One thing that has struck me as I have gone through my journey with breast cancer is the language we use. I’m guessing part of it is because I am a linguist at heart. Our language colors our perception and can invoke strong emotions unexpectedly yet we often don’t give it much thought. This is the first in a series of posts about the language of breast cancer.
So who is NED? N.E.D. stands for “No Evidence of Disease”. Many of my cancer friends say things like “I’m dancing with N.E.D.” or “Hoping for a lifelong affair with N.E.D” Dancing with N.E.D. is a cause for celebration. I saw a copy of my medical records last summer and my status is listed as bilateral synchronous stage 2b breast cancer, currently no evidence of disease. N.E.D. is what we all hope for but I think the terminology is often misunderstood.
I often get questions like “So you are cured right?” or “Are you in remission?” or “So glad your treatment is over!” I have a real hard time responding as I know what they are trying to ask but the language they are using is not something I hear from my doctors. There is a common misconception that when you have breast cancer you go through horrible treatment, but then you graduate, collect your pink ribbon and diploma and move on with your life just as it was before. I think this partly stems from all of the pink advertising that focuses on things like “5 year survival rate is 98%” which makes it appear that we have made giant strides and are just inches away from a cure. I’ve written elsewhere about the stats so I won’t expound on that here but while we have made progress, most people are very surprised to find out that metastatic breast cancer is incurable, 30% of those diagnosed with early stage disease go on to a metastatic diagnosis and we are still losing 40,000 people in the U.S. every year.
The other thing that I think is contributing is that there seems to be a slow but steady shift in how we think about cancer. The language is currently in flux so two patients with the exact same diagnosis and treatment may use different language because their doctors do. I’ve only had one medical professional use the words “cancer free”. It was right after my double mastectomy and I’m not even sure who it was. A male voice (maybe a nurse?) said “Congratulations! You are cancer free!” I’ve also never had a medical person use the word “remission” or “cure” regarding my current status. I’m the type of patient who does a ton of research and wants to be involved in any medical decisions so my doctors have been very open and honest with me. We all hope that my cancer never returns and because I had very slow growing tumors, statistically I have a good shot at dying from something else, hopefully a really long time from now. But we are all aware that each case is different and it could come back at any time. In fact my tumors were so slow growing that if a cell or two got loose somewhere in my body, I probably won’t find out about it for 10 years or more. I will most likely get the chance to see my kids grow up while a lot of young people diagnosed with breast cancer never get that chance.
In the past cancer was seen as a progression. So the belief was that if you caught it early, you would prevent it from progressing to a late stage. But as we learn more about cancerous cells it is becoming apparent that the blanket early detection/progression model doesn’t work. There are several different types of breast cancer that all progress differently. There are slow growing cells that may never become invasive, rapidly growing cells that seem to go metastatic no matter how early you catch them and everything in between. Susan Love wrote a great article I read at the beginning of my journey about the advances we were making in studying cancer cells and precancerous cells. One thing I learned was that really no one is cancer free. There are cells in all bodies that go rogue but we think that in most cases our immune system takes care of them. She also talked about the fact that in the future cancer may be defined by the type of cell rather than where the tumor occurs in the body. Some of the most promising treatments today are targeted to the biology of a particular type of cancer cell.
So back to N.E.D. – what does it really mean? It means that at the present time there is no evidence of cancer in your body. It doesn’t necessarily mean you are finished with treatment and it definitely doesn’t mean that there are no cancer cells present. In my case I have 4-9 more years on daily medication to suppress estrogen and starve any cells that might be loose in my body after treatment. Hopefully at that point I will need no more treatment and will dance with N.E.D. for the rest of my life. In the case of someone with metastatic breast cancer it means whatever treatment they are currently taking is working. With metastatic breast cancer treatment doesn’t end. The goal is to find a treatment that gives a patient N.E.D. status and hope that it continues to work for many years. When a treatment stops working, they move on to another until there are no more options. I can’t imagine how that must feel.
So yes, N.E.D. is a cause for celebration. When I hear a friend is dancing with N.E.D. I do a happy dance kind of like Snoopy. But I know that it doesn’t mean they are cured. It does not mean their journey is over. It doesn’t mean they no longer need my support. My wish is that all of us with breast cancer could dance with N.E.D. for life. And that N.E.D. can eventually retire his dancing shoes because we found a way to prevent cancer from occurring in the first place. Until then we need research.
Please join us in our efforts to retire N.E.D.’s dancing shoes permanently. N.E.D. is a great dance partner when you are drafted to the cancer ball, but I hope future generations never need him. When you buy something pink or donate to a charity, make sure you know where your money is going. I’ll be posting a page of cancer charities that I believe in on this blog soon. I’d welcome recommendations of both national and local charities you support. In the meantime if you want 100% of your donated funds to go to research for metastatic breast cancer consider Metavivor.