IBC: A Diagnosis

I knew I had cancer before I really knew I had cancer. My symptoms showed up the evening of December 16th, but I wouldn't get the confirmation from a skin biopsy until January 11th. Every day I had the sinking feeling of "I have cancer I have cancer I have cancer" but no one believed me.

How does this happen? How did I go so long without being diagnosed?

Rare diseases get misdiagnosed, especially when you're young. "But it's so rare" "No one in your family has breast cancer" I was told this so much by so many doctors, I wanted to punch the word "rare" in the face!

RARE DOESN'T MEAN NEVER

I was examined by 5 doctors and NONE could believe I had cancer.

So what do I say to my friends who may think they have a symptom of something, anything. Listen to your instincts. Go with your gut. No one knows your body more than you do. Doctor's are amazing, but they don't know everything. If I would have listened to these doctors and family members and gone with the attitude of "it'll get better over time" I would be terminal- I wouldn't have a fighting chance.

Ok Lisa, so what's your story? I know so many are wondering how I knew I had breast cancer. And all my young mom friends are worried too.  If you've visited me over the past few months I would have sat down in my living room and told you this story in more detail. I have gone through this so many times in my head, trying to catch something new or to give me the benefit of the doubt that I did everything right and I have come to the conclusion that I have no regrets, except one. I'll get to that in a minute.

On a Wednesday night, as I was putting my kids to bed, I noticed an itching sensation in my bra. It wasn't until the kids were all in bed that I sat down to see what was going on. What I saw was a large bright red rash, under my skin. Now, at this time I was nursing Violet 100%. I didn't even have a bottle in our home. There was a lot going on at this time: Violet was teething and not nursing well, I was run-down taking care of my 5 year old, 2 year old, and 5 month old, the husband was working 10+ hours a day and we were right in the Christmas season where everything felt a bit stressful. When I saw this rash I immediately thought mastitis because everything added up. When I looked up the symptoms of what my rash looked like, yup...I either had inflammatory breast cancer or mastitis. Inflammatory breast cancer symptoms are similar to that of mastitis (a breast infection usually caused by breastfeeding). The reason that inflammatory breast cancer makes itself known as a rash is because the cancer blocks the lymph vessel system and within hours, a rash is formed. Obviously it was mastitis. But that's when my instincts started to kick in. I was in no pain and I had no fever...I didn't feel sick at all. They say mastitis feels like you've been hit by a train, all I had was a stupid rash.

I called my OBGYN the next day, but she was out the rest of the week and the following week for Christmas. I thought I'd give it another day to see if it would subside. It didn't. That Friday evening I went to the clinic by my house to get antibiotics to treat my "infection". My family was coming up on Sunday to spend the week together for Christmas at our house and I figured I'd better get this taken care of sooner than later.

I told them I was sure it was mastitis. The doctor examined me and said to come back in two days if the antibiotics didn't work **looking back, I think he had a feeling it wasn't mastitis either. The antibiotics didn't work. I went back again Sunday evening and saw a female doctor at the clinic. She was very thorough in examining me. She advised to put hydrocortisone cream on it and make sure I schedule to see my OBGYN in a week. I did. When I called my OBGYN's office the next day, the medical assistant asked if I wanted to see a doctor at a clinic in salt lake (if I was really worried about it) and I said no. The cream completely stopped the itching and redness so I thought it was getting better! Some weird skin rash **it wasn't.

The female doctor at the clinic called me a few days later to "check in" and see how I was doing. I let her leave a voicemail and didn't feel the need to call her back. **Looking back, I realize she must have had a gut instinct too, or rather a medical degree.

So now things get complicated. At this point it's been a week and just as my "rash" was looking better, other symptoms started to happen. Christmas day I was so exhausted. I couldn't get out of bed, just so tired. We made it to the movies that day to see Star Wars (Oh yeah!) and it was then that I noticed a pain on the side of my breast. Ugh. Since the rash appeared, Violet didn't take that side very well so I thought, oh no I'm getting a clogged milk duct! And that's exactly what happened. I got a clogged milk duct. **looking back-the clogged duct was caused by my growing cancer.

3 days after Christmas, Monday morning, I saw my OBGYN. I was so excited to see her. I trusted her, she knew me because just 5 months before all this she delivered Violet. She had given me an exam after Violet was born so I felt confident she'd have an answer for me.

She didn't. She even said "I don't know what this is, but it's not mastitis". Then she addressed my clogged milk duct. My lymph nodes were swollen because the milk was "congested" and all backed up. When she gave me a  breast exam she felt a large lump and said "this is too big to be cancer".When she said that I chuckled because I really thought the same thing. I thought my lumpy breast from breastfeeding and having a clogged milk duct. I had never felt a lump before. She had just given me an exam a few months before and there was no lump so I wasn't concerned it, but I was concerned about the rash! She said if I wanted to examine the lump further I could get an ultrasound today or wait a week and see if it would improve. She didn't tell me what to do, she gave me an option but at the same time didn't act with a sense of urgency.

This is my ONE regret. I didn't say it. I didn't say what I was thinking. My one regret was withholding what I was thinking: "I'm afraid this could be inflammatory breast cancer. I have all the symptoms. I know it's rare, but I don't know what else it could be. Let's figure this out together."

I didn't push that concern on her. She moved the appointment along and told me to call the lactation specialist if I needed guidance to treat my clogged milk duct. I didn't. I wasn't concerned about the stupid milk duct, I want to know what this skin of mine was doing. I know me, I know this isn't normal. People get weird rashes all the time, I don't.

I was disappointed. But I spent the next few days treating the clogged milk duct. I tried feeding violet the best I could on that side, I used a breast pump, and I used a heating pad to try and open a clogged duct. It was painful and annoying, but I did it. As I emptied the milk out, and really massaged it that's when I noticed that same lump. It wouldn't empty. It was pretty big, not painful. I thought that was the clogged duct. But after a few days and my symptoms were better, that lump was still there. Now I was concerned. At this point it was about 2 weeks since the rash appeared. I went from a healthy nursing mom to having  a cancerous rash and growing cancer tumor in two weeks.

This is when I really started to pray. I needed to know what was going on, what did I need to do? I didn't want this to "be" something, I just wanted to wake up and have it all go away. This is when I followed my gut, the spirit, answers to prayers, or a little conscious voice that told me to not let this go. Don't wait another day!

I contacted my OBGYN with my concerns and worries. She told me to go to the same-day Dermatology Clinic at the University of Utah hospital. I did.

It was a Monday afternoon, Matt came home from work early to be with the kids so I could drive downtown and take my time at the appointment. I felt peace the entire drive there. I knew then. I knew it was cancer. As I drove I felt a relief, like FINALLY I'll be able to know for sure.

I saw a resident dermatologist at first. He was very thorough, but again, couldn't come up with what it could be. So at this point my skin didn't look like a rash, but it had the "dimpling" effect. As he was racking his brain to come up with what options he had for a diagnosis or a treatment plan I knew he was trying not to say the word "cancer". I did though. Let's get it out there! I told him I was here because I'm worried it's inflammatory breast cancer. I felt like that triggered something like a snap of a finger and within minutes the attending dermatologist came in. She was wonderful. She said something like "maybe you started to get mastitis..." you know, thinking of what it could be besides the WORST CASE SCENARIO that I knew it was. I asked for a skin biopsy.

Let's do this!

So I got the skin biopsy done. It was sent to be tested by the pathologists. The doctor said it takes at the most 7 days for the pathology report to be complete. On day 3 I called the dermatologist to tell me any news or if there was any way to speed things along. I had to know! How does one wait to find out you have cancer. How!? I needed them to hurry, I wanted them to know I really knew it was cancer, but had to wait on them to tell me a yes or no. I guess the staining takes time. I tried to be patient. On Friday evening around 5pm I looked on my online medical chart and I saw that my pathology was sent from the dermapathy lab to be tested for estrogen/progesterone.

Google google google.

Hysterical is an understatement. I called Matt who was still at work and told him what was happening. At this point the clinic was closed for the ENTIRE WEEKEND. This was worst than a phone call telling me I had cancer. I had to sit on the fact that my cells were being tested for breast cancer hormones, but they didn't call me first to tell me what was going on...so was this standard testing? Was this what they always did? I didn't know, but I did know. Like I did in the beginning. I did know it was cancer, but now it was actually happening. It was actually going to be confirmed, I didn't know what to do or think.

I asked Matt for an annointed Priesthood blessing. Matt's given me many blessings of comfort before, but this was different. It was Saturday night and my brain and emotions were going back and forth. Is it cancer? No. How can it be. Me? But why not me? People get cancer, I really think it is. But it's not. It can't be! Statistically speaking, it could be something else before it's cancer. It can't be. But it probably is. Oh my gosh, what if it is cancer? I don't remember the words of Matt's blessing as much of the feeling it left me with.

Everything is going to be ok. It's going to be hard, but it's all going to be ok.

Peace. My emotions settled, I knew what was coming. I felt ready for it, I was prepared for bad news.

2 days later, I got the call from my poor dermatologist who delivered the bad news.

"Unfortunately we did find breast carcinoma in the tissue....." I feel so bad for him for delivering this news to me. I had just put the kids down for a nap and he called me. What a tender mercy that was. I was able to ask questions and we decided I wanted to go to the hospital to speak in person.

Having just heard the official news I had been dreading, I experienced something between shock and a rush of adrenaline. My heart and mind was moving forward really fast, but my body couldn't react. I sat on the floor in shock until Matt came home. After a few phone calls I was headed out the door, but not before kissing my sweet 2 year old Nicholas who was napping on the couch. Our whole world changed so fast and in his face the reality hit me. I kissed him and cried. In his innocent face all I could think was this sweet boy's mom has cancer. As a parent, a mom,  I am constantly teaching and protecting my children-which has always brought me joy. I hated that I was the one to bring suffering to our family. That feeling was so raw and awful, I think anyone who has cancer can say they feel guilty for bringing down everyone around them with this horrible news/disease. We live in a world where we can make our own choices everyday, and these choices can have a positive or negative consequence. Unfortunately for me, cancer was not a consequence of a choice and as any unexpected hardship in anyone's life, it's easy to feel "it's not fair". It isn't fair, actually because it's not part of the plan.

Cancer is never part of the plan.

There's not anyone to blame for me getting cancer. It just happened.

As I talked to doctors about my disease they all said the same thing:

"It's so good you pushed for that skin biopsy. Good thing you followed your gut."

Most women go months with this disease before being diagnosed. They wait it out to see if things improve or medicines work and by that time it's too late. Most doctors don't know how to diagnose inflammatory because it's so rare-they don't see it as often as other breast cancers. After I was diagnosed I spoke with my OBGYN and she said in over 10 years and seeing 100s of women, she's never seen inflammatory breast cancer and even my "rash" didn't look textbook.

Rare doesn't mean never.

I hope that these details in my diagnosis story will help someone in the future. I think most people my age don't have big health problems, and if you do than you may not know what to do in these situations. Sometimes it's hard to find a doctor or to make an appointment. It can feel inconvenient or that you're "wasting" everybody's time. I like to think that all doctors genuinely care and want to help their patients. They are there waiting for you! They are there to help you when you're ill. What if I would have waited another week or two to see the dermatologist? I had every excuse to wait, it would have been so easy to put it off. Like, I have 3 kids age 5 and under and I have no family that live close by to watch the kids. See what I mean? (I thank God everyday I have a husband who puts me first!)

It's so important to advocate for yourself. Ask questions. Be smart. If you have a doctor who seems like they're rushing the appointment, don't let them leave until you're done. I'm lucky to not have doctors like this, but I know some doctors make their patients feel that way. And this can lead to a misdiagnosis. You're paying them for their time so they shouldn't leave until you get the answers you need. 

Advice to my friends who haven't had kids yet, but are my age-find an OBGYN and get an exam. Paps-mere and breast exam. It's easy to find a doctor and schedule an appointment. It's covered by insurance because it's preventative. It's the responsible thing to do, you need to have some sort of baseline. Then if you ever have a new concern or worry then you can call your doctor to be seen. Your OB will know you and your body and you can work together to meet your concerns. My advice to my young mom friends- If you're in the stage of life where you're having children then you should already know you're body pretty well. The changes to your body (your breasts especially) when you have kids is something you should be aware of, whether you're breastfeeding or not. If you're not breastfeeding and notice changes to your breasts make sure you and your OBGYN are aware of it. Sometimes it can be hard to tell what is normal or what's not so that is something to talk about with your doctor. If you ARE breastfeeding, this is tricky. From my story you can tell that I wasn't aware of the lump until I was really trying to empty my breast. So if your little one doesn't take to a side well, make sure you empty it as often as possible.

I like this image of oranges representing 12 signs of breast cancer. EVERY woman needs to know this. If I saw this in the beginning I would have had a higher sense of urgency to be diagnosed. Hope this information is helpful!