*I would like to preface this article by stating that the content below may not be suitable for all of my readers. There are some personal experiences described below that are directed towards helping women going through a possible breast cancer diagnosis, and who are experiencing changes in their body.
It was a summer evening in July of 2019, and it had been a long day. My husband was in the shower and I was lying in bed. Don’t ask me why, but I decided to do a breast self-exam. This is not something I typically do, maybe once a year, usually just after my doctor performs the exam, and mostly out of curiosity. That is when I felt the lump in my left breast. It was quite large and wasn’t there the last time I had checked. I was alarmed, but uncharacteristically, I decided not to panic. I already had a routine check-up with my primary care physician scheduled and I decided to wait and just bring it up then.
“In thee, O Lord, do I put my trust; let me never be ashamed: deliver me in thy righteousness. Bow down thine ear to me; deliver me speedily: be thou my strong rock, for an house of defence to save me. For thou art my rock and my fortress; therefore for thy name’s sake lead me, and guide me.” Psalm 31:1-3
When the day of the appointment came, I mentioned it to my doctor. She felt the lump as well, and sent me for my very first mammogram. I made the appointment for that same week. Upon arrival, I donned a cozy white robe, fixed myself a flavored cup of coffee from their fancy coffee machine (this was pre-covid when you could do such things), and proceeded with the routine screening procedure. To be honest, it was pretty uneventful. I went home and awaited the results which came in the mail about a week later. My mammogram had come back normal with the exception of the notation that I had “dense breasts”. This means that I had more fibrous tissue in my breasts then fat. I accepted the news somewhat skeptically, but graciously, and spent the rest of my summer getting my son ready for his first year at college. We moved him into his new apartment in late August. I will always be grateful for that time I was able to spend with my family in joyful ignorant bliss. God works in ways beyond our understanding and I believe it was His plan to delay my diagnosis so that we could spend that time focused on my son’s new journey rather than my own.
As my family settled into our new routines that fall, I began focusing more on myself. I had been grateful for the mammogram results that I had received, but I was also highly suspicious of them. Deep down I knew something was wrong. It was early October when I noticed another change. The edge of my nipple was starting to invert itself.
The medical system is a work in progress, just like anything else. Our doctors are only human and they are working with limited knowledge just as we all are. As they obtain more understanding, they will inevitably change the way that they diagnose, manage, and treat disease. Think about the advances that they have achieved in the past century. Let’s all pause for a moment to be thankful that we received our diagnosis now and not back when there were no options, no therapeutics to aid with the side effect of treatment, and yes, even no anesthesia.
I digress…
You know your body better then anyone. You need to be your own advocate.
Fast-forward to Columbus Day Monday, October 14th. With the day off of work, I took matters into my own hands. I called a breast specialist, explained my situation, and they asked to see me right away. The doctor was not available on such short notice so I met with her assistant. She reviewed my initial mammogram results and peeked her head into the exam room. She seemed confused and had a couple of quick questions, then disappeared again. When she came back, she performed a quick exam and then told me that she was “highly suspicious”. The technician that had read my original mammogram results had apparently missed something that was clearly concerning her. She asked me to make an appointment for another mammogram and gave me a number to call. On my ride home, the doctor called me instead. She had arrived back at her office, reviewed my chart and made the appointment for me for the following day…enter panic mode.
By October 24th I had my diagnosis, which means that within 10 days I had run the gamut. I had gone through the doctor’s initial suspicions, a round of more in depth diagnostic mammograms, a biopsy with placement of a “Savi Scout”, the waiting, the worrying, followed ultimately by the confirmation of the cancer, and all of the emotions and conversations that went along with it. I felt like my life had been hijacked.
“Have mercy upon me, O Lord, for I am in trouble: mine eye is consumed with grief, yea, my soul and my belly.” Psalm 31:9
In my last blog I had said that I am a work in progress. It took time and God’s grace to lead me to where I am today, and I still struggle, but the fear that I felt during this stage of my “cancer journey” was almost crippling. My husband felt it too. It was overwhelming and consuming. Our lives felt like they were being placed on hold and this now took front and center stage. A flood of emotions and thoughts that I had never had to face before were manifesting themselves within me. I want to remind you to be kind to yourself during this time. There may be way too many emotions and thoughts going through your head to even attempt to get them under control on your own at this point. I want you to keep praying. I want you to spend time with God. It will get better. It may not feel like it at the moment, but I promise, it will get easier.
This is going to make you stronger.
Below is a brief list of practical advice items based on my experiences throughout my initial diagnosis process. Each item is going to be short and sweet because you do not need to overthink these things. I am sure that you will each have your own story to tell some day, but I wanted to share these things with you because this is what I needed to hear when I was searching for answers. I am not going to spend a lot of time here and I am not going to flower this up, because I just want it out there. I want to be able to hit “publish” today because I want you to have this information with you. I don’t want you to be afraid anymore.
1.) Online Research a/k/a Dr. Google and Dr. YouTube Please, please, please don’t do too much online research. It is a waste of time. Being fearful of the unknown causes most of us to turn to “Dr. Google”. This can be detrimental. Most of the stories out there are online because they are outrageous. The women that have boring, mostly uneventful experiences don’t hasten to post about them. They just go about their lives. The medical websites give you a brief description of each process and speak so matter-of-factly that it leaves you worrying when things don’t go exactly as they describe. I can tell you this, what I found online only made me uncertain of what was going on with my own body because my experiences would rarely match up with what the internet told me that I should be experiencing. I was collecting unnecessary information that would only serve to stoke the flames of fear that were rising up in me. I was gathering unnecessary data in my brain and images that I could not un-see. I filled my head with worries and concerns that never even came to pass. The noise I allowed into my head space robbed me of what peace I might have had, had I only trusted in the Lord. Instead, my advice to you is to keep a notebook of questions. You are going to be seeing and speaking to your doctors frequently. Save your questions for them.
2.) Support from Family and Friends Please, please, please do tell your friends and family early and let them be there for you. Early on, one of the consultants that I met with had told me that until I received the results of the biopsy, I should not share anything with my family. She said that it was not time for that yet, and that until we knew something solid, it would only cause them to worry over nothing. That turned out to be one of the worst pieces of advice that I received. Protecting others left me feeling isolated. Keeping my thoughts to myself just allowed them to build up inside and fester. Don’t hold those things in. Your burden will become lighter when your loved ones are there to help you to carry it.
3.) The Mammogram The Mammogram should be the least of your concerns. Ignore the stories you hear about them being painful. When we hear the word “pain” our minds go to the worst places. All of mine were completely mild and I would describe them as slightly uncomfortable, but not painful. This was my experience: I arrived at the doctor’s office/breast center. They gave me a robe to change into. The nurse positioned me and placed my breast onto the plate. The machine compressed the breast and they took a few pictures/x-rays. It was over within minutes. Some machines are more sophisticated than others. You will most likely stand up and lean forward into the machine. I am sure that everyone’s experience is different, my mother reports that for her, it is more of an annoying pain, maybe a 3 out of 10 on the pain scale, but that is over so quickly it is certainly nothing to be afraid of. If you are already in pain because of an existing condition, tell the technician, and ask them to be gentle. Most women do not have any adverse reactions and therefore do not go about writing about their mundane experiences on the internet to the tune of “dear diary, there was a slight pressure from the mammogram machine, they pushed a button, and I got dressed and drove home.” it just doesn’t make for good reading. It is more likely that you will read about the excruciating pain that that one woman had when the mammogram machine clamped down so hard on her breast that it nearly fell off and how she felt that the mammogram was sure to have caused the cancer in the first place… IGNORE…MOVE ON… or better yet, just don’t go there at all. Do not waste any of your time or energy being worried about the mammogram. It is just an x-ray of your breast.
4.) Core Needle Biopsy/ Breast Marker Placement The biopsy wasn’t the most fun I’ve ever had in my life, but most of the hurdle with this one was in my mind. I must admit, I had let the fear get to me, but if you can tackle that first, you will be fine. Here is my personal experience to use as a general guideline. You will have your own story to tell after your procedure, but here is a general idea of what to expect. I arrived at my appointment, checked in, and was ushered into a room where I was asked to change into a robe. I was fully awake for this procedure. The doctor performing the biopsy sterilized the area and then administered a local anesthetic to numb the area. I felt a stinging sensation in my skin when they injected the anesthetic that lasted for (maybe) a count of 5 seconds. Then, assisted by an ultrasound machine, the technician performed a “core needle biopsy”. He located the suspected tumor with the ultrasound wand (this is completely painless). Once found, he made a small incision which I did not feel, because at this point I was numb. He then used a hand held device (a retractable hollow needle) that he guided through the incision. At this point I felt some pulling/pressure sensations. Once the device was properly positioned, he pushed a button, and I heard a “CLICK” as the device almost simultaneously protrudes and contracts, as it quickly extracts a small piece of tissue for them to test. They repeat the tissue sample collecting process until they are happy with what they have collected. They took approximately five samples from me.
After they collect the tissue samples from the biopsy, but during the same procedure, they will most likely place a very tiny piece of titanium (think smaller then a sesame seed), or a slightly larger radar device, to “mark” where the tissue samples were taken. For me, they opted to place a “Savi Scout”. The Savi Scout is a little radar device, about the size of a grain of rice. Your surgeon will use this marker during (potential) future surgery to locate the precise area that may need to be removed. The Savi Scout was placed using a similar device to the core needle that was used to take the tissue samples. I will not lie, the placement was slightly painful, but it was over in under a minute. Also, the pain that I experienced may have been due to the density of my breast tissue because most women report that they do not experience any pain during the biopsy procedure. Once the marker is placed, the doctor will close up the incision using a couple of steri-strips and a dressing to keep the area clean. The entire process from the time that I got up on the table to the time that I got down was probably about 20-30 minutes, and most of that was talking, prepping, and mapping out the breast with the ultrasound. You will get through it, you will be okay.
5.) Post-Biopsy I was a bit sore afterwards, mostly (I believe) from the Savi Scout placement. You may experience some swelling/discomfort, but it shouldn’t be anything that you can not manage. Dr. Google says that after a couple of days you should not be feeling these things anymore. Ignore Dr. Google. I experienced tenderness right up to the date of my surgery. It was just annoying enough to not let me forget about it, but not annoying enough to prevent me from going about my daily routine. Tylenol should cover it.
And then we waited.
This was a bit tougher then the procedures I had been through thus far, but with no other choice, we waited. I waited on my knees. I waited in the Scriptures. I waited in prayer. I kept working and I did my best to push it to the background, but it was always fighting its way to the forefront. Then the day came when I received the phone call. My surgeon called and gave me the news. It was Invasive Lobular Carcinoma. I did not Google it. I didn’t want to know what Dr. Google said my chances were. After all, my life is in the Lord’s hands.
“Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.” Psalm 27:14
My surgeon scheduled a meeting to discuss my diagnosis and treatment options. We sat together and she told me that I did not have a choice, I was going to lose the left breast. I told her to take them both. I couldn’t get the cancer out of me fast enough. I also had no interest in worrying about mammograms and biopsies on the right side for the rest of my life. For me, this was an easy decision. I made it very quickly and I never looked back. You will each make your own decisions with your doctors and each individual case will be different so don’t panic when you hear that they handled someone else’s diagnosis differently than yours. We planned for the surgery and my surgeon drew some bloodwork for genetic testing as well as Oncotype DX testing. She also made me appointments with my new Cancer Team, a network of doctors that she recommended.
The Team
-My Breast Surgeon, who had been coordinating all of the appointments and procedures up to the point of diagnosis. It was her job to remove the cancer.
-My Plastic Surgeon, who would work with my Breast Surgeon to place tissue expanders during the initial surgery to begin the reconstruction phase.
-My Medical Oncologist, who would be administering (definitely) Tamoxifen and (if needed), Chemotherapy, which is a full body therapy. The Medical Oncologists role is to look at the overall health of the body, not just a specific part.
-My Radiation Oncologist, who would be administering the radiation to the breast, a local therapy.
Once I had met with my team, I was ready for surgery, or so I thought. It turns out that God had other plans, but I will talk about that next time…
“Be of good courage, and he shall strengthen your heart, all ye that hope in the LORD.” Psalm 31:24
“Father God, I pray for the people reading this blog post, that you will strengthen them for their journey. That you would bring them through each phase of the diagnosis process without issues, without pain, and without fear. I pray Lord, that as many as you would, that they be given a clean/benign diagnosis, and that for those that you choose to allow to be touched with this illness, that you would be with us throughout our treatment process and that you would use it for good in our lives and others as well. I pray that your hand will be over all of your people and that you would strengthen those going through this trial and strengthen their families, that you would let them know that this is not the end, only the beginning, and that you will be there with them every step of the way Lord as you are with me. Praise be to you Lord and to your Son Jesus Christ. May we learn to magnify your Holy Name always and to expect miracles from you, because you are ABLE. -Amen“
