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In the pink

Two years ago, Barbara Ruhlen was diagnosed with breast cancer, the most common form of cancer among Canadian women and the second leading cause of death after lung cancer. Today, she is feeling better than ever, and her disease is in remission.

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BY JUDY OWEN
Winnipeg Health Region
Wave, November / December 2009

Barbara Ruhlen sits in her sunny living room, a smile crossing her face as she watches one of her cats peering out the front window at the busy bird feeder in her yard.

In the background, her husband, Doug, can be heard puttering around the house.

It's Thanksgiving Day and Ruhlen has a lot to be thankful for as she recalls the winding path she's travelled the past two years.

"Every day when I wake up, I think, 'Thank you, God, I have a choice. I can have a good day or I don't have to have a good day,''' Ruhlen says. "But I choose to have a good day."

The reasons for Ruhlen's sense of optimism are easy to understand.

Just two years ago, the 57-year-old woman was diagnosed with breast cancer, the most common form of cancer among Canadian women and the second leading cause of death after lung cancer. Today, her cancer is in remission, thanks in large measure to an early diagnosis and the efforts of the health-care team at the Winnipeg Health Region's Breast Health Centre.

But Ruhlen's journey from diagnosis to treatment and recovery was not without challenges, difficulties and even some tears. Often the word cancer is spoken in a hushed tone, eliciting images of lengthy treatment and possible death. For women, breast cancer brings the added worry about how treatment will affect femininity and self-image.

Ruhlen was not immune to the fears and worries that come with this disease, but she was able to control and overcome them. In doing so, she has joined the growing number of women who have been able to beat breast cancer. According to a 2007 report by the Canadian Cancer Society, the age-standardized mortality rate for breast cancer in Canadian women has fallen 25 per cent since 1986, from 32 to 24.1 per 100,000 cases.

Despite these gains, it is important to remember that breast cancer still poses a serious health threat. In Manitoba, about 790 women will be diagnosed with breast cancer this year, and about 220 women will die from it.

Until the day she was diagnosed in November 2007, Ruhlen did not think much about breast cancer. After all, she had no history of the disease in her family and two previous mammograms two years apart revealed nothing suspicious. So she was more than a little surprised when a staff member from a clinic where she had undergone her third mammogram called her at home. Something suspicious had shown up on the exam, according to the woman on the other end of the line. She would need a follow-up test.

Suspicions don't always translate to a diagnosis for breast cancer, a fact supported by statistics from the Breast Health Centre. In 2008, for example, a total of 539 clients of the centre were diagnosed with breast cancer. In the same year, 1,769 of the centre's clients had benign tumours.

Ruhlen, however, had a feeling that she would not be one of the lucky ones. "They'd already booked the appointment, and then I knew," says Ruhlen, recalling the conversation. "I just remember thinking, 'Oh, my gosh, I have breast cancer. I wonder what's going to happen next?' Nobody had to tell me."

Although the diagnosis was unexpected, it wasn't a complete shock. In hindsight, Ruhlen remembers being tired for about a year and gaining 55 pounds in four months. She had also fractured her foot, even though she wasn't sure how the injury occurred. "In the back of my mind, that was probably partly why I wasn't so surprised when I got my cancer diagnosis," she says.

Breast cancer comes in many different forms, according to information provided by the Breast Health Centre to each of its clients.

The literature explains that cancer is a disease that begins in cells that group together to form tissues or organs in our bodies. Inside each cell are genes that order the cells to grow, work, reproduce and die. Sometimes a cell's instructions get mixed up and they behave abnormally. Groups of these abnormal cells can circulate in the blood or immune system or form lumps and tumours.

Some tumour cells are benign, meaning they stay in one place in the body and are not usually life-threatening, according to the material. Malignant tumour cells can invade the tissues around them and spread to other parts of the body.

Breast cancer starts in the breast tissue, which extends up to the collarbone and from the armpit to the breastbone. Breasts are glands that make milk. Lobules make the milk and the milk ducts drain the milk through the nipple. The cells that form the lobules and ducts can grow out of control and become cancerous.

Non-invasive cancers stay within the milk ducts or milk lobules, while invasive cancers spread. The most common form of breast cancer is invasive ductal carcinoma, which begins in the milk duct but grows into the surrounding normal tissue inside the breast.

Detecting breast cancer isn't easy, but there are signs that should prompt an exam by a doctor. Usually breast cancer is first discovered by feeling a painless lump in the breast or armpit. Other signs can include swelling in the armpit, changes in a breast's shape or size, dimpling or puckering of the skin, redness, swelling and a warm feeling in the affected breast, a nipple that turns inward or crusting or scaling on the nipple.

Breast cancer itself is not the mysterious disease it once was. Twenty years ago, breast cancer had no public profile; early diagnosis and treatment weren't commonly discussed or promoted. Today, there are numerous events and fundraisers staged each year to raise awareness and help finance treatment and research efforts.

The scope of the awareness mirrors the fact that many people will be touched by breast cancer through family, friends and co-workers. For example, groups such as the National Hockey League and the National Football League now wear pink during Breast Cancer Awareness Month in an effort to raise awareness. Locally, some players from the American Hockey League's Manitoba Moose played with pink sticks that were raffled off, while pink pucks and pink ribbons were sold at games. University of Manitoba female basketball players also did fundraisers for the Canadian Breast Cancer Foundation. One included the team wearing special pink uniforms that were auctioned off.

The rise in public knowledge has contributed to improvements in screening and quality of mammography that have led to the detection of more breast cancers at an earlier stage, where treatment is more effective. Therapies have also improved.

Indeed, it could be argued that Ruhlen's early diagnosis was a key factor in the successful treatment of her cancer. Today, it's recommended that women, especially those over the age of 50, be aware of changes in their breast. A lump doesn't necessarily mean it's cancer. That's why it's important to monitor a lump to see if it changes and be examined by a physician once a year. Since breast cancer is more common in post-menopausal women aged 50 and older, it's recommended they be examined by a doctor once a year and have a mammogram every two years. Mammograms are offered free of charge through the Manitoba Breast Screening Program.

Once Ruhlen's diagnosis was confirmed, she was referred to the Breast Health Centre, a link that would become one of the crucial support systems in her physical and emotional care. Located across the street from the St. Boniface General Hospital, the centre offers women and men with breast cancer one place where they can receive services through a multi-disciplinary approach and referrals to countless resources.

The centre has 25 staff, including nurses, mammography technologists, lymphedema therapists, a physiotherapist, a social worker or counsellor, dietitian and clerks. In addition, there are nine affiliated surgeons and three radiologists.

In Ruhlen's case, an ultrasound-guided biopsy at the Breast Health Centre revealed that she had a tumour deep inside the tissue of her right breast, a location that explained why the medium-sized lump couldn't be felt by touch. The cancer was located in the milk ducts (ductal carcenoma), and a number of treatment options were presented to her.

Breast cancer treatments vary depending on factors such as age, state of health and whether the woman has been through menopause. Consideration is also given to the stage of the cancer (size of tumour and whether it's spread), the grade of the cancer (how the cancer cells compare to normal cells and how quickly they're growing and dividing), and whether there are receptors for hormones in the cancer cells (hormones such as estrogen can attach to receptors and help the cancer grow).

The most common treatment for breast cancer is surgery, which can be combined with chemotherapy and/or radiation. There are two types of surgery: breast-conserving surgery or a mastectomy that removes the whole breast.

Breast-conserving surgery includes a lumpectomy or a partial mastectomy. The difference in the surgeries has to do with how much breast tissue is removed. In a lumpectomy - a term many people use to describe all breast-conserving surgery - only the tumour and a small margin of healthy tissue around it are removed.

Breast-conserving surgery may be an option if the tumour is small enough compared to the size of the breast and the tumour and healthy tissue can be safely removed. Women can also choose breast-conserving surgery as a first step in treatment. Usually it's followed up with radiation therapy and other treatments.

A mastectomy to remove the entire breast may be recommended if the area of cancer is large compared to the breast size, the cancer is in more than one area of the breast or a previous breast-conserving surgery reveals the healthy-looking tissue around the removed tumour isn't clear of cancer. Some women also prefer a mastectomy.

Lymph nodes, commonly found in the armpits, groin and neck, may also be removed during any type of surgery. Lymph nodes filter extra body fluids, abnormal cells and dead cells from infections.

Radiation therapy is usually given after breast-conserving surgery as a means to destroy any possible remaining cancer cells. It may also be given after a mastectomy, depending on the size of the tumour and other factors.

Chemotherapy drugs can also be part of a treatment plan to slow or even stop cancer cells from growing and reduce the risk of cancer coming back after surgery or radiation therapy. Chemotherapy is also sometimes done to shrink a tumour before a lumpectomy.

Side-effects from radiation can include fatigue and skin changes such as tenderness and itchiness. Chemotherapy may cause fatigue, nausea, hair loss, loss of appetite, a change in menstrual cycles, and a higher risk for getting infections.

After discussions with her doctor, Ruhlen opted for a lumpectomy.

Ultimately, the procedure proved successful. But it was not without complications.

In these types of procedures, a dye is injected into the breast to see if there is any lymph node involvement. The dye didn't move, a sign there was some type of blockage and possibly more tumours. The original lump was removed, but as a precaution all her lymph nodes were taken out rather than just the main sentinel node.

Ruhlen says she didn't feel any panic, attributing that to her 36-year career in health care and her personality. "I've always tried to look on the optimistic side of things and go with my gut feeling, and my gut feeling was I was not going to die from this," she says.

Further investigation revealed that her lymph nodes were clear. There's still a risk she may develop lymphedema - a buildup of lymph fluid in the arm that causes the arm and hands to swell - but it hasn't happened yet.

Ruhlen wasn't unprepared for the complications. All the medical staff she encountered had thoroughly explained what could happen and what her options were, she says. She also had access to plenty of educational material about breast cancer.

Patients referred to the Breast Health Centre are placed at the centre of a process that provides education, direction and comfort. Each person receives an information package, is introduced to the social worker and attends pre- and post-operative information sessions so they get an overview of what to expect.

During the pre-op session, clients hear speakers such as a nurse and physiotherapist. Someone from CancerCare Manitoba's Breast Cancer Centre of Hope program also talks about peer support and offers to find someone in the community they can hook up with who is going through the same situation as them. They also listen to a volunteer who has had breast cancer. The post-op session features a dietitian and physiotherapist from the Breast Health centre, and a nurse educator from the Breast Cancer Centre of Hope, which is a resource centre of CancerCare Manitoba. Family members can attend weekly pre-op and post-op information sessions. The Breast Health Centre also runs programs related to bone health and healthy living. "I think there are a lot of resources out there for women and men with breast cancer," says Jo-Anne Marion, who was one of the centre's nurses before taking over the role of acting director. "Often what happens is we have to assist them in navigating the system to really find the proper resources for them."

The awareness and the information that's available about breast cancer has increased the demand for resources and services, from more screening to more treatment options to more help during recovery. "It has led to our centre, and even the Breast Cancer Centre of Hope, to kind of pool together all the literature, the information, the support groups that deal with breast cancer and breast health so that we can offer this information to women," Marion says. "Because of the awareness, I think more women are feeling comfortable talking about it, so they want more resources in order to educate themselves."

It's the little things the centre offers that made it a comforting place to go, says Ruhlen, adding it starts with something as simple as being able to park nearby for free. "I was very comfortable in the surroundings," she says. "The waiting room is wonderful. I felt really cared for and it made me feel really special, and I felt like the whole area was dedicated to my wellness - wonderful chairs, lovely magazines, clean area, beautifully painted, soft colours, lovely etched glass. I didn't feel like I was on display to the street. Nobody could see that I was there, if I had been worried about anyone knowing I was a patient there."

As she underwent treatment for breast cancer, Ruhlen was understandably focused on her medical care. Lost in the shuffle was an assessment of how the experience was affecting her emotionally. She thought she was keeping it together pretty well, until she was at her doctor's office one day and erupted into tears.

"I had no idea I was going to cry, it just happened," Ruhlen says. "I guess it was my breaking-down point. I had been so focused on 'doing.' When you get cancer, your life is a progression of specialists' appointments and somebody is always directing your care. So many of the decisions were not mine to make once I had made the initial decision of how I was going to proceed with my care."

Finished with chemotherapy, she decided it was time to concentrate on herself and booked an appointment with the social worker at the Breast Health Centre. The ongoing meetings have been invaluable.

"It's meant the difference between me having a life and not having a life," Ruhlen says. "She (the social worker) has been my lifeline. She's helped me to deal with many issues that had been unresolved in my life prior to this that I thought I had dealt with."

Marion says many women experience a range of emotions as they battle breast cancer, especially those who require a mastectomy. "Breasts definitely can be a large part of a woman's self-esteem," Marion says, adding that the centre's social worker plays a big role in helping women deal with these feelings.

Among other things, the Breast Cancer Centre of Hope has a prosthesis and bra bank of gently used items that are provided for free. There are also resources for wigs.

Women also deal with concerns about how their family is going to react to the diagnosis, how or if they can work during treatment and recovery, and how much energy they'll have for childcare and household responsibilities. Mothers may also experience guilt that they might pass the disease on to their daughters, Marion says.

Ruhlen says her "exceptionally supportive" husband immediately took over running their household so she could focus on her needs. One area she didn't struggle with was her appearance and losing her hair during chemotherapy. "It may sound kind of silly, but I was thrilled to lose my hair because I felt that that was a little gift to me so that I would not have to waste what energy I have on my appearance," she says with a smile.

"And I knew that my hair would grow back so I was actually quite happy to be bald. For me, it was a visible sign that I was indeed sick, but I was getting treatment and I was going to get better."

She also met with the centre's dietitian because a new drug she's on can cause dietary restrictions.

Her type of hormone-receptor-positive tumour grows in response to estrogen and progesterone, so the drug, called aromatase inhibitor, stops her body from making estrogen, she says. Other breast cancer drugs only target a receptor site in the estrogen.

She has to take the drug for at least five years, a costly treatment that adds to her worries and was an issue she also discussed with the social worker.

For example, drugs she took for her bone marrow were $3,500 for seven days worth of treatment. Injections for her blood clots were $167 for five days' worth and she took it for eight months. The new aromatase inhibitor drug is $169 per month.

While insurance has covered some of the cost, she's had to dip into personal savings. Her husband is a dispatcher at Health Sciences Centre, but she hasn't returned to work as a unit clerk at HSC because of memory problems she believes are associated with her treatments.

She was referred to the memory clinic, which has helped her know which areas she's having trouble with.

Ruhlen says one of the benefits of connecting with the Breast Health Centre is that staff are tapped into resources and that saved her from using up valuable energy to find ones that would suit her needs.

She's attended group meetings, yoga classes for people with cancer, a session about bone health, a course on eating well and getting fit, and another about looking good and how to manage appearance-related side-effects.

"Every person there was exceptionally positive in their attitude," she says. "It was a way to make me feel very comfortable. I didn't feel uncomfortable with the fact that I had this illness.

"I felt that this was an opportunity for me to take advantage of the expertise of many professionals, and they were there to help me to be well and to live the best possible life that I can live."

Although her tumour is gone, Ruhlen knows breast cancer can return at any time.

However, she feels better now than she has in years. "I didn't ever feel I was going to die, so I don't really feel it was a close call, but it was a lifechanging experience," says Ruhlen, who's been open about her illness with friends, co-workers and family, especially her 36-year-old daughter who lives out of town.

"And it helped me to set my priorities and get my priorities straighter. I feel more settled in my life. Having cancer has taught me patience, it's taught me to decide what are the most important elements of my life."

Judy Owen is a Winnipeg writer.

	About Wave Wave is published six times a year by the Winnipeg Health Region in cooperation with the Winnipeg Free Press. It is available at newsstands, hospitals and clinics throughout Winnipeg, as well as McNally Robinson Books. Read the Nov. / Dec. 2009 issue of Wave