Test Results: Hurry Up and Wait
Diametric opposition. There was such urgency and pressure to schedule and complete tests following my diagnosis. And, at the exact same time, we were waiting for critical pathology results that could arrive at any time -- tomorrow or not for another two weeks -- without which I couldn’t begin treatment. In general the recommendation is to start chemotherapy, if it’s part of your treatment plan, within a month of a cancer diagnosis (May 14).
After I received my diagnosis the next step was a breast MRI which I scheduled for the following Friday.
I think I had hoped that the weekend would deliver some clarity or, at a minimum, some peace and pause. My nervous system was still vibrating after the hypervigilance of the previous 2 weeks and I needed a break. Did I really need to pursue a second opinion? Didn’t it make sense to get all of the test results first? If there is a standard of care for my kind of cancer, do I really need to delay or complicate things by exploring other hospitals and practices?
The surgeon who performed my biopsy called on Monday to check in and also suggested that, after further consideration, I have a CT scan and meet with a Medical Oncologist right away. Then she called back to recommend a bone scan, an ultrasound of my lymph node (the one that wasn’t properly biopsied), another ultrasound of my breast, and another mammogram.
The calls from the surgeon coupled with the impending tests jolted me back to reality.
I felt stupid for waiting so long but I called the leading hospital for breast cancer in New York City 4 days after my diagnosis. Within 2 days I had signed releases, sent copies of my entire medical history, and scheduled appointments with a Surgical Oncologist and a Medical Oncologist. The earliest appointment with the surgeon I wanted to see was June 22. Outside the 1-month window. I worried about this. A lot. But I was also so stressed and busy scheduling tests and scans that I couldn’t fixate on it for too long.
Some days it felt like I received a call from a doctor’s office, scheduling department, or my insurance company every 15 minutes. I was on the phone constantly, trying to track details and schedule then reschedule and consolidate appointments.
Breast MRIs Suck
Look at a this chick. This looks relaxing af. Except it isn’t.
I walked into the MRI room expecting the technicians to ask me what kind of music I wanted to listen to during the scan (whenever I had scans for my kidney they always let me pick and listen to music and I swear that other women told me that they were able to listen to music during their breast MRIs). No dice. I don’t know if this is true of MRI machines in general or if I happened to be stepping into one of the first ones ever to come off the production line, but the technician handed me earplugs to protect my eardrums because the noise of the machine was so loud that it needed to be muffled.
When I got on the table I couldn’t stop thinking about what the technician would see on the screen in front of her. She would know instantly how bad things looked but wouldn’t be able to tell me. It made me feel so vulnerable and scared. Cue the panic attack.
But, no big deal. I could do some deep belly breathing and slow my heart rate in no time. Except I couldn’t. The image above is misleading (or maybe I was really in one of the oldest MRI machines in the country and modern machines are different). I was on an incline starting at my hips up to my ribs. It was hard plastic and when I tried to breathe from my diaphragm my stomach stayed still and my chest and back pushed up and away from the table. I had just been instructed to lay as still as I possibly could so as to not mess up the images. Specifically, don’t move your shoulders and back -- at all. So there I laid. Stuck in a deafening, ancient tube having a panic attack, willing myself to remain motionless for 45 minutes.
Me. Post-MRI. Feeling triumphant af for getting through it (barely).
CT and Bone Scans
In order to see if the cancer had spread to other parts of my body I need a CT scan of my chest and pelvis plus a bone scan. Needless to say, I was terrified to have the scans and receive the results.
Both scans were scheduled for the same day. I had an IV placed for the tracer I’d have injected during the bone scan and the IV contrast needed during the CT scan. I was also given a contrast drink that I had to finish within an hour. It was foul. The IV hurt and I was pretty miserable. After the tracer was injected I was told that I would be radioactive for 3 days and that I shouldn’t be near children for more than 30 minutes at a time. I wanted to sob. I thought that we would tell the kids about my diagnosis that weekend and all they (I) would want to do is snuggle after hearing the news.
Test Results
The MRI confirmed what I already knew about my right breast. There were several ‘satellite tumors’ around the main one and they were likely all connected.
My bone scan was completely clear. I don’t know that I’ve ever breathed as big of a sigh of relief as I did when I found out.
The CT scan showed 2 concerning spots on my liver and 2 on my lungs. The reason I didn’t immediately and completely freak out when I heard these results is because I had a CT scan of my pelvis in 2017 (when I went to the Mayo Clinic to understand what was wrong with my kidney - that’s another story!) that showed similar spots. That CT scan from 2017 showed one hepatic cyst (on my liver) and a 3mm nodule “of doubtful significance” in the middle lobe of my right lung. Now, double the number of suspicious spots on the recent CT scan isn’t ideal news. However, they’re all too small to be biopsied and therefore wouldn’t warrant changing the treatment plan my doctors ultimately recommended.
Pursuing a Second Opinion (and feeling damn good about it)
My surgeon called to share the results of my bone and CT scans. She also told me that the CT scan showed a severely damaged kidney. I wasn’t surprised at all. My right kidney is ‘functionally dead.’ My surgeon was silent. I gave her a quick summary of all my kidney woes and she responded with, “this is something very important to share with your medical team.” Her voice dripped with condescension. I was livid. I had provided an exhaustive written medical history to her office, reviewed my medical history in detail with her nurse and physicians assistant, and I know I told her too because after receiving my diagnosis I asked her if my kidney function would limit my treatment options (it wouldn’t because chemo is metabolized through the liver, not the kidneys).
Normally I wouldn’t have said anything. I would have bitten my lip, forced a smile, and agreed with her. Anything to avoid confrontation. Anything to avoid acting ungrateful. But I couldn’t. Being deferential and polite to a fault wouldn’t change my diagnosis and having a surgeon (who messed up my biopsy, by the way) who liked me wasn’t important any more. So I corrected her. I didn’t dance around it, I didn’t use lots of, “ums” and “well I think I might haves.” I told her that she was wrong.
She didn’t apologize. She just said she must have forgotten that part of my medical history. And the sad part is that I wasn't surprised. I wasn’t expecting a mea culpa. But I felt damn good for sticking up for myself in the most minor of ways.
So when the breast cancer center from NYC called with news that there had been a cancellation and I could get in the following day I jumped at the chance and never looked back.
