Alicia // Leiomyosarcoma

Age: 47 years old

From: Birmingham, AL

What treatments did you undergo during your journey? Chemotherapy and surgery.

What were your signs/symptoms leading up to your diagnosis? In 2013, while pregnant with my daughter, I was told I had a fibrous tumor. No big deal, it would most likely shrink after pregnancy. Months after delivering my baby, my monthly cycles became increasing worse in terms of frequency and volume to the point it was affecting my daily life. In talking with my OBGYN, he recommended removal of my uterus. In 2014 at the age of 37, I had laparoscopic surgery to remove my uterus. The pathology was benign but had mitotic cell activity. Therefore, a month later a secondary robotic surgery was performed to remove my cervix to obtain clear margins. The doctors recommended one follow up CT Scan and to keep my yearly appointments. Fast forward three and a half years to 2018, I went for my yearly checkup and was told something in my pelvis was enlarged. After an immediate ultrasound, I was told I had at least five tumors in my pelvis with the largest measuring up to 8cm. Following their recommendation, I had an open belly cut surgery to remove a total of eight tumors, 8″ of colon, appendix, and ovaries. I went into immediate menopause at the age of 41. One side of my body had benign tumors, but the other half was diagnosed as low grade leiomyosarcoma. I made an appointment to see a sarcoma specialist at MD Anderson. The initial appointment was nauseating to learn that it was already stage 4 and this was considered a reoccurrence even though the initial occurrence was not even cancerous, however they explained it was a STUMP (soft tissue tumor of unknown malignant potential). At this initial appointment, the specialist predicted out how this disease would behave and his prediction has been correct every step of this journey.

Since 2018, I have had CT scans every three months to monitor the tumor growth. In 2021, I started chemotherapy for the first time and lost my hair. In 2022, I found it odd my leg had a swollen area. After a leg ultrasound and biopsy to confirm, we learned the cancer had spread more and was now in my leg as a 10cm tumor. Therefore, I started chemo a second time and lost my hair again. In 2023, I went through a third chemo. All three chemos worked to temporarily stabilize the tumors but did not obtain shrinkage. In 2024, I started a chemo pill. The doctor told me it was less than a 5% chance it would shrink the tumors, but shockingly I am in that 5% and have had great success so far with minimal side effects.

How did cancer alter your lifestyle? Cancer has really changed everything. I have grown stronger mentally and spiritually for the better. It caused me to want to infuse others around me with love and wisdom.

During my first chemo, I swelled to the point that getting around the house was a struggle. I remember crying because my children were getting forced to learn how to do laundry and dishes because I could not do it. It wasn’t that they were learning it, it was they were being forced on a quicker timeline because of my illness and I felt very guilty. I look back on this now and know it was silly to be upset, but being forced into things just because you have cancer is extremely difficult to handle emotionally.

Any advice for those coming behind you? Everyone offers you advice and it’s quite overwhelming. The best advice I got was from my uncle whose wife battled cancer. He said “Find the best doctor that you’re the most comfortable with and stick with them. Don’t listen to others when it comes to your doctor because you’re the one that has to know that you picked the best.” It was hands down the best advice I got and would tell others to do this too.

Do you have a funny cancer story? I have two stories. In 2018 when it was found I had tumors in my pelvis, my children were ages 10, 7, and 4. Prior to surgery, we did not know yet if it was cancerous and did not want to alarm the children. Trying to explain what was wrong in a way they would understand presented challenges. We told them mommy had these things in her belly that were not supposed to be there and had to get them removed. They wanted to know what they looked like so instead of using the term “tumors”, I said “they kind of look like gum balls”. To this day, my kids will sometimes refer to mommy had gum balls in her belly.

After the first cycle of chemo #2, I came down with a fever and was immediately put in the hospital out of fear of infection since my white counts were non-existent. The only issue/pain I had was from a hemorrhoid. After the first night in the hospital, the fatigue from the chemo was so intense mixed with the frequent nightly nurse visits. I was sitting in my bed, feeling awful, and they delivered my breakfast and the entire room fills with the scent of BACON! My morning was saved and my bad mood lifted, I had bacon! While eating my bacon, the doctor comes in and says “we need to do a rectal exam”……and just like that, the good doc ruined my bacon. I often chuckle and refer to any bad news as the doc ruining my bacon.

Favorite quote, scripture or song? “The Lord will fight for you, you need only to be still.” Exodus 14:14

How did you hear about Brighter? How has it made a difference? I have received the Brighter magazine in the mail for a long time. I have really appreciated the stories and helpful information. The articles about living in a death denying culture really spoke to me. At the time of reading the first article, I was going through a hard time when the cancerous tumor in my leg was causing a lot of pain. I was looking for ways in which to prepare my children for a future without me, which at the time I felt like my time was coming quickly. The article helped me understand there is no right or wrong way to prepare others. Picking how you handle or what you choose to leave to others is totally up to you and you alone. Nobody wants to talk about death, but sometimes it’s needed to release the pain, sadness, and anxiety. It helped with the emotions that I was feeling at the time and the honesty of the article was greatly appreciated.