This is not how I like to start my conversations. I cringe when I hear the words in my head, even. I’m still struggling with this. Unfortunately, I had to tell this to those I love.
The days following my diagnosis, I wanted nothing else but to hurry up and call everyone, tell them about my cancer and get it over with. It’s not something I can keep a secret and I’d rather them hear it from me directly.
It’s bittersweet calling the people you love and throwing something like this out there. It’s joyous to have that connection again, but it’s so hard to interrupt that time and tell them about the awful news. We would catch up quickly on our families but then, I had to throw an emotional hand grenade at them. Every time I had to tell someone, I felt their heart breaking for me. It was so hard for me to do this. Normally, I try to cheer people up. Don’t get me wrong, I bitch about life just like anyone does, then, they have a turn and we try to cheer each other up by offering helpful advice or just laughing at ourselves. This is friendship and love. But, having to throw a big bomb like that was the opposite of what I would ever want to do. Everyone handles this part differently. Some people tell only immediate family and then those people tell more people from there. I’ve even heard of people saying nothing to their family members, even going through chemo, etc. without saying a word. I can’t imagine this. I can’t imagine trying to hold all of, well….everything in. All of your emotions and your physical side effects. I could never do this. I’m a pretty open book. I try to be open and honest with people, and I hope to get that in return. I see my friends and most of my family not as often as I would like. Between kids, distance, and just life in generally, this happens to the best of us. But, personally, if I was on the other end of the phone, I would be grateful to have received a call directly instead of hearing through the grapevine. Or worse yet, seeing it on Facebook. Ironically, I post on Facebook every once in a while. Not frequently at all. My children still look like infants on Facebook. (I might be exaggerating a tiny bit) and still appear still 25 pounds lighter. You get the idea. (A bit ironic since now I am blogging about my life on the internet for the world to see).
It would have been easier to tell people that I had ‘breast cancer’. I didn’t have to say Inflammatory Breast Cancer. But, I started my calls with my siblings, of course. They live in different parts of the country so had to call them to tell the news. They were the hardest to tell. I replay those conversations in my head and they break my heart. They had never heard of it. Then I called my two friend I have had since I was a toddler and the other since I was 8. Neither had heard of it. Then, friends I see more frequently. Never heard of it. It snowballed. I was determined to tell people about this deadly shitty rare breast cancer that no one had even heard of. We didn’t know skin changes on your breast could have anything to do with breast cancer. We didn’t know that an MRI was a better diagnostic tool tool and that mammograms can be useless for this kind of cancer. Those things alone are scary. Unfortunately, the more they learned, the more scary it is. By the time I was done, I was exhausted. I felt better though. I felt as if I had a tiny support system. Everyone offered help and prayers. Some people, whom I didn’t expect, have forward and have become closer to me. Other people I don’t talk to often enough send me flowers, or a gift card. Simple text messages come daily. They warm my heart. Just a simple hi… a simple check in. These little things make me feel stronger. And I need strength these days.
My Journey started when I glanced into the mirror before jumping into the shower. It was April 2, 2018. The lower portion of my left breast was white and raised and hurt like a rug burn at the slightest touch. My nipple wasn’t raising all the way, either. But, I have a history with rashes. I have something called dermatographism, which essentially means I get itchy hives from hard pressure and scratches. So, having a raised rash isn’t exactly new to me. What was new was that this rash hurt. It didn’t itch. I decided to take my shower, thinking maybe my bra rubbed it wrong or something. During my shower, I was surprised at how sensitive my skin was. I couldn’t use the loofa on my skin. It was too tender. It dawned on me that I had pain the night before in my breast. It was not unusual. I am prone to tender breasts right before my period and I had started this morning. It was more extreme though. I had even laid on my back and searched my breast for lumps it had hurt so much. Of course, this proved useless, as it always had. I have dense, fiberous breast tissue. I have lumps everywhere. I had even freaked myself out when I found a lump once, about 5 years prior. It turned out to be nothing, but they did inform me that mammograms wouldn’t be very effective due to the dense tissue, and that, in the future, I would very likely always get an ultrasound as well to see better. But, I had been 32 year old then and didn’t expect to need any mammograms anytime toon.
I called my mom after my shower. My skin was still raised and white. Nipple still flat. It seemed like maybe there was something more going on. I didn’t know what it could be. After talking to my mom, I called my obgyn office. My mom told me she thought it didn’t sound right and told me to call. I have no problem calling and getting things checked out. I don’t put things off if pain is involved. I have had chronic conditions my entire life. All of them involve pain. I’ve had back surgery and I have rheumatoid arthritis. I have enough pain. Now my breast? No thank you. It’s gonna get looked at and then I can get it fixed and the pain will go away.
I called and immediately asked to speak to the nurse. She told me that I needed to come in that day. I told her that I had to go to work. They spoke to the dr. and then informed me that she would stay after hours to see me. I was surprised by this. I guess they always worry at breast changes. Oh well, I was going and truthfully didn’t think much about it except that I was going to make the pain stop.
Straight after work I drove to the Dr. office, she looked at me and told me that I need to call every hospital or women’s health center in the area and see who can get me in the soonest to rule out Inflammatory Breast Cancer. I was shocked. I was shocked that she had used the word cancer. I hadn’t had any tests done and she just threw it out there. I took it steady as a drum, but I was shaken inside. She told me that the symptoms were consistent, and unless I develop a fever she doubted I had a breast infection. There is no ruling it out unless testing does. She told me a friend of hers had been treated for a breast infection by her obgyn and she had inflammatory breast cancer. By the time they were done treating her for an infection, it had metastasized and she didn’t make it. She didn’t want to make the same mistake that doctor had. Better to be safe than sorry.
Now that the word was thrown out there, I was now in a rush. In a rush to eliminate this ugly word as a possibility. It was difficult updating my mom about what the dr. had told me. My husband more so. That evening, my father sent me a link to an inflammatory breast cancer oncologist in Chicago, whom seemed to be a leading expert. I dismissed the suggestion with disgust. I’m not ready to think about that yet. How can he go there in his mind already?
I called to three local hospitals and breast centers. I told them specifically that I needed to get tested to check for inflammatory breast cancer. They moved me to the front of the line and I got in the next day to the same breast center that had done my mammogram 5 years prior.
My husband drove me to the mammogram appointment the next day. I was a nervous wreck. I sat down with the radiation tech and explained that I was there to rule out inflammatory breast cancer. She asked if my breast was red. I told her no. She looked confused and dismissive, like I was crazy. She then told me that it can’t be inflammatory breast cancer, because my breast is not red. In fact, the next day, my breast didn’t have as much white rash as it did, either. It had a small amount of peau de orange, which just means the skin was stretched and swollen so the pores were farther away and more noticeable, like the skin of an orange. But, the color itself was better. My nipple remained more flat. She told me that my breast would be red and wouldn’t get better if I had inflammatory breast cancer, so, it can’t be and your dr. shouldn’t have said it could be to you, that was just mean. I told her, well then it should be easy to rule out then. I hate it when people act like that. But, my fear was that they would do a mammogram, see nothing and not even do an ultrasound. I knew my breast tissues being dense were already an issue, and further reading at home led me to think maybe a mammogram wouldn’t be able to see this type of breast cancer at all. I just needed to talk to the radiologist and get her to do an ultrasound. This was my goal today. A conclusive answer with a better test. I felt like I was wasting my time with the mammogram anyways. The tech’s dismissive attitude did not help me feel like I was going to be thoroughly tested. I felt like I was holding my breath and I’d pass out before leaving this place without an ultrasound and talking to the radiologist. During my mammogram, the tech got quiet, then suddenly very sweet. She then excused herself to talk to the radiologist. She came back and said she needed more pictures. I guess I should have been alarmed, but I wasn’t. Instead, I felt that the mammogram wouldn’t show anything, but, that it was instead the radiologist being extra thorough. After taking more pictures, I sat, seemingly forever in a small waiting area/hallway. I was alone with my wicked thoughts and worries. I couldn’t say truthfully how much time had passed, but it felt way too long. Finally, I was asked to speak to the radiologist. She was young, around my age and sweet. She was concerned and wanted to do a biopsy already. She didn’t even do the ultrasound yet. She explained how she saw areas of skin thickening and micro-calcifications. I asked her if, because my skin was not red, would that eliminate the possibility of inflammatory breast cancer at least. She said no. I have atypical presentation from what I may see when I google pictures, but she is basing her information from what she is seeing inside my breast, not outside. Makes sense. But, not what I was hoping for. She then did the ultrasound and said there is suspicious lymph node sizes as well as a few areas that she’d like to biopsy. I then met with a nurse navigator. I had just done that part a few months prior with my mother in law. She called me one day and asked me if I could accompany her to an appointment the following day get breast biopsy results. It caught me off guard, but I of course agreed to go. The moment I stepped into that office I knew she had cancer. She had a folder sitting there with a ‘your guide to breast cancer’ across the front. Not too tactful if you ask me. It felt strange and unexpected to sit in a different nurse navigator’s office for ME. I didn’t even have a biopsy yet. And I felt like I was being told I had breast cancer. I rejected this feeling outright and just felt completely uncomfortable being there at all. I wanted to leave. ASAP. My husband was there with me and that saved me from acting on it. It’s funny how he was there for me to lean on, yet, I remained strong for him in that moment. (And many more moments to come).
My biopsy was scheduled for the following day. That evening, my husband convinced me to call his sister. One of his sisters is a clinical oncology pharmacist. I had previously decided to keep things quiet and not to tell anyone about things until we knew, so we didn’t put other people through worrying they didn’t need. He pointed out that we should call her only just to see if the local hospital would do things correctly or if there is something that we should insist that they do instead.
K (my sister in law) looked at my mammogram and ultrasound reports and spoke to an oncologist co-worker. She told me that I should have a skin punch biopsy as well as the other biopsies done. At least two skin biopsies she said. The oncologist co-worker suggested I go to an oncologist that works in Chicago, at northwestern. (About 30 miles from us) He said he is a leading expert in inflammatory breast cancer in the nation. He added that he went to school with him and that he would contact him and see if he would be willing to meet with me. He happened to be the same doctor my dad had emailed me about the first night after discovering the breast rash. Ironic. When we asked what she thought about the results from the reports we shared, she said “it’s looking like a duck and quacking like a duck. It’s probably a duck. But, I hope I am wrong”. That was the birth of the phrase ‘the duck’. After that, we would talk about how we hoped it was goose or a woodpecker, but not a duck. Duck was the new easier way of saying inflammatory breast cancer. We weren’t ready to use the c word. ‘Duck’ worked for us instead. More accurately, ‘fucking duck.’
We heard back from the oncologist that he would meet with us, and to schedule through his nurse and gave us her email. My sister in law did so for me. We waited for a response. In the meantime, I was advised that the doctor would likely not want me to have the biopsy done before seeing him. I was scheduled the next day to have my biopsy done. I needed to know if I should do my biopsy or not. And I was very reluctant in putting it off. I decided I would keep my appointment if I didn’t hear from him.
In the meantime, I called the local hospital and spoke to the radiologist. I explained I wanted to also get two skin biopsies as well. She agreed that she would like to do them, but that she couldn’t because of a hospital policy where radiologists aren’t allowed to. What?! They can take core biopsies which are much more invasive, but not a skin punch biopsy. I asked if anyone in the hospital could. She suggested I talk to a dermatologist outside of the hospital. I still do not understand why I couldn’t get skin punch biopsy done from that hospital.
That made me nervous to say the least. I understood now that biopsy is only as good as the person removing the biopsy and the person reading the biopsy. I had a potential to go to a leading university hospital with the nations foremost expert in this rare deadly breast cancer. My other option was a hospital that agrees a I need a test but is unable to perform this simple test. Sigh.
I already mentioned that I am my own health advocate. No one cares about my pain as much as I do myself. I learned that a long time ago. So, I did a silly thing. I threw a Hail Mary. At 6:45 pm, I searched the internet, found the expert oncologist’s email and I emailed him. I pleaded with him to take me as his patient and to also please tell me if I should get my biopsy done tomorrow locally. I hadn’t met him, he didn’t even know my name from earlier. I passed all the professional help I was being offered and I just directly approached him because I felt desperate I didn’t think he would get the email. I certainly didn’t think he would respond in time. I was wrong.
I heard back from him at 9:30 pm. He told me not to go to my biopsy. The following day, but instead, travel to see him instead. The next day! Holy shit. I was gitty. This big wig oncologist just responded to my online plea and now he can get me in TOMORROW to see him! I’m still floored by this. What a good man. The hubby and I zoomed there the following day. I had called the local radiologist before we left and I told her what was happening. I could hear the relief in her voice when I told her that I was going to see this doctor at Northwestern. She told me I would get the best care there and she was relieved.
When we got to Northwestern, we got right in to see the dr. He walked in and said “you email me and ask for my help and here I am, the next day!” He seemed as excited as me to meet. He was direct and kind. I learned that an MRI is the proper visual test for IBC, not a mammogram or ultrasound. He needed to get good pictures of my breast without biopsies holes. And guess what, that wonderful doctor then was able to schedule my MRI for the following day.
My MRI came back as skin thickening, overall breast edema (swelling), 6 small tumors, 3 auxiliary lymph nodes, and an internal mammary lymph node all highly suggestive of inflammatory breast cancer. So, that sucked. The radiologist was awesome enough to call me the same day at home. My results sucked of course, but the radiologist calling the same day was super great.
The next step was the biopsy. Unfortunately, I had to wait over a week for that. I thought I would go mad from waiting. Mind you, I thought I was going to get my biopsy over two weeks before. The biopsy sucked. It was painful. It was invasive and it was already to the point of panic attacks with anxiety I had never experienced. They took 6 core biopsies from three different areas. That is 18 pulls of tissue. They take a lot, but it is not all at once and it is nerve wracking. The used the MRI visual results as well as a fluoroscope to take out the tissue samples. Then at each one, they leave a marker. This is important because they use these markers to follow up and see exactly where the cancer is and they can use it to see if it is growing, shrinking, etc. the lymph node biopsies were actually the most uncomfortable for me. I felt light headed and just this sickening feeling of they shouldn’t be there. It is impossible to describe. It wasn’t comfortable though. It is, however necessary. The pain lasted a few days with some nice bruising.
I got a phone call the following day saying that I do indeed have inflammatory breast cancer. It’s a fucking duck.
Diagnosis: inflammatory breast cancer/ invasive ductal carcinoma.
I had a pet scan after that. Cancer in breast, and three auxiliary lymph nodes. This is awesome news. When getting diagnosed with IBC, about 1/3 already have a distant metastasis. That was my worst fear. It was a huge relief to find out it wasn’t stage 4.
Another relief is that the abnormal looking internal mammary lymph node is not cancerous. So, I am a a stage 3b. This is the best case scenario for IBC diagnosis. More good news comes the next day: the cancer is estrogen receptor (ER) positive and progesterone receptor (PR) positive. Most IBC is ER/PR-. What this means in English is that estrogen and progesterone feed the cancer. The good news is that I can remove these hormones and then it will stop being fed from them. (Downside is early menopause and possibly getting my ovaries removed) but, it is worth it. I will have a decrease likelihood of reoccurrence. As an IBC patient, this is needed, because the reoccurrence rate is unfortunately higher in IBC than it is in non-IBC locally advanced breast cancers. Truthfully, I’m not sure if I’m going to be able to fully relax about it until 5 years from now, when the reoccurrence rate chills out a bit.
So, there it is. My novel long tale of one month of anticipation, anxiety and finding out that I have a duck. Exactly one month from my breast appearing strange with shooting pains, I had my first chemo treatment. I notice my breast changes on April 2, 2018. My first chemo treatment at Northwestern was May 2. It was a long month.
Truthfully, because my breast never appeared red, and because the white raised skin lessened instead of getting worst, it would have been very easy for me to have missed this. I may have gone to my obgyn and she could have treated it as a breast infection. Then after taking antibiotics, because my breast outward appearance lessened, we may have thought that it was better. This could have gone another way, for sure. But, because my own obgyn had a friend pass from this awful cancer, she was aware of it. She took no chances. And because she said the words inflammatory breast cancer to me, I was able to get in quickly to the women’s diagnostic center, and even look up an IBC super awesome oncologist who met me the next day because I told him inflammatory breast cancer. That simple act saved my life. I don’t feel sick. I would have no idea I had cancer. It’s a scary thing and people took it seriously because it is. But, knowledge was the key. What you see on the internet isn’t always the picture you will see in the mirror. Any skin changes on your breast should be looked at right away. I had no idea. Spread awareness. It might save a life.
Now I have a long journey ahead of me. 6 months of chemo to start. I’m on a chemo called FEC-T. Then I will have a radical mastectomy, and radiation. It’s going to be a very long year. I will post blogs about each step.