Some good news in the midst of the terrible, terrifying journey that is cancer treatment... my genetic testing results came back normal. I think this is good news, anyway. I was tested for 8 gene mutations associated with breast cancer. The most well known genetic mutations for breast cancer are the BRCA1 and BRCA2 genes, but there are several others that I was tested for as well, many of which are associated with other types of cancer as well including ovarian, lymphoma, melanoma, and uterine.
All results came back normal which means I do NOT have a proven genetic mutation and there is no reason to think I'm at higher risk of breast cancer recurrence or another instance of breast cancer in the future. I can move forward with plans for a lumpectomy after my chemo treatments and do not need to worry about more aggressive surgery or treatment at this time.
Of course, there's always the chance I do have a genetic mutation that the scientific community hasn't identified yet. Statistically, only 1 in 227 women in their 30's are diagnosed with breast cancer, so my situation is pretty rare. And the genetic counselor said that there must be other factors that have led to my developing cancer at such a young age.
There's just no way of knowing what those may be.
So this is why I say I think this is good news. Good because if I had tested positive for one of the BRCA genes, I would have probably gone with a double mastectomy. If I had tested positive for one of the genes associated with ovarian or uterine cancer, I might have also have considered an oophorectomy or hysterectomy. A positive genetic result of any kind would have mean higher risk of recurrence, which means more testing down the line and near constant anxiety over when my cancer might return or spread. Still, it would have been an answer.
Negative genetic results feels like, well, a big fat question mark. You got cancer? Huh? In your 30's? How did that happen?
The doctors tell me sometimes it just happens. There's no way of knowing how long it's been growing inside me or what factors contributed to my cancer. But my friend Dr. Google tells me things, risk factors, some of which I've had control over. Oral contraceptives, which I've taken for nearly 15 years to regulate my cycle. Never being pregnant, having a baby, or breastfeeding, and being over 30. Drinking alcohol. Being overweight.
Without a confirmed genetic mutation for breast cancer, I can't help but feel at least partially responsible. Could I have done things differently? Would it have mattered?
It's not really worth dwelling on this now. There's no way to know what caused my cancer, or if I could have done anything about it. All I can do is look forward, attack this cancer with everything I've got, and take responsibility for my long, healthy, hopeful future.
Once I settled on Penn Medicine for my treatment... it was time for more testing. Throughout November, I had a whole body bone scan, CT scan of the chest, pelvis, and abdomen, and a breast MRI. For someone who has never had a serious illness or injury, this was a lot. Not to mention that I continued to teach a full load of college courses, edit a literary magazine, and co-direct a dance company at the same time.
The bone scan process was actually pretty cool. Even though I've always been a creative person leaning toward writing and the arts, some aspects of science have always fascinated me. Maybe it's because my older sister studied biology. I have vivid memories from childhood when a crow was leaving its prey in our bird bath to soak and my sister took the opportunity to point out to me the specific body parts of the poor, dead bird: the stomach, the intestines, the heart. Having never personally experienced so much as an x-ray, seeing a live scan of my entire skeleton on the screen beside me was, admittedly, awesome.
The bone scan began with a nuclear injection. A nurse took me to a room with a radioactive warning, asked me a series of check in questions, and gave me a quick, painless shot. Then, I waited. For four hours. Rather than driving home, my husband came with me and we sat in the lounge down the hall watching episodes of Grey's Anatomy on my iPad. Once the radioactive material had adequate time to spread, I went in for the scan. I laid on my back on the table and the tech lowered a large, flat, square panel with the camera over my head. The sensors kept the camera an appropriate distance from my body as it passed very slowly from my head to my feet. This process took about an hour.
Sounds boring, I know, but once the camera passed my face I was able to turn my head and watch on the monitor as the machine scanned my body, outlining every bone.
The next week, I went in for my CT scans--not my favorite test. Sitting in the waiting room, I had to drink two large containers of mochaccino to prepare for the scan. No amount of mocha flavoring can hide the thick, chalky consistency of the pre-scan beverage.
The actual scan was easy enough. They started an IV for contrast, and I laid on my back again while a donut shaped camera passed over me, scanning my chest, abdomen, and pelvis.
And the next day, one final test--a breast MRI. My least favorite. The MRI machines are located in the basement of a brick building, down the freight elevator and through the concrete hallways. After check-in and changing into my ever-so-stylish hospital gown, a nurse led me to a room that could accommodate a variety of patients and put me in the blood draw chair to start my IV.
Have I mentioned that I've hated needles all my life? When I was five, apparently I ran down the hallway from the pediatrician because I didn't want a shot. So suddenly needing IVs left and right seemed less than ideal. And this IV? Hurt. The nurse inserted the IV in the crook of my elbow (why, why would anyone choose the crook of your elbow?) and even though she told me I could move my arm freely, it hurt least to keep it out straight.
In the MRI room, she pulled over a step stool for me to climb up onto the machine. For a breast MRI, you lay on your belly so that your breasts hang down freely for imaging. As you can imagine, this is not terribly comfortable.
I stepped up and knelt on the padded platform, then lowered myself into position with my breasts dangling through the two holes. A plastic divider dug into my breastbone. My face rested in a horseshoe shaped cushion like at a massage parlor, but there was no masseuse coming. My arms were raised over my head, Superman-style, at which point the nurse hooked my IV up to contrast dye, tugging and pulling in the process. More hurting.
With giant headphones over my ears, they moved me into the machine and the MRI began. If you've never had an MRI, go to YouTube and search for MRI sounds. They're obnoxious and loud and anxiety inducing. The headphones played music, and they even let me select the Pandora station, but the machine drowned out the calming Sarah McLachlan music I selected. I tried to just keep breathing, but you also have to lie very still for an MRI, and this meant breathing through my belly, not my chest, in order to keep my breasts as still as possible. After awhile, I realized I was holding tension everywhere.
Before I could spiral into panic, the sounds paused and the tech spoke in my headphones:
Ok, Katherine, we're going to insert the contrast dye now. You're almost done.
As the dye went in, I actually felt the cold sensation in my arm, then my neck, and moving slowly down my body. They say sometimes you feel like you peed yourself. It's true. Only cold.
45 minutes later, I'd made it. The testing was over. Another milestone completed.
The best part? All tests showed no signs of metastatic disease, meaning the cancer is localized and has not spread beyond my breast and underarm lymph nodes. With this confirmed, it's full speed ahead to chemo, surgery, and radiation.
Breast cancer survivor.