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On multiple occasions, doctors told me not to worry, but I ended up being diagnosed with a rare cancer called leiomyosarcoma.
“You don’t have cancer.” Those words were music to my ears on July 28, 2022
“You have cancer,” are the words no one wants to hear in their lifetime, and the words I was told on Dec. 10, 2022.
What happened between July 28, 2022, and Dec.10, 2022? Misdiagnosis. It could have been avoided had I looked at the ultrasound report from July 22, 2022, and that’s why I’m sharing my story.
I was my own advocate, yet I wasn’t my own advocate. I wasn’t my own advocate because I trusted the doctors, even though things didn’t make sense. I went to the ER in excruciating left pelvic pain. However, the doctors told me I had a cyst on my right ovary. I questioned how a cyst on my right ovary could cause so much on my left pelvic area, they told me the pain could travel. At the time, I was in so much pain and not well, I listened to the doctors because doctors know best, right? Wrong! They did do a blood test to rule out cancer because of the size of the cyst. The blood test came back negative. I didn’t have cancer!
If I didn’t have cancer, what did I have? How could a cyst on my right ovary cause so much pain on my left pelvic area and fatigue? Because authorization for surgery took so long — two and a half months, to be exact — I decided to go the holistic way. I went to acupuncture and did yoga daily. I also meditated. And the biggest change was changing my diet and going almost vegan. I cut out bread, gluten, red meat, chicken, soy, dairy and sugar. It was a strict diet, and I was still in pain. I was miserable
Finally, in the middle of October, the pain I was constantly in went from 100% to 5 or 10%, hooray! I actually put off my surgery because I didn’t have cancer! The fatigue I was fighting was gone. I felt like a completely different person. I could walk again, I even went to a rave and partied like I didn’t have cancer.
But I still wanted to know what I had. Since I was better and thinking clearer, I was my own advocate and saw a different gynecologist for a second opinion. I asked if I had PCOS (polycystic ovarian syndrome) because I had all the symptoms. He said no and that it was just the history of my endometriosis, and that surgery was the way to go. He told me not to worry because I didn’t have cancer. I asked for another ultrasound report, and I was told I didn’t need one, they knew what they were dealing with. I also made an appointment with my surgeon because I had a few more questions.
Dec. 9, 2022 was surgery day, and I couldn’t be more relieved! I want this chapter of my life over with. I can’t wait to start 2023 fresh, in no more pain and healthy. Dec. 10, 2022, my surgeon walked in and gave me the news that shattered my world. I have cancer. I yelled at him and told him I asked for more testing, and he said even if they did more testing, it wouldn’t have shown the cancer. That was a lie. Had they done a CT scan or biopsy, they would have found the cancer months ago! They only relied on a blood test that came back negative for cancer.
On Jan. 19, 2023, I got the news from my oncologist that my cancer has now metastasized to my liver. I was devastated. I blamed the ultrasound technician for not finding the mass. I finally saw the ultrasound report from July 22, 2022. It clearly stated there was an indeterminate large hypoechoic mass 12.2 x 5.6 x 7.2cm. Had I seen that ultrasound report in July instead of trusting the doctors, I would have pursued a CT scan and a biopsy to rule out cancer.
Unfortunately, you can’t go back in time, you can only go forward. After sending a timeline of what transpired from July to December to my oncologist, I am happy to write that my oncologist referred me to a leiomyosarcoma specialist. I am now under the care of an amazing doctor and in a clinical trial.
I have leiomyosarcoma, a rare cancer that is diagnosed in 1 out of every 100,000 people per year. I am in a support group. I am sharing my story and cancer journey on my Instagram and Facebook, to bring awareness of my cancer and to encourage others to be their own advocate.
As I mentioned earlier, I was my own advocate, but only to an extent. I did what I thought was right, i.e., change my diet, meditate, do yoga, get a second opinion and see my surgeon, but it wasn’t enough. I failed to look at my ultrasound results and trusted the doctors. Now, I am on top of everything and question everything. And I encourage you to do the same! This is our life, and this isn’t a dress rehearsal. We only get one shot at this.
I hope my story can encourage others to speak up when they feel things don’t sound right. We know our body better than doctors do. Be your own advocate.
This post was written and submitted by Francesca Perez. The article reflects the views of Francesca Perez and not of CURE®. This is also not supposed to be intended as medical advice.
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