The news that Olivia Newton-John’s breast cancer has returned, a full 20 years after her original diagnosis and treatment, has many wondering, How does this even happen?
A diagnosis of stage IV, or metastatic breast cancer (MBC) brings with it a life-changing and ongoing process of grieving and adjustment and treatment changes. This can be very isolating, especially when friends and family don’t understand what is happening and what to expect.
Here are 10 things to know, so you can support a sister going through it.
- Cancer can be a fugitive. In the treatment of early stage breast cancer, surgery (lumpectomy or mastectomy) is done to remove the tumor cells from the breast. Sometimes, these cells are fugitives who leave the breast, traveling through the body and looking to adapt and set up someplace else (most often bones, lungs, liver, or brain). We don’t yet have an ankle-bracelet-type system so that we know where they are, and what they’re up to, before they cause a problem. This is why surgery is most often followed by systemic therapy, such as hormone therapy or chemotherapy; think of it as a sweep to pick up bad guys who may or may not be out there.
- “Why don’t they do more scans?” Even the most sensitive imaging available today won’t detect these cells when they are few in number and just getting started. Clinical trials have shown that scans after early-stage breast cancer treatment decrease quality of life – ask any cancer survivor what “scanxiety” feels like – and, most importantly, don’t extend survival. Following cancer treatment, monitoring symptoms is the best way to know if there’s a problem; pain or other symptoms that persist for more than a couple of weeks should be evaluated by an oncology or primary care provider.
- The cancer never really left. When breast cancer “comes back” in another place following diagnosis and treatment for early stage disease, it is because those cells have actually been there, quiet, the whole time. This is why breast cancer doctors avoid proclaiming their patients “cured”, why even early-stage survivors often struggle to shake fear of recurrence, and why five years breast-cancer-free is sometimes no guarantee. Aggressive, fast-growing cancers that have spread can’t go too long in their new home without causing trouble, so tend to show up within 3-5 years. More slow-growing, less aggressive cancers can stay under the radar for longer periods of time, even as long as 10 or 20 years.
- “So if it’s in the bone, is it bone cancer?” No. Looked at under the microscope, the cells are still breast cancer cells; they have just learned to adapt enough to grow in this new place. The thing that makes cancer cancer is its ability to be a shape-shifter, to change and adapt and learn to grow in a way and in a place that it was never meant to be.
- “That’s why I would have a double mastectomy.” Unless there is a known genetic mutation (such as the BRCA1 or BRCA2 gene) having both breasts removed does not increase a chance of a cure or prolong survival. While this choice has recently gained popularity, particularly in women who have already been diagnosed a young age and want to decrease the chance of getting another breast cancer over the course of their lives, surgical choice has no effect on cells which may or may not already have escaped the breast.
- Metastatic breast cancer is treatable but not curable. Once the cancer has spread outside of the breast, it is no longer curable, though there are often many different types of treatments available, and current clinical trials promise many new treatments in the future. MBC patients can live with their disease for a long time, in a way that is not exactly the same but is most easily compared to living with a chronic illness such as diabetes or lupus.
- “But you still have your hair.” Increasingly, breast cancer treatments are tailored to the specific characteristics of the tumor, and many powerful and effective treatments, such as hormone therapies and targeted therapies, do not cause hair loss. Hair loss is not a good indicator of stage or extent of disease or response to treatment.
- “When will your treatment be done?” MBC patients will remain in treatment for the remainder of their lives. Often, the cancer continues to shape-shift and adapt around treatment, eventually making previously effective treatments ineffective, and requiring changes to the next type of treatment.
- “I saw a new miracle treatment on Facebook….” Flashy news headlines and social media posts often include findings still in the laboratory, lacking scientific rigor, or not proven in clinical trials. Instead of sending new ideas which may add to her anxiety, support her by checking in before her scan to acknowledge that it may be an anxious time; ask her about how the new treatment feels as compared to the last one. Let her know that you support the treatment decisions that she and her provider are making together.
- It’s hard when your friend is hurting and you don’t know what to say. She may be social and herself one day and withdrawn and unresponsive another. This is how it goes. Keep letting her know you’re thinking of her without needing or expecting a response. Make specific offers of help: to bring milk and bread by on your way home from the store, to pick up her girl on your way to the pool. Let her know that you’re there for her for the big stuff, like doing the ugly cry about her fear for her children, or the little stuff, like chatting about normal things, without dwelling on cancer. Channel a bit of her courage and sit with her, listening carefully to what she is saying, hearing where she is today, and what she is going through. And when you don’t know what to say, just being with her to bear witness, understanding that sometimes, there are no words.
#52for52: Posting once a week, all 52 weeks of my 52nd year (1/52)