From the always-wise Susan Gubar:

For most people with cancer, life has conventional stages that I can sum up with acronyms: B.C. (before cancer), A.D. (at diagnosis), S.S.N. (some surgical nightmare), RATS (radiation therapies), ICH (in chemotherapy), followed by IRS (in a remission of some number).

Like a growing number of patients today, I inhabit a less familiar state: maintenance. This new phase presents a viable alternative to remission which, I sometimes feel, is not everything it is cracked up to be.

A recent article in the New York Times,  chronicled quite vividly the author’s experience of trying to communicate with people about living with stage IV colon cancer. This article got a tremendous response from people, and it made me realize how lost we all are when it comes to talking about cancer, or about any chronic illness really. We live in a culture where it’s not okay to be ill in public, but at the same time we have this amazing growing ability to diagnose people as chronically ill when they might have previously looked “normal”. And we have a growing disabilities rights movement that is all about making sure that everyone is accommodated in public. So we have sick people walking around looking well, which probably isn’t a new thing at all, and no one knows what the right thing to say is.

The bottom line is that there is no right thing to say. The ability to let go of the need to say the right thing is a wonderful gift, I’ve discovered, as is my tolerance for awkwardness. I am so grateful for the many people who have braved being awkward or inappropriate when they did not have the ‘right thing’ to say was but did not let that stop them from reaching out to me or being with me or my family.  And, luckily, once I threw away any semblance of propriety I opened myself up to hearing what was on people’s minds. If you’re looking for a way to do this, it’s always helpful to acknowledge that some things are terrible, that you’re sorry that your friend is going through this, that you feel sad or anxious, etc.

In the spirit of helping, I put together a list of the some of the terms that are important to cancer patients but where we don’t seem to be working from a common definition.

Cancer – I gave myself an easy one to start with. Cancer is the growth of abnormal cells, mutated from the patient’s own cells. There are many – perhaps countless – types of cancers, so when I was diagnosed with breast cancer, I learned that it has both types and stages, which change how you might treat it. Everyone can have their own theory of what causes cancer, but it’s still pretty mysterious. For example, the majority of breast cancer patients, like me, do not have any ‘risk factors’ in their history such as smoking or having a family member with breast cancer.

Guidelines (also Medical Guidelines, Clinical Guidelines) – this is a really important one. During the past few decades, there has been a movement towards Evidence-Based Medicine (EBM) that analyzes published research in different fields to come out with guiding statements about how patients should be diagnosed and treated.  They are often pointed to as the “gold standard” in knowledge of a particular condition. In the case of cancer, my understanding is that doctors tend to follow the guidelines set out by the National Comprehensive Cancer Network. This means that there is something in writing that should conform to the empirical evidence of as many cases as possible. In my case, Ontario tends to adopt the recommendations of NCCN, resulting in top-quality care available to patients like me. The downside is that guidelines devolve from large-scale research, so they may not address key variables in your specific case (like, for example, the fact that I was diagnosed before the age of 45 with stage IV breast cancer). Also, guidelines lag behind the actual research, so in some cases guidelines may be behind the latest treatments for your particular case.

NED/NEAD/No Evidence of Active Disease – this is a key term for people with stage IV cancer because for most oncologists there is no ‘remission’ for us. Instead, the goal is to get to a state where medical science has beaten back any evidence of disease. For many patients this is Holy Grail of cancer treatment because NEAD status means that everything is working. But achieving NED status does not mean that cancer is gone, as Beth Caldwell wrote: Hope is like a rope that kind people who just don’t get what metster life is like will throw down to you and say, ‘Here, climb this.’ But the problem is, the higher you climb, the harder you fall. And you WILL fall. NED doesn’t mean cured. The cancer is still in there, trying to figure out how to overcome the drug I’m on and start growing again.

Stability – much like NED, this is seen as a good thing. When scans show that tumor(s) have not progressed, then a patient is regarded as being in a state of stability. For most oncologists, like mine, this is seen as a sign that treatments are successful because the cancer is in check.

Progression – this is when cancer is growing where it is or is detected in a new spot. This is generally seen as cause for different action because previous treatments were not totally working.  I’ve come to think of progression as being the thing that is around the next corner. You never know what it’s going to be. I never thought it would be brain tumors, but for me it was brain tumors.

Last fall, I went from a state of NED to progression very quickly when tumors were detected in my brain. Then I had successful surgery and radiation followed by a period of recovery, which is where I still am. Since the beginning of this year, I’m back on maintainance therapy, getting an infusion at the chemo clinic every 3 weeks because the guidelines say that that is the right thing to do. Apparently, there is this thing called the blood-brain barrier that means that drugs that are working from the neck down don’t work the same in your brain. Previously, researchers thought that the brain contained a barrier that keeps the chemo drugs out. Now, they’re not so sure why it is that the brain will grow tumors that they body won’t. The latest crop of cancer drugs have been controlling the growth of cancer well enough in the body that we are, apparently, seeing more and more brain tumors because these drugs just don’t work as well in the brain. When I was diagnosed with breast cancer I read that I had less than a 1-in-5 chance of brain tumors, now it’s looking more like 1-in-2.