Robin

Cancerversary: May 2013

Age at diagnosis: 46

Diagnosis: Adenocarcinoma

Stage of cancer: IB2

How my story begins: Before my diagnosis, I was very happily sexually active with my husband and physically fit.

I had normal Pap smears my whole life and procrastinated getting my Pap smear for about 6 months after I was due. I figured I was just always going to have normal Pap smears. When I received the call that it was abnormal, I was concerned, but not terribly, as I knew other women with abnormal results and things turned out fine.

I went back for the next test, which was very uncomfortable and disconcerting, but my doctor reassured me I was nowhere near cancer.

I had to wait for what seemed like forever for my results. They kept saying they weren’t back from the lab and the doctor hasn’t read the results and was on vacation. I was getting scared...

Finally, the day came to go in for my results. I am a medical record auditor so I'm very familiar with path reports and medical terms. I followed along as she went over the different areas of my cervix sampled. I understood CIN 1/2 and dysplasia, etc. so I was breathing fine.

Then...she moved her hand to the last finding on the report. The words jumped off the page, threatening, menacing and choking the breath out of me. “Adenocarcinoma, malignancy.” I stopped breathing. My heart felt like it fell through my stomach. I looked at my husband speechless. He saw the fear in my eyes and tried his best to pick up and ask questions on the next steps. Again, my doctor seemed to minimize the gravity of the situation saying cytology reports aren’t that reliable and I would need a cone biopsy

How I felt after diagnosis: I was terrified. I ate, slept and lived fear. I lost 20 lbs just because I could not eat due to fear and anxiety.

Telling my family and friends: I didn’t want to tell my mom because my oldest sister died of colon cancer and I didn’t want her to think I was going to die too. My kids are grown and they took the news well. I am not sure how they really felt. That would be their story.

Telling people you have cancer is hard because the way they look at you. Cancer is so often a death sentence so people are very mournful when you tell them. It made me worry I was going to die.

My treatment: I went to a teaching hospital to ensure I got the best treatment.

I got the cone biopsy, which confirmed malignancy. The margins were not clear so I required a radical hysterectomy and lymph node dissection. The lymph nodes were clear and fortunately did not require radiation or chemotherapy. I did have stage 1B1, which is almost stage 2, and I had read survival or recurrence for the stages, which bombarded me with more anxiety.

How I felt after treatment: After treatment, I felt relieved to finally know it was out and what the stage was. I felt blessed and happy that I didn’t have it spread throughout my body.

What was most difficult for me: Living in fear from diagnosis to surgery was most difficult for me.

What I did to help myself: I went to counseling to deal with anxiety.

My life after cancer: My sex life suffers. My ovaries were removed and I take hormone replacement, but I have very little desire. I also live in fear of recurrence or another cancer invading me since I have read once you have cancer, you are more susceptible to other cancers.

Where I am today: I am 6 years cancer free... but I still believe it is coming back - like a demon that will forever haunt me.

What I want other women to know: I had my last “normal” Pap smear exhumed and had it independently interpreted by a new pathologist. The specimen was unequivocally “ABNORMAL.” This means that the initial laboratory misread my Pap. Had it been read correctly, I would have been able to take care of it before it evolved to cancer.

Women should know that the lab technicians and techniques used by some labs are not reliable.

How I will try to help others: I will share coping techniques and comforting bible texts if they want that. I will also advocate for better testing.