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'Living' Newsletter - Issue 15, Fall 2005

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New Life, Threatened Life — My Journey Through Pregnancy and Cancer
by Amy

It's hard for me to believe that it has been almost exactly one year since I was diagnosed with breast cancer. What a year it has been. It was November 22nd, 2004 when I was given the earth-shattering news that I had breast cancer. I was five months pregnant with my third child, and although I have a strong family history of breast cancer, I certainly didn't think I would experience the reality of it personally when I was only 38 years old. I'm telling my story because, as women delay having children until later in life, it is expected that the incidence of breast cancer diagnosis while pregnant is going to increase. I think it is so important to raise awareness to the fact that this can happen. Hopefully, we can build a support network for women like me, who find themselves in this dichotomous situation where emotions range from excitement and anticipation at bringing a new life into the world, to fear and anxiety, knowing that a life threatening disease has invaded your body.

Because I was mid-way through the pregnancy when I was diagnosed, there were a lot of things to consider before moving forward with cancer treatment. I was fortunate to get in to see a highly renowned oncologist at Princess Margaret Hospital in Toronto within days of my diagnosis, who in turn referred me to a surgeon at Mt. Sinai Hospital to have a mastectomy and axillary node dissection. At 25 weeks gestation, my baby was monitored before and after the surgery, and within 24 hours, I was sent home. I continued to be closely monitored by my obstetrician in Kitchener as I waited several weeks (which seemed like an eternity) for the pathology report from my surgery. The report confirmed a very aggressive infiltrating ductal carcinoma with two affected lymph nodes (of 28 removed) - Stage 2 breast cancer.

It has amazed me that throughout this journey with cancer there are so many choices to be made, and how important it is to be an educated patient. After doing much of my own research, along with the guidance of the oncologist at Grand River Hospital in Kitchener, I decided to begin chemotherapy before my baby was born. Timing was critical. We had to ensure that my blood counts were at an acceptable level and I was feeling healthy enough to deliver a baby between my first and second chemo cycles. Everything went as planned, and after only six hours of labour, on February 27, 2005, I was holding a beautiful baby girl. My hospital room was filled with emotion that day as my husband, my sister, the doctors, and of course, myself, were all in tears-tears of joy at seeing this little bundle enter the world after being exposed to not only my surgery and anaesthetic back in December, but the toxic chemotherapy drugs that were running through my veins only a couple of weeks previously. Sydney Elizabeth Hope has been one of the bright lights in a year when there seemed to be little to celebrate.

Five days after Sydney was born I was back in the chemo suite receiving my second cycle of FEC100 (5-Fluorourcil, Epirubicin, Cyclophosphamide). I continued with the regimen of treatment every three weeks until I had completed the recommended six cycles total. As well, I began to have the staging tests that are typically given at diagnosis but I couldn't undergo them until I had delivered my baby. As an otherwise healthy, physically fit person, and with the initial pathology report of Stage 2 breast cancer, I was confident that the surgery in early December had removed all of the cancer from my body. I went ahead with the routine bone scan, abdominal ultrasound and chest x-ray, and to say that I was devastated when I was given the news that there were several "hot spots" along my spine that showed up on the bone scan, would be an understatement. Because I wasn't experiencing any pain symptoms and I was feeling relatively good, the doctors in Kitchener were cautious in diagnosing metastatic breast cancer even after several MRI's and CT scans of my back. In July I decided to seek a second opinion from an oncologist at Sunnybrook Hospital in Toronto; someone who I was told had a lot of experience with young women with aggressive breast cancer that had spread to the bone. This doctor wasted no time in telling me that, in his opinion, I was in fact Stage 4, with metastases to the spine. The prognosis wasn't very good. In fact, he said that the average life expectancy for someone in my situation was two years.

This is really when my emotions got away from me and I wondered how I could ever process the news that I had been given. My husband, who had been so supportive throughout my diagnosis and treatment thus far, was determined that I stay positive and assured me that together, we would get through whatever lay ahead. With three small children (Matthew, 31/2; Scott, 2 and Sydney, now 5 months old), we had to not only focus our energy on my quality of life but also continue to have as normal a family life as possible, for the sake of the kids.

Because my breast cancer was highly (80%) estrogen receptor positive, the advice from the oncologist at Sunnybrook was that we treat as aggressively as possible with hormonal therapy. This included having an injection of Zoladex that day to begin shutting down my ovaries, thus limiting the amount of estrogen being made and circulating in my body. Within six weeks, when I was about half way through the 25 days of radiation to my chest wall, I underwent laparoscopic surgery to have my ovaries removed-welcome to menopause! I am currently taking a bone-building drug (clodronate) and will switch from tamoxifen to an aromatase inhibitor in the next few weeks. I have started the process of genetic testing under the guidance of a genetic counsellor at Grand River Hospital and I am currently awaiting results of the blood sample that I had drawn early in September. It is important for me to know if I carry the BRCA1 and BRCA2 genes so that my children can make informed decisions later in their lives. Aside from a very achy back (for which I see a massage therapist once a week and have started some exercises with a physiotherapist to strengthen my core, back and neck), I have been feeling pretty well and have started to get my life back.

It does seem that time has helped me to move on from that horrible day in July when I was told about the metastases, and I'm learning to take some time to relax, meditate and focus on healing myself. I believe that the mind is a powerful tool and I need to utilize my energy in a positive way to listen to my body and make the necessary adjustments required to feel well. I am confident that my daughter, Sydney, will continue to grow and develop normally, (she will be monitored as part of a study at Sick Children's Hospital in Toronto that is focused on the cognitive development of babies whose mothers received chemotherapy while pregnant). I have been blessed with amazing support from my family, friends and community, and I look forward in the future to being able to help others who are going through such difficult times.

*This article may not be reproduced in any way except by written permission by the author.

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My Story
by Kay

The unthinkable has happened. My breast cancer has returned. I am 56 years old, single, with a daughter in her early twenties who lives with me. This is my story.

Last spring, after seven great cancer-free years, I started to experience severe pain in my back, hip and right thigh. At first, I wasn't too concerned. Pulled muscles, surely? But after a hiking trip to Killarney, when an "easy" hike became a test of sheer endurance, I finally saw a doctor. With my history of breast cancer, x-rays were suggested, "just in case". A week later, I was called back for more x-rays of my hip. The left iliac crest was solid, but the right looked like something a dog had chewed. The doctor ordered an urgent bone scan, to check for metastasis to the bone. Somehow I got through the rest of the day. That night I called my best friend and then lay on the couch howling. I sleepwalked through the next few days at work. The day after the bone scan, the doctor called me in urgently: there appeared to be numerous metastases to the spine, hip and right femur. He made an appointment with my oncologist and wished me all the best. I stumbled back to my office, poured out the news to my closest colleague, called my best friend and went home early, incapable of thinking, barely able to move with pain and shock. And so it began: the oncologist's appointment, more tests, and on July 1, 2004, the diagnosis I had feared: "You have metastatic cancer to the bone. It is not curable".

It's over a year later and I'm still here, alive and kicking! It's been an incredible physical and emotional roller-coaster. I started on Femara, a hormonal therapy, as well as pamidronate, which I am still on to rebuild my bones. I had stopped working because of the pain, and could walk only with the aid of a cane. However, things got worse, not better, so last fall I began chemotherapy. Seven months of FEC (5-florouracil, epirubicin and cyclophosphamide) was grueling, but it worked and significantly relieved my symptoms. I am now on Faslodex, a promising hormonal treatment not yet approved in Canada, but available on a compassionate basis. It is much easier to tolerate than chemo and has given me a wonderful summer off. Thankfully, I have more energy, can walk without a cane, and the pain is tolerable. However, I suspect more chemo lies ahead, as my cancer markers are rising fast, and I sense the pain is starting to come back.

Like a roller-coaster ride, there have been highs and moments of joy, as well as times of sheer panic and pain. I am learning to hang on tight through the inevitable downward spirals, and to celebrate when things look up, as they can. Without question, it has been tough: the loss of any control over my future, or the illusion of control; the virtual end of a long and satisfying career; lack of mobility and of course the loss of hair. For my daughter, it has been doubly hard as her Dad died of cancer when she was a child. And, then, there's the pain and the fear of further metastases.

But I cope pretty well most of the time. Friends and family have been wonderful as has my metastatic support group. My daughter has been a huge help at home and our relationship has grown. Learning to paint provides challenge and satisfaction. I stay active, try to walk a little every day and kayak when invited to a lake. The beauty of this land calms me and I often find myself praying. I have rejoined a church and plan to volunteer again. I had been waiting "until I was more stable", but now see that stability may not happen with this disease. So I am trying not to put important stuff off any more. Which is why I stay active socially as I can, and have rekindled a romantic relationship, despite my uncertain future. And, why I travel as much as possible, while it is possible. My daughter and I cruised the Alaskan wilderness this summer and I am off to New Zealand in October with my best friend, praying my body holds out. The thing with metastatic cancer is that you just don't know. Today it is sunny and warm. I feel fine and at peace. This is my story and it is not over yet.

*This story was submitted to "Storytelling Circle" on Sept. 21, 2005.
*This article may not be reproduced in any way except by written permission by the author.

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New Program to Meet the Needs of Young Women
Breast Cancer Peer Navigation for Young Women
Young women with breast cancer face unique challenges in terms of loss of fertility, premature menopause, major disruptions to early careers and relationships and concerns for their young children.

Young women with breast cancer often feel separate from their peers and also find themselves isolated from the broader cancer population because of their stage of life and relatively young age.

In response to these realities, a new program, which is a collaborative initiative between Willow Breast Cancer Support & Resource Services, Wellspring and Toronto-Sunnybrook Regional Cancer Centre, is available in Toronto.

In addition to one-on-one support, this program provides:

Client and peer matching to suit individual circumstances, including advanced breast cancer
Flexible support modalities-face-to-face and/or phone support
Information and direction to relevant resources
System navigation
Continuing education and information sessions
Quality control, monitoring and ongoing supervision
For more information, or to register for this service, please contact:

Willow Breast Cancer Support & Resource Services
telephone: 416 778 5000. Ask for Anne or Bonnie
web site: www.willow.org
e-mail: support@willow.org

Wellspring
telephone in Toronto: 416 480 4440 or 416 961 1928
web site: www.wellspring.ca
e-mail: marny@wellspring.ca

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Upcoming Metastatic Event
Living with Cancer: Tools for Metastatic Patients
Discussion Series & Workshops — November, December & January 2006
Wellspring Sunnybrook & Women's

Drumming Workshop: Monday November 28, 2005, 10:30 am - 1 pm
Taking Care of Business While You Can: Monday December 12, 2005, 9:30 am - 1 pm
Riding the Emotional Rollercoaster of a Metastatic Diagnosis: Monday January 16, 2006, 9:30 am - 1 pm
For more information please call: 416-480-4440, Wellspring Sunnybrook & Women's

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Coping With Your Financial Concerns When You Have Breast Cancer Goes National!
"An extremely comprehensive booklet. I find it very useful for my patients. It is so detailed and covers every aspect . . . I love the detail. I use it whenever I do financial counseling for any cancer patients, not just breast cancer"

Alva Murray, Oncology Social Worker,
Toronto Sunnybrook Regional Cancer Centre

Coping with your Financial Concerns when you have Breast Cancer is a fully comprehensive, up-to-date resource to help people deal with the financial difficulties associated with breast cancer.

'Coping' covers such topics as :

Sources of income, government and non-government, when someone is unable to work because of illness
What insurance covers and where to find help for special needs, like wigs, prostheses and drugs
Where to find help for the day-to-day activities: child care, home help, transportation
Sorting out the tough questions around end of life decisions.

Carefully researched and reliable - Coping with Your Financial Concerns When You Have Breast Cancer is another way that Willow helps those living with breast cancer today.

Coping Ontario, Manitoba, and Saskatchewan editions are online now. Visit www.willow.org.
Watch for other editions as they appear.

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What's New at Willow?
STORYTELLING CIRCLE

Whether you are dealing with breast cancer yourself, or you are the friend or family member of someone who is, you are invited to participate in Willow's storytelling circle.

In this new public forum, people can bear witness anonymously to the many challenges of living with breast cancer. It may be a story about being diagnosed, or about the difficulties of recurrences of the disease. You may be the person diagnosed or the daughter or husband of someone diagnosed.

The sharing of stories has healing power - one of the many ways that Willow helps those living with breast cancer today.

To see the Storytelling Circle, go to www.willow.org and click on Storytelling Circle.*

*First names or pseudonyms only protect the identity of the story tellers. Email addresses never appear.

Survivor-to-Survivor
Breast Cancer Support
Breast Cancer Information

Willow provides free accessible information and compassionate peer support to women with breast cancer, their families, friends and caregivers.

Notice of Correction from Summer 2005 Issue
The email address for Carl Morgan, author of "Man to Man", is cmorgan155@cogeco.ca.
"Living" apologizes for this error.