By: Heather Cruz, RN, as told to Stephanie Watson
It’s Not a Fight, It’s a Journey
A lot of times when people come in, with advanced breast cancer in particular, they’re used to hearing the narrative of the “fight against cancer” in the media and from their friends.
That might be OK for someone with an early-stage cancer who will get a finite series of treatments and then come through to the other side. But when you have metastatic cancer, there is no winning the fight. You have to manage cancer like a chronic disease and pace yourself.
You May Not Get the Latest Cutting-Edge Treatment
A lot of people come in wanting to be on the latest new therapy, which could be an immunotherapy or other cutting-edge treatment they’ve heard about on the news.
But the frontline treatments for breast cancer are the standard therapies we’ve been using for a long time. That’s because we know they work.
Treatment Isn’t as Toxic as You Think
Everyone’s Situation Is Different
If you get into an advanced breast cancer support group, some of the people around you might die. That can be very upsetting. Choose your support group carefully. If you want to know what outcome you can expect, ask the members of your medical team.
The Cost of Treatment Can Blindside You
The new specialty breast cancer drugs can be insanely expensive. And until you get sick, you may not know what your insurance will cover. A lot of people think they have great coverage, only to discover it isn’t as good as they thought.
I have one patient in her 70s with advanced breast cancer. She’s always lived a very full life and traveled all over the world. But when her disease progressed she was prescribed an additional medication. Her co-pay was almost $2,000 for a month’s supply. She’s retired, and her treatment took away her ability to travel — the thing she loved doing most.
The financial drain of treatment is something that affects a lot of people. It limits their ability to live life to the fullest. We work to get their drugs covered through prior approval and assistance from the pharmaceutical companies, but it breaks my heart that so many people are stressed about the cost of their treatment instead of looking after themselves and trying to get well.
You Will Need Support
Even someone who’s been living with breast cancer for many years and has come to terms with it will have their moments. It may be when they come in for their follow-up appointments and the enormity of their disease comes flooding back.
Cancer centers like ours offer social workers and counselors. Don’t wait until your next visit if you feel like you need to speak to someone. Social workers are also excellent at framing the conversations you’ll need to have about your cancer with your children and other family members.
Do What Brings You Joy
Living with cancer can be frustrating and stressful. People who have it are often told they’re not allowed to be angry, that they have to stay positive. It’s OK to express your frustration. If you can’t express it to your family, talk to a therapist. There’s something very freeing about being able to say what’s on your mind without fear of judgment or of upsetting anybody.
I also think it’s really important to find what gives you joy. Talk to friends. Take walks. Find things that will help you relax, like acupuncture or massage. Those kinds of things can be great de-stressors.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.