18 Years Strong: Living with Metastatic Breast Cancer

During October, the color pink takes center stage to raise awareness for breast cancer. In recent years, however, purple is also beginning to break through as the color of metastatic breast cancer (MBC) awareness. Approximately 151,000 women in the U.S. are currently living with MBC, which occurs when cancer cells spread beyond the initial tumor site to other parts of the breast or body. The needs and experiences of this community differ greatly from those diagnosed with early-stage disease and women living with MBC will remain in treatment for the rest of their lives.

When doctors diagnosed Kristin Johnson St. Goddard with metastatic breast cancer, she was given 18 months to live. Fast forward 18 years and different treatment regimens - Kristin is still going strong.  While some days are challenging, she continues to lead a good life, and remains hopeful that one day, there will be a cure. Below, she shares her experience.

Kristin, pictured here with her youngest son, looks to family for inspiration during her journey

Kristin also enjoys spending time with her cousin and is appreciative of the natural beauty that she is surrounded by in rural Montana

What was your reaction to your MBC diagnosis and how did that change over time?

Kristin: I was devastated when I was told I had less than 2 years to live. I couldn’t believe this was happening to me. First of all, I didn’t even know what MBC was. I didn’t know anyone who had MBC and I had no one to talk to. After the first few years of treatment and I was still alive, living a good life, I felt more hopeful.

How do you prepare yourself for a new treatment regimen and what are your expectations?

Kristin: I talk to my doctor and nurses to see how other patients respond to the treatment. You can’t really know what to expect until you have a couple of treatments, as each treatment is different. I always mourn the loss of my current treatment because that’s one less treatment I have going forward.  When I begin a new treatment I have no expectations. I just hope it works and gives me more time. 

What has been most helpful to you along your MBC journey?

Kristin: I have found support groups to be the most helpful resource during my MBC journey. It always helps to talk to someone who is going through what you’re going through. Your friends and family can sympathize with you and are there for you, but they can’t speak the same language you do. The knowledge and support you gain from other people in support groups is invaluable. You’re only with your doctor a short period of time during appointments, but you have cancer 24/7. You can form many friendships in your group, and there is usually someone available to talk at any time if you need additional support.

What has been the best advice you have received since you were diagnosed?

Kristin: Know what’s going on with your disease and your treatment. Stay current!

What inspires you?

Kristin: I live in rural Montana, at the eastern entrance to Glacier National Park. I get inspired by the natural beauty of the area I live in. I also am inspired by the people around me, my friends and my family. I’m fortunate to be surrounded by hardworking, Montana folks - salt of the earth kind of people.

What advice do you have for those newly diagnosed with MBC?

Kristin: Educate yourself, know as much as you can about your disease. Keep a journal of your treatments, your dosage, your test results, what medicines you’re on, etc. Double check everything all the time - you’d be surprised at how many little mistakes can be made. Be on top of things. Don’t be afraid to ask your doctor and nurses if you don’t understand something or if you want more information. It’s your life; no one cares about you as much as you do. 

How have you seen the MBC conversation evolve since you were diagnosed?

Kristin: Discussions about MBC didn’t exist when I was diagnosed. Remember I’m from rural Montana, I had little information and no one to ask. Women didn’t want to talk about what happens if your cancer returns or spreads. However, in the last few years, MBC has been brought to the forefront of many cancer conversations. They talk about it because there is now hope, there are more treatments and you can live a productive life. We’re moving past pink, past simply raising awareness about breast cancer.  Women, in particular, want more action. We’re aware - we got that down. Now, let’s move forward. Women are still dying in large numbers from this disease. We can’t slow down looking for a cure.

Can you tell us about your experience as a volunteer with Cancer Pathways?

Kristin: I have benefitted greatly from my association with Cancer Pathways (Formerly Gilda’s Club -Seattle). I enjoy meeting people from all different walks of life who have the same thing in common, cancer. Cancer Pathways does a wonderful job of providing resources for everyone touched by cancer. It’s not only for the patient, but also for friends, family and caregivers as well. Unfortunately, cancer touches everyone. Everyone has questions and needs help and support. Cancer Pathways provides medicine for the mind.

Cancer Pathways offers a program of educational, supportive, and community options for men, women, teens and children living with cancer along with their families and friends. Programs are offered in Seattle and throughout the State with collaborating partners in varied locations such as hospitals, community centers and schools.