By Courtney Proctor
July 2012 – July 2013: A Year of Misdiagnosis
I was 28 years old and otherwise healthy with no history of breast cancer on either side of my family when I found the lump in my left breast and I told myself it was probably just a cyst. However, I was on the heels of an immensely challenging 11-year period of seemingly random health issues -- including multiple emergency surgeries, a spot of skin cancer, and 3 lost pregnancies -- so I had trust issues with my body to say the least. I made an appointment with my OBGYN to have the lump checked and held my breath, really hoping for a respite from health issues.
My doctor did a physical exam at the appointment and with assured confidence told me it was just a cyst (spoiler alert: it was cancer). To say I was relieved is an understatement. I practically skipped out of her office, feeling comforted that I wasn’t facing yet another life changing health crisis.
A few months later I started to feel more tired than usual, which I largely wrote off by telling myself it was just because there was a lot going on at work. Then one day, about 6 months after I first found the lump, I was in a fitness class and I noticed that my left armpit was a little sore. It kind of felt like razor burn or sun burn, and it ached a little. The sensation continued but initially it was inconsistent – it would be there for a couple days then my armpit would feel normal for a week or more. I had an annual exam with my OBGYN coming up in a few weeks so I tried not to feel too uneasy about it, telling myself I’d have her check it out at the appointment. Looking back, I think how naïve I was not to have known it was a huge warning sign given the lump in my left breast. But I didn’t know much about breast cancer or lymph nodes and I didn’t think a lump in my breast would be associated with armpit pain….and I certainly did not think I had cancer!
At my annual exam, my doctor rechecked the lump in my breast and noticed it had grown. I was crazy impressed that she could tell just from feeling it that it had grown, because it wasn’t noticeably larger in size to my untrained, layperson fingers. She seemed unconcerned about the growth, hypothesizing that it was a type of cyst that may grow and shrink with pregnancy. A cyst that does party tricks…doesn’t sound too menacing. When I told her about my newfound armpit soreness, she felt my armpit and said she didn’t feel anything amiss, but I could tell she was slightly concerned and she suggested I visit a breast specialist just in case.
By the time I was able to get in to see the breast specialist a couple months later, the soreness in my armpit was more prevalent and consistent. It felt swollen and irritated quite often and a palpable lump had formed in my armpit. It seemed like the specialist had looked at my chart and already concluded the lump was a cyst before he even saw me. He barged into the exam room I was waiting in, and without asking me anything he felt the lump in my breast and exclaimed that it was indeed a cyst. This type of cyst, he said, will continue to grow and grow until you remove it. So, he recommended that I have it removed but he didn’t want to dampen my summer plans with a pesky cyst removal (summer is a big deal to Michiganders 😊) and he suggested I schedule the surgery for the fall. Super cool, another surgery. Can’t wait.
He was about to get up and leave, washing his hands of me until fall, but before he did I told him about the pain and lump in my armpit. He felt my armpit and then he said one of the most utterly unbelievable things anyone has ever said to me. It was confusing and seemed suspect at the time, and now that I know what I know about breast cancer, it’s nearly impossible to believe the conversation went down like this…but down it went.
This breast specialist told me the lump in my armpit was a lymph node and the only reason I could feel it is because I had less fat on my body relative to others. The explanation didn’t make sense to me because the amount of fat on my body hadn’t changed much in years and my armpit had never felt this way before, so I didn’t understand why my lymph node chose to make itself known now. I must have had a confused expression on my face because he went on to say that if I had more fat on my body the fat would cover the lymph nodes and I wouldn’t be able to feel them. Pretty sure the look of bewilderment remained because he continued, saying that if I felt around in my right armpit, I’d probably feel a lump there too. With that, he stood up, turned around and walked out of the room.
As I sat in the exam room, with a sinking feeling in my gut and lingering confusion, I reluctantly probed my right armpit hoping I would indeed feel a lymph node. The search returned nothing. No lymph nodes to be felt. It was getting harder to convince myself that everything was ok, but a breast specialist who sees women with breast cancer daily had told me my I was fine, that this breast lump was not threatening and could wait. So I should be feeling good, right?
A couple months later I was taking a shower and felt multiple lumps in my breast. I was shocked that seemingly overnight so many lumps had formed that I couldn’t tell where one ended and another began. I got an appointment with an RN at my OBGYN office for that same day. I was scared, but the emotion that was even more present in my consciousness was frustration and annoyance that I was once again heading to a doctor office.
The RN felt the lumps and she said it’s probably a type of cyst that grows in clusters, like grapes. But she ordered an ultrasound to be sure. That ultrasound is what finally lead to a correct diagnosis. The ultrasound results were concerning (obviously!!!), so I went for a mammogram which again came back as concerning and lead to a biopsy.
5 days after the biopsy, and 364 days after first seeing my OBGYN about the lump, I got the call confirming I had breast cancer. I was 29 years old. When I heard the words “I’m sorry, it’s cancer…”, my world stopped and everything I had been trying so hard to control came crashing down.
Stage 3 invasive ductal carcinoma, ER+/PR+/HER2+, BRCA negative, cancer found in 9 lymph nodes
Treatment Plan and SO Many Decisions
I was able to see an oncologist the day after I got the diagnosis, and everything moved quickly from there.
My oncologist recommended a mastectomy, 6 rounds of chemotherapy, Herceptin and Zoladex, and 25 radiation treatments after chemo. She said that as long as my body responded to the chemo, I had a very high chance of survival. There was a part of me that felt grateful to hear the prognosis, but an even larger part that was so immensely terrified about what was to come it felt too risky to feel hopeful.
The fear and uncertainty were overwhelming, and the decisions I had to make were dizzying. Would I have a lateral or bilateral mastectomy? Since the cancer was hormone receptor positive would I have my ovaries removed or get a pill shot into my stomach every month to put me into menopause? Would I do the recommended 6 rounds of chemo with all the possible long term side effects? Then there was the decision about radiation and working during chemo or taking a medical leave. And reconstruction decisions after getting through treatment.
I felt like I was drowning under the weight of all these impossible choices with impossible to predict outcomes. I wanted answers. I wanted certainty. I wanted to know how I would get through it all. I wanted to know how it would end.
Of course, I couldn't know so I tried to take it one decision at a time and make the most informed decision I could. I ultimately had a left mastectomy initially, completed the recommended chemo and radiation, did the monthly shot of Zoladex for a year then had a right mastectomy and my ovaries and fallopian tubes removed at the time of my breast reconstruction surgery.
Choosing to Change
From the moment I got the call telling me I had cancer, there was one thing I knew without a doubt. Given the way my life had been going - survival meant change. If I wanted something other than the dis-ease, illness and loss I had been experiencing I needed to change. Instead of continuing to run myself into the ground trying to change my external circumstances I had to change from the inside.
Thankfully, I was able to take medical leave from my job during chemo so I could finally heed the battle cry of change my body had been shouting. Trying to figure out how to change my life felt overwhelming and I didn't know where to start, so naturally I did the only thing I knew how to do really well - research and data gathering. I read books, listened to seminars and trainings on mindfulness, meditation, Ayurveda and other holistic healing modalities, and what I learned blew my mind wide open. I had always been intrigued by the wisdom and practices of eastern traditions, but I hadn’t put anything I’d previously learned into practice consistently.
That wasn’t an option for me anymore…I had to find a way to lessen the stress and pressure I had put on myself. So I started meditating regularly and using the procedures and side effects of treatment as a laboratory for my newfound mindfulness practices -- and to my giant surprise, it worked! Pain was more tolerable when I paid attention to it and stopped resisting it- seriously who would have thought?!? Tough emotions I had habitually buried for fear of being swallowed in their intensity were cathartic and actually shifted into acceptance or peace when I could be present enough to ride the whole wave of the emotion as it ebbed and flowed.
I learned how to be aware of my thoughts and focus my attention and having that awareness allowed me to see the stories I was telling myself that caused unnecessary fear and anxiety and gave me a choice to let the story go without getting wrapped up in it. Of course, I still had many moments of anxiety, despair and poor me -- after all I was bald from chemo, a uni-boob (as I lovingly referred to myself for the year between my mastectomy and reconstruction) and recently thrust into medically induced menopause while battling cancer! I mean, I was bound to have some super crappy moments. But I was present with my emotions and held myself and my experience with compassion and acceptance as best I could even during those dark times.
As I continued to practice being present, I realized that I no longer desperately searched for the "other side" of cancer, my mind wasn’t constantly wandering to the what-if's and the how-will-life-be's. Instead, I had many moments of acceptance, surrender, peace, and gratitude every single day. It felt amazing, but also very unfamiliar.
Contemplating this unfamiliar sense of stillness one day, I silently wondered what am I feeling and I heard a voice in my head respond with "Home….you've come home." When I let go of the death grip I had on all the qualifiers of how life needed to be in order for me to be happy and ok, I found my center, my true self, and it felt like coming home. I felt a belonging and recognition -- like ahhh, there you are, I've been searching for you but I didn't know it was you I was searching for!
That sense of being home, being in my center, is the gift I received by allowing cancer to wake me up to my life, and I continue to carry it with me 7 years later. Yes, I still get knocked off course. Yes, I have REALLY hard days and I'm as far from perfect as the next spirit in a human suit. But I catch myself quickly (most of the time) if I get knocked off center and more importantly I know how to get back home. I can definitively say that I don't want cancer again, and I can just as definitively profess that I am grateful for the experience because I learned so much about life and about myself. I have far more tolerance for uncertainty and change, resilience for days, trust in myself and the flow of life, and an inner knowing that I am supported and exactly where I need to be.
You are loved, you are supported, and you matter. Much love to you.
Courtney Proctor is a Certified Spiritual Life Coach who helps women clarify what they truly want, reconnect with who they really are and step into their fullest potential. She is also a HeartMath® Certified Mentor and offers individual and group classes for building resilience. You can learn more about her services at atmancollective.com or send an email to firstname.lastname@example.org.