My Story | Linda M., California, USA
My name is Linda. I'm 46 years old, and have been happily married 19 years. I have three children, two boys, 23 and 17 (actually my nephews who have been with me for many years), and one natural daughter, age 20.
I was first diagnosed with cervical cancer at age 27, when my daughter was four weeks old. I had a PAP which showed abnormal cells (dysplasia), then a colposcopy, then a cone biopsy, before having a radical hysterectomy. They also took two thirds of my vagina, as the cancer had spread there as well. This had occurred in the four-month period I was waiting for test results and second opinions. I was never told my stage.
Although I did not have radiation or chemotherapy as follow-up to the hysterectomy, I remained free of any cancer for the next 20 years. My only regret is that during all of this, I was NOT armed with information to allow me to have a better understanding of, and to be able to fully participate in my own treatment. By the grace of God, everything went well.
In March of this year (2000), after having my children harass me for months to go get checked, I went in for a GYN exam. Through stupidity and fear I had not had a PAP in several years, even though, from past experience, I knew that early detection is crucial. I knew something was up as I had this intense itching intermittently in the vulva.
When I went in for the exam they asked if I had HPV (human papilloma virus). I told them I wasn't aware of anything, but actually, until that time, I had never heard of HPV. The gynecologist noticed something in the exam, so he performed a colposcopy which showed some lesions, and a biopsy was taken.
In April, 2000, I was told that the biopsy showed carcinoma in situ of the vulva/VIN III (or pre-cancer). I was sent to a gynecological oncologist (GYN-ONC). Up until I heard that the area was extensive, and that I needed to see a GYN-ONC, my fear was minimal, now it was beyond belief. The appointment was made for three days later.
I saw the GYN-ONC, and after extensive examination, was told that I had three options: laser treatment, skinning vulvectomy (where they basically peel you like a grape), or radical vulvectomy in which the vulva, clitoris and lymph nodes are removed. I ended up choosing the skinning vulvectomy, because I felt that with the laser everything would be vaporized and no pathology could be done, and the radical was, well, just too radical for me at this point. The skinning vulvectomy allowed me to have the pathology done (the original biopsy could not show clear margins). I was to have reconstructive surgery at the same time.
Needless to say, I went through the gamut of emotions. First, came the anger, with myself, for not taking care of things sooner, and for having such a devastating form of disease. I ranted, raved, cried. It was extremely difficult to explain this type of cancer to others, and I have to admit, I wished it were any other type of cancer; it would have been so very much easier to talk about. I could see the pitying looks, imagine the questions, the curiosity. Can you still have sex? Can you enjoy it? What does it look like? Yet, who could blame them? I would be curious myself.
Second, came the need to find any and all information I could. I spent countless hours searching the internet. I was also looking for communication with others who had gone through this. I desperately needed to be able to share my fears and concerns with anyone who could give me perspective, tell me what to expect, and what turn life would take. Through the web, I found my sanity. I was connected with three very special women who had gone through what I was now facing. They pulled no punches, they spelled it all out in black and white. Yet, at the same time, they were filled with such compassion, understanding, and support; it was incredible. They reached out and saved me, guiding me gently but firmly through this maze of mixed emotions. Without them I was drowning, this is such a devastatingly personal form of cancer, now I had a lifeline.
Next I went through an extreme bout of depression. I would get up daily, full of good intentions, take a shower, pull on my clothes, and sit. I would sit for hours on end, staring into space, thinking of something and nothing all at the same time. I was powerless to move or help myself. Finally something clicked, and I made an appointment with my primary care physician (PCP) and asked to be put on an anti-depressant. He prescribed Paxil, and within a week or two, the fog began to lift.
Not only does this disease take its toll on the person living it, but it can, and does, affect family members almost as much. My family went through the anger, fear, and depression with me. Their emotions, although not identical to mine, were very similar. My husband took it the hardest. His biggest concern was whether he would lose me. And after knowing that I wasn't going to die from this disease, my biggest concern was how our sex life would be affected. I could not imagine the rest of my sexual years being only a receptacle. Sex has always been important to me, and I wanted and needed for it to continue to be so. My husband, on the other hand, would have accepted never having sexual relations again if it meant that I wasn't going to die and leave him alone. His frustration, anger, anxiety, depression and stress levels were at an all-time high. Not one to speak of his feelings, he kept them bottled up inside and they were taking their toll. No matter how hard I tried to get him to talk with me or anyone, he was incapable of doing so. I finally talked him into going to see our PCP, and, he too, was put on an anti-depressant. I learned that one should not be afraid to ask for help during such an emotion-filled moment of one's life. We could not have handled this without intervention of some type.
I had my surgery on May 8, after a two-day bowel prep. I remained in the hospital for five days with nothing but ice chips, an IV, the blessed pump which released the Demerol, a Foley catheter, a rectal tube, and compression wraps on both legs. On the day that the oncologist came in to remove the dressings and the tubes to allow me up for the first time, I was told that the pathology was back. To the SURPRISE of my oncologist, (he truly thought there would be no invasion), I now had invasive Stage 1 vulvar cancer. The treatment options at this time were radical vulvectomy (again, they remove everything), lymphadenectomy (removal of lymph nodes) and radiation, or radiation alone. I chose lymphadenectomy and radiation because, again, I needed to be sure there was no further invasion/involvement and, call me a die hard, I just couldn't face losing what was left of my sexuality.
I went in for surgery to remove my lymph nodes on June 26. Even if the cancer had spread to the nodes or beyond, the treatment would be the same as they had already removed two thirds of the clitoris. The graft site, on the inside of left leg, where they had taken the skin for my reconstruction, has been the most bothersome. I recently checked myself out with my trusty mirror and asked myself, "If this is a skinning, I wonder what the radical looks like?" There is virtually nothing left; you cannot even see my urethra. My skinning went from the bottom left of the inner lip (labia minora), up across the clitoris, down the right side and across the urethra.
The procedure I had is called a bilateral inguinal/femoral lymphadenectomy. A total of nine lymph nodes was removed on each side, and fortunately all the nodes were clear. My cancer had not metastasized.
At this point, you would think I would be nearing the end of my story, but my recovery and further treatment was put on hold. On July 5, 2000, I went for my post-op check up, already having problems with lymphedema. My right thigh, pubic mound, vulva, and stomach were swollen with excess lymph fluid despite having the Jackson/Pratt tubes in for drainage. Upon removal of staples, the wounds fell open on both sides with tunneling, so the doctor showed my husband how to pack each of the wounds with gauze three times daily. The next morning, I awoke with severe pain in the abdomen. I had an appointment with my PCP and had him check the wounds. He took one look, and stated, "This is beyond my field of expertise." As my regular GYN was just down the hall, and he had assisted in both my surgeries, I requested that he be contacted (my GYN-ONC was in surgery). My GYN came in, opened up the right side and stated that I had a nasty infection and would have to be hospitalized immediately. I was in the hospital for seven days on IV antibiotics.
This was the first of four post-op infections. I returned home without the drainage tubes. I now had a visiting nurse who came out Monday through Friday to pack my wounds, and my husband did it the rest of the time. The lymphedema continued. On July 18, I went back for a check up. My GYN-ONC talked about rehospitalization if the wounds did not start to heal, in order to apply the VAC, a vacuum-assisted closure machine that helps wounds to heal. The wounds are stuffed with foam, tubing is attached to the foam, and then to the machine creating negative pressure which allows further drainage, and pulls the tissue together. The doctor did some debriding (removing dead tissue) of the wound in the office and told me to continue to pack them. He did more debriding in his office a few days later.
By August 3, I went to see my regular GYN as I thought I might have an infection, and was told everything looked good. When I went to see the GYN-ONC with continuing pain and swelling on August 8, he found gauze stuck in both wounds. He decided to hospitalize me and have the VAC implemented. I spent the next three days in the hospital on IV antibiotics. I was released, but started running a low-grade temperature, and had developed a gray, pus-like drainage. When I saw the doctor, he took one sniff and one look and hospitalized me on the spot.
This time I was hospitalized for nine days with heavy-duty IV antibiotics, Flagyl every four hours, ampicillin every six hours, oxygen, and complete bed rest other than use of bathroom. My wounds, slowly but surely, healed. I had one more round of infection on September 25, and was given oral antibiotics three weeks. The VAC was removed on September 28.
Radiation therapy was supposed to start on October 3, but when I went to see the RAD-ONC (radiation oncologist), despite having my records, he continually told me that I didn't have cancer. Yet another setback! After a consultation with my GYN-ONC and a meeting of the tumor board, I was scheduled to start radiation on October 9th.
I am happy to report that I started radiation therapy as scheduled and I can FINALLY see light at the end of the tunnel. The end of my journey is drawing near. I have a total of six weeks external beam therapy, and my lymphadenectomy wounds are just about closed. I will be having surgery again (an in-office procedure) to eliminate some scar tissue that is pressing against a nerve in the right side drainage hole. I am also considering reconstructive surgery of the lymph node sites, as they are two deep holes/indentations. Although I have not attempted sexual relations since my surgery in May, (leaking, open wounds, attached to drainage tubing put a damper on the mood, if you know what I mean), I do have feeling both clitorally and vaginally, so prospects are promising for a normal sex life.
As far as some personal insight into my feelings and what I have learned along the way, I would have to say that in the grand scheme of things, this has been a cakewalk. There are so very many worse things out there that I could, and still may run up against at some point in my life. Cancer can be a blessing in disguise, it is a time for reflection, reprioritizing, finding out just what is important in our lives. It is a time to find out who your friends are, and a time to make new, lasting relationships. It is a time of joy and sorrow, a time to laugh, cry and unite. It is NOT always a death sentence, but a beginning. Although the road is often filled with potholes and ditches, it is worth the journey, and I wouldn't trade a second. We all have paths to chose in our lives, this one is mine. I believe it was chosen for me to help enlighten others, and to make vulvar cancer known to the world. You can and will get through it. I did and so will you.