Some good news in the midst of the junk... my genetic testing results came back normal! 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.
I'm grateful for this "good" news for now, since a BRCA gene mutation would have pushed me to consider a mastectomy or double mastectomy to reduce my risk of recurrence. For now, I can focus on moving forward with my treatment plan and adjusting my lifestyle to reduce my risk in other ways, such as dietary changes and eliminating chemicals from my life by way of cosmetics and cleaning supplies.
In early December, I met my medical oncologist, Dr. Mintzer, for the first time. Prior to my own experience, I had no idea a cancer patient would have multiple oncologists for various aspects of treatment. Dr. Mintzer prescribed my chemo and will help me manage my survivorship, including hormone therapy since my particular cancer is hormone sensitive.
The appointment began with bloodwork, drawn by one of the nurses, Taylor. Again, I see a nurses' job goes beyond medicine. I immediately felt like I was with an old friend. Taylor has short hair, lots of tattoos, and struck up conversation about movies, music, her wife, my dogs, all in just a few minutes in the blood draw room. After she took my vitals and led me to the exam room where I would meet the doctor, she got serious for just a minute. I wish I remembered exactly what she said, but whatever the words, they gave me permission to cry. She assured me that in a year, I'd look back on the experience and it would feel like a distant memory. She handed me a box of tissues as she saw my eyes fill and said, "it's alright." It's alright to cry. It's alright to be scared. It's alright--you're here, and we've got you.
Dr. Mintzer was warm but direct. My husband felt comfortable knowing that he's older and more experienced than my surgeon, and knowing that they work as a team on my case. He recommended I begin Dose Dense Chemotherapy ACT - 4 rounds of the chemo drug mixture referred to as AC (Doxorubicin and Cyclophosphamide) and 4 rounds of the drug referred to as T (Paclitaxel). My infusions will be 2 weeks apart for a total of 16 weeks of chemo. This will hopefully shrink the tumor and turn the positive lymph node to negative, allowing the surgeon to remove less lymph nodes. Chemo will be followed by surgery, radiation, and ongoing hormone therapy.
To be quite honest, I wanted to avoid it all. I had a performance approaching with my dance company, final exams to grade, and always go home to Chicago to celebrate the holidays with family. He wanted me to get started as soon as possible, but agreed waiting until after Christmas would be acceptable.
Spending time with family and friends over Christmas was bittersweet. On the one hand, I was grateful for the chance to see the people I love most in the world, and for them to be able to see me. To see that I'm still me, that I'm ok, that I will be ok. But for days I felt a little sick to my stomach with dread over the approaching chemo.
Would it hurt? Would I throw up? Would it work?
December 28th, my first chemo infusion. Before the infusion, I saw Taylor for a blood draw and then Dr. Mintzer. Each time, this would be the process so they can check my red and white blood cell counts and make sure my body has recovered enough for the next infusion. Chris was able to accompany me for this first appointment, so together we went upstairs to the infusion center. They took my vitals again and showed us around--mostly to the kitchen where we could find snacks and drinks, and the bathrooms I could use versus the ones he could use. (Because the chemotherapy gets into a person's waste, they recommend avoiding using the same bathroom for a few days.) I settled into a comfortable recliner chair with a flip up desk top and a small TV attached. Chris sat nearby. I'd packed a bag full of stuff--a neck pillow, cozy blanket, snacks, hard candies, coloring books, magazines. If I was going to go sit through hours of chemo, I was determined to be prepared.
Turns out, most of my anxiety over the actual infusion was unnecessary. Aside from a little stinging in my arm as the nurse pushed the Doxorubicin drug in, it wasn't bad at all. Doxorubicin, also called Adriamycin, is known in the cancer community as "the red devil." It really is bright red, like Kool Aid. The nurse, Melissa, put in my IV and started me on a half hour of pre-meds, mostly anti-nausea related. Then she brought in the two syringes of bright red liquid. Because the drug is so strong, it can't be administered via drip. Melissa connected the syringe to my IV and slowly pushed it in, monitoring me for any reactions. I also chewed on ice chips for the few minutes it took her to administer the drug. The infusion creates a strange metallic taste in your mouth, but also, the ice protects the cells in your mouth from the chemo and can help to prevent mouth sores.
It did burn in my arm, just a little, at first. Being my first time, I had no idea if this was normal, and so I gritted my teeth and said everything was fine. After a few minutes, she connected the second syringe, and when she began the push, I felt a sharp sting in my hand, through my wrist, and up my arm. It only lasted a second, but it made me jump. It seems after the first syringe, a small blood clot must have formed near the IV entry point, and the second push moved it up my arm. I didn't realize that burning sensation at the beginning was a reaction in my veins to the drug. The red devil is so powerful that a person can only have a limited amount in their lifetime. In other words, if I ever need chemotherapy again in the future, this particular drug will be off the table.
Did I mention that when I went to the bathroom after this infusion, my urine was also bright red? So weird.
After my bathroom break, they gave me about 15 minutes of saline drip to flush out my veins before the next drug. Cyclophosphamide, or Cytoxan, was easier - just a drip into my IV. No need for ice chips. Chris sat with me the whole time while I watched Rachael Ray and The Price is Right. I sipped on ginger ale and ate a granola bar. After a few hours total, we headed home and Chris picked up soup from Panera for us both.
The soup was the real mistake of the day. I was pretty hungry, having been up for 4-5 hours and eating just peanut butter toast and a smoothie before chemo. I got a bowl of Autumn Squash soup, ate it, and we both crashed on the couch. A few hours later, I woke up from my nap feeling nauseous. I sat on the bathroom floor for a half hour, and though I never threw up, I don't think I'll be eating Autumn Squash soup again for a long, long time. Sticking to bland foods on chemo days from now on.
Side effects can occur over the next few days, but I have anti-nausea meds and plenty of free time to rest.
1 down, 7 to go!
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.
After avoiding reality for several days, I finally made some phone calls. I pulled out a brand new journal to use for cancer notes (when you're a writer, lots of people gift you journals. Also, something about being organized helps me feel like I'm in control). I wrote down my basic diagnosis information, and then scheduled appointments with surgeons at three hospitals. In hindsight, this was probably excessive, but since I live in New Jersey, I wanted to consider a hospital closer to home than Penn, where my diagnostic testing was done. And the top hospital in NJ I was interested in wasn't able to give me an appointment for about three weeks, and not at my preferred location. So I tried a third.
My first appointment was at Penn Medicine with Dr. Alina Mateo. I should have just stopped after that. Everything about the appointment was as good as one could hope for. Surgical Oncology at the Pennsylvania Hospital location is on the top floor of a glass high-rise, and the view from the waiting room was the best I've seen in Philadelphia. The decor was warm, modern, and simple. If it's possible to feel comfortable while waiting to meet with a cancer surgeon, this is the place.
Dr. Mateo met us in the exam room, my husband and I. She was young, probably close to my age, and kind. We talked for a few minutes and she gave me a quick physical exam before inviting me to get dressed and meet her in her office. I can't express how much I appreciated that. Sitting in an office with my husband, across a desk from a surgeon, having a conversation like a person rather than in a gown in a sterile exam room like a patient.
As she explained my diagnosis and her recommended treatment, she drew on a diagram and wrote out some simple notes for us. She walked us through lumpectomy vs. mastectomy, axillary lymph node dissection vs. sentinel lymph node dissection, and neoadjuvant chemo vs. adjuvant chemo. She recommended an oncologist to discuss chemo, listed the additional tests she would order if we decided to move forward with treatment at Penn, and answered our questions.
The most important thing she did for me was make me feel like I had a choice. She was clear about her recommendations, but deciding between breast conservation surgery (lumpectomy, which she suggested) and a mastectomy was up to me. Having chemo first (her recommendation) or later or at all was up to me. Sticking with Penn or going elsewhere was up to me. She explained why she recommended the course of treatment she did, but presented the options. Cancer is such a big, scary, out of control, unexpected thing. Any element of choice, I was grateful for.
My husband accompanied me to meet a second surgeon, at a hospital in New Jersey. We thought it would be closer to home, but it actually took about the same amount of time to get there. Walking in, the building felt like a hospital, you know? I kind of hate hospitals. That warm, comfortable, welcoming feeling with the great view of the city was nowhere to be found.
But you can't pick a surgeon based on the building alone, so I tried my best to keep an open mind. We had researched this surgeon online and were impressed by her experience and expertise. She seemed to be one of the top breast cancer surgeons in the area. It was clear my husband was leaning in this direction--in state, slightly older, more experienced surgeon. She met us in the exam room, my husband in a chair and me on the exam table in a hospital gown. I wish I could explain why I felt so tongue tied by her presence, but I can't. It was like a lump in my throat prevented me from asking questions, from expressing myself freely.
Her recommended treatment plan was roughly the same as the one Dr. Mateo outlined, though had that appointment been first, I would have been confused and overwhelmed without the diagrams and simple explanations. The biggest difference, the deal-breaker for me, was that while this surgeon mentioned the options of lumpectomy vs. mastectomy, it was clear breast conservation was not her priority. She said that many women choose mastectomy so they don't have to worry about recurrence. She mentioned DIEP flap reconstruction, where the plastic surgeon grafts fat from another part of your body and uses it to reconstruct the breast. And I will never forget the way she said this:
DIEP flap construction is very popular, so you get a nice little tummy tuck as a bonus.
A bonus? More invasive surgery that involves removing my breast, slicing into my abdominal muscles, with multiple surgical drains and extended recovery time, and you want to sell it to me as a tummy tuck?
When we got to the parking lot, my husband expressed he thought she was great and I broke down crying. No way I was ever going back in that building or to that doctor again. No way.
I ended up cancelling my third appointment and staying with Penn Medicine. I felt comfortable with Dr. Mateo, I had been treated with care throughout my diagnosis, and the additional testing they recommended was extensive, which made me feel like they were doing their due diligence to ensure they didn't miss anything. I'm sure either of the other surgeons I researched would have done a fine job. But when you're spending as much time with a doctor as cancer treatment requires, with years of follow-up appointments, there are factors other than their resume worth considering, and the care I received from everyone at Penn, not just medical care, but care, was unmatched.
The time that passes between a biopsy and diagnosis might as well be years. That's how it felt.
In reality? Everything happened about 1 week apart:
Week 1 - felt a lump
Week 2- saw my PCP
Week 3 - first mammogram and ultrasound
Week 4 - biopsy
Week 5 -
The day after my biopsy, I told only one person aside from my husband--my intern. I was holding a packet meeting for the literary magazine I run, and I needed my intern to help move the tables and chairs around since I was told not to lift things. Also, my skin was not happy with the steri strips they used on the biopsy site and the blisters were killing me. That same weekend I went to a bachelorette party for a friend who was a recent breast cancer survivor. Of all the people in the world, she would be the one to most understand the anxiety I was feeling while waiting for the results. But it was her bachelorette party, and I didn't want her to worry, so I slapped some extra bandages over the irritated skin and tried not to look too awkward holding my arm away from my armpit to prevent the rubbing.
I was at work when I got the phone call. Another normal day teaching college writing and trying not to think about the fact that I might have cancer. I was sitting in my office when the call came in, but since I share the office with another instructor, as soon as I answered and heard who it was, I stepped across the hall into the empty conference room to take it.
Hi Katherine, this is Dr. Englander from Penn Medicine. Is this a good time to talk?
Your test results came in and it is IDC breast cancer.
The exact conversation is a blur, but I remember confusing IDC with DCIS, which is a pre-cancer stage 0. I breathed a huge sigh of relief and said, "IDC, so it's pre-cancer, right?"
No, unfortunately it IS cancer. Invasive Ductal Carcinoma...
My heart was pounding and I tried not to cry knowing anyone could walk in or by the conference room at any moment--colleagues or a student of mine. I think I asked a few questions, he said the full details would be sent to me through my online portal, and that I should make an appointment with a breast surgeon. I asked who he would recommend, either at Penn or another nearby hospital I was considering, and I used a red dry erase marker to scrawl the names on the whiteboard next to me since I had nothing else to write on. As soon as I hung up, I took a photo of the info on the board, erased it, and went back to my desk to pretend nothing happened.
I was diagnosed on 10/24/18 with Invasive Ductal Carcinoma in the left breast. At clinical staging, the mass was between 2.5 and 3cm, grade 2, with ER+/PR+ HER2- hormone receptors, and 1 confirmed positive lymph node.
I held it together until I got home, including talking to my husband briefly on the phone that afternoon. I didn't want to tell him over the phone. Maybe I didn't want to believe it yet.
When I got home and walked in the door, he knew right away. He asked if I'd heard from the doctor yet and as I nodded, the tears came. And then the year-long journey began.
After finding a lump and getting a mammogram and ultrasound, I was referred for a core biopsy of both the lump in my left breast and a nearby lymph node that appeared abnormal on the ultrasound. To say I went into the appointment terrified would be an understatement.
I checked into the breast center, changed into my hospital gown, and was taken to a small private waiting area outside the exam room. Since a biopsy is technically a surgical procedure, I had what felt like an abundance of paperwork to sign. A tech sat and talked me through the documents and then asked that question I'd been trying to suppress the whole day:
How are you feeling?
Nervous. Scared. Terrified. How many other ways to put it?
My eyes filled with tears as I struggled to respond. I think I said "nervous." I took a few deep breaths and tried to stay calm. Still, it felt nice to admit to someone that I felt anything. My whole life people have seen me as emotionally strong, and I'd been trying to keep a positive attitude and avoid panic, so that little moment of release was probably necessary for me.
I wish I remembered the name of the nurse who assisted with my biopsies because I'd love to thank her. The procedure room was dim and I laid on a bed. She brought pillows to help me get comfortable since I'd be laying sort of on my side, sort of on my back for awhile. She draped a sheet over me to keep me warm and covered until the procedure. But the real gratitude lies in the fact that she talked to me. Non-stop. Instead of waiting in silence for the resident and the radiologist to come in for the biopsies, she just talked. Asked me questions, talked about herself, I don't even remember what and it didn't even matter. It helped me feel comfortable and kept me calm during what would have otherwise felt like an eternity of waiting.
Finally, the doctors came in and explained the procedure. The radiologist was laid-back and was clearly there out of formality--he let the resident, Dr. Kim, take the lead. She used the ultrasound wand to locate the areas of concern and gave me a numbing injection. The sting of the needle was truly the worst part. Then I couldn't feel a thing. She made two tiny incisions and used a core biopsy wand to take samples from the possible tumor and lymph node. The device sounded like a staple gun as she took the samples, but thankfully, no pain. I did feel the strange sensation of blood running from the biopsy site down my back--truly an out of body feeling when your breast and armpit are otherwise numb. I wondered--how much blood is back there? I would have guessed a puddle, but in the end, it was only a few drips. Perception is a tricky thing.
She only needed to take one sample from each site, much to my relief. "Dr. Kim, you are my new best friend." Even though it wasn't that bad, I was grateful to just be done with it. The nurse sent me home with an ice pack in my bra and instructions to rest and take Tylenol. The hard part is over, I thought. Or so I thought
At the end of September 2018, I felt a lump in my left breast and my world was turned upside down. I tried to ignore it for about a week - (1) to see if it would go away on its own, as the internet suggested it might, but (2) because I was uninsured and waiting for my new health coverage to kick in from my new full-time job. Throughout my adult life, I have been without insurance more than with, and this is the first time I was able to get coverage through my own, full-time employment (as opposed to through a spouse's insurance or through the ACA healthcare marketplace).
When the lump still felt like a brussel sprout under my skin in early October, I called my Primary Care Physician, who is also my gynecologist. She referred me for a mammogram but assured me that often in young women, these things are just a cyst, and not to get too concerned about it just yet. I called from my car to schedule the mammogram, and spent the next week trying to convince myself that it was, in fact, just a cyst even though deep in my gut I already knew.
At age 36, I had never had a mammogram before. I changed into the hospital gown and waited with the other women in the small waiting room, pink pens and brochures and other decor scattered throughout the breast center. When it was my turn, a tech brought me into the room and situated my breasts, one at a time, into the machine. She viewed the images on her screen, and readjusted me a few times to try to get clear pictures of the area where my lump was palpable, near my left armpit. She gave no indication of what she was seeing on the screen.
I returned to the waiting room to await the results. While most of the time, mammogram results come days or weeks later, this particular breast center has doctors reviewing the images electronically on the spot. Just a few minutes later, a woman pulled me into a separate waiting room, private, and asked some questions: Had I ever had a mammogram before? Why did I come in for one now? Did I have a family history of breast cancer?
After the fact, I realize that this was the moment I should have known I had cancer. It was clear on my mammogram that something was terribly wrong. But I was still in denial. No. No family history.
She led me to an exam room for an ultrasound. I laid on my side, lump facing up, and a resident globbed on the ultrasound gel and took several images with the ultrasound wand. After a few minutes, a radiologist came in to review the images and to take another look. She was not encouraging.
The radiologist ordered a core biopsy of the lump and a nearby lymph node that appeared abnormal on the ultrasound as well. Without saying "you have cancer" she was telling me "you have cancer." She asked if I had anyone with me. She encouraged me to schedule the biopsy at the front desk before leaving. She handed me a business card for a breast surgeon and said I should make an appointment now, don't wait for the biopsy results, and that whatever this was, I should have it removed.
Breast cancer survivor.