In spite of my best efforts to prevent Lymphedema, about 5 months after finishing radiation, my arm visibly swelled during a dance performance. I had already been seeing a physical therapist preventatively, but increased my visits and spent two weeks doing compression wrapping to attempt to reduce the swelling (which did help some, but isn't a cure). I now wear a compression sleeve all day, every day, and one at night as well.
Living Beyond Breast Cancer interviewed me about living with Lymphedema. As I'm still trying to emotionally come to grips with what this means for me, I'm grateful for the opportunity to share my story. Read more about my experience on their blog:
Yesterday, I turned 37, and today I received my final radiation marking the end of my active treatment for breast cancer. Compared to chemo and surgery, radiation was a breeze (just time consuming - every weekday for six weeks!) My skin irritation isn't nearly as bad as I anticipated, so I'll keep applying ointment and watching it peel for a few weeks as things continue to heal.
I've been declared "no evidence of disease" and my "active treatment" is over, but something I never realized before going through this myself is that my experience with cancer is still not over. I'll go for follow ups every 6 months for the next 2 years with each of my oncologists (medical, surgical, and radiation). I've started seeing a cardiologist because chemo seems to have slowed down my heart rate (nothing that any doctor seems too concerned about, but not normal for me, so something to monitor and hopefully regulate with medication). I may need physical therapy on and off to prevent lymphedema (swelling in my arm) because of the lymph nodes I had removed. In a week, I'll begin taking a hormone therapy pill, which can come with a variety of side effects. The goal is to continue taking it, or another version of hormone therapy, for 5-10 years to lower my risk of recurrence. After months of low exercise, it's going to take some time to get back to my "normal" self, and with the heart rate changes and some lingering shortness of breath, it could be a challenge.
I'm starting to understand why cancer survivors talk about "the new normal" after treatment. My body has been through a lot, and will continue to adjust and recover. I'm ready for this phase, and whatever challenges it brings, I'm grateful cancer cells aren't a part of it.
Lots to update, but the most important thing is that since my surgery last month, my status is now N.E.D. - no evidence of disease! This means that the surgeon removed all the cancerous cells that could be seen on imaging (the primary tumor, a tiny satellite tumor, and 2 cancerous lymph nodes). The term essentially means the same thing as complete remission or complete response. Doctors generally hesitate to use the word "cured" because they never know if microscopic cells are still present and the cancer may return, but to the best of their knowledge, I am currently cancer-free.
And yet, my treatment is not over. As I said in my last post, the surgeon removed a few lymph nodes during surgery, and then a few more. With two positive nodes, she wanted to ensure it would be all out and no lingering cancer cells would continue traveling through my lymph system to other areas of my body. She took out a total of 17 lymph nodes, which means I am at life-long risk of lymphedema (swelling in my left arm/side/breast) and need some physical therapy to loosen up the tightness in my arm and armpit (called cording or axillary web syndrome). Lymphedema isn't entirely preventable, but there are things I can do to keep the risk low, and if I do develop it, physical therapy can help lessen any swelling. For now, I'll visit physical therapy weekly until treatment is over and I have gained full mobility again.
I also went for my radiation planning session today, during which I had CT scans done, received 5 small tattoos to mark the radiation area, and learned breath hold techniques to protect my heart during radiation. The radiation oncologist will now map out my treatment and I'll go back on the 24th for a test run. Actual radiation will begin on the 25th for 30 sessions (every weekday for 6 weeks). Because I had a lumpectomy rather than mastectomy, radiation will zap any microscopic cancer or pre-cancer cells that might be lingering in the area unseen. The radiation will also cover the remaining lymph nodes in my armpit, near my collarbone, and in the center of the chest to again ensure there's nothing microscopic left.
By early August, my active treatment will be over. I'll begin taking hormone therapy pills to reduce the risk of recurrence and will visit my oncologist every 6 months for monitoring. There is a light at the end of the tunnel!
This part of my story is a big one, friends! On April 5, 2019 I received my LAST round of chemo and got to ring the bell in the cancer center. I thought ringing the bell was kind of cheesy and silly... until I did it. And all the nurses cheered. And I got a little choked up and teary eyed. This didn't mark the end of my treatment, but any means. Surgery and radiation would continue into July and hormone therapy for the next 5+ years. But finishing this big, scary milestone of treatment which had affected by entire body systematically feels pretty. darn. awesome.
Chris was able to take the day off and come with me, which I was VERY grateful for as it was the longest day of treatment thus far. It was the first time I had a big gap between seeing the oncologist and starting chemo, so we celebrated the milestone by walking to a local bagel shop for lunch. Thankfully, my veins were cooperative for the IV (8 rounds of chemo with no port!! A big deal!) However, I had a reaction to the Taxol chemo which slowed things down. Many people have allergic reactions to Taxol, and I had a minor one with the 2nd round exhibiting as back pain. Since then, each time they taper my dosage, starting very low and increasing the dosage after 5 minutes, then again, then again. Yesterday, the nurse misread my chart and gave me the full dose right off the back. After just a couple minutes, I had sudden chest tightness, shortness of breath, and overheating with flushing. It was terrifying! I thought I might be having a heart attack or something crazy.
They immediately stopped the infusion and rushed to check all my vitals. So many nurses all of a sudden! To be safe, they gave me a half hour to calm down, and then started the infusion again, tapering it slowly like they should have initially. Thankfully, the rest of the treatment was uneventful. But it extended my 3 hour infusion to 4 (after the 3 hours of waiting between my oncology appointment and the infusion.) Long. day. With a broken TV in my infusion room. So glad to be done with all that.
So what's next?
Over the next few weeks I would have another breast MRI to reassess the size of the remaining tumor (which physical exams suggest is substantially reduced) and to assess the lymph node involvement (I had one previously confirmed by biopsy and two additional abnormal spots on MRI). Aside from shrinking the tumor, the primary goal with chemo has been to get the cancer out of the lymph nodes so I need less nodes removed. There's no way to know for sure until surgery if any are still cancer positive, but the MRI may give a hint.
I also scheduled pre-surgery bloodwork, an EKG to check my heart health, and SAVI seed placement. The SAVI seed is a tiny radioactive marker to be placed with ultrasound guided injection about a week before surgery. This helps the surgeon locate the tumor and potentially involved lymph nodes using a wand outside the body so she can make the incisions in the best possible places and easily find remove the correct tissue. (Yay science! What an awesome invention.) The tumor and lymph node were also marked with metal clips during my biospies, for the surgeon to see once surgery begins.
My surgery was scheduled for Friday, May 10 with a lumpectomy and sentinel lymph node dissection. Once I'm asleep, they will make the incisions and then inject a blue dye and radioactive tracer into the tumor to follow the lymphatic pathways. Using these tracers, the surgeon will remove the first 3 lymph nodes connecting the breast tissue to the rest of my lymph nodes. By removing these, we cut off the pathway for any cancer to travel from that breast to the rest of my body. If the previously biopsied lymph node is not one of these 3, she will remove that also. They will be immediately sent to pathology while the surgeon continues with my lumpectomy, removing the tumor and surrounding tissue to ensure "clean margins" (i.e. no more cancer!) If pathology finds any remaining active cancer cells in the removed lymph nodes, the surgeon will proceed with an axillary node dissection, meaning she'll remove all the lymph nodes from my armpit, ensuring that there is no possibility of remaining cancer cells that could spread. I'm super grateful that pathology can do this assessment on the spot, as it makes it far less likely they would need to go back in for a second surgery to remove more tissue.
We're praying that I don't need more than a handful of lymph nodes removed, as taking them all increases my risk of swelling and/or numbness in that arm and for future injuries, even simple cuts, in that arm or hand to become infected. But whatever we need to do to get rid of the cancer, we'll do. If we are able to go for the more conservative surgery, I'll come home the same day. If I need the full axillary node dissection, I will have a drain installed and will need to stay at the hospital overnight.
About 4 weeks after surgery, I will begin radiation. This could last 3-6 weeks, and I won't know until after surgery. The more lymph nodes involved, the more radiation I will receive.
I'm about halfway through my active treatment, and ready to move onto this next phase. Especially since surgery is what will be curative. So even though treatment won't be over yet, I will technically be CANCER FREE! Soon!
Yesterday was a pretty good day. I received my 4th out of 8 chemo infusions, and it was the last round of AC before I switch to Taxol, which comes with less nausea related side effects. I also won't have to continue taking steroids on Taxol, which may be causing some digestive side effects as well. The chemo drug Adriamycin is commonly referred to by nurses and chemo patients as "the red devil" because of it's toxicity and severe side effects, so I'm glad to put it behind me. The nurse yesterday also told me a story about a patient from Mexico who, upon hearing we call it "the red devil," was appalled. In Mexico, they refer to Adriamycin as "Jesus' blood" because it's healing you. What a much more positive perspective! And it must be true, because my oncologist believes the treatment is working.
I saw Dr. Mintzer for the first time since beginning chemo (he's been out of town the past few weeks). After catching up on my experience and side effects, he gave an A+ as a chemo patient and encouraged me to continue using over-the-counter meds to anticipate the side effects I've been experiencing the past few rounds. He also did a physical exam and said the mass feels "substantially smaller"!!! Hormone receptor cancer tends not to respond as quickly to chemo compared to more aggressive tumors, so the fact that after 3 infusions he feels a difference is very encouraging. He also was unable to feel the swollen cancerous lymph node under my arm, which was previously easy to find. Obviously, I'm really encouraged by this, and it's just the news I need to keep going for the next 2 months.
Positive thoughts and prayers for energy this week would be appreciated. On top of my typical teaching schedule at the university, I am currently serving on a hiring committee and have a number of extra meetings coming up. I'm sure I could have stepped away from this commitment because of my treatment, but to have been invited to serve in this way as a first-year, full-time Lecturer... I was not about to pass up the opportunity. Cancer may be slowing me down some, but I refuse to let it interfere with every positive aspect of my life. So I'm pushing through. Thus far, I have found after receiving chemo on a Friday, I typically hit a low energy point around Wednesday, so I'm hoping I can take some extra naps to get me through the week. And since I'm still avoiding coffee (doesn't sit well in my system with the chemo)--lots of caffeinated tea!
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.