Here's a typical story of metastatic disease. A woman gets diagnosed with advanced breast cancer. Investigations reveal that the tumor has spread to multiple organs. The oncologists start treatment. The tumor responds. Then it stops responding. Treatments get changed. The oncologists get changed. Opinions come in from well wishers in different corners of the world. The patients and families go from one doctor to another and from chemotherapy to homeopathy, hoping something "works". The story ends, "We tried all possible treatments, yet they all failed and we couldn't save her life."
Families are often left feeling cheated by expensive treatments, guilty they couldn't help the patient and wondering if the pursuit was worth it.
More often than not in these cases, there's a dialogue that needed to happen between the family and the oncologist, but was missed. If it was articulated by the oncologist, then it wasn't always heard by the family. This dialogue then needs to be shared with primary care doctors and well wishers. Its meant to serve as a guide on what to expect in metastatic disease, how to justify treatments when there is no "cure" and help the patient and family will cope with the journey ahead. The details will change from case to case, but here's the crux of what I think should be said.
"Unfortunately, metastatic breast cancer cannot be cured. Patients learn to live "with the disease" for the rest of their lives, as do patients with hypertension or diabetes" (I'm not trivializing the disease, but simply pointing to its chronicity.) "The goal of treatments will be to allow you to increase your lifespan beyond what it would be without treatment, and minimize any pain or discomfort that may arise in the course of the condition."
"The tumor will likely respond well to the treatment we're starting, and you will feel better soon. Our hope is that the treatment will control the disease for a long time and prevent the cancer from growing and spreading."
"The likely reality is that at some point, the tumor will change its behavior and figure out a way to grow in-spite of the treatment we're giving. This could happen in a few weeks, months or a few years- we can't be sure at this time. We will obtain new information and change our treatment strategy at that point. The new treatment will also work for a finite period of time. With each new strategy, we will have bought more time."
"There will be times you may question if the treatments we're choosing are correct or whether they're working at all. If a treatment stops working after 6 months, it doesn't mean we failed, it means we were able to buy few months of extra time."
"Don't put your life on hold while going through these treatments. Don't forget to live life on the 'well days' you get between chemo cycles. If you want to play with your grandchildren then do it, because cancer doesn't spread by touching. If you want to write letters for your young children to read when they grow up, then make some quiet time to do it. If you have to make a will, put your financial affairs in order, schedule your lawyers appointments between chemo cycles. If you want to catch up with a friend but can't find time, ask if he or she can accompany you to your appointments. If you feel up to it sometime, then go for the family vacation you were planning. When you need to rest, take it easy and rest.
There will be some good days and some bad days. We're here with you so you can minimize the bad days and make the most of your good ones."
I remember 2 years ago, sitting across the table from a 28 year old girl with advanced breast cancer. We'd just reviewed her PET CT reports that showed widespread metastatic disease. She shuffled in her chair, looked up with expectant eyes and said "I don't fear treatments, I just want to live a very long life" A year and a half later, she died. She didn't "beat" cancer, didn't kick cancer's butt and is not a poster-child of survivorship. That's as much a reality of breast cancer as are stories of more hope and success. There's a lot more the oncology community owes these patients, the least we can start with is a truthful dialogue.