What is it like to live with metastatic breast cancer? Once one learns about the treatments and types of metastatic breast cancer, the emotional reality sets in. People with cancer diagnosed at Stages I, II, or even III hope to hear words like "cure," "remission," or "No Evidence of Disease (NED)" at the end of their treatment.
Although some Stage IV patients go into remission, more frequently they are hoping to hear words like "stable" or "no progression." In Part 4 of this series on metastatic breast cancer, four members of my on-line inflammatory breast cancer community have agreed to share their stories of what it is like to live with metastatic disease.
Jen was only 33 in 2009 when she was diagnosed with Stage IV inflammatory breast cancer (IBC). Her first oncologist did not offer her any encouragement. With the memory of her own mother's death at age 36 from IBC, Jen was shattered. Her determination to see her two young sons grow up led her to find a new oncologist who is willing to treat her disease aggressively.
Jen says, "What brought me strength were my friends, family, and co-workers. Three weeks after I was diagnosed, I got a letter in the mail telling me I was accepted into the nursing program! I had worked for 2.5 years to get into nursing to fulfill my dream to help others. With my new oncologist's support, I started nursing school in the spring and made a 3.5GPA. I am currently in my 2nd semester and doing well. (so far) I have a wonderful support group that keeps me strong. I truly believe you are only as strong as your support system because I honestly don't think I would be doing so well emotionally if I hadn't had the support that I have been blessed to have. "
Jen's coworkers rallied around her, and her treatments worked well on the cancer in her spine, and the area of skin mets shrank. But Stage IV disease is tricky and persistent. While some areas of cancer were shrinking, new lumps were showing up. "It was a punch to the stomach when I found the new lumps," she says, "but I know God has a plan for me and I just stay positive. When I feel down, I go to my husband for comfort, but I look at my children and tell myself that if tomorrow doesn't come, will they know I loved them? I try to make each day count, like hug my family and tell them I love you, help others, and try to be inspirational to others while educating them about signs and symptoms about IBC."
Mary, diagnosed with IBC at Stage IV with mets to her spine and liver, has also been able to maintain her work and family commitments while in treatment. Her treatments destroyed the cancer, and she is doing well. Mary says, "Mentally, it's overwhelming. My life is consumed by bills, internet research, medical appointments and treatments. This is on top of trying to keep some level of ‘normalcy' by maintaining a full-time job, taking care of my husband and daughter, spending time on my hobby (needlepoint) and spending some quality time with friends.
"Emotionally, it scares me to death to think of the unknown. My fear is not knowing when this cancer will take me down. Our daughter is only 7 yrs old and it scares me to think that she could be stripped of having a mother to look upon for guidance, and emotional support. I try to focus every day to live my life as much as possible as I lived it before my diagnosis. But the reality is that it will never be the same. It's like having a child. It changes the dynamics of a marriage and is just a different way of life. That's what this cancer diagnosis has done. It has forced me to accept that I have to include it as part of my life every day."
Mary continues, "It's frightening not knowing if my current treatment will be successful long term, whether my body will end up with other issues as a result of all this toxic medicine in my body, and whether I will suffer when the day comes that this cancer will take over (unless of course new medicine will be discovered to help eradicate or at least stabilize this cancer). But at the same time I'm feeling great. People ask me all the time how I am feeling. And despite my minor aches and pains, I always end the sentence with, ‘but I really can't complain.' In the past year I've only missed work two days, I was able to continue going to the gym, maintain my house and care for my family. This was done even through chemo, radiation, and a hysterectomy,. I thank God every day that I still have my mind, my body and my life. It may not be what I wanted, but I really can't complain."
Kate signs off on her posts to our online community with "Damn the statistics--Cancer is picking on the wrong opponent and I intend to win!" She has retired from her work on disability and travels between treatments. She even timed her chemo to go to her daughter's wedding. She says the hardest thing about being Stage IV is "the mental shift I had to make when it finally hit me I wasn't going to be done with treatment."
Still she is delighted with her recent test results showing no signs of the bone mets she had on diagnosis. Her skin mets are stable for now with no signs of progression. When I talked with Kate, what I found most striking was the way she has taken charge of her treatments. She and her doctor are working together to find treatments that will keep her cancer under control while allowing her to exercise and travel.
Peggy has been in treatment for Stage IV IBC with mets to the spine and hip since February 2000. The treatments have kept her stable. She says, "I never stop getting nervous when I have scans or other tests. To deal with this, I try to focus on the moment and live day to day. It isn't easy, though, when the doctor orders extra tests after reviewing scan results. I recently had a CT scan which showed some "thickening", prompting the doctor to send me for a colonoscopy. I watched a lot of movies to pass some of the time till the colon test, which came back OK."
Peggy has several suggestions for coping with cancer stress. "I have to keep reminding myself to live my life despite nervousness about cancer-related things. I've always tended to 'borrow trouble', so it's a constant struggle to avoid doing that. Being with family and friends helps, getting into a good book, and exercising also help to dispel nerves. Participating in a senior singing group is also very meaningful for me.
"Another thing that helps me," she says, "is to know that I am doing something to help myself, specifically, supporting my immune system by eating well and exercising. Feeling that I can do something makes me feel more empowered."
I've known many Stage IV breast cancer patients who have lived for years with their disease. Sadly too many have died prematurely. Still I have been struck with how many have followed the model of Jen, Mary, Kate, and Peggy. They find out about the latest treatments, consult with doctors who are willing to treat their disease aggressively, find support from faith and family, and then they continue with the activities that bring meaning to their lives for as long as possible. These days "as long as possible" is longer than it used to be.
Published On: October 31, 2010