My Story | Linda, Texas, USA

Squamous cell cancer of the vulva, diagnosed May, 2003
Vulvectomy, partial vaginectomy, radiation, chemotherapy

Breast cancer, 1997

I am happy to share my story to help others diagnosed with this cancer who are anxious to find how others have coped and survived.

I delayed my Pap smear/annual exam with my gynecologist for about fifteen months. That was unusual for me. I finally set up the appointment when I noticed what I thought was a cyst in my vulvar area. I had previously excised a Bartholin's cyst when I was only 21 years old, so I thought that since it was in the same area it must be the same thing. My gynecologist decided to treat it as a cyst for two weeks (the power of suggestion.) He gave me antibiotics and told me to see if they worked and to return in two weeks. When I palpated the area, it felt suspiciously like a bunch of small grapes.

After two weeks, I was referred to my wonderful gynecologic oncologist. He performed a biopsy in the hospital which was positive for "invasive squamous cell carcinoma, Bartholin's area mass." I was scheduled for a vulvectomy and partial vaginectomy in about one week to remove the mass (about 3.5 cm) and to have a separate incision to remove my inquinal nodes on the left side. In addition, there would be a third incision to take a skin flap from my left inner thigh and reposition it over the vulvar area to replace the tissue removed. My clitoris would not be removed, and only the left one-third of my vagina would be operated on.

My husband and I asked a lot of questions. I am a seven-year breast cancer survivor and my experience has been that you need to go in fighting and be prepared for a marathon. I was very frightened but was not depressed and did not ask, "why me?" I just wanted to start getting well. The long-term survival issues (lymphedema, frequent cellulitis infections, skin fibrosis from the radiation) are more difficult for me to adjust to.

I was hospitalized for about nine days and was on a morphine pump for only about three of those days. I do not recall having much pain, and was able to switch to oral pain medications fairly soon. I could not wear underwear for months, and when my catheter was removed (about seven days after the surgery), I began using a water spray for hygiene and took Sitz baths - very important for the healing of the wounds. My drains gave me problems, though. One fell out too soon and I developed a lymph gland swelling (like an egg under the skin), requiring the insertion of another drain. I wore compression pumps on my legs and was checked carefully for blood clots.

After I was able to return home, I took it very easy for several weeks. I also had a bout of cellulitis infections requiring aggressive IV antibiotics, and other hospital stays. I was able to begin a regimen of daily radiation with chemotherapy (carboplatin weekly) in about eight weeks.

The radiation caused severe diarrhea, fatigue, and surface skin burns, particularly in the inguinal areas. Both sides of my pubic area were radiated as well as my pelvis. The radiation has caused some troublesome long-term skin effects. I still can see the radiation field like mild sunburn on my pubic area and upper legs, and the skin is fibrotic and hard. I also have frequent bouts of diarrhea.

By contrast, the carboplatin chemo regime was never a problem (my hair did not fall out!), and the only side effects were low blood counts that were treated with shots. After the radiation treatments ended, I had an additional twelve weeks of chemotherapy. I was able to work only a very limited part time schedule from my home during the eight-month course of treatment.

To treat my lymphedema in my upper leg (the swelling around my incisions and the radiation caused blockage in the lymph flow), I requested and received a prescription for manual lymph drainage (MLD). This is a specialty area of massage therapy, performed by a Vodder-trained therapist. She said that having my massage treatment immediately after my radiation was very important to avoid hard scar tissues and to develop new pathways for drainage. I now wear a full leg compression garment every day (forty pounds, not your mom's compression stocking) and a night garment to encourage the drainage. I also am doing water walking exercises.

I'm now about 17 months out, and my CT scans every six months have been clear. I have not had any problem with sexual functioning, although my body does not look the same! I hope that my story will encourage other women who are facing this cancer. It is certainly hard to discuss this with anyone, or even to describe what kind of cancer it is! I have described it as a "gynecologic cancer" to my co-workers. For those more curious, I have described it as "like cervical cancer." Let them use their imagination! I hope vulvar cancer, (which I understand strikes about 2500 women each year in the US) never becomes a household word.

May 2005