Saturday, March 10, 2018

I found a lump in my breast, and this is what happened next.


I want to start by letting you know that I am completely fine and breast cancer free.  I don't want to scare anyone and have you digging through this whole post to find out if the lump was malignant.

This is the second draft of this post; the first draft was super detailed and described this story in a very personal way.  When I had almost finished it, I had an issue with my browser and most of the post got deleted.  After an evening spent angrily trying to somehow recover it, I decided that maybe the text disappearing was a sign that I needed to approach this subject from a different angle.

And that I need to type my posts in Word and copy and paste them here. : )

Although it was kind of cathartic for me to rehash every emotion and detail of the story, it probably would have been a very long read.   And the main reason I wanted to share my experience had much more to do with passing along what I learned rather than actually telling you every single piece of what happened.  I went into the whole breast mass diagnostic process unsure and a little naïve, so if I can help someone else be more prepared for this very scary situation, then sharing what I found out along the way will be worth it.

So here is what I learned as a woman in her twenties who had her first experience with potentially cancerous lumps in her breast…

  •  Not all breast lumps feel hard like a rock or a seed as is often taught, and you don’t always need a careful breast exam to find them.  Before I found the mass(es) (there were two, but I could only feel one from the outside) I knew that breast self-examinations were important. I would maybe even go so far as to call myself a proponent for the practice.  But as a toddler’s mom, I find it a luxury to shave my legs, and I probably hadn’t done a real self-check in months, maybe even years, before I found my lump in December. Please don’t take this as me advocating that self-checks are a waste of time (because they aren’t, and I will definitely be doing them more often now), but I didn’t have to dig around for my lump.  When I learned about breast self-checks, I was told to feel for something pea-sized that would probably be gravely and hard.  But I felt my mass just by running my hand over my side in the shower (my pecs were sore from a workout sometime in the previous days and I was massaging them in the shower and happened to hit the lump as I brought my hands back down beside my body).  It didn’t feel like a piece of gravel as I expected but instead something that had a tiny bit of give – like a miniature tennis ball buried an inch or two under my skin.
  • Once you find a mass, it becomes all you can think about.  You can’t compartmentalize that kind of worry. From the moment I felt the lump, I became almost obsessed with it.  I couldn’t stop touching it – not because I enjoyed the sensation of having my stomach lurch in fear, but because I needed to make sure that it was still there.  There was something inside my body that didn’t feel like part of me - it felt evil and mysterious and from the moment I found it my brain needed answers that I didn't have.
  • Nobody in the healthcare field is going to treat you “special” because you’re worried you may have cancer.  And it’s impossible to get a clear read on how concerned medical professionals are or aren’t about your health until you have official results.  When it comes to cancer scares, I learned that there is a fine balance between how much doctors and nurses want to help you and assuage your fears, and how they must treat you like any other patient because they aren’t going to have answers right away and they can’t give you privileges they don’t give others.  It doesn’t really matter if you’re a young mother, if your husband depends on you because he works long hours, if your parents are across the country and worried about you, if it’s Christmas time, or if you have a vacation in two weeks you’ve been planning for a year.  Although it seems obvious from a third person perspective, when you’re the one who is worried you may be sick, it seems crazy that they can’t “speed things along” for you and give you definitive answers right away.  It was hard to keep in mind that I may not be my doctor’s only patient dealing with a serious health concern in the moment.
  • On that note, there is a lot of waiting involved.  And it will make you crazy if you let it.  The protocol for finding out if a mass in breast tissue is cancerous is as follows:  initial visit with your primary doctor, ultrasound/mammogram (this varies depending on age, which is something else I learned – breast tissue in younger women is typically too dense for a mammogram to reveal much), waiting for your radiology results, a breast biopsy if necessary, and then waiting for your lab results to come back with an official diagnosis.  The time elapsed from the day I found my lump to the day I found out I was cancer free was almost two months.  Granted Christmas and our family vacation were in the middle of that time, so that may have tacked on a week or two, but from what I’ve read online my waiting time was fairly normal.  For each of the three appointments, I had to wait for an opening with the doctor/imaging center.  And the results themselves took one to two weeks for both the ultrasound and the biopsy.
  • The ultrasound and the biopsy were much more “intense” experiences than I expected them to be.  I think the ultrasound was rough because I couldn’t help but feel the juxtaposition between ultrasound appointments during which Chris and I watched little Liesl roll around inside my belly and this one in which we were staring at two unmoving, threatening, possibly deadly masses.  I really hated those 10-15 minutes.  As for the biopsy, it was simply more of a “surgery” than I was expecting.  Even though they injected a lot of local numbing agent into the area, I still felt a good bit of pain, and I walked away with a glued incision.  I was basically expecting a very large syringe they would use to pull out tissue samples, but there was a lot more cutting, pulling, and pushing than just a simple needle being inserted. I went to that appointment by myself and, in hindsight, I wish we’d put Liesl in childcare so Chris could have come with me. 
  • From the very beginning, you are thrown into the “breast cancer world.” I don’t mean this to be insensitive at all toward women with breast cancer, but the imaging center where I had my ultrasound and biopsy performed definitely catered to women who were already fighting the disease.  Of course, this makes sense, as most of their patients are probably already diagnosed with cancer, and I wanted their comfort to be prioritized over mine.  However, as someone who was still in the stage of trying to determine if she was sick, the waiting room adorned with pink walls, breast cancer magazines, and pink ribbon themed artwork made me feel very squirmy, and I basically just stared at the floor to avoid the anxiety that came with taking in my surroundings. While waiting to be called back by the nurses, I felt like I already had to start thinking through logistics of caring for Liesl if I did need treatment and how our future was going to look if I was sick.
  • Once I found out that I was healthy, I was surprised to learn that, oftentimes, benign masses are not removed.  My (fairly large) fibroadenoma that I could feel from the outside is still very palpable.  I am still quite aware of its presence, along with the smaller one deep inside my tissue, near my chest wall.  It is very unlikely that they will develop into cancer, but I am supposed to pay attention to any changes, and I have to have a repeat ultrasound performed in a couple years.  I was expecting a much more cut and dry conclusion, but the way my doctor left it feels a little ambiguous.   It’s a new normal to which I have to adjust. 
  • Through this whole ordeal, I gained an acute awareness of my responsibility for my own health.  Firstly, I learned about being my own advocate.  I had to fight for my ultrasound to be done in a timely manner before we left for vacation (which meant hours on the phone and having my referral changed twice), and I had to be the liaison between my regular doctor’s office and the imaging center, muddling through insurance information and pestering nurses constantly when it was taking too long for my results to be sent over and passed along to me.  I’m usually the opposite of pushy, so this wasn’t easy for me, but at the end of the day, no matter how much doctors and nurses want to help me, they have protocols they have to follow and many other patients to juggle.  Nobody but me is going to ensure I am healthy and being taken care of in a timely and respectful manner.  I had already learned this lesson in regard to my daughter's healthcare, but obviously I have to apply those same rules to making sure I am well taken care of as well.  Furthermore, I now have so much more motivation for taking care of my body.  When I was worried I did have cancer, I regretted every bad health decision I had ever made.  These days, I’m limiting my soft drink intake, both diet and regular, trying to stay cognizant of how much refined sugar I’m ingesting, paying more attention to any unnecessary chemicals I’m bringing into our home, and taking fitting in my daily workouts much more seriously.  I want to be around for my family for a long, long time and be an example for Liesl when it comes to living a healthy lifestyle.  I know not all health issues are preventable, but I want to do everything I can to handle what is in my control when it comes to protecting myself and those I love.
  • Lastly, I got a new perspective on the cliché idea that "we must be kind to everyone because each person is fighting his or her own internal battle."  While I was waiting for answers, I had to be a mother, a wife, and a normal person – a person who went to the grocery store, fulfilled her volunteer responsibilities, took a vacation to Disney World, etc.  From the outside, I don’t think it was obvious I was facing any kind of struggle.  Undiagnosed health issues, miscarriages, infertility, anxiety, and so many other problems that people face are internal.  Many times, it makes sense not to be open about these things, but that also means that those who are suffering must put on a brave face and live their lives as usual.  So, I want to be kind.  I want to assume that everyone has an obstacle they are facing personally.  I want to love my neighbor’s broken places even if I don’t know what they are.

I hope that this was somewhat informative and that, if anyone reading this ever does have to go through a similar situation, you’ll be a little more aware and prepared than I was.

In conclusion, I want to send SO MUCH love and encouragement to those who have been diagnosed with cancer or other scary illnesses.  Just the mere dread that I MAY be sick made this one of the hardest times in my life.  Your strength and bravery inspire me.  I want to be thankful for my health and love my body in honor of you.  I long for the day when “cancer” doesn’t have to be as terrible a word as it is now.  But, in the meantime, know you have so many people cheering you on and praying for your wellbeing.

And, all you ladies out there, keep doing those self-checks!  The radiologist who ordered my biopsy said he was leaning toward my masses being benign but that he wanted to test them to be sure because they’d had two women around my age diagnosed with cancer at their imaging center in the last few weeks.  It is a real concern for women of all ages, and we’re responsible for being aware of what’s going on in our bodies!  The same doctor told Chris and me how important it is to be proactive and catch masses early when they’re still very treatable.  So let’s all mark our calendars or put a reminder in our phones to make time for taking care of ourselves so we can keep taking care of those we love.