Here I am, writing my story about being diagnosed with Stage 3 ER/PR+ Her2+ Inflammatory Breast Cancer, (a rare and aggressive form of breast cancer that occurs when malignant cells block the skin and lymph vessels of the breast), at age 39, so that I can make sure all the craziness stored in my head has somewhere to go.

March 2020. The world had started to shut down because of the COVID pandemic. My daughter was a year and a half old. I had decided while on maternity leave that I needed to step away from my previous career and find something where I could be home more with my family. I found that job and I was happy. Our office had just transitioned to working from home, and we were all trying to navigate this new way of life. We had no idea how long it would last, and I didn’t know how drastically my life would change within only 9 months. I would hear the words that shattered my world: “you have cancer.”

One evening, I was bathing my daughter, and when I leaned into the tub to wash her, my right breast pressed up against the side of the tub. I experienced a sharp, electrical shock of pain shooting from the side of my breast inward to the nipple. I felt around for a lump, but I could not find one. The only thing I thought I possibly felt was a slight difference in one area, maybe a little firmer and slightly tender, but I couldn’t be sure. I had my husband check as well but we both couldn’t say for sure that it was anything. I called my doctor the next day. She scheduled a mammogram and an ultrasound for March 26, 2020. I made it through those appointments surprisingly well. I received a call from the nurse practitioner from my doctor’s office, informing me, “It’s just fibrocystic tissue. Many women your age experience it. Let me know if you see any changes.”

No cancer! Amazing! Back to the regularly scheduled program. For the next six months, everything went on as normally as it could. We were doing okay, and I didn’t have cancer. Except, oh wait! I did!

In October 2020, I noticed that there was a hardness in my breast, the electrical shocks were coming more frequently, and I had an episode of right nipple discharge. The hardness started on the right side, where I first experienced the electrical shock of pain and it started to grow, moving towards the top of my breast. I called my doctor again and I was connected with the same nurse practitioner. I ended up going in for a clinical breast exam on October 6th.

I was informed it could be a blocked duct, (even though I had stopped breastfeeding 11 months prior) to then try warm compresses, and to take something like Advil or Tylenol. At this appointment, I had also mentioned that I had noticed a green bruising discolouration around my areola, but that it had gone away. I informed her also that the breast had more pain and discomfort during my menstruation cycle. She didn’t seem concerned and said a phone follow-up will be in 4-6 weeks.

A month went by, and I had another phone appointment on November 9. I informed her my right breast was still experiencing discomfort and fullness, especially during my menstruation cycle. I was reassured, again, and it was suggested I take Advil or Tylenol at the start of my cycle for 1-2 days for symptom relief. There was no relief. The hardness continued to grow, and it was growing fast.

We are now at December 8th, and I informed her that I was experiencing more electrical shocks, my right breast was approximately one size bigger than the left, if there was any pressure on the right breast it was uncomfortable, and my breast felt very heavy. She notes that my previous ultrasound and mammogram suggested the fibroglandular tissue and gave me Naproxen to try for the pain and inflammation.

December 21st. My right breast is now very firm in the upper right aspect, and it is growing. My symptoms are now constant. I have a letdown feeling in my breast, and I am constantly fatigued.

I should also mention that Inflammatory Breast Cancer (IBC) is often confused with a breast infection and doesn’t commonly form a lump. Part of the reason for telling my story is to also get more information to others about Inflammatory Breast Cancer. The following are symptoms. This information was taken from theibcnetwork.org, a wonderful site full of information on IBC.

* Breast swelling, in which one breast is suddenly larger than the other

* Bug bite or small pimple that doesn’t heal

* Breast that feels warm to the touch and may look infected

* Itching or shooting pain

* A dimpling of the breast skin that looks like an orange peel

* Thickening of the skin

* Flattened or discoloured nipple

* Swelling in the underarms or only on one side of the neck

* Possible lump (not common)

 

January 8, 2021. Happy New Year to me! HA Just kidding. My year was about to be the absolute worst I have ever experienced, and I have had some doozies. The pain in my breast has worsened over the past few weeks. The pain was intermittent but originated deep within my breast and moved forward towards my nipple. The pain is shooting and sharp and happens multiple times every day. At this point, if I pushed my thumb into my breast, it would leave an indent in the skin. The areola is very hard and firm and bras are very uncomfortable. I have had fatigue and nausea since December. I had another phone appointment with the NP and she believes that the fatigue and nausea are possibly due to my “underlying anxiety and recent low mood.”

You might be wondering why I wanted to put that information in my story. It is because I had always been one to say to myself that you need to trust your gut and if it says something is wrong, you need to believe it and keep pushing. I KNEW something was wrong, deep down I knew it. I just remember at the time thinking, “It isn’t cancer, they have told you numerous times. Believe them!” TRUST YOUR OWN GUT!

January 11, 2021, was the day I was able to finally go in and see my doctor. I. When she came in to do the clinical exam, I knew from the look in her eyes (she was masked of course, but I could see the change in her eyes as soon as I removed my gown) and because she said, “I’m so sorry Cindy, that you have had to be like this for months”, that it was absolutely 100% cancer. I tried to keep things light, and I remember saying, “I miss my small boob” and then laughing. At this point, my right breast was twice the size of my left.

While I was waiting for my first appointment, my breast started hurting more. I ended up in the ER that weekend because the pain I was experiencing kept getting worse. My breast must have really concerned the ER doctor because I was at the surgeon’s in less than a week to get the process started.

One of the absolute worst things about being diagnosed with cancer during COVID, was that I had to go to all of my appointments alone. My husband dropped me off, but he was not allowed to come into the hospital to support me. I sat in the waiting room alone, sat in the clinical room alone, and even though the surgeon and nurse were in the room, and Ben was on the phone, I was alone. I was alone while the surgeon told me how aggressive the cancer was and how alarmed she was that it had taken this long for me to be seen. I sat silently crying while she talked.

The day that I met my oncologist, she went over my treatment plan with me. There is a lot of information given at once and you are not in a headspace to take it all in. I do remember her telling me about one drug that she wanted to give to me. It is only covered  if you are Stage 4, so if I was Stage 3, we would have to pay out of pocket, and it was around $20,000. I remember saying, “Throw whatever you can at me. I will take anything.” At this appointment, we were unsure if the cancer was at stage 3 or if it was stage 4. I remember sending out to the universe to please, whoever was listening, make it stage 3. My daughter was only 2 1/2 at the time. What would she do if I was to die? The next day was my bone scan which showed that the cancer had not moved into any other place in my body, and on February 12, 2021, I walked into the cancer centre alone and had my first chemotherapy.

When you are going through chemotherapy, you have absolutely no immune system. if you develop a fever, it is right off to the hospital. I ended up having to go to the emergency room 3 times during my chemotherapy, which pushed back my next chemo by a week, each time.

My Chemotherapy was Neoadjuvant dose-dense AC-Taxol. I completed that in June 11 of 2021. I had a right modified radical mastectomy and right axillary lymph node dissection on July 9, 2021. Because my lymph nodes were removed, I developed Lymphedema in my right arm. For the rest of my life, I will have to wear a compression sleeve on my right arm so I can keep it under control. I cried the day I got my first sleeve, realizing that I will not have a day where I can totally forget about what has happened.

After I recovered from surgery, I had 12 radiation therapies. I received another year of treatment with Neoadjuvant/adjuvant trastuzumab and pertuzumab (pertuzamab was stopped early because the side effects were so bad. This was the drug that was around $20,000). My very last treatment was in May 27 of 2022.

It was August 4th, 2021 when I received a phone call from my surgeon with the news that my pathology report from my surgery was in and I was showing NED (No Evidence of Disease). In my mind, I had always felt that on this day, a lot of the stress and anxiety associated with the cancer would go away. It did not. I remember thinking, “What now? What do I do?” There is no handbook for Survivorship. I will celebrate this day as my Cancerversary.

Having cancer can be very lonely. Yes, I had my husband, daughter and friends by my side but it’s hard to explain to them how you are feeling and have them completely understand. You even get some people who just stop talking to you while you are fighting for your life. The one positive thing that came out of this experience is I have connected with others in the cancer community. Complete strangers, whom I may never get to meet in real life, but we talk, vent, cry, laugh, and totally understand what we are feeling because they have been or are currently there.

Because of these friendships, I wanted to share my journey and story, so I created an Instagram account @byebitch_ibc. Accounts like this helped me feel less lonely and if I can help just one person going through this feel less lonely, then it makes it all worth it.

Even survivorship is lonely. It’s hard to navigate what your life is to be like now. It will never ever be the same as it was. I’ve decided to go to a trauma therapist to help me with the medical trauma and PTSD this has caused. I think it is still going to take me a while to navigate this survivorship life. But if I want to watch my beautiful daughter grow up, I have to keep fighting.