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?”
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).
Help When You Need It
The American Cancer Society (cancer.org) provides helpful information about all types of cancer, and offers amazing programs such as peer support, free wigs and cosmetics, and free transportation to appointments.
For general information about breast cancer, as well as a helpful online community (chat boards), breastcancer.org is a good resource.
Other websites that Ann recommends:
Right Action for Women (rightactionforwomen.org), founded by actress Christina Applegate, educates women about what it means to be at “high risk” for breast cancer and provides aid to those without insurance or the financial flexibility to cover the high costs associated with breast screenings.
Casting for Recovery (castingforrecovery.org) provides an opportunity for women with breast cancer to gather in a natural setting to learn the sport of fly fishing, network, exchange information, and have fun.
Cleaning for a Reason (cleaningforareason.org) partners with maid services to offer free professional house cleaning to women undergoing treatment for any type of cancer.
Little Pink Houses of Hope (littlepinkhousesofhope.org) offers weeklong retreats in North and South Carolina for breast cancer families, providing food, lodging, and activities. Participants provide transportation.
Cancer and career: Many facing cancer have questions about how the disease will affect their jobs. The Disability Rights Legal Center (disabilityrightslegalcenter.org) and Cancer and Careers organization (cancerandcareers.org) are great resources to help with these issues.
The very idea of caring for a family member in a different zip code—much less a different time zone—has little precedent. Go back 100 years and most extended families shared a single dwelling. At the most, grandma and grandpa lived across town. Today that’s all changed. The centrifugal forces propelling family members far and wide seems only to be increasing. A 1997 study estimated that more than 7 million Americans were distance caregivers. More recently, the National Council on Aging [NCOA] projected that the number of distance caregivers would increase to 14 million by 2012.
While it is well known that caregivers in general are more prone to depression and physical illness than the rest of the population, few have looked into the particular challenges for those who do so from afar. One who has is Polly Mazanec, Ph.D., assistant professor at Case Western Reserve and an advanced practice nurse at University Hospitals Seidman Cancer Center. I spoke to Mazanec about her findings, which were published recently in Oncology Nursing Forum.
Q: Looking at the differences between local caregivers and distance caregivers, what jumps out at you?
A: Long distance folks were significantly more anxious and the female caregivers in particular had higher depressive symptomatology. But what was most concerning, both groups had distress scores that exceeded the National Comprehensive Cancer Center guidelines for intervention.
Q: In other words, they ought to be getting help. Are they?
A: Local caregivers are getting help. Distance caregivers are not. In my work as an advance practice nurse in a comprehensive cancer center, there is a whole team to support the patient. There are multiple opportunities for care, including emotional and spiritual support. The team can also assist the family, both with practical matters and general guidance. With distance caregiving, families are left out in the cold.
Q: What are the greatest sources of stress for the distance caregiver?
A: The uncertainty and the guilt. Not knowing exactly how a patient is doing from day to day; wishing one could be there to provide more support; not knowing when or how often to visit. In many ways, that last one is the hardest question: if one can only afford to come visit for one week, when should that be? There’s the cost of travel, the commitment to a job, and the competing needs of one’s own family.
Q: In your article, you described a caregiver whose mother had advanced cancer. She waited until after the chemo to make her visit, but found her mother terribly debilitated and barely able to communicate. This individual was filled with regret, and wished she had gone earlier. When is the best time to pay that visit?
A: Just as when people ask, “Is my loved one dying?” we can’t answer that question exactly. But, we can help the caregiver decide on the timing. Some have a relationship where they would like best to be helping with the details, cleaning, administering medications, and so forth. Others would like to be there when the patient is feeling better so they can talk, do a “life review,” or spend time going to lunch and doing something fun. It really boils down to the need for improved communication both with the nursing and support team and among the family.
Q: Not all families are good at communication. It’s not too hard to imagine some parents responding: “If you were a good son or daughter, you wouldn’t come for a one-week visit. I’m dying and I want you to move out here for six months.”
A: Every family has issues. If a parent were to say something like that, it would almost be a gift. I would look at that as an opportunity to have a family meeting, even if it had to be by video conference. At the meeting, the support team would encourage the patient to talk about the anxiety that was causing the patient to wish for something that wasn’t possible. It’s essential to address those disruptive feelings before all that guilt is placed on the caregiver.
Q: Who should people turn to to help facilitate the discussion?
A: Typically advanced practitioners in palliative care are trained to do that. Some communities may have a palliative care team available through their local hospitals or hospices which would be even better. And of course, if the person you’re caring for is in hospice, they’ll have the team.
Q: And if the patient is not in a support network of some kind?
A: First, you should access their primary care provider. They’ll know counselors in the community who can facilitate a family discussion. Second, two websites are very helpful: The National Alliance for caregiving, and the National council on Aging. Both have good links for local counseling. These sites also have a lot of great help for practical needs—paying bills, healthcare, transportation, and so forth.
Q: Is distance caregiving ever an advantage?
A: It can be. For our study, one person said a parent who was normally uncomfortable with personal matters seemed able to speak more freely over the telephone. I also hear from some people that the distance allows the relationship with a parent not to be all about the illness; the discussion turns to grandchildren or the patient’s relationship with people in the community.
Q: In communicating long distance, what’s most important?
A: Being upfront, expressing your true wishes to be able to help as best you can, despite the limitations. For the caregiver, it’s also important to remember that it’s okay to have those feelings of guilt and worry: that’s actually part of the job. It’s certainly not an easy one. Things are so different from 100 years ago when everyone lived next door.
Steven Slon is the Editorial Director for The Saturday Evening Post. This article was first posted at http://beclose.com/