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Last modified on
Tue Mar 12 2002 21:47:55 PST

Remission


7.  Remission

    7.0  Overview

    7.1  The cure

      Why do I still have tumors after treatment?

    7.2  Relapse

      How do I cope with my fear of relapse?

7.0  Overview

    During the treatment phase, Hodgkin's patients are usually focused on the goal and getting by day to day. Boy I can't wait until I'm cured. I'll really be glad when chemo is over. If I can just get past this bit of nausea. Their loved ones and care providers all have the same objective. The focus is intense. Everyone knows how success is defined and they are all pushing for it.

    Finally after all the chemo, after all the radiation, after all the prodding, poking, sticking, and testing, there it is. There's the finish line off in the distance. It's getting closer and closer and finally you burst through! You've done it, you're in remission!! Wow, what a relief!!!

    Now it's the next morning. The party was last night and the balloons are starting to loose their buoyancy and are drifting down to the floor. What now? Maybe you begin to wonder about relapse. Maybe you have or will have some treatment related side effects.

    No problem you say, my support team will help me!

    Hey!, where is everybody?! Where are my oncologist and chemo nurses? Where are my friends and family? Where is me? Suddenly you realize that the support team has disbanded. The oncologist and staff are off dealing with sick patients that need them, remember you are in remission. Your friends and family are back to their normal routine, remember you are cured. Even part of you has left the team, the goal that you have been so focused on has been achieved.

    So now you understand the great paradox of conquering cancer. By achieving success you have also achieved a loss of focus and support. But you still have to deal with the future. This section is for you.

    P.S. Don't forget the Hodgkin's Disease ListServ as a source of emotional and intellectual support. We're still here for you.


7.1  The cure

Why do I still have tumors after treatment?

    We all grow up hearing about cancer and, based on what we have heard, we have certain expectations. One of those expectations relates to how tumors work. A classic solid tissue tumor, like lung cancer or most brain tumors, is 100 percent cancer cells. You know the cancer is gone (except for errant cells that might have metastasized through the body) when the tumor is gone. You take an x-ray and it is clear, so you know you have killed the tumor.

    Well, these neat expectations go out the window when you are dealing with Hodgkin's. You see, in Hodgkin's (especially in Nodular Sclerosing Disease, which is the type with which I am most familiar) you have very few actual cancer cells, known as Reed-Sternberg Cells and Lacunar Cells. In fact, so few are present that they can be hard to find in a biopsy slide. Most of the inflamed node is "reactive" tissue. The body responds to the presence of the cancer cells and the substances they produce by manufacturing a lot of other tissues that constitute far more than 99% of the tumor mass.

    When you take chemo or radiation, it kills the Reed-Sternberg and Lacunar cells, but leaves the reactive tissues in place. The body senses that the cancer cells are gone and specialized cells called Lysosomes go in and break up much or most of the reactive cells thereby greatly reducing the size of the tumor masses. However, the body leaves a considerable amount of the reactive tissue, now mostly scar tissue--which is what the "granuloma" referred to by your doctor is. So, if you have any kind of mediastinal or significant abdominal involvement, the x-rays and CT scans never come back "clean." In many people, the residual scar tissue continues to shrink slowly over time; in others it stabilizes quite quickly after remission is achieved.

    Naturally, this situation greatly complicates monitoring Hodgkin's patients for relapse. The doctors can't just look for a "clean" radiology result, but must look at the scar tissue to see if it is growing or changing shape.

    This scar tissue is also one of the prime reasons for giving radiation therapy after radiation in the case of bulky disease. Many of the larger tumors don't have good enough circulation to bring the chemo in its full strength into contact with every cell in the tumor. So, the radiation reaches those cells that might have been hiding in the recesses of the larger masses. -- H. Paul Honsinger <honsinger@martinautomotive.com>


7.2  Relapse

How do I cope with my fear of relapse?

    Here is the mental process I use to deal with my fear of relapse. The hardest part for me is accepting that the chance of relapse is there all the time. As far as I know, there is nothing in my power that can add or detract in any way from the chance of it taking place. I live with it, but I also live with the knowledge that each passing day makes it less likely. I like control and it is very difficult for me to accept things that are beyond my control, but accept this I must. Having accomplished that, I then move on to what I can control. Here is what I do.

    First, I am ever mindful that an alert (but not panicky) patient, combined with a good doctor, following a reasonable program of follow up care, are my best life insurance. I know of a study that showed that most relapses are detected by the patient, not fancy scans or lab tests. Being watchful means that we will catch the cancer early, if it does return, thereby giving me better odds of surviving.

    Second, I remind myself that relapse is not a death sentence. The Hodgkin's Disease ListServ is full of relapse survivors, some of them two or three time recidivists. If caught early and fought aggressively, relapsed HD is still highly curable.

    Third, I know in my heart that, if I relapse, I'm going to fight with every weapon available. To paraphrase General Patton, "we're going to hold it by the nodes and kick it in the ass." [I recognize that many people, especially those not in the U.S. may not be familiar with the career of the brilliant, aggressive, and somewhat cracked WWII commander and that others may know of him only through the 1971 movie about him strongly influenced by General Omar Bradley who hated his guts--that is your loss; Gen. Patton is no Jean-Luc Picard, but he knew what to do to an enemy--fight it with everything you've got and keep hitting it hard until it is well and truly dead].

    Fourth, I tell myself that, if I let fear of cancer dominate my life, then I have let the cancer win just a surely as if it had killed me. I will not accept a life overshadowed forever by cancer just as I will not accept a life cut short by cancer. Certainly, my life has been forever changed by having had cancer, but I have the choice of whether that change is going to be a source of strength or a source of doubt. I choose to make it a source of strength. I choose to be a stronger, more courageous, more proactive person who has learned from the experience of fighting cancer that my life is a precious gift. By making that choice, I am exercising control over my life; I am exercising power over the cancer that came into my life and disrupted it so horribly.

    These are all incomplete answers to your very difficult problem. In the final analysis, the ultimate victory each of us wins over this disease comes, not with a bang, but with a whimper. It comes years later, when we are gradually convinced by each clean checkup and each relapse scare that turns out to be something else that the cancer is gone for good. It is a victory that we win, not in some giant leap, but by tiny, faltering, difficult steps. It is a victory that we win by millimeters.

    May we all advance a few millimeters today. -- H. Paul Honsinger <honsinger@martinautomotive.com>

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