“But you’re too young to have breast cancer”! I can’t tell you the countless times I’ve heard that phrase. At chemo my standard response to these women who were older than my mother and some older than my grandmother was “we’re all too young to have breast cancer”. On the other hand, my standard response out in the world of the healthy was “yeah, crazy isn’t it”. But what is too young for breast cancer, or any cancer for that matter? I’ve read articles of teenage girls dying of inflammatory breast cancer. We’ve all heard the sad stories of childhood cancers. Yet countless women remain in the dark regarding breast cancer issues despite all of the pink ribbon campaigns. We all feel we’re exempt from the ferociousness of it, until we meet someone or are afflicted ourselves.

I was a typical breast cancer ostrich (had my head in the sand). Sure I ran in the Susan G. Komen Race for the Cure a few times, would click on internet links for funding mammograms when they came my way, I even mailed in a few of those Yoplaitâ yogurt pink lids. I rarely performed breast exams; my breasts were so lumpy from cysts that I figured what was the point, besides I’m young and I breast fed my babies. I had distant relatives who were breast cancer survivors, but no real connection with the disease. Other than breast lumps, I had no idea what were the signs and symptoms of breast cancer, nor did it ever occur to me that there were others I should know.

The idea of having to get a mammogram in the future was terrifying; at the age of 30 I feared my upcoming 35th birthday and the dreaded year of the baseline mammogram. The idea of ever having to loose a breast was incomprehensible; I didn’t know how women could so bravely go through the procedure. This coming from someone who hated her breasts and wanted a breast reduction.

So at the age of 31 with a 3-month-old nursling and a 2 year old who refused to wean; I was exhausted, never got any sleep, never got a moment for myself, and was worried about finances. I developed three golf ball sized lumps at the base of my right breast. Sometimes these lumps were painful, at others I forgot they were there. I never worried about it; they were most likely plugged milk ducts, besides cancer doesn’t hurt, right….WRONG. I tried for a while to follow all the techniques to clear plugged milk ducts; quite honestly I didn’t have the time to really give it a solid effort. I finally decided I needed some help and contacted some of my La Leche League leader friends for multiple opinions on the subject. I received lots of great info, tried it all, nothing worked. After a few months I decided it was time to go to the doctor and discuss if I needed to take the next step, which is surgery.

My OBGYN at the time examined me and said they looked like permanently plugged milk ducts but sent me for an ultrasound to confirm. The ultrasound confirmed her diagnosis. She said if I wanted I could follow-up with a surgeon to have the milk-ducts drained, but most likely they would refill with fluid (she indicated if it was her she would let nature run its course); most likely they would self-resolve when I was done breastfeeding. She wanted to follow-up in a month, but I was moving out of state so she told me to contact a doctor where I was moving if I continued to have problems.

So about a month later I got out of the shower and noticed my breast was really red, I shrugged it off as the hot water; especially since I was using the shower as a warm compress. I continued to notice this day after day and decided to actually look at my breasts, what do you know one was about twice the size of the other. The first thing that popped into my head was mastitis (breast infection). Only I’ve had mastitis before, it came with 104°F fever and I could barely move my whole body hurt so bad. In this case I felt fine with the exception of the “baby blues” and fatigue; and occasional breast pain which I was very good at ignoring.

I called and left a message with the nurses at the OBGYN office that had my records from the previous time I lived in the area even though my previous OB was no longer with the practice; and never had my message returned. So I called the OB who saw me before I moved, I wanted to ask specific questions so I explained the situation to the nurse. She spoke with the doctor and called in a prescription for me with the instruction that if it didn’t start to resolve within 2 days to go to Urgent Care. So in two days I tried calling the local OBGYN whose nurse said they were way too busy to get me in and to go see my primary care physician; I said I didn’t have one and should I go to Urgent Care; she said no, call the prescribing physician and have her write me a refill. Quite obviously, I didn’t relay the whole story to the nurse, and I’m still kicking myself for this. I was tired and frustrated, so I tried a few more times to get into the OBGYN but pretty much just ignored the whole thing for about another month until a friend pointed out that it could be a staph infection and the antibiotics couldn’t get to it; she said that I would need fine needle aspiration. So I called the local OBGYN and told the nurse this, she said the OB couldn’t perform that procedure and gave me the name and number of a breast surgeon but said they couldn’t give me a referral. Thankfully my insurance didn’t require a referral and the surgeon saw me within a week. During this whole process, no one ever mentioned that there is something called inflammatory breast cancer, which is not detectable in mammograms, ultrasounds, or x-ray; I never had a reason to suspect cancer. No one had mentioned that most physicians have never seen inflammatory breast cancer, they’ve just read about it when they cover cancers in school and it goes misdiagnosed quite often.

My surgeon recognized the potential for inflammatory breast cancer immediately, but didn’t share that potential with me at this point (I had all the text book symptoms with the exception of oozing nipples). She examined my breast and identified what looked like a potential abscess, ruled that out with ultrasound. Extracted fluid from my breast and ruled out infection. Treated with antibiotics with a one-week follow-up, which is standard protocol for inflammatory breast cancer. At my follow-up she told me the fluid didn’t have any puss like she anticipated and I wasn’t responding to antibiotics, she was very certain that I had inflammatory breast cancer and wanted me at the hospital the next day for a biopsy. As they walked me down to the counseling room to call my family, let me cry (which I didn’t do there) and explain the procedure; I overheard one of the nurses arguing with the hospital surgery staff that my doctor didn’t care if surgery was already booked full for the next day, make room to get me in. My doctor used general anesthesia rather than a local so that she could run a frozen sample down to pathology, which came back positive; I woke up with my chemo port already installed. I spent the next several weeks meeting with the oncologist and surgeon, getting lots of diagnostic testing and anxiously awaiting those results along with the biopsy pathology.

While we were waiting for the results, the floods of phone calls, cards, and gift baskets was amazing. I couldn’t believe how many people loved and supported me. Many of these people were on the Internet researching inflammatory breast cancer hoping for something to set their minds at ease; all it did was make things worse. I didn’t go near the Internet; at that point all I knew was I had cancer; that was all I could process at that point. It had already been explained to us that this was at least a stage IIIb cancer; but that was most likely a stage IV. The different treatments for the different scenarios were reviewed. Also the fact that the younger you are typically means the more aggressive the cancer; however, chemo works better on aggressive cancers and being young and strong I was better equipped for the fight. We discussed nutrition and complementary treatments as well. I did speak with a few cancer survivors to find out what to expect with chemotherapy, surgery, and radiation. Eventually I started researching inflammatory breast cancer on the Internet and learned quite a bit about breast cancer and met several women who were breastfeeding when diagnosed with breast cancer; I wasn’t alone in the world, this gave me the most hope. Many of my friends have since become very active in spreading the word about breast cancer, IBC, and afflictions to young women. It hit a little too close to home and they weren’t going to let it happen again.

When all the diagnostic results were back and most of the pathology (we were still waiting on HER2/neu status) we met with the oncologist again. The primary tumor was 17 cm, with multiple tumors in my breasts and lymph nodes (my breast looked like a red soccer ball with dimpled skin). The cancer had metastasized to my liver and several places on my skeletal; but there wasn’t time to confirm this with biopsy; I needed to start chemo immediately but we had to wait for the HER2/neu. My doctor said this was worth fighting and there was a clinical trial she was excited about me participating in if I wasn’t HER2/neu positive (I was ER/PR negative); although the trial nurse didn’t think I’d be a good candidate. My husband and I went home and cried together for the first time and discussed what was to be done if I didn’t survive.

After a few persuading and threatening phone calls from my oncologist to the lab my biopsy sample was moved up in the queue. Praise the lord; my oncologist was on the phone screaming Halleluiah; the lab just called and I had LOTS of HER2/neu amplification (she was suppose to be leaving for her vacation and was waiting to get me set-up for chemo before she left). Those beautiful little proteins were bouncing around on my tumor and having a party. Before the days of Herceptin, this was a death sentence; now it was the best possible scenario. My doctor predicted long-term remission. So we did the happy dance with the oncologist and then ran downstairs to do the same with the surgeon. We then called and e-mailed family and friends to let them know the good news. Talk about the ultimate roller coaster ride, that was a Friday and I started chemo on Monday.

I had a complete clinical response to chemo; which was followed by a right modified mastectomy and radiation. I continue to take Herceptin and Zometa and will continue to do so as long as my body tolerates them and they are effective. I have been a cancer survivor for almost a year now (since diagnosis) and have been no evidence of disease (NED/IV) for six months. I get evaluated by my oncologist every 3 months and he uses CT/PET/MRI scans as appropriate; I also receive MUGAs to evaluate any heart damage. I receive annual mammograms; the first of which was after my mastectomy. I have an amazing support group and fully believe in the power of prayer and laughter to heal! I’ve been seen giggling at chemo, joking with the other patients and nursing staff. Once I was NED I wore a pink boa to chemo to celebrate. My pastor was at my mastectomy and I felt the healing touch of the Lord through her post surgery when my x-ray was showing something in my lung, CT later showed it to be clear.

Never give up hope, never let them tell you it can’t be done. Every time I meet with my doctors I hear “typically this aggressive of treatment isn’t used on someone in your condition, but you are so young and strong so we’ll go ahead and try” or “you have responded amazingly well to treatment, it would be controversial to proceed with preventative measures for someone in your situation”. Find a medical staff that you love and that believes in you; their job is to help you fight your way through! I’ve been very blessed with an amazing medical team.