If you spend any time reading breast cancer blogs, websites, and comments, you’ll run across the fact that none of us is comfortable waiting to hear the results of our tests. This comes up a lot because we have to wait a lot.
Let’s take my last week and a half or so:
1. I had an appointment with a breast cancer surgeon at Moffitt Cancer Center in Tampa Florida. It was on a Friday and the surgeon told me I very likely have Inflammatory Breast Cancer, also known as “IBC” — a highly aggressive and deadly form of breast cancer with a 5-year survival prognosis of between 25%-50%, and that’s WITH treatment. The “standard” treatment would be chemotherapy to reduce the size of the tumor, then a mastectomy, then removal of the lymph nodes under the arm next to the affected breast, then more chemotherapy, then radiation. So if you’re me, you find yourself thinking “why bother with treatment if my time is short and I want to live as normally, and as free of pain as I can, for as long as I can?”
2. I had to wait through the weekend and then through the first two days of the following week until Wednesday, when I was scheduled for an MRI, a mammogram, and an ultrasound. I’ll skip over the 2 hours I spent waiting for the ultrasound with no explanation about why I was waiting, but note the length of time here: 5 days before any testing began. That’s 5 days to wonder how sick I’d get and for how long. Would I die before the end of the year, or sometime during the next? How long does a woman who refuses treatment for IBC have to live? What options are there for pain management? Are there alternative treatments that work? How would my loved ones (especially my husband and son) feel about it all? Should I tell anyone, or would that forever change my relationship with them: we each change when we learn someone is terminally ill — it’s probably impossible to ignore that elephant in the room. What could I do to make it easier on my friends and family? Is this really happening to me? Until this 5-days of time, I thought I knew what it meant to be alone. It’s much more intense and all-encompassing than I’d known. It’s the kind of thing you can’t change by talking to others or trying to distract yourself. Your focus becomes identified by what you’re going through: you and death have come close enough to hug one another.
3. The MRI, mammogram and ultrasound were done on Wednesday (at the end of which I learned it’s unlikely I have Inflammatory Breast Cancer…more on that in a bit), and then I had to wait until Friday before I returned to the hospital for bone density and CT scans, which (‘natch) took all day. Lots of waiting between injections of dyes, for scanners to be free, ’til the next appointment time, and so on. It doesn’t matter that you have 3 hours to kill while in a town you’re not familiar with and you’ve got to have something healthy to eat for breakfast. (If you’re at Moffitt, you’re in a part of town where you’ll find a Denny’s and a Perkins. Good luck with the healthy eating thing.)
In brief, from my first meeting with the breast cancer surgeon it took a week to get 5 tests done which, in an Emergency Room (E/R) environment, could have taken a day and, let me be honest, when you hear you probably have IBC, it’s an emergency.
It’s now the weekend after the bone and CT scans, and I’m waiting for the results. If I don’t have Inflammatory Breast Cancer, what do I have? The MRI shows a sac full of fluid that looks like a large raindrop. I’ve studied cancer enough to know that a cancerous growth doesn’t have the smooth outline of a raindrop: a cancerous growth is jagged. That’s probably why the radiologist told me he couldn’t rule it out as IBC, but he doesn’t think that’s what it is.
If what I have is another cancer, has it metastasized? Great question! Unfortunately, we’ll need to wait until next Tuesday to find out. That’s when I’m scheduled to see the surgeon who will, no doubt, have a plan for what to do about the sac of fluid. Will it be drained, as the surgeon’s nurse suggested? If so, when? Will there be a biopsy? If so, when? If it’s an infection, will I be put on antibiotics and if so, when? And why let me go so long without them?
I’d heard Moffitt is a great facility. Well, we haven’t had the greatest start. The staff might be wonderful and highly skilled, but as a patient, I’m becoming impatient.
For now, my only bit of advice — should you find yourself in this unwelcoming part of life, is this — you can kill some (not all) “waiting time” by going into denial, which is what I’ve been doing ever since I learned I probably don’t have IBC. Hubby’s my partner in escape. We’ve found ways to distract ourselves and I’ve lightened up on the extreme healthy eating plan for now. It’s easier that way. Sometimes a pizza (with wine) is the exact right thing.