The Power of the Community

The Power of the Community Through My Metastatic Breast Cancer Journey

My community of support has been a major factor within my breast cancer journey and has gotten me through many years. From the moment that I was diagnosed with early-stage breast cancer, over 22 years ago, to my first diagnosis with metastatic breast cancer just a couple years later, I have always had an army of support right there with me to help me throughout this journey.  

My breast cancer journey started out in somewhat of a unique way since I was only 31 years old and 8 ½ months pregnant at diagnosis. I was young and pregnant. This type of diagnosis was not happening very often in 1998. At that moment, I had to make some fast decisions about my healthcare and the pending healthcare of my unborn child. I remember the somber evening that I received the news of my diagnosis. I had no idea what was going to be my new fate in the matter of just one appointment.  

To me, and in my mind or thought process, I was an extremely healthy young lady who would soon be welcoming another baby girl to my family. Because I was being monitored by my ob-gyn on a regular basis during my pregnancy and had no apparent illness, I thought all was good. I did notice that I had a lump that was slightly under my left breast and near the armpit area. This area was never painful, but I did notice that it was getting larger and larger as time went on. Of course, I notified my gynecologist of these findings, but he assured me that it was probably just clogged milk ducts due to my pregnancy. I was then told not to worry about it.

As time went on, I felt compelled to continue bringing this issue to my doctor’s attention, and yet again, he felt that it was nothing for me to be concerned about. Looking back now and knowing what I know now as a breast cancer patient advocate, I realize how naive I really was during that time. For the mere fact that I had a noticeable lump in my breast area, and already 34 weeks pregnant, I should have insisted much earlier that my ob-gyn send me in for further testing. By the time that he heard my insisting pleas, the results were not what he nor I had anticipated. A mammogram revealed that I had a 3.5 cm, stage IIIB aggressive tumor that was growing right along with my pregnancy.  

This was a tough blow for me and even more so for my family and friends. They had watched me go through this pregnancy without any issues until now. I was young and never had been sick. How did my pending diagnosis slip through the cracks? Why wasn’t my doctor proactive with my findings? There were many questions that I just could not come up with decent answers to. My mind was very clouded. Like a true mother, I had to immediately think of my unborn child and her well being at this point.

The cancer diagnosis was aggressive, so my baby had to be delivered right away. After my daughter was delivered and healthy at just 34 weeks, I was immediately thrust into scans, medical appointments, and then lifesaving chemotherapy treatments. Following this regimen, it was on to surgery and radiation. I had finished my early-stage treatments! I had worked throughout my diagnosis, and my amazing support system had continued to support my every need throughout. They were there every step of the way.  My family, friends, co-workers, church members, and neighbors were all awaiting answers and were there to aid and assist me in any way.

My early-stage diagnosis was short lived. Just two years after my cancer-free diagnosis, I was diagnosed with stage IV, metastatic breast cancer in November 2001. My family and I were not expecting this news. Nonetheless, now I was a part of the nearly 30% of women diagnosed with early-stage breast cancer that will develop metastatic disease later.  

It has been almost 20 years ago since my first metastatic diagnosis. Since then, the cancer has spread to my bones, lungs, liver, spine, abdomen, and brain. My oncologist at the time of my first metastatic diagnosis did not think that I had long to live, so she suggested that I quit work and get my life in order. At the age of 34, with two daughters only three and five years old, giving up on life was not an option for me. It has truly been a fight to the finish, but my support system has been there for me from the very beginning, and it is amazing how I have been supported throughout my diagnosis. 

The power of my community has proven to be a big part of my metastatic breast cancer diagnosis; for my physical, mental, and spiritual well-being. They have gotten me through some good and bad times over the years. I have celebrated milestones with them and have shared some tears of sorrow. There has always been a shoulder to lean on or hold me up from time to time. I have had someone to aid or assist me through all my medical issues, and there have been many of those, from four breast cancer diagnoses and tons of treatments to a blood clot in my lungs, a hip replacement, a craniotomy, and many scans, MRIs, and medical appointments. I had to retire early from my job as an accountant when I was first diagnosed as metastatic in November 2001, at the urging of my oncologist. My coworkers supported me during that time, and many have stayed in contact with me with well wishes on social media and in person. I do know and realize on a daily basis that I have been very blessed to have such a great army of support that has been near and dear to my heart.  

So, this question has been asked on several occasions: can you live 20 years with metastatic breast cancer? Well, for me, I will hope to say “yes” in a few months since it will be 20 years for me, but the sad truth is not many of us do live this long with this diagnosis. I have watched so many friends die of this illness.  We need more attention and research funding going towards this disease. More and more people, especially young folks, are dying and we need this to stop now. There is not a cure for metastatic breast cancer! Thrivers like me are only afforded treatments that will slow the cancer down to extend or improve our quality of life. With my breast cancer subtype, I will be on some type of treatments for the rest of my life. Yes, until I have exhausted all my options. A feeling of loneliness and isolation can easily be a part of our journey as metastatic thrivers because there are those times when we can feel that others who have not experienced what we are going through just do not understand. It is a scary place to be! The feeling of a death sentence constantly waving over our heads, the never-ending scans which caused a feeling of scanxiety, a term we use to refer to the anxiety of our many scans and having to wait on the results of those scans. While I go about life in my “happy-go-lucky” spirit, I do face the day-to-day aches, pains and side effects that go along with my diagnosis and treatments. I just like to think that a positive attitude will make me feel a lot better than a negative one that I could have. 

I am here for a reason! How else could I explain being in and out of the cancer center and hospital for 22 years? That is most of my adult life. My daughters literally grew up in the cancer center. Seeing them growing up has been a miracle in itself; I could not have even imagined this in earlier years. I can remember those days vividly when I would take them along with me for different appointments I had scheduled on a particular day, and as a single mom most of my daughters’ life, there were many of those times. There were other times that I just felt that it was a learning experience for them to see some of the things that I was faced with when I would leave them to go to the cancer center. In my family’s case, we had never planned for this lifestyle to be our norm or reality, but the medical team and even random patients and visitors, made this an easier experience for me and my daughters. There was always someone in our midst who would come to the girls’ aide with treats, kind words and well wishes. They were never afraid of the cancer center; I think that they were liking all the special treatments. A little help and small gestures can go an exceedingly long way. With a metastatic journey like mine over the years, I am not sure how I would have made it this far without the many people who have rallied behind me and my family. I have felt the love and support that has gotten me from day to day over the years.

Want to hear Terlisa read this post? Click here to sign up for Perkatory on Thursday, October 28th at 7:00pm ET!

This piece originally ran in the Fall 2021 Edition of the MY LIFE Matters publication. Click here to read!