My name is Shirley Von Raesfeld. I am a wife, mother of two girls, and a bonus mom of two girls.
Shortly after my 36th birthday I went for a quick jog on my lunch break. After walking in the office, I stood in the doorway of my supervisor wiping the sweat off my forehead and dabbing the sweat from my armpits. I’m sure a look of concern crossed my face for a second as I said, “There’s a weird bump in my armpit.” I went home and asked my husband if he felt it and called my mom to come over to see if she felt it. Both of them confirmed what I had felt, so I called my primary physician for an appointment.
Now I think it is important to give a little back story. I had breast implants for years (not any recalled or linked to breast cancer) prior to diagnosis that I was already having issues with and had been talking about getting them removed. I also was recovering from shingles for the 2nd time that year.
At my appointment with my primary, it was basically a wait and lets see if it’s a swollen lymph node due to the shingles and would go away on it’s own. So immediately after leaving that appointment I called my gynecologist and made an appointment. I have a long history of cancer on my mother’s side, including both my mother’s parents having breast cancer. “Wait and see” wasn’t something I was really wanting to do.
About a month passed and I finally got into see my gynecologist. Yup the lump I felt is still there. While doing my breast exam I told her I felt this bump on the outer side of my left breast. She felt it and then continued with the breast exam. She then spoke up and said “Shirley I feel a lump here at 3 o’clock to the nipple as well.” My heart sunk, but she told me not to worry. I reminded her that the spot in my left breast has been there for years. I’ve had multiple ultrasounds on it and was always told that it was the hard filler spot in the implant, but it was becoming increasingly more sore and even painful at time. She said “it’s probably nothing but given my family history lets be safe and not wait”. She wanted a mammogram and ultrasound STAT.
I had a few appointments coming up, dealing with insurance to get them authorized, and since it was starting Breast Cancer Awareness month, appointments were very hard to come by. My appointment was finally scheduled for October 17, 2019.
By this point only a handful of people knew, as I was still in the mindset of this is nothing. I went to the appointment by myself. Already having implants and doing the mammogram, they basically had to pull the implant completely out and away from my body to get good pictures. As I’m squashed in the machine and was talking to the tech, I hear what sounded like someone starting to cry. At that point I knew my life was about to become intense for a while. I leaned over my shoulder and asked if she was ok. She wiped away a few tears and said, “I could get in trouble for showing you this, but as a recent breast cancer survivor myself this doesn’t look good.”
Once she finished with me, she went and grabbed the ultrasound tech, who then whisked me across the hall to her room. She seemed to concentrate on the breast, so when she said she was done I made mention she had yet to check my armpit area where I had felt the lump and was my primary cause of concern. Again cause I’ve had that spot in the breast checked several times and always told it was the implant. So, she scanned the armpit area quickly and then said “Our radiologist that reads these is actually in the building today. I’ll go have him look at the images, and if it’s ok with you he sometimes likes to come in if an image isn’t done clearly or at a difficult angle.” Me laying there uncovered with my arm still above my head, thought “sure I don’t mind.”
A few minutes pass and in walks the ultrasound tech and the radiologist, with absolutely zero bedside manner he says, “YOU HAVE METASTATIC BREAST CANCER, AND WE NEED TO DO A BIOPSY TO DETERMINE WHAT KIND FOR TREATMENT! I can do the biopsy today, but it wouldn’t be ultrasound guided, and you will want that to make sure it’s done accurately. So, I will call your doctor and get everything scheduled for tomorrow if that’s ok.”
“WAIT, WHAT DID YOU JUST SAY? Cancer? Metastatic? But I’m not going to die right, it’s not that big and we caught it early?” He responds with “Mrs. Von Raesfeld, It has already spread to several lymph nodes which is what makes it metastatic, so I would suspect it might be elsewhere. You should go home and get your affairs in order and prepare yourself for tomorrow and the coming days... I’m going to go make the phone calls now.” The tech “You can put your top back on and come sit out here on the bench while your waiting.”
In my mind I’m still screaming “WHAT!!!”, and now you want to take this emotional wrecked woman that you just told to “get your affairs in order” and sit her on a bench out in the lobby for everyone to see while you go make phone calls. WHAT?
After a few minutes the mammogram tech comes up and holds my hand, tells me how sorry she is for me, and if I needed someone to talk she would be more than happy to help. Ultrasound tech just standing there staring at me, the Radiologist comes up with my appoint times for the 18th and then says “Have a nice day!”
I tried to keep my composure the best I could walking through the hospital until I reached my car. I called my husband in California and burst into tears screaming, “I have cancer. He (the doctor) said I have cancer!” My very level headed husband says give me a few minutes to go talk to the higher ups and I’ll be there by morning. Once leaving the hospital I stopped by the main office where my boss was and told him I’d be needing time off, and what was going on. On my 35 minute drive home I called my Mom and told her, and I called my Dad. I stopped by my parents’ house where my two daughters were, kept my composure the best I could and told them that the doctor thinks Momma has cancer. I didn’t want anything to change. Life would go on as normal no matter what.
The next morning we all got up, kids went to school, my parents drove me to the biopsy appointment. All I can say about this day was ouch. Worst part of the whole experience was this part. I’m allergic to adhesives, it’s all in my chart. That didn’t stop them. The blisters from the bandages alone were bad enough. The pain, discomfort, bruises all over the breast and armpit were completely miserable for weeks.
On October 22nd, I climbed in the shower to get ready for work when the phone rang. My husband answered the call and put it on speaker. I said “This is Shirley” from the shower and the doctor came back with “Shirley it is definitely cancer!” I told her that’s all I needed to know and that she could give my husband any further information. He walked out to start writing everything down, I completely fell apart in the shower.
The next few weeks were really a blur. Lots of waiting and jumping through hoops for insurance. Lots of appointments, lab work, and genetic testing. Rolling through emotions many at the same time, many behind closed doors. People telling me I’m so strong, but I just wanted to respond with, “you have zero idea what I am going though. I am so far from strong at this point.”
I saw an oncologist that laid out my cancer. I had Invasive Ductal Carcinoma, stage 3, grade 3, ER/PR+, Her2-. Chemo and radiation were a must. She covered surgical options but told me my breast surgeon would go over those in further detail.
I saw the breast surgeon, that again went over all surgical options. As already having implants, I knew I did not want to go down that road again. I told her I wanted to just be flat, just make me as flat as possible. It was easier, it was more convenient, it gave me my best chance at survival. I stressed this many of times. The Dr kept saying “But you’re 36, you will want breasts!”
On November 21, 2019, I underwent a bilateral mastectomy. All of my family and even some extended family were at my bedside. I reminded the doctor before we went back, “FLAT AS CAN BE!” Coming out of surgery I quickly realized that I was not flat. I had been flat denied. After a couple weeks I had my one and only follow up with the surgeon, where she walks in so excited and does a little drum roll on my chest and says “Look at that beautiful cleavage. I left it, so when you’re ready we will have it to work with when we put implants in.” I looked at my husband, both of us thinking did that seriously just happen. I left there feeling completely defeated.
December 16th I went in to get a port placed, first chemo started flowing on December 19th. I had 4 DDAC treatments, AKA The Red Devil and 4 DDTaxol treatments. Since my cancer was so aggressive my oncologist recommended treatments every other week instead of every three weeks. The chemo caused episodes of tachycardia, resulting in an ambulance ride to the hospital. Finished those monster hurdles by receiving my last chemo on March 28th, 2020. Right as the great covid shut down started in the US.
We waited a couple weeks, then straight on to radiation. On April 22nd, I received my 1st of 34 radiation treatments. The best way I can explain is it literally sucks the life out of you. I was so tired from the start. The first few weeks were uncomfortable but ok. Towards the end, I had a good burn and lots of blisters and pain.
Since my cancer was 93% hormone driven, I made the choice to have both my ovaries removed to also help in reducing my risk of recurrence. I am currently NED (No Evidence of Disease). I take an AI Inhibitor daily to also assist in reducing my risk of recurrence.
My name is Shirley Von Raesfeld and I am a Breast Cancer Survivor!