My Story | Susan V., Florida, USA

Cervical cancer, Stage 2b, January 2001 at 39
Chemotherapy, external and internal radiation (low-dose and high-dose)

I have been married 21 years, and have six children and three grandchildren. The first sign of cancer I had was bleeding during or after sex. I ignored it for many months because I was busy with the kids and grandkids, and just everyday life in general. I thought it would just go away. Since I've always been in good health, I rarely paid any doctor a visit. And since I've always had a fear of gynecologists, I never bothered going for regular checkups other than prenatal care for six pregnancies. In fact, eight years had gone by since my last Pap smear.

As the bleeding gradually worsened, I tried anything to avoid my husband's sexual advances. Intimacy was no longer enjoyable for me; in fact, I dreaded it. In late 2000, during the Christmas holidays, I started feeling pain in my lower left groin area. It was a nagging, somewhat dull pain that just never went away. So, knowing my husband had made New Years Eve reservations for us at a hotel, I finally felt I had to get myself checked out so I could feel well enough to dance the night away!

Two days after Christmas, I went to the emergency room. Although I was screened there for sexually transmitted diseases (STDs) and all came out negative, the doctor diagnosed me with pelvic inflammatory disease (PID). I was given an antibiotic shot, a prescription for anti-inflammatory medication, and was referred to a gynecologist.

Twenty-four hours after taking the anti-inflammatory drug, the pain was gone and I felt fine. Since I had never heard of PID, I got on-line to do research. I was devastated at the thought of having PID, thinking my husband had cheated on me. We argued about it for a week, until I had my first gynecologic appointment.

The first thing the gynecologist did was give me a breast exam, something else I hadn't done for ten years! All was fine there. Then he did the pelvic exam. He took one look, said my cervix was very abnormal, and decided to skip the Pap smear and do a biopsy right then and there. The look on his face and his tone of voice had me scared. He told me there was a very high probability that I had cervical cancer, but could not give me a final diagnosis until the biopsy was read by a pathologist.

I told myself not to panic. After all, I could have a hysterectomy and have it all taken out. There was no chance of having more children anyway since I'd had my tubes tied ten years ago. So I got dressed and was told to return in one week to go over the biopsy results. I was a nervous wreck when I left, but two days later the doctor's office called. They wanted me back at the office first thing in the morning. Now, I was totally frantic!

Nearly hysterical, I called my husband. I was certain something was very wrong. Sick with worry, he closed his appliance shop and came straight home. The next morning came and both of us went to the dreaded appointment. Sure enough, the gynecologist was correct. I had cervical cancer! And now he felt the cancer was too far advanced to be treated with a hysterectomy.

My husband broke down in tears as I sat there in shock. The doctor gave us five minutes to be alone, and all my husband could say over and over again was how sorry he was. He blamed himself, saying it was his fault, that he should have forced me to have yearly Paps, and that I didn't deserve this. Then the gynecologist stepped back into the room to give us the last blow: without us even asking about it, he said my five-year survival rate was 40-50 percent!

I was in such a state of shock I couldn't even cry. This could not be happening! All I could think of was my six children. How could I tell my ten-year-old daughter, my youngest, that she may not have a mother in her teenage years? Or my only son, who's twelve, that I so much wanted to watch become a man. Or my oldest granddaughter, age three, that I raised since birth and is as attached to me as I am to her. Or all the grandchildren I would never meet...how would they know me?

The gynecologist had me thinking I might not live five years. I remember doing the math. I assumed (incorrectly) that the survival statistics quoted to me by the doctor meant that I would only be alive for two and one-half years if I was lucky. All of this kept running through my mind.

I stopped to see my oldest daughter on my way home and told her the news. We stood there hugging each other, crying and saying it couldn't be happening. She told me she loved me, and that she wanted me to be there to see her get married and share her happiness in life.

The week before my appointment with the gynecological oncologist was overwhelming, and complete torture. My husband couldn't work, couldn't think straight or sleep, and every time he looked at me, the tears welled up in his eyes. It was as though he was already in mourning.

It took us an hour and a half to drive to the oncologist. He didn't have a regular office, but was located at a cancer hospital. I remember looking up at the big, bold sign which said, "Cancer Institute," and that's when it really sunk in for me.

The gynecological oncologist had just spoken with the gynecologist who had referred me. I liked him immediately because he was so cheerful and full of humor. He did the exam, telling the nurse I was an early Stage 2b. I asked him if that was good, because he was smiling. When he said I was curable it was the best news I could have heard. He told me that because my gynecologist was new to the field, he thought I was more advanced than I actually was. In any case, he should not have scared me like that without further tests.

This made me feel a little better, but, since I am vain, I worried that chemotherapy treatments would make me lose my hair. I was happy to learn that with cisplatin, the treatment he recommended, I shouldn't lose any hair on my head. Relieved to hear that, I got dressed as fast as I could to meet my waiting husband and daughter. They saw me smiling for the first time in two weeks. I had been given new hope I could beat this monster. I kept this attitude through all of my treatments, and, to this day, I remain positive.

My treatments consisted of chemotherapy along with external and internal radiation therapy. The chemotherapy was done in an ambulatory unit every Wednesday. The only problem I had there was getting the IV in. It always took several tries. Soon my arms looked like a heroin addict's because they were so bruised. I didn't want a port, though. My treatments were completed on April 25th, 2001, when I had my last radiation implant.

I'm so happy to be done with it. Side effects have been minimal so far. I did have severe diarrhea from the radiation, but that seems to be gone, except for an occasional "burst" every now and then. I wasn't told ahead of time that the radiation would force me into early menopause, but I'm dealing with it. The hot flashes aren't that bad yet, and I don't miss the periods. My radiologist thinks my oncologist may put me on estrogen, but I think I'd rather "go natural." I would like to at least do some research before starting hormone replacement therapy. I may need it, but so far I'm okay on my own. I could use a little help with my libido, though.

I no longer bleed, but intercourse is still painful. Each time my husband and I try, in the back of my mind I'm wondering if I'm closing up. It feels that way at first, then gets better, but afterwards I feel sore. I can't wait until the day when there are no more problems, but I wonder if that day will ever come again. It's been so long since my husband and I have been able to be intimate, peacefully, and without worry.

One side effect that bothers me on a daily basis is swelling in my left leg and ankle. One night, my entire leg swelled to three times its normal size, and for about a week, I felt pulling sensations in the back of my knee, almost like a pulled muscle, and I was barely able to walk. The swelling in the ankle has never completely gone away, but I keep it elevated each night which helps some. At times my ankle feels like ligaments are being torn which is very painful. I mentioned this to my radiation oncologist the day of my last implant. He sent me for a venous Doppler test to check for blood clots, but that was negative. I suspect I may have lymphedema.

I can't fool myself; I know I will always have cancer and I have many fears. I can only take it one day at a time. I'm so glad I was told of EyesOnThePrize.org. Nobody else seems to understand the feelings I am going through. Since my treatments are over, they think I should be fine. Even my husband thinks I waste too much time reading the emails and the sad stories. He thinks it will cause more stress, and that I should be more positive and put this all behind me. But I know that what I need and want to do is to be able to relate to others who have been there, and to learn all that I can about this disease and its after-effects. Eventually, I want to be able to help other women like myself who have just been diagnosed and are scared to death. I want to give them someone to talk to, and reach out to. I only wish I had learned of EyesOnThePrize.org earlier. I really could have used the support and knowledge of all you wonderful women. Lord knows I still can!

November 2001