Statistics

8.0  Overview

About 85% of patients treated for Stage I and II disease survive 5 years free of disease and the great majority of these appear to be cured. In various studies, 50-70% of Stage III and IV patients are disease-free at 5 years. The asymptomatic patients in "A" category tend to do better than symptomatic patients in "B" category.

Presently the type of HD, as evaluated by classification (histologic type), is less important in terms of outcome than in previous decades, although lymphocyte-predominant disease may still have the best outcome and lymphocyte depletion type appears to be the most serious and is often associated with a higher stage. More important for prognosis is the tumor burden and extent of disease (stage).

In general, any mediastinal mass in a Hodgkin's patient worsens the prognosis, especially if it is greater than one third of the thoracic diameter. Prognosis is also dependent upon cell type with the lymphocyte predominant histologic subtype having the best prognosis (LP>NS>MC>LD). Overall, the cure rate is better than 80%.

8.1  Statistics

Survival statistics

Question: My Doctors told me there was an overall cure rate of 70-80%, then they said it was a 5 year survival rate. Can anyone out there explain exactly what that means and what they've been told as far as cure or survival rates and what they are?

The five year survival rate is now better than 80%. The latest numbers I have seen are 82.5%. That was for people diagnosed in 1990 and the survival rates have been climbing a little every year.

I don't think most oncologists ever say the word "cure". Maybe they are afraid that they will get sued. However, I think that once you make 5 years, you are generally considered cured. The odds of a relapse at that point are pretty small.

The National Cancer Institute maintains survival statistics. If you want to wade through them, the addresses are below. A couple of things come to mind that you should consider when viewing these statistics:



1. The longer-term survival rates are pretty worthless. Hodgkin's treatments today are quantum leaps better then treatments of a few years ago. There has not been time for this to be reflected in the longer-term statistics.

2. These statistics are averages. Included in these statistics are people who did bad things like stopped their treatments early or who do better than average!

The two sites are as follows (choose section 9 for Hodgkin's):



• 1973-1995
  http://www-seer.ims.nci.nih.gov/Publications/CSR7395/

• 1973-1994
  http://www-seer.ims.nci.nih.gov/Publications/CSR7394/index.html

By the way, this data is hard to understand. You will understand the most if you print it out and look at it. -- Robert Glen Martin <glen@remission.org>

My stage has a 75% survival rate. Is this as good as it gets?

Actually, the fact that you are reading this indicates that your odds are probably much better than 75%. Here's why. The 75% statistic is derived from the treatment, carried out at least three or four (and probably six to eight) years ago involving a representative cross section of patients of a given stage and undergoing a given treatment protocol.

While this cross section may be representative of the treatment population as a whole, it does not mean the study population is representative of you. By complying closely with your doctor's instructions, not skipping treatments, maintaining proper nutrition, keeping a positive attitude, and getting emotional support (like from the Hodgkin's Disease ListServ!) you are making yourself look more like the individuals who wound up in the 75% and less like a typical member of the 25% group.

Naturally, there are people who do everything right and still wind up in the wrong statistical cluster (how's that for a euphemism?). But, the unvarnished 75%/25% statistics tell only part of the story. When you dig deeper into the numbers into the compliance and other behaviors of the study members, the studies show clear patterns and those patterns reveal markedly higher cure rates for people who fight the good fight, both physiologically and psychologically.

Not only do the studies show this to be the case, we all sense this in an unscientific way. After all, there is just no way that 25% of the Hodgkin's patients on the Hodgkin's Disease ListServ are going to die. Every week we read of people going into remission, but the list members who go the other way are rare as hen's teeth. Coincidence? I think not! -- H. Paul Honsinger <honsinger@martinautomotive.com>

Why are there so many people on the list who have relapsed?

Question: It seems like so many on the list have relapsed. Is this the norm or do the survivors kinda sign off?

While there are plenty of people on this list who are in remission (like me), there is definitely a slant on the list. Most people who go into remission eventually sign off the list and go about their lives. We only see those people again if they have relapses. This can give the impression that the relapse rate is much higher than it actually is. -- Robert Glen Martin <glen@remission.org>