Please don't congratulate me.

Please don't congratulate me on my "benign" brain tumor. First, it isn't benign, second, even if it was, you try sticking a benign golf ball sized object in your brain and see how great it feels.

It drives me crazy that because I "only" had surgery to remove my tumor that everyone automatically thinks it was just benign, that its over, done and in the past. Wrong. I had a mixed grade 2/3 astrocytoma...with more qualities of a grade 2 so my doctors suggested deferring treatment until it comes back. I get MRI's every three months, my first one, this past week, showed "potential new growth" already. It's only been four months since I had my surgery (where they "got it all"). We will watch it for a while longer but if it is definitely growing that means likely another surgery and biopsy, then starting radiation and chemo.

I will be the first to tell someone that statistics don't matter, I work as a nurse in a neonatal and pediatric/cardiac intensive care units. If I believed every statistic that came through the door I wouldn't be able to physically or emotionally do the job I do. But I've witnessed miracles, seen kiddos through that 1% chance of survival and I believe that statistics don't predict outcomes.

That being said I am also a realist. I am aware that a grade two astrocytoma comes with a median survival of 7.5 years, and that a grade 3 comes with a median survival of 18 months. At 25 years old neither of those are good options. I am aware that I have a very high chance of recurrence, especially with the higher grade cellularity that my biopsy showed and that because of that any recurrence would likely be a full on grade 3 or 4.

So please don't congratulate me on my benign brain tumor, or think that only 4 months after surgery that I should be "over it". I will get MRI's for the rest of my life, I will never be able to stop worrying that it's going to come back, and it would be too exhausting to tell everyone who congratulates me about these statistics, about these worries and fears because then they just think I'm overreacting, want more attention or worse, WANT to go through chemo and radiation. So please, I wish people would just not mention it at all if you're only going to congratulate me when you do. Please think people, especially if you don't know anything about the topic.

Sigh. Had to get that off my chest!

Comments

  • 4 Comments sorted by Votes Date Added
  • eakelly87;6749 said:
    Please don't congratulate me on my "benign" brain tumor.

    you won't get that here. I don't think any brain tumor is truly "benign".
  • akay83akay83 Community Member
    I will be the first to tell someone that statistics don't matter
    I feel you. The first-line treatment for early-stage Hodgkin's has a whopping 90% five-year survival rate (approx.), and yet as a healthy, active 27-year-old, I somehow fell into that 10% who didn't go into remission. People used to bring up statistics all the time, but two unsuccessful treatments later, no one really brings it up anymore.

    Like you mention, some people don't understand that being done with your scheduled treatment doesn't mean that you're done with the disease. I find that people who don't understand the nuts and bolts of my illness really latch on to things I say and repeat them verbatim, so it might help to change the terms you use when you talk about yourself; when people hear "tumor" and "removed" and see you doing well, they think you must be healthy. Try spreading the word (through the people who do understand) that you're "on watch" -- done with planned treatment, but not necessarily in the clear. Instead of getting congratulations, you might get dumb questions about when you'll be done being on watch, but at least it's a step in the right direction.
  • mtbikernate;6750 said:
    you won't get that here. I don't think any brain tumor is truly "benign".

    I hear you, Glad to have found this place
  • akay83;6754 said:
    I feel you. The first-line treatment for early-stage Hodgkin's has a whopping 90% five-year survival rate (approx.), and yet as a healthy, active 27-year-old, I somehow fell into that 10% who didn't go into remission. People used to bring up statistics all the time, but two unsuccessful treatments later, no one really brings it up anymore.

    Like you mention, some people don't understand that being done with your scheduled treatment doesn't mean that you're done with the disease. I find that people who don't understand the nuts and bolts of my illness really latch on to things I say and repeat them verbatim, so it might help to change the terms you use when you talk about yourself; when people hear "tumor" and "removed" and see you doing well, they think you must be healthy. Try spreading the word (through the people who do understand) that you're "on watch" -- done with planned treatment, but not necessarily in the clear. Instead of getting congratulations, you might get dumb questions about when you'll be done being on watch, but at least it's a step in the right direction.

    I guess I wouldn't have known any better prior to experiencing all this so I can't really blame them but sometime it really just drives me crazy when people don't think! Thanks for the advice, I'll try to change my approach next time it comes up.