Vaginal Cancer - My Journey

    Hi!   My friends call me Sam and I hope you will consider yourself a friend. I am a 61 year old retired grandmother of 5. This is about my current journey with vaginal cancer and I assure you that it took me kicking and screaming, and without even a boarding pass.   I'm no stranger to cancer. I have watched my younger sister go through treatment and remission of breast cancer and been caretaker for my father and friend who both died of lung cancer. I have observed their treatment protocols and their courage in the face of this frightening disease.
     At the age of 31, I was diagnosed with carcinoma in-situ (pre-cancerous cells on top of tissue) of the cervix and to be honest, at that age, I was busy living and didn't pay much attention to the situation. I had surgery to remove the cervix and a hysterectomy, After a two- month recovery period, that was the end of it. No further treatments were required so I went about my life, less one husband who was determined to have children of his own -- but that's a whole different story. Following the hysterectomy, I was told that no further pap smears would be necessary since I no longer had a cervix. That was the medical opinion at that time. Boy were they wrong!
     Please be aware, that it is important to keep on having pap smears because there seems to be some correlation between prior cervix abnormalities and the chance of developing vaginal problems down the road. Insist on getting those pap smears taken!
     About ten years later, I developed a benign ovarian cyst which got twisted and the cyst and ovary had to be surgically removed. This left me with one ovary for the hormone benefits and little worry of anything else going wrong. In my mind, there was nothing left to be affected.
     However, in July 2006, I began having some dull pain in the lower pelvic region and my doctor sent me for a pelvic ultrasound to check the remaining ovary. They did an internal probe ultrasound and found a small cyst which still sits on that ovary. But during the procedure, I experienced a lot of discomfort from the probe and when they were through, I was bleeding which they said was not normal. I thought they had just been too rough and brushed it off. Three days went by with spotting and then I contacted the doctor again and he had me come in for a pelvic exam. There is nothing worse than being in those stirrups and having the doctor make funny noises as he examines you and the shaking of the head is also very unsettling. He took a pap smear and referred me to a Gynecologist the following day.
      The gynecologist was wonderful and a real straight shooter. He did an exam and decided to do a colposcopy on the spot. In addition, he did a small biopsy of an area of concern. He indicated that there were suspicious cells at the top of the vagina and for the first time "CANCER" was mentioned. What a scary word. Once said, you hear nothing further. Be sure to always take someone with you who can remember what the doctors said. You usually won't. He referred me without delay to a gynecologist - oncologist at a major hospital facility 60 miles north of our home.

      Nothing strikes fear more than the word oncologist. Now they had my full attention. Although by now I was starting to lose some of my modesty what with all the poking, prodding and exposure required so far, I was very happy to find that my oncologist was a woman. This little dynamo knew her business and was noted to be an expert in her field. I was in good hands. I wish I could say my nerves were too, but with the cancer scare and the distance of travel, I found my trips to the oncologist were less than pleasant. I suffered panic attacks on the freeway up and back each time and was convinced that each 18-wheeler was out to get me. My husband did the driving, but it didn't help. I was convinced I was going to die...and not from the cancer!
     After the intial exam by the oncologist, it was decided that I would have a surgical biopsy to determine what we were dealing with. The oncologists at this facility meet as a team to discuss all cases and were intrigued by this new one. It appears that what we were dealing with was not only a rare vaginal cancer that only affects about 2,000 women a year but the type of vaginal cancer had them perplexed. Their first question was -- did your mother take DES drugs when she was pregnant with you? My mother had passed away five years earlier and I didn't have a clue. Apparently these drugs were given back in the 40's and 50's to prevent miscarriage and discontinued in the 70's because they were suspected of causing cancer in the next generation. The strange thing was that those exposed to DES usually presented with cancer in their late 20's or early 30's. I was 60 and it didn't quite match. Rather than a Squamous Cell carcinoma, I was diagnosed with a rarer Stage 1 Clear Cell Adenocarcinoma of the vagina. They were not clear whether this was a primary vaginal cancer or maybe a remnant of the cervical cancer that had spread. This has still not been determined since my medical records from 30 years before are no longer available due to the death of the original doctor.
     Only 1% of vaginal cancers are adenocarcinoma so not only did I have a rare cancer, but an even rarer form of thattype of cancer and; to boot, I was too old to be getting that kind of cancer anyway. Oh joy! I could see it now. The medical journals full of photos of my most private area and articles about this medical oddity.
     The serious discussions of what came next was what filled the weeks ahead. Your head spins with all the "what ifs" and you begin your quest for all the information you can get your hands on about what this is you are dealing with and the human nature response of 'what is the prognosis?' But first the decisions and treatments begin.