Wow! I can’t believe it’s about 20 months since my last entry. I guess I can blame COVID for putting me into a state of suspended animation. We’ve all used that excuse, haven’t we? But, there’s nothing like wanting to shout the good news from the mountain top to bring you back to living in the real world.
Yesterday, I got my latest PET scan results, and I remain cancer-free! I see my gynecological oncologist in two days to go over the results together - for the last time. More on that in a second.
Through some sort of failed negotiations between our insurance company and my husband’s employer, the Northside Hospital System is no longer a part of our health insurance coverage. Since 2012, I’ve received all my oncologic care from the Northside network, probably the most robust gynecological oncology program in the state of Georgia. So, I’ve got to find a new oncologist, a new thoracic surgeon, a new radiation oncologist, and a new infusion center. I’m sure my current oncologist will have some suggestions for me, but I’m devastated nonetheless. Northside has saved my life at least three times. Going somewhere else is just unthinkable.
But, I will persist. I will find what I need. Right now, however, it seems an impossible task.
Thank goodness I’ve got a clean bill of health at the moment, so I won’t have to rush to find my new oncologist. I’ll have time to do my research and come up with an alternative that will be receptive to my myriad of questions at each encounter.
So, I celebrate, albeit with a slightly heavy heart. Good bye, Northside. You’ve been very good to me.
Hi Beth,
ReplyDeleteSo I just read your blog from way, way back in 2012 and am delighted to see you’re still kicking cancer’s butt 10 years later! I found your blog because I was looking for stories similar to mine. Or to what mine could be. I’m a planner. I like to prepare for best and worst case scenarios. Unfortunately I’m pretty dang sure that “worst case scenario” is what I’m about to be diagnosed with. You know that list of risk factors you posted for endometrial cancer? I check every box, plus two you didn’t have. And the irony is that I didn’t even know I was high risk for endo cancer until yesterday. When I had my 10th transvaginal ultrasound in the last 5 years for abdominal pain, back pain, and abnormal periods (and for being high risk for cancer). But we’ve been looking for ovarian cancer all this time. Way less common than endo—but I’ve got a BRCA1 genetic mutation (thanks Mom) that puts me at high risk for it. So I pretty much ignored my uterus & obsessively screened my breasts & ovaries. Then 2 years ago I was diagnosed with a *second* genetic mutation, this one an ATM mutation (thanks Dad) and somehow I missed, until yesterday, that ATM is linked to endo cancer. It hasn’t even been on my radar. But I was on tamoxifen for 4 years (back before I knew about the ATM, it was supposed to reduced my breast cancer risk), am overweight, started my periods at age 11, have had light, irregular periods up until the last 3-4 years and now I’ve been bleeding heavily for weeks… I’ve never been on birth control, never been pregnant, what else were the risk factors? I can’t remember right now. My ultrasound in the ER last night showed thickened uterine wall (more than twice as thick as my regular screening US showed last November), aneochic foci, and hemorrhage that obstructed the view of half the uterus. They sent me home.
Only one slight hiccup is that I’m 34. And I live in the middle of freaking nowhere. The ER doc didn’t even know what “BRCA” was and didn’t even write “ATM” or “tamoxifen” on the ER notes. Gyno can’t get me in to even talk to me until July 7th… and I’m assuming (that might be overly optimistic about their capabilities) they’re going to want a biopsy so that’ll be even later… it’s June 25th now. I honestly don’t expect good news. I think at this point, if I got good news I’d consider it a miracle. And I am tired of people saying I’m overreacting by adding up all the variables and doing the logical math just because of my age. If you take my age out of it, on paper this looks pretty bad. It’s either cancer or pre-cancer. Either way, goodbye to having kids. All that to say… I hope you’re well. If you’ve got the time I’d love an email to elizabethlotis at gmail dot com you can look me up, I’m not a scammer. Liz Otis, I —the irony never stops—run a support group on FB called “Young Previvors” that is for women at high risk for breast & ovarian cancer, so you can check my story out that way, though I haven’t said anything to the group about this & wont until I know for sure… but yeah. Random Beth I found on the internet… what do you think? Do I stick to my guns and be the annoying female patient who irritates doctors & nurses trying to advocate for herself? Or is my family right? Am I too young? Am I overreacting? My cousins had breast cancer at 22, 28, and 29 so I am a little sensitive to the “you’re too young” argument… but I bet you tell it like it is. So tell me, how is it?
I’m so sorry I’m just now seeing your comment. I turned off my notifications a while back when I got inundated with spam. I hope you’re doing well and have more answers than questions. Advocate! Advocate! Advocate!
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