Story for The Georgia Straight, October 21-27, 2004

How to Survive Breast CancerBy Star Weiss
"You have breast cancer." Those are frightening words that one in nine women will hear someday. October is Breast Health Awareness month, and there are things you should know, right now, that may help you prevent, detect, and help treat the disease, or just get through it.

1). A lump is not necessarily a lump. In addition to checking monthly for lumps, women should be looking for any changes in our breasts, like hardened areas, dimpling, or discharge from the nipples. To find anything new or unusual, of course, you need to know thy breast in the first place. That means doing those self-exams regularly. And don't rely on your doctor to pick up variations in a clinical exam. Neither myself nor my GP ever felt a lump, and it was only after my mammogram showed an "architectural distortion" that I noticed, quite obviously, a hard, flat area in the upper inner quadrant of my left breast. My tumour was located just underneath that hardened mass (which I was later told was scar tissue forming as the breast tried to protect itself).

2). Mammogram screening is not given annually to women over 50 in B.C.-unless you ask. The BC Cancer Agency currently recommends that women over the age of 40 should have mammograms "at least" every two years. If you are between the ages of 40 and 49, call to set up your first appointment with the screening-mammography program of B.C. You will then receive a letter every year reminding you it's time for your annual mammogram. (To contact the SMPBC, call 604-660-3639 or 1-800-663-9203.) At present, 49 percent of eligible women in the province are part of the program, and the goal is to register 70 percent. According to the SMPBC, only three or four women out of 1,000 will be found to have breast cancer. With mammography, most cases will be caught at an early stage, when the chance for successful treatment is better.

However, when you turn 50, those reminder letters will only come every 22 months. I didn't realize this until after I was diagnosed and we looked for my last mammogram for comparison. As a daughter of a breast-cancer survivor, I had been having annual mammograms for years, but, when I turned 50, I had been switched to the two-year callback schedule without realizing it. I wish now that I'd been more proactive.

But you can be. Dr. Andy Coldman, who oversees the SMPBC in Vancouver as the provincial leader of population and preventive oncology at the BC Cancer Agency, told me that the current mammography program permits women over 50 to be screened every 12 months at no charge, if the women themselves keep track and call to make an appointment. Simple as that. According to Coldman, about 10 percent of women aged 50 and up who participate in the screening program already do this.

The probability of being diagnosed with breast cancer increases substantially with age, and many authorities in the United States recommend annual mammograms for women over 50. Coldman admits that the two-year screening in B.C. is a "compromise" based at least in part on the most effective use of available funds. Yet this type of screening remains, in Coldman's words, "the best thing women can do to increase their chances of beating breast cancer." Since this is our best tool, it makes sense to use it wisely.

3). Limit your alcohol intake. Even social drinking could increase your risk of breast cancer, and the less alcohol women drink, the better, it seems. According to 2001 results from the Harvard Medical School's Nurses' Health Study, published in book form as Healthy Women, Healthy Lives (Simon & Schuster), your risk increases slightly with each half-glass of wine, beer, or liquor consumed. "Our best advice is that, if you want to drink alcohol, drink less than one drink per day," the report says.

4). There is no one way to treat breast cancer because the symptoms and the risks vary, depending on your situation. When you learn you have breast cancer, it can mean many different things, and it doesn't mean you're about to die. The hardest part is waiting for biopsy and test results. Once the shock has subsided, the next challenging step is making treatment decisions that are right for you.

5). In most cases, breast cancer itself rarely causes pain. There will be times when you feel quite normal. Treatment and drug side effects, like mouth sores and constipation, will be the sources of any discomfort.

A regular mammogram is part of a healthy life style, and can be a lifesaver.

6). Despite the notorious wait lists for elective surgery in B.C., our medical treatment for breast cancer is excellent, timely, and up-to-date. That is, at least if you're in the Lower Mainland/Victoria/Okanagan areas. And if you live in Victoria, be sure to go immediately to the breast-health centre at Victoria General Hospital, where nurse Cathy Parker will help you "navigate" through those first bewildering weeks of treatment choices and new jargon. The centre is unique in B.C., and women rave about it. According to Parker, the BC Cancer Agency and the Canadian Breast Cancer Foundation are both looking for ways to set up more breast-health centres, which offer immediate assistance for newly diagnosed women. For instance, Parker helps people understand confusing new terms. How can you opt for a sentinel-node biopsy if you don't even know what it is?

7). If you have to have chemotherapy, you can do it. Chemo isn't fun, and the side effects, like hair loss, nausea, and low white-blood-cell counts, can be fairly devastating...or not. But cancer clinics or hospital wards where treatment is administered can be places of tranquillity.

Arlene Venne of Victoria, a chemo nurse for 19 years, says the chemo centre is her favourite place to work because "you with people in the chemo unit....The chemo room is actually a happy place. It is a very upbeat room, after the first experience. It's...a family here." Chemo nurses in some centres, like Victoria, have even organized a "graduation ceremony" to mark each patient's last day of treatment. Radiation is a lonelier experience, but nurses and technicians also do their best to reassure and comfort patients.

8). Talk to women who've been there. Women like Nancy, who says not to be afraid of the process and wishes now that she'd gone to the doctor the day she found her lump. Penny says get a copy of the book Intelligent Patient Guide to Breast Cancer: All you need to know to take an active part in your treatment (Gordon Soules, 2001) written by three B.C. oncologists (Ivo Olivotto, Karen Gelman, and Urve Kuusk). Ann says to insist on a biopsy early if your mammogram looks unusual but your doctor suggests holding off. Sudi urges people to ask for an ultrasound along with your mammogram to make sure nothing is missed.

And all of us know that, along with medical expertise, the love, support, and prayers we got from friends and family helped us heal. Most women I know say they wanted and needed to hear from friends. If you don't know what to say, wait until you're calm, then let them know you're thinking of them and drop off a casserole or some other comfort food. If you face breast cancer, the earlier the diagnosis the better, but you can and will get through it, one step at a time.

Trials of Treatment

By Star Weiss

You may be asked to join a clinical trial during your treatment for cancer. Should you participate? Consider the decision carefully.

On the yes side, a trial sometimes offers treatment you would not be able to access otherwise (often the most up-to-date medication available), for free, says Dr. Nicol Macpherson, medical oncologist and principal investigator of the MA.27 trial at the BC Cancer Agency's Vancouver Island Centre. Trials can also offer people peace of mind; patients get ongoing care and can back out at any time.

I decided to take part in the MA.27 trial, partly because of the newer class of drugs offered: the aromatase inhibitors, which include anastrozole (Arimidex), exemestane (Aromasin), and letrozole (Femara). Some studies have shown that AIs provide more benefit than the gold standard of tamoxifen (Nolvadex) as a post-treatment hormone used to prevent cancer recurrence, according to Macpherson. On the downside, it's too soon to know the possible long-term side effects of AIs or whether a combination of the AIs plus tamoxifen is the best way to go.

In randomized trials, participants have no choice which study group they wind up in and may not even know which drugs they are taking. In my case, I know I'm taking exemestane (which is being compared to anastrozole for efficacy), but I'm also taking pills that may be celecoxib (Celebrex) or may simply be a placebo.

This addition of celecoxib, a non-steroidal anti-inflammatory drug, to the study, is, in Macpherson's words, "the most exciting part", since investigators theorize that the product may further reduce risk of cancer recurrence.

However, the inclusion of the Celebrex is also, at the moment, the most problematical aspect, since it's also a COX-2 inhibitor, the same class of drugs as Vioxx (rofecoxib), a drug used to treat arthritis pain. Vioxx was recently and dramatically pulled off the market when it was linked to an increased risk of stroke and cardiac problems.

Currently, the Toronto-based National Cancer Institute of Canada, one of the sponsors of the MA.27 trial, is undertaking its regular six-month safety review of the study, including close scrutiny of Celebrex, "and they'll line up on the side of caution," Macpherson says. I'm anxiously waiting for these results.

If, during the study, results of study groups are extremely different, the trial is ended and the better treatment is offered to all participants (which happened in the well-publicized recent study of tamoxifen followed by the use of letrozole or placebo).

For some women, trials offer one more possible, but unproven, way to further reduce the risk of recurrence, at a time when they've run out of other options. Because of the aggressive nature of her cancer, Anita Fownes of Victoria decided to enter the MA.24 trial, which is testing the drug Herceptin to see if it will reduce the rate of recurrence for women with early-stage breast cancer who test positive for the protein HER2. Fownes's advice to women, after much thought in making her own decision is: "Definitely consider it." The choice to enter a trial could also mean being part of finding better treatment for women in the future.