If you're reading this blog, you're probably aware that this is Lymphoma Awareness Month. It's a good thing -- it's an opportunity for others to learn more about our disease. Lots of organizations are using the opportunity to do just that. If you follow the Follicular Lymphoma Foundation on social media, for example, you've seen their posts so far this month, highlighting symptoms in one, and questions that people have at diagnosis in another. Be sure to like them when you see them.They are good ways to have those posts show up on the feeds of your friends, followers, and connections. It's an easy way to spread awareness.
Almost every year, I make the comment that I really don't need an awareness month. I've been very aware of my Lymphoma for almost 19 years now.
But it's a funny thing -- sometimes we're made aware of things whether we like it or not.
Yesterday, I got a text and an email that there was a new letter in my Electronic Medical Records account. My first reaction was slight panic -- "Now what?" I asked myself.
I haven't had any appointments or tests or anything else in a couple of months. What could one of my many healthcare providers need to tell me?
And what's up with it being a letter? I get the occasional message or result or note. But a letter? Is this 1857?
It turned to to be the very long set of notes from a genetic counselor that I spoke with a few weeks ago. I had put it out of my head.
If you aren't aware of this, a genetic counselor is a healthcare professional that provides advice about getting a genetic test to see if your DNA carries one or more genes that can cause certain cancers. The BACA gene is an example -- it can increase the risk of breast cancer. I have a family history of certain cancers that might have a genetic disposition. (Follicular Lymphoma is not one of them, as far as researchers know.) If I choose, I can have a test that looks for those particular genes. And if it turns out that I have one, I can do things like be tested more earlier or more frequently, or in some cases, have surgery to remove non-vital organs that might be more prone to cancer.
As I said, I had the initial meeting with a counselor and then put it out of my head. I really don't know if I want to do it.
For one thing, I'm already so hyper aware of my own cancer history that I'm not sure it's necessary. I had a benign polyp on my last colonoscopy, so I'm getting tested in 7 years instead of 10. I see my oncologist twice a year. I see my skin doctor twice a year. I know every lump and bump on my body. I know when something doesn't feel right.
So it is the awareness worth it? I don't know.
Of course, the other reason to do this is because we pass on our genes to our children. Is it fair to them to not let them know if they carry a gene that increases risk? (There is never a guarantee that someone with a certain gene will get cancer.) Is it more fair to not tell them, so they don't have to live with the worry that I have experienced for 18 years, wondering if every lump and bum is cancerous?
If I pass on my awareness, is that enough? Will they be vigilant enough to take care of themselves, knowing what I have been through?
I still don't know what I'll do about the genetic counseling.
But I do know that awareness is a good thing. And it's worth celebrating the knowledge that there are tests available that can help us assess our risk. The questionnaire I filled out, and the counselor, both asked if my relatives had been given genetic tests. Of course someone like my grandmother, who was born in 1907 and died in 1986, never had a genetic test. They weren't available.
And that's my point. We're living in a good time. Awareness is about hope. More knowledge might mean an earlier diagnosis and a life saved.
I hope you find something to celebrate this month. Treat yourself well. You deserve it.
