It was one of those moments you never forget. “The doctor said, ‘You have some activity in the brain’ … I’m going to lose my hair again.” Those words from a stunned forty-eight year old woman marked the beginning of the “mother of all cancer battles” for my younger sister of five years, Diane, following her nearly ten years of seemingly endless rounds of radiation, chemotherapy, blood work, MRIs, CAT scans, oral medication, including hormone therapy (she was HER2 positive), and psychiatrist visits for breast cancer. The surgery to remove the initial tumor seemed like a minor blip compared to the subsequent treatments and what would soon follow with these newly discovered lesions in the brain.
Diane was thirty-nine years old when she was diagnosed with breast cancer. She had led a relatively uneventful life, having married around the age of thirty and given birth to two children, two years apart, only a few years later. She worked outside the home, smoked, drank mostly beer, did no exercise, and had been on and off oral birth control for the previous twenty years -- certainly no castle of health – but whose habits were not unlike most of ours. Although the dangers of mixing smoking and oral contraceptives had long been well known, she ignored all the warnings. In retrospect, I believe she always wondered if somehow that mix contributed to her getting cancer. By age thirty-nine, Diane was already on a yearly mammogram schedule (as was I) but had skipped one earlier that year because, after all, her schedule was busy, and she felt no different than at any other time. When someone’s age is outside the realm of high statistical probabilities and with no real history of breast cancer in the family (a maternal grandmother had a breast tumor removed in her eighties without incident), it perhaps is an easy thing to do. Nine months after she should have had a mammogram, an annoyingly constant tingling in her left breast brought her to her doctor. They felt no lump, but the doctor suggested she have a mammogram. That and a sonogram revealed a one-inch size tumor perilously close to the lymph nodes. She had stage three breast cancer and, to complicate matters, she was HER2 positive.
That initial diagnosis was roughly ten years ago. Since the mastectomy (she had only the breast with the tumor removed), chemotherapy, radiation, and continuous oral medication, it was discovered that indeed the cancer had spread into the lymph nodes for over the next several years Diane required additional chemotherapy and radiation for lung and kidney metastases. Just when she was about to celebrate the five-year hiatus from the disease -- by this time a happily divorced woman -- her new life was abruptly halted when routine blood work and an MRI revealed an alarming amount of activity in the brain.
Brain metastasis, or brain mets, is undoubtedly one of the most debilitating forms of metastatic breast cancer. According to an informative website on brain metastasis, brainmetsbc.org, Diane’s probability of cancer metastasizing to the brain was about 25-40 percent, because she had breast cancer below age fifty, she was HER2 positive, and the cancer had already spread to the lung(s). Because she was in the higher risk group, I have to assume that her oncologist requested additional testing more often than she would of the normal breast cancer patient.
The thought of getting brain mets is frightening because it is so unpredictable. There is no diet or healthy lifestyle to help prevent brain tumors from developing. There are no recommended routine checks for early diagnosis; according to brainmetsbc.org, early diagnosis and treatment have not been shown to extend the life of the patient. Treatment usually consists of surgery, whole-head radiation and targeted high dose radiation, as well as oral chemo medication. Standard chemotherapy cannot penetrate the semi-permeable blood-brain barrier which regulates substances that may enter the brain and which also protects the brain from toxins, viruses, and bacteria. Ironically, the very protection the barrier offers also hinders cancer treatment (please refer to brainmetsbc.org for more details about the blood-brain barrier). In Diane’s case, she immediately began a regiment of whole-head and targeted radiation, a progression of new oral drugs, including Tykerb, Xeloda, Temodar, Avastin (those are the four I remember), and eventually, steroids. She did not qualify for surgery given the number of small tumors scattered throughout her brain.
Other than loss of hair and general fatigue, Diane’s first year with brain mets was uneventful. Over the course of the first few months into the second year, however, a digression of motor skills picked up pace. Speech patterns were the first to show change, with more and more words becoming jumbled and slow to recall and slurred. Walking became sluggish, and simply putting one foot in front of the other for balance was obviously difficult. Incontinence seemed to be more annoying than embarrassing for her, as her sense of smell seemed also compromised. Her children, now in their early teens and dividing their time between her and their father, had difficulty reasoning with her growing irrational temperament. When her son took her car keys away, the realization of knowing he did the right thing frustrated her even more. Indeed, the cancer was not only physically destroying her body but it was destroying her will to live.
When Diane was first diagnosed with brain mets, she asked me to become her power of attorney and executor of her estate. I readily obliged, completely unaware of what lay ahead for me in terms of taking over her day to day responsibilities. That she was living alone meant that someone (me) eventually had to assume paying the bills. Very early after the diagnosis, I arranged for her to meet with renowned brain mets specialist Dr. Andrew Seidman at Memorial Sloan Kettering Hospital. While I had her records sent to him, drive the two hours each way to get her and bring her to see him in NYC, she would not go (she reminded me of an aunt who died there of stomach cancer). Perhaps it was too early after the diagnosis for the disease had not physically revealed itself, perhaps Diane still held out hope that her own oncologist could treat her -- we will never really know. It is often said that a patient has to feel a comfortable trust with her doctor, a relationship that Diane and her oncologist and radiologist had built over the previous ten years. It is important that we, the caregivers, understand that bond when trying to help.
After roughly sixteen months of brain mets treatments, she began complaining of more frequent headaches. Suddenly, on what was her fiftieth birthday, Diane awoke from a nap uttering sentences that were nothing more than gibberish. After being rushed to the hospital, it was determined she had had a stroke. A few weeks later, we were able to bring her home only if she had a 24/7 caregiver. The caregiver would be the most wonderful gift for Diane and for members of her family. Diane could live out the remaining days in her home in comfort; we could visit her as we wished. After rebounding for the first few weeks, she was placed on hospice care, for she was just too weak to get any more treatments. She died peacefully, almost four months to the day of having her stroke and twenty-two months after tumors were discovered in her brain.
When I spoke to her doctor and radiologist, it was surmised that the number of radiation treatments might have contributed to her stroke. Another cause could have been the side effects of Avastin, the drug she was taking just prior to her stroke and known to possibly – though not definitively according to Dr. Seidman in an interview in brainmetsbc.org -- contribute to strokes. And yet another theory is that her disease simply ran its course after ten long years of festering in a fragile mortal being.
What can we learn from Diane’s death? Certainly, we are immediately reminded of just how vital the brain is to bodily function. Once the brain cannot communicate with the rest of the body, then the various part of the body gradually shut down. In Diane’s case, it was the cancer in the brain that eventually killed her. Secondly, we are reminded of how important it is to try to prevent breast cancer from occurring in the first place. A lifestyle of a healthy diet, a balance of exercise and rest, no smoking, moderate use of alcohol, and plenty of sleep cannot be stressed enough to keep our minds and bodies strong. The best way to keep to that lifestyle is driven home every time I think of how Diane suffered and succumbed to cancer. Lastly, believe the cliché – live each day as if it was your last – you never know how beautiful life can be until you are threatened with losing it.