibitor such as Letrozole (brand name Femara), Exemestane (Aromasin), or Anastrozole (Arimidex), or I could take five years of Tamoxifen and follow it up with another five years of an Aromatase Inhibitor.

My head was spinning. Having spent an hour describing the options, the oncologist had run out of time and had to move on to her next patient. Rather than recommending a particular course of treatment, the oncologist told me and my husband to go home and think about it and make an appointment to meet with her again.

I didn’t want to wait several more weeks mulling over treatments I didn’t really understand. At my friend’s suggestion, I met with another oncologist. He offered the same options as the first oncologist but recommended a specific course of treatment and gave strong supporting reasons for it. I appreciated that he was advocating an aggressive approach (adding a third chemotherapy agent and combining ovarian suppression with an Aromatase Inhibitor). But, mostly, I was grateful for a straightforward answer. He became my oncologist.

For young women with breast cancer, treatment decisions often extend beyond surgery, radiation therapy, and oncology to medical specialties such as genetic counseling, fertility planning, gynecology, psychiatry, physical therapy, and primary medicine. Unfortunately, even at a comprehensive cancer center, the patient must coordinate these various disciplines. And if you go “a la carte” like I did, mixing and matching doctors in different practice groups and at different hospitals, good luck.

In the end, I had to create an Excel spreadsheet just to keep track of my appointments: breast surgeon every six months; mammogram every year (ideally just before the breast surgeon visit so that we could discuss the results); MRI every year for the first two years (ditto, but scheduled six months from the mammogram); oncologist every four months for the first five years, then every six months thereafter; ditto for the blood test with tumor markers; PET/CT every year for the first three years; bone density test every year for the first five years (to track the bone thinning effects of the Aromatase Inhibitors); MUGA heart scan every few months for the year of Herceptin (owing to the cardio-toxic effects of Herceptin and Adriamycin); gynecologist every six months; primary physician every year; and so on. I was able to keep track of this because I’m fairly organized. But what about most people?

In many respects, the collaborative approach that doctors take to cancer treatment is welcome. No one wants a high-handed doctor making treatment decisions without the patient’s involvement or understanding. But a patient can’t in the end play the role of doctor. We might want to know why a doctor is recommending something; but we still want a recommendation. Also, many of us need a guide just to navigate all the appointments and logistics, which can be Byzantine.

Today, nearly eight years after my initial diagnosis, I continue to be vigilant in monitoring my health. (Hormone-sensitive cancers like mine have a “long tail”—meaning they can recur 10, 15, even 20 years after diagnosis.) I read articles and books about cancer. I attend lectures and take notes about the latest treatments. And I participate in a breast cancer support group.

If, knowing what I know now, I were able to go back in time and advise myself on how to be Dr. Me, I would have said three things that I also say to new acquaintances in similar circumstances. The first is that you should always bring a family member or friend to your appointments and have him or her take notes. Often, we patients are so overwhelmed that we can’t remember what we were just told or don’t ask any questions. The second is that you must take care of your whole self. Treat yourself to delicious and healthful food every day. Watch a funny movie and laugh with your friends. Take naps and hot baths as needed. The third is that you should feel free to complain. I have seen too many friends suffer in silence, whether it’s nausea from chemo (doctors often prescribe the cheapest anti-nausea drugs before moving up to the more powerful stuff) or simply trouble getting an appointment. If the front desk or support staff are unhelpful, tell your doctor—doctors don’t want to lose you as a patient.

In an ideal world, of course, no patient would have to shoulder so many responsibilities along with trying to get well. One of the best improvements that could be made would be for patients with cancer to have a “patient advocate.” If you were diagnosed with cancer, the medical center would partner you with a professional patient advocate who would guide you through the cancer treatment process. The patient advocate would set up appointments for you, make sure your care was coordinated, and offer general health-related suggestions (alternative treatments, massage, nutrition classes, support groups). The advocate might even accompany you to appointments and help you with decision making. This would go a long way toward letting those with serious conditions have the luxury of being patients, so that they don’t have to be Dr. Me.

Ann Kim is the president of Bay Area Young Survivors (BAYS), a support group for young women with breast cancer in the San Francisco Bay area.

Article originally published at Zócalo Public Square (zocalopublicsquare.org).

Going it Alone The Saturday Evening Post

Regenocyte—an independent biotechnology firm—is exploring the potential of adult stem cells for cardiovascular and severe lung disease. For more about the experimental process from lead researcher Dr. Zannos Grekos and for patient stories, visit Regenocyte – Adult Stem Cell Therapy or call The Heart and Vascular Institute in Naples, Florida, at 866-216-5710.

News Worth Knowing

With so much adult stem cell research underway, it can be tough to keep track of it all. Here are more breakthroughs that are worth keeping an eye on.

Crohn’s Disease: Resetting the Immune System

For sufferers of Crohn’s disease, everyday life can feel like a never-ending bout of food poisoning. The disease arises when the immune system attacks the stomach and intestines, causing abdominal pain, diarrhea, and vomiting. No cure for the condition has yet been found, but Julian Panes, a gastroenterologist at the Hospital Clinic in Barcelona, Spain, thinks he may have hit on the most effective treatment yet: giving chronic Crohn’s patients an infusion of their own adult stem cells to “reset” their immune systems, ending the body’s misguided efforts to attack the digestive system.

The procedure Dr. Panes uses is a straightforward but grueling one. First, patients receive a round of chemotherapy to depress their immune systems, then blood is drawn to obtain a critical mass of adult stem cells. “We check that there is a sufficient number of cells to complete two procedures, just to make sure we are on the safe side,” Dr. Panes says. “After another round of chemotherapy, we infuse the cells into the patient, and the cells populate the bone marrow.” So far, he adds, the treatment seems to result in quick and effective healing of patients’ damaged digestive tissue. “We already have four patients that have been transplanted for more than a year, and three of them are completely without any symptoms. The disease made them miserable, and now they have a normal life.” Dr. Panes plans to begin large-scale clinical trials of the treatment within the next few years.

Reconstructive Surgery: The Next Level

Jeremy Mao, director of the Tissue Engineering and Regenerative Medicine Laboratory at Columbia University’s College of Dental Medicine, thinks he’ll someday be able to do lasting reconstructions of the breast and skin using soft-tissue implants studded with adult stem cells.

In a 2007 animal study, Dr. Mao demonstrated the viability of his technique. First, he inserted adult stem cells that generate fatty tissue into minuscule channels etched in hydrogel implants. He added a growth factor known to promote the development of blood-vessel tissue. Then he transplanted the hydrogel cylinders into mice. He observed that fatty tissue grew in the region of each cylinder—and that it stayed healthy because networks of blood vessels formed to support the new tissue. “When you put micro-channels in the hydrogel, they become a conduit for the blood vessels,” he says.

If Dr. Mao’s technique works in humans, surgeons may be able to perform successful breast reconstructions without silicone and design facial soft-tissue implants that actually hold their shape. Dr. Mao also thinks his method of engineering tissue with its own blood vessel supply will eventually help researchers who use stem cells to build replacement kidneys and livers. “The work we are doing could be informative for more complex organs.”

For more, read “The Post Investigates: The Other Stem Cells,” in the Jan/Feb 2010 issue of The Saturday Evening Post, on newsstands through February.  Subscribe online or purchase the issue at ShopThePost.com.

Adult Stem Cells: Web Extra The Saturday Evening Post