Lori

Location: Pennsylvania

Cancerversary: February 2013

Age at diagnosis: 34

Diagnosis: Adenocarcinoma in situ

Stage of cancer: Not applicable

How my story begins: I began to notice spotting about a year or two before I was diagnosed. I kept feeling like I had a yeast infection. I went to my doctor several times, but nothing was found and I was brushed off. I switched doctors several times until I found the practice I am at now. I became pregnant with my second child and four months after he was born I had my annual pap test. A week later my doctor called to tell me they I had abnormal cells and would have to see an oncologist.

Life before my diagnosis: Fairly normal. I was married and had two kids. All was good!

How I felt after diagnosis: I felt scared and alone after I was diagnosed, but was quickly referred to an oncologist at The University of Pennsylvania. She saw me within 24 hours after I received the results from my doctor. She eased all my fears. I had a colposcopy and eventually a cone biopsy. I was diagnosed with Adenocarcinona in situ. It was decided that I would need a hysterectomy - removal of cervix and uteris.

Telling my family and friends: I quickly drove to my parents house after I was diagnosed because my husband was working. It was hard to tell friends and work. I remember having my husband call my boss at the time because I was too emotional and scared to get the words out.

My treatment: I had a hysterectomy. My pathology reports noted that all was contained and no further treatment was needed.

How I felt after treatment: Honestly, the hysterectomy was a blessing! No more menstrual periods! Recovery was not too bad, but I couldn’t lift my infant son for several weeks. This was hard.

What was most difficult for me: I had some granulation after surgery. I was grieving over the loss of my fertility. My husband and I didn’t know how many children we wanted or when we wound stop trying for more kids. My diagnosis made the decision for us, which was frustrating. Fear of rediagnosis was hardest. Just when I was settling back into life, I was diagnosed with VIN III of the vulva in 2018. This led to another surgery - vulvectomy and more monitoring by my doctor. Even in 2023 I’m constantly on high alert of my gynecological health. Any abnormal symptom or skin growth and I’m on the phone with my doctor.

What I did to help myself: At the age of 43 I am getting the Gardasil HPV shot series. I talked it over with my doctor and she agreed that it could help prevent further reoccurrence and potentially be helpful. I also try to remind myself that if anything is wrong that I know the symptoms and will go to the doctor before it becomes a huge issue.

My life after cancer: I started a non-profit to help other women in my position called Happy Soles in 2018. It started with providing socks for women diagnosed with gynecological cancer so that they would be confident in the stirrups at their appointment. It has now morphed into providing socks for several national cancer organizations. We also now provide funding to cancer patients that are struggling with fertility issues after cancer/treatment - oncofertility. We focus on the education of fertility to newly diagnosed cancer patients. Most patients are provided a diagnosis, but never told their fertility may be affected by treatment or that there are options to freeze eggs/sperm. Sadly cost can be a deterrent for many men and women.

Where I am today: I am healthy and thankful. I want people to know that they are NOT their diagnosis.

What I want other women to know: I want other women to know that there are fertility options. They need to slow down for a minute and ask their doctor for support and education through the process.

I also want to encourage women NOT to be scared of their gynecologist. Yes, it’s not our favorite place to visit, but an annual exam, pap test and HPV testing can save a life.

I know some people are skeptical about Gardasil, but I encourage women to do their research and consider getting vaccinated at any age, the younger the better. I’ve never been positive for HPV when I’ve been tested, but most cervical cancer are a result of this virus. Most men and women have been exposed to it. Cancer as a result from HPV can pop up years later when we least expect it.

How I will try to help others: I try to help others through my charity Happy Soles - mentioned above.