Defining Remission

July 15, 2009. We meet with Dr. Patel in July & I have questions prepared to ask him.

My first question is, “What is my tumor marker number?” It is 30.9. This is a 1.8 point, or 5.5%, decrease. Although I was hoping for a greater drop, I am very happy to see it continuing to drop!

I pose this question: August ’08 I have in my notes that I asked if my cancer could go into remission, & you said, “We don’t use the word remission for stage IV cancer.” Would you still say the same thing?

He smiles as if I’ve made him eat his own words. It was kind of funny. He then explains that the word remission is misused & misunderstood by doctors & patients. He says, “it also gives false hope.” In fact, he says, “the word is rarely used by oncologists today.” He explains that oncologists attempt to use descriptions that can be written in patients’ charts that any other oncologist can read & interpret exactly what is meant by the doctor who writes it. The description he gives to me to replace remission is “near complete resolution with identifiable disease.” This “doctor-speak” makes more sense after I tell you about the rest of the appointment.

Ed & I think we are at this appointment to hear his decision concerning surgery to remove the one lymph node under my left arm that shows some activity. We suspect this won’t be the case. Dr. Patel’s first question to me is, “What have you decided about surgery on the lymph node?” Ed & I look at one another. We are only somewhat surprised; I am prepared with an answer. I have made a decision. Even if Dr. Patel had come in & told me that he wanted to do the surgery, I would have told him I won’t do it. My mind was made up. When I say, “No,” Dr. Patel wants to know why, but he quickly adds that there is no right or wrong answer. He merely wants to hear my reason for saying no.

I had made notes before the appointment so I would not get flustered & sound like someone with flimsy arguments that I had not thought things through, if I had to defend my reason for refusing to have surgery, if I should need to do so. It is interesting that I am not defending my reasons but merely relating them. I have 2 major reasons. Dr. Patel is in 100% agreement with the first reason, but he sees my 2nd argument as a non-issue, which confuses me.

My first reason is simple. There is only slight activity showing in the one lymph node showing activity. What I have been doing, in terms of treatment, has been working very well. I think if I just keep doing what I am currently doing, this last little bit of activity will be history, in the next few months, without undergoing surgery. I get an enthusiastic nod of agreement on this one.

Next, I explain to Dr. Patel that I also decided not to have the surgery because I know there is still undetectable cancer in the areas that no longer show activity, in fact, lots of it. I have my paper with the previously mentioned illustration with me & explain that I am aware of the fact that the imaging technology can only detect tumors of a certain size. He confirms this by stating that the PET/CT can only detect tumors 7mm or larger, which is large enough to be seen by the human eye. (When converted from millimeters to inches, it is just slightly larger than ¼ of an inch.) He says this is why the word remission, as it has been used in the past, gives false hope. He explains that this is the reason for the replacement of the word remission with the description he gave me earlier, to replace the description of a cancer patient whose PET/CT scan no longer shows any evidence of disease – “near complete resolution with identifiable disease.” There is no evidence of disease, but we know there are malignant tumors smaller than the imaging technology is able to detect.

I tell him that I was disturbed by the story of a family member of an acquaintance, with advanced stage cancer, who was told she was in remission because a follow-up PET/CT scan showed no detectable cancer. The family understood this to mean she was cured. She had a follow-up scan a year later, & it showed the cancer reoccurred. The family’s hopes were dashed. They were disillusioned & devastated by the news because they did not understand that remission does not mean cure. (By understanding the growth rate of cancer, her cancer could not have been an entirely “new” occurrence between the 2 scans. The 2nd occurrence was merely undetectable cancer cells growing to a detectable size by the follow-up scan.) Dr. Patel says that is a case in point to illustrate the need to give a better description of the situation.

My question about having surgery, due to having remaining cancer is, “Won’t surgery cause the remaining cancer to grow more rapidly? After my final diagnosis, December 2007, I was told having surgery would be like pouring gasoline on a fire if you are not removing all of it. How has that changed? Is it because I have less cancer now than I did then?”

I don’t get a straight-forward answer, but he doesn’t seem to think it is an issue of great concern. Respectfully, I do. However, it is reassuring to know that Dr. Patel will not consider a scan that shows no activity a sign that I have NO living cancer cells remaining in my body. I learn what I need to know by posing my question & concern.

I ask if it will be another year before I will have another PET/CT scan. Dr. Patel tells me that I will have one in November or December. Because my tumor marker has remained so stable for such a long period of time, it is difficult to determine what is actually happening without a test that is more revealing than the tumor marker test.
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Ed & I have a conversation about the term remission on the way home. He says that he never had the impression that remission equated with cure. As I thought about it I realized that I thought it meant the disease was, for lack of a better word, dormant. If it is dormant, it has the potential to become active again. I guess that means it’s not cured, but I did have the impression that remission was kind of close to cure. I thought someone in remission always had a little fear that the disease could return.
To settle the matter I look it up in Webster’s dictionary to get a formal definition – a lessening or abating of symptoms of a disease. Once I read it I’m not sure that the definition actually settles the matter. This is a bit different from either of my perceptions & somewhat vague, but it surely cannot be construed to mean cure or disease-free.

I check the American Cancer Society definition. Remission: complete or partial disappearance of the signs & symptoms of cancer in response to treatment; the period during which a disease is under control. A remission may not be a cure.
According to these definitions, I think I can define myself as in remission. Praise God!!