My name is Sandra Yohanna, and I was diagnosed with Stage 3 Vulvar Cancer on December 11, 2017 at the age of 36. I had problems on my vulva for nearly 7 years prior to diagnosis. After more than a year of dealing with this horrible itch that wasn’t going away, I began to seek medical attention.
Doctors brushed it off as a bad yeast infection, but despite treatments, my condition worsened. What followed were 5 years of being dismissed and misdiagnosed countless times. Eventually, I was diagnosed with Lichen sclerosus (LS) through visual examination only; later on, I found out that it’s standard procedure to perform a biopsy to diagnose LS. Had they done so; the cancer would’ve been discovered sooner. Over the years my symptoms worsened from a persistent itch to daily pain, ulcerating lesions, painful urination, problems sitting due to pain, etc.
It took almost all of 2017 to get the attention of doctors that something was wrong. I was in physical agony, yet they made it seem like it wasn’t serious. After becoming very aggressive in demanding a biopsy, it was finally done. Three weeks later, I found myself with my mother by my side in front a doctor hearing the words, “You have vulvar cancer.”
Due to the doctor’s negligence, the cancer was far advanced and requiring invasive surgeries; which altered my physical womanhood forever, caused other lifelong issues and put me at risk for more. Since then, I’ve had 11 surgeries. After the first 2 surgeries in February and June of 2018, I was declared cancer free. But 5 months later the cancer returned. This called for another major surgery in December 2018, which took almost 9 hours. I’ve lost my entire outer anatomy during that surgery therefore this procedure included major reconstruction.
Since then I’ve had several more biopsies, recurrences, and surgeries. Sadly, the cancer returned again and has spread to my right inguinal lymph nodes at this point. After 2 years of surgeries and trying to avoid further treatment, radiation and chemotherapy had now become necessary. So, on February 3, 2020, I’ve began 7 weeks of aggressive radiation and chemotherapy. I’ve spent more than half of those 7 weeks hospitalized due to severe side effects and neutropenia. Currently, I am waiting to find out if treatment has been successful and if I am finally in remission.
This all could’ve been avoided had the doctors listened to my pleas and if there was more for vulvar cancer awareness, as well as what to look out for. It’s assumed that out of the almost 7 years I’ve been symptomatic, cancer was present for at least 7 years prior to that. After what happened to me, I couldn’t sit still and be passive, which is why I chose to raise awareness, educate others, and became an advocate for change. Therefore, the Vulvar Cancer Awareness Forum was born.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
My heart breaks for you. My mother went through the same thing…fought it for 14 years with surgeries, chemo and radiation only to have it return and spread too. She ultimately lost her battle 1/31/17.
Yes, even to this day when I’m asked about it, the term is so foreign to people.
I also have had vulvar cancer and Breast Cancer the vulvar surgeries are so extremely painful it took 12 weeks in bed last summer to recover from surgery I do think more women need to be aware of all the people I know I am the only one who has to endure this most women don’t know this exist mine started in my early 40’s with a cauliflower looking lesion I’m now 60 over the years I have had 5 incision surgeries and 1 laser ablation ladies believe us the struggle is real 👩❤️💋👩🙏🏻
I’m so sorry this happened to you. You deserved better from your doctors. I also complained to my doctors for years about nipple discharge and was told it was normal…. The discharge eventually turned into invasive ductal carcinoma. Had they listened to me and ordered a simple lab review of the discharge, the cancer could have been fended off with a simple tamoxifen pill. It is very sad when we are not listened to and end up having to pay horrible consequences. My prayers and thoughts are with you in your cancer journey and fight.
I never thought of batting breast cancer the second time around. This year is supposed to be my last year in remission treatment. Unfortunately, a (new case of cancer) tumor was seen in my test result. At this very moment, I am recovering from the procedure, and it’s pretty rough. I wish you well. 💗Stay strong. You got this! 💪
This is the most heartbreaking story and one almost identical to my mother’s. She was put into hospice this week due to finding the vulvar cancer too late. Good vibes to you during this difficult time.
3 days ago I was diagnosed with vulvar cancer. 🙁 Where can I find support?
Melynda, our thoughts are with you with your recent diagnosis. There are a variety of support resources, and we have two current programs to offer support. Fight Notes is a program from Fight Like a Girl Foundation that sends monthly handmade cards for those who could use some extra encouragement, and Fight Pals is an online pen pal program that pairs warriors with someone who can relate to their struggles. To learn more about Fight Notes you can click here, and to learn more about Fight Pals you can click here. There are support groups for specific types of cancer on many social media platforms as well.