Today's guest blog post is from Tina Jacques, a Stage IV Follicular Lymphoma Survivor. We often hear the statement, "that's the good kind of cancer", and Tina tells us her thoughts on if that's the case or not.
I have no fingers left to count how many times I have heard "I've heard that if you're going to get cancer, lymphoma's the one to get" or my personal favorite "oh but lymphoma is the good kind of cancer". People of the world: No. Just no. I understand that this response is likely coming from a very good place in your heart. I know how difficult it is to find comforting words for a cancer patient; I've been there. In fact, just a couple of months before I was diagnosed with cancer, one of my coworkers was diagnosed with a different form of cancer which is generally very treatable. I work in healthcare and I remember having conversations with some of my coworkers about how fortunate she was for having a type of cancer that's easy to treat. I'm glad I didn't actually say anything to that effect to my coworker because now I realize how totally unhelpful that kind of comment is. Not only that, but she's exhausted the gamut of treatment options and is terminally ill. People die of highly treatable cancers every day. From a patient's perspective there most certainly is not a "good one to get".
I was diagnosed at the age of 25 with stage IV follicular lymphoma, a slow growing cancer which generally affects people over the age of 60.
People hear slow growing and they automatically think it's a good thing. Here are the facts that I live with every day:
* Chemotherapy kills fast growing cells. Because follicular lymphoma (grades 1 and 2) grow slowly, chemo is not as effective and the cancer will eventually return.
* Though I have already completed chemotherapy, I still need to receive cancer treatments for the next two years. This is called maintenance therapy.
* When the cancer returns I will need an allogeneic (donor) stem cell transplant. My doctor tells me that that this offers about a 50% chance at a cure. The mortality rate of an allo SCT is around the 30% range.
* According to the FLIPI (follicular lymphoma international prognostic index) I have a 50% chance of surviving the next 10 years.
* I have two little girls who are 4 and 2 years old. I wonder every day how long I'll be around to watch them grow up.
Lymphoma doesn't sound like such a piece of cake anymore, does it? Please, next time you meet somebody with cancer, tell them you are sorry that they are ill. Tell them you understand it must be frightening. Offer to bring them food or clean their house. Tell them they look great even when they don't. But don't ever tell them they've got the good cancer.
The Follicular Lymphoma International Prognostic Index, or FLIPI, is a standardized guide to help oncological diagnosticians accurately calculate survival rates based on certain factors. The relationship of FLIPI score and lymphoma has been the subject of debate, but it is largely valued as a tool.