Someone said that the hardest part about determining whether you have cancer is the waiting. I don’t know about that, as it was only ten days between my initial call to the doctor and my diagnosis (D.C. doctors ROCK!), but I will say that the waiting is difficult. The other thing that I have found difficult is the tests. I’ve had so many tests already that I’m having a hard time keeping them straight. If you are too, or you’re curious about how this whole diagnosis thing goes down, then here’s a post for you. (If you’re not, that’s okay. Thanks for stopping by.)
- Step 1. OB exam – this is easy; just the regular ol’ clinical breast exam.
- Step 2. Oncologist exam – same as above, but with more “um-hmms” and a nicer changing room. With curtains. Inside the regular exam room. As if the little cloth gown isn’t coming right off.
- Step 3. Mammogram – tons of women have written about this, so I won’t add much to description except to say that yes. they do squish ’em flat. And then they turn the screw on the plate to squish ’em a little more. (I remember seeing a number that said it was using 27 Newtons of force. Surely that can’t be right!) That part might be uncomfortable. It was painful to me on the affected side, but only briefly. Oh. And something very important about this test. Pregnant and/or nursing women CAN have mammograms. In fact, if you’re pregnant and/or lactating for a number of years, you may wish to talk to your OB/GYN about it preventatively. It takes an experienced radiologist to read the exams, but it may be worth it. Most radiology centers that perform 15-20 or more scans a day have someone on staff who can read a mammogram of a lactating breast.
- Step 4. Ultrasound – this exam is pretty simple and non-invasive. Unlike the mammogram, where you stand while they squish ’em, this test is easy and relaxing. I just lay down on the table while they gooped up the scanning device and ran it over the affected area. The most surreal part about this for me was that I’d been in that same room, with the same instruments, while pregnant with both my children. The testing setup is such that the patient can see a screen just like the technician, so of course I watched her work. The strange part this time? I kept looking for the fuzz on the screen to resolve to a baby! Yeah. I’m a dork.
- Step 5. Biopsy – this is no fun, but they numbed me up and I didn’t have to watch while they took the skin samples and core biopsies. Usually an exploratory biopsy is one of three kinds — skin sample, fine needle aspiration, or core biopsy. The skin sample is just what it sounds like, as a small patch of skin is removed. The fine needle aspiration is usually used on a discrete lump or cyst. In fact, such aspirations often drain the cyst substantially! The third kind, what I had, is called a core biopsy. In a core biopsy, a needle the size of a pencil lead is inserted and a cylindrical core of flesh, muscle, fatty tissue, and (hopefully) tumor is pulled out. Typically the surgeon will need to take 3-5 cores if inflammatory breast cancer or another type of cancer needing multiple cores is suspected. In my case, we stopped counting at 7. If you have to have biopsies, it will be okay, but bring a friend or spouse with you and hold his hand. WhyDaddy made funny faces and talked to me the whole time, and it really helped. Under no circumstances should you act all brave and watch. Trust me on this.
Interlude: Diagnosis. Waiting. Inflammatory breast cancer is diagnosed definitively with the clinical exam + biopsy results. It rarely shows on the mammogram or ultrasound, but it’s important to have those in case there is a lump lurking underneath. Once my diagnosis of inflammatory breast cancer was confirmed (in an office visit with tears and scary prognoses), another round of tests was ordered.
- Step 6. CT scan – This is another easy test, once you get past the prep. When I walked into the radiology center for this one, I was greeted with paperwork and two supersize bottles of junk to drink. I don’t actually remember what it was, but it tastes like a mixture of milk and chalk. With a hint of mint. Regardless, it’s important to drink it right away as directed, because then there’s more waiting while it makes its way through the body. I did this, but then had a round of injections for the bone scan and had a little trouble. OKAY, I passed out. But that’s just me. I’ve never been good with needles. OKAY, I’m awful with needles. I have been ever since I was a kid and passed out during a film showing a tracheotomy in 4th grade health science. I used to be embarrassed about that. But now, I just think — what were they thinking, showing a film of a tracheotomy to fourth graders? I actually passed out twice on this visit. I TOLD the technician that I was going to pass out and I needed to lie down. I TOLD him that the floor would be fine. But did he listen? Noooooooo. And so I passed out in his chair and kinda lost track of the world for a while. But WhyDaddy was there, holding me still so I didn’t flail about, and talking to me to bring me out of it. He is so wonderful to me. He kept telling me where I was, gently and firmly, and it brought me out of it. Then the staff flew into action, looking for a place for me to lie down! As they cleared the CT room for me (oh, yeah, lying me down on the CT table is very relaxing), WhyDaddy and the tech walked me over there. Not really over it, I passed out again. WhyDaddy says I did it just to get back at the tech, as he was walking behind me and caught me first as I fell. Ah well. He left me pretty quick, and a lovely nurse named Desiree came in to help me. I think she might just be an angel. She talked to me about the cancer, about the tests, about my little boys, and she made me laugh. She brought me juice. She told me what to expect with the CT. And then, when we came back for results this week, she came out with encouaraging words and pressed a pink ribbon angel pin into my hand, saying, “My grandmother had breast cancer. But she was old. You will survive this. You will. I can tell.”
- Step 7. Bone scan – Oh, but first the rest of the CT scan. It’s easy. All you do is lie there. They take one set of images (in my case, neck to pelvis) and then push some kind of contrast into the IV while they take a second set of images. It’s about a 20 minute procedure. The bone scan, which I did on the same visit, was I think one of the more difficult tests for me. There’s nothing special to do, exactly, just lie there and wait, but since it’s a head-to-toe scan, there’s a lot of it. The instrumentation doesn’t look vaguely threatening like the CT donut or the MRI tube, but I found it … weird. When the scan started, the technician moved an innocent-looking plate over my face. That’s right. Over my face. Wasn’t expecting that. I guess I should have been, but I just didn’t know. That’s why I’m writing this down. If you need one, just know that that will happen. It will be lowered over your face, about a centimeter from your nose. And sit there. For what feels like an eternity. Then it moves slowy down the table, scanning the rest of the body until it gets to your trussed-up feet. The technician gave me strict instructions to hold my hands still (and turned in towards) my body, but just trussed up my feet with a rubber band. I felt like a chicken. I was glad when this was done.
- Step 8. Breast MRI – Have you ever had an MRI? There’s lots of information out there about what it feels like to be slid into a tube and imaged while the magnet bangs and clatters around you. The difference here is that you do it on your stomach. After inserting what was surely my fifth IV this week, I was instructed to “lie down here, with your breasts in the cups, and relax.” Um, yeah. Right. I’m to put my breasts in metal cups and relax? Freaky. Biggest tip here? Bring a rubber band for your hair if it’s going to fall into your face at all. I didn’t think about this, and it made me pretty miserable. Since this tech had NO people skills whatsoever, after she told me to lie down and she checked the IV, she just slid me right into the tube. With no warning. My hair was covering my face, my arms were pinned at my side, and there wasn’t much room to breathe at all, since I was facedown in a big tube! I didn’t like this at all. I had to ask her to come help me out. She did, moving my hair mostly out of the way and securing it with the headphones that she never did actually get over my ears. There was still a lot falling in front of my face, cutting my air supply and making me feel more claustrophobic than I already was. Not fun. The headphone thing was more than slightly amusing to me, though, as it took her several attempts to secure them over my ears. At one point, she said, frustrated, “Where ARE your ears?” What am I supposed to say to that? And if she doesn’t know where my ears are, why am I letting her shoot me up with contrast and run this complicated piece of equipment?
- Step 9. Echocardiogram – easy. Just lie on the table and let the technician move the sensor over your chest. The only slightly bit difficult part of this is, in his words, “Now this is going to hurt a bit as I push the sensor between your ribs to get a better image.” Ouch! But it’s momentary and not a big deal at all.
Interlude. Waiting while all these tests are read (the quick part) and the results transcribed by office staff (may be 5 days). The breast MRI, CT scan, and possibly bone scan are all read somewhat in conjunction with each other and the mammogram and ultrasound results, so be prepared to bring copies and leave them at the radiology center for the reading period. And then wait. Blog or something.
What comes next? The oncologist visit and her recommendation for a specific chemotherapy regimen. Chemotherapy literally means treatment with drugs. There are a number of drugs used to treat cancer these days, so there are choices for the oncologist to make based on the specific attributes of the breast cancer in question. For example, is the cancer encouraged by estrogen? Progesterone? HER-2? All of these factors and more will be used to tailor the chemotherapy and any other drugs used to treat the cancer over the next few months.
My tests are finally complete. I’m talking to family this morning and will post a very brief note here later today to update you guys as well. If anyone is still reading after this very lengthy post. Sorry about that. But if you’re facing testing like this, it just helps to know what to expect.