My oncologist said my ultrasound was relatively normal except for a small lesion that could indicate cell regrowth or could be bleeding from the D&C. She mentioned she could have a room full of radiologists look at my ultrasound and they would all probably say it looked normal, which, looking back now, is a bit terrifying. She said to get repeat blood levels the next week and that she would review my case with the tumor board. Apparently that’s a thing. A bunch of oncologists who get together each week to look at tumors, review cases and decide on treatment plans. Does that not sound like the most depressing weekly meeting you could have on your calendar?
On October 16, I left work at my normal time and took my car to Costco to get new tires. This isn’t especially interesting other than the fact that it took forever and I was still sitting at one of the food court tables at 7:30 when my oncologist called. She asked me what I was doing (should have been a red flag) and when I told her, she said “well I really wish you weren’t sitting at Costco – I thought maybe you would be home by now”, to which I responded “Well, it won’t be the first time I’ve cried at Costco, so we should probably just get on with it”. I know this is a really dramatic part of my story, but you should know that I had a full-on breakdown in a Costco aisle when I was about 5 months pregnant because it was “too loud”. Thank you pregnancy hormones.
Here’s a summary of what the doctor had to say as I furiously scribbled notes, interrupted her with a million questions, and hoped the guy sitting way too close to me (seriously man, there are 30 empty tables around and I’m obviously having an extremely private phone call) didn’t notice me trying to wipe away tears before they hit the paper and made my notes unreadable:
She met with the tumor board that day, reviewed my case, and she made them all vote on the best treatment plan. Unanimously, they voted surgery was the only valid treatment, specifically a hysterectomy. This is definitely a Placental Site Trophoblastic Tumor, we aren’t questioning that anymore. Though some of my blood work was questionable and my ultrasound was unremarkable, the pathology was conclusive. The disease itself it called Gestational Trophoblastic Neoplasia. We could try another D&C and/or chemo, but the tumor will probably either come back or not be affected at all, the side effects will suck, and in the meantime, there is a very real possibility the disease will spread. She has seen three cases of PSTT in 20 years of practicing oncology: 1 had a hysterectomy and is fine today, 1 was diagnosed late, had tons of chemo, and unfortunately passed away.
She said there was nothing we need to do urgently today and we had time to get a second opinion if we wanted one, and she could help facilitate that. She said the low HCG levels are characteristic of this tumor, and don’t really tell us much (i.e. low levels don’t necessarily indicate a small or more treatable tumor). We discussed the surgery a bit more and she said a hysterectomy would involve taking the uterus, cervix, and tubes, but the ovaries would stay in place, and I breathed an immense sigh of relief for two reasons: 1. IVF would still be an option if we wanted to explore a gestational carrier down the road and 2. I wouldn’t go into menopause at age 30. She ended the conversation by telling me that we are definitely calling this malignant cancer, that UVA and Mayo agree, but I should focus on the fact that this looks to be treatable even though this was not the treatment plan we were hoping for.
I hung up the phone and retrieved my car keys from the tire guy who probably desperately wanted to go home at this point. They had called me a few times while I was on the phone, but I ignored it because I really didn’t want to say to my oncologist, “hold on, my tires are ready, but please do go on about my cancer”. I went to the parking lot and loaded my car because, oh yeah, before all this started I bought groceries. The sobbing started as soon as I got in my car. Then the screaming and the banging of the steering wheel. I have no idea if anyone was around me, but they definitely got an ear full. I tried to calm down before I started driving, and I didn’t call anyone on the way home because I knew I wouldn’t be able to hold it together. I don’t remember the drive (but I’m sure it was very smooth with my brand new tires).
Charlotte was still awake when I got home, so I snuggled her and put her to bed, crying the whole time. In the meantime, Mason had to drop off my car for an early morning inspection, so we quickly unloaded the groceries and he left before we could talk (just some advice: maybe don’t schedule so many car appointments the week you are supposed to hear from your oncologist – it really complicates things). I collapsed on the bed out of exhaustion and pure sadness. Penny snuggled me until Mason got home. And then I knew I had to tell him. I couldn’t figure out how to start. But he knew something was up the minute he saw my face and I just sobbed in his arms. When I could finally speak, I told him everything the doctor said, interrupted by my brief angry/unintelligible interjections of “I’m so angry” and “this isn’t fair”. We came up with a list of additional questions for the doctor and emailed them to her, I got ready for bed, and cried myself to sleep (though it didn’t take long – I was exhausted). I woke up sobbing at 5am and decided to take the day off.
Life One Step At A Time 