Survival Statistics

prognosis
Boy, they sure are cagey about that one, aren't they? I've yet to get a single one of my doctors (3 hematologist/oncologists, and 2 rheumatologists) to give me a straight answer on what a reasonable prognosis might be for my condition, and I am not shy about asking questions. Every time I ask about this the doctor seems to develop a sudden interest in the ceiling...won't make eye contact...I'm not asking for guarantees, only a "best guess". Frustrating. I think they are all so afraid of litigation that they don't want to put themselves out there, and part of me says that you can't blame them for that. Also, each person is of course different, and it's hard to come up with a box that everyone fits into.

According to the American Cancer Society, the 5 year survival rate for MLZ is 91.6% for patients who were under 45 years old at the time of diagnosis. Here is a link to a study showing that the median progression-free survival duration of advanced stage marginal zone lymphoma patients was around 2-5 years, but that more that 80% survived for 10 years:

http://onlinelibrary.wiley.com/doi/10.1111/j.1349-7006.2010.01698.x/pdf

The World Health Organization also publishes prognostic tables that weigh the various risk factors and produce a projected survival expectancy as a result. In my case they don't apply, because I have an autoimmune disorder on top of the lymphoma that essentially means all bets are off, but you can look it up and see what your own doctor thinks.

Remember that more than 25% of patients with with indolent lymphomas - which yours is - have stage 3 or 4 disease, because by definition lymphoma is in your lymphatic system and therefore has spread throughout your body. It's often asymptomatic (mine was) until it's in an advanced state. This is not the same as solid tumor cancer, and a stage 3 or 4 diagnosis isn't a death sentence, as it might be with, say, breast cancer.

Indolent lymphomas are not curable, but they are manageable. The median survival rate, based on what I've read (I am NOT a medical professional) is about 10 years. Most lymphoma patients who undergo chemotherapy go into remission fairly readily, but ultimately relapse and/or develop a more aggressive type of lymphoma. As long as the lymphoma remains indolent, re-treatment with various types of chemotherapy is effective. Many patients live with this disease for years.

I hope this is helpful, even though it does not exactly answer your question in the way that I know you were hoping for.

-Janine

Hi ROF
Hey ROF,

I tend to agree with "you are your own survival statistic".
I've learned to take everything I read with a grain of salt and for the most
part during treatment, I did my best to avoid focusing on survival statistics
and other "numbers" or anything that would put me in a negative thought
pattern.

Don't misunderstand, I didn't bury my head in the sand but I believe your mental
attitude toward this challenge/battle is part of the weaponry against it. As I've
often said, "Attitude and humor are free weapons in this battle". As frightening as all
of this has been and is, I am so grateful for many things and I can still laugh
in the face of my enemy .

Be good to yourself and others.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.

Update?

How are you doing rof? I just got the same diagnosis