The thing is – I’ve had what appears to have been a successful surgery to remove the brain tumor. They removed enough that Dr. Ferriera says it won’t be necessary to go back in again at this time.
Despite research that shows significant differences in long-term outcomes for people who go through radiation therapy vs. people who only have surgery, Ferriera also strongly recommended against radiation therapy at this time. He felt it would certainly cause damage, and may not be necessary in the long run, depending on whether or not the tumor returns. He says recurrence depends on the aggressiveness of the tumor more than anything else, and that this tumor isn’t especially aggressive at this time. Fair enough.
I provided my records to a neurosurgeon on the East Coast because when I contacted him to request a copy of one of his research papers, he offered to have a look at them. His team reviewed the documents and images and felt there was a bit of tumor remaining around the edges, and recommended cyber knife radiation. Interesting. I’ve seen the images, and can understand how someone’s impression of the blobby white bits around the edges might go either way…
As always, my goal is to prevent the tumor from ever returning. What kind of cost is it worth paying to maximize those odds? Even if it did return, Ferriera says it is likely to be slow-growing and therefore very manageable.
I trust Ferriera – he’s the only one who has actually been in my cranium and poked around, so the plan is to have another MRI next year, and revisit the radiation question at that time.
In any case, whether the resection was 100%, left just a few cells floating around, or whether there are chunks of chondrosarcoma remaining (which may go away on their own, sit there doing nothing, or grow over time), there is no way to know whether this is over.
Which is why it digs at my stomach a bit when people say “It looks like you’re as good as new!” or “Now you’ll be able to put this behind you and get on with your life!” or “You must be happy to have all that over with!” I totally get where those sentiments are coming from – I’m just not feeling it, yet. Call me paranoid, but it may take 5-10 years worth of tumor-free MRIs before things start to feel like there’s no sword hanging over my head (although, to be fair, we all kind of have that sword hanging over our head anyway – it’s really just a matter of degrees).
A few weeks ago, I spoke to a doctor who’d had breast cancer four years ago. She said at her last physical she didn’t list the cancer on the paperwork, because she had totally forgotten about it. It made her happy, because forgetting that she’d had cancer showed the extent to which she’d moved on. It was encouraging – maybe in a few years the whole thing will be off my radar, too.
2 thoughts on “Cured”
Hi, came across your blog and just wanted to thank you for sharing your story. I like your Scientifc approach. I am Theresa, a 43 year old Molecular Biologist from Norway, married and three children. Not many people are diagnosed with this kind of tumor. I had mine removed (95 %) in August 2014 (through the nose, endonasal transsphenoidal resection). It was about your size (pingpong ball) I also received proton radiation (74 Gy) at Heidelberg in Germany. Hope you are doing well and wish you all the best. Best regards, Theresa Risberg
Hi, Theresa. Thank you for the lovely comment. It’s a pleasure to hear from you! My husband and I are thinking about Norway for our next vacation. We’ve seen pictures and it looks extraordinarily beautiful.
Congratulations on the successful removal. I hope you made it through with minimal side effects. I’d imagine being a Molecular Biologist would provide some helpful insight into the medical decision-making aspects of the whole process… what a cool career field! Did your radiation go well? How was your endonasal transsphenoidal experience? Did your one-year MRI turn out well after 95% removal?