Sisterhood of Survivorship
Sharing, Caring, Surviving
Linda M's Story
Year Diagnosed: 2000
Type of Cancer: vulvar
My name is Linda, 46 yrs old, happily married 19 yrs, 3 children—2 boys who are 23 & 17 (they are actually my nephews who have been with me for 20 yrs and 5 yrs respectively) and I have one natural daughter who is 20. I was first Dx with cervical dysplasia when my daughter was four weeks old, had my Pap which showed abnormal cells, then colposcopy, then the cone biopsy before having a radical hysterectomy, which included 2/3 of my vagina as it had spread from the cervix to the vagina in a four month period while awaiting all the results and two opinions, at age 27. I was never given the info regarding a stage.
I remained free of any CA for twenty yrs. No radiation or chemo follow up on the hysterectomy. My regret in all of this is NOT being armed with information to allow me to have a better understanding and to be able to fully participate in my own treatment. By the grace of God, everything went well.
In March of this year, after having my children harrass 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 yrs, even though from past experience, I knew that early detection is crucial. I knew something was up as I had this intense itching intermitently in the vulva. When I went in for the exam they asked if I had the HPV virus (wart), I told them, not that I knew of, actually until this time, I had never heard of HPV. The GYN noticed something in the exam, a colposcopy was done which showed some lesions, a biopsy was taken. In April of this year I was told the results of the biopsy showed carcinoma in situ of the vulva/VIN III (or pre-cancer). I was sent to an oncologist.
Up until I heard that the area was extensive and that I needed to see an oncologist, my fear was minimal, now it was beyond belief. The appointment was made for three days later... so quickly. I saw the onc and after extensive examination, was told that I had three options, laser, skinning vulvectomy (where they basically peel you like a grape) or radical vulvectomy where they remove everything (vulva, clitoris and lymph nodes). I ended up choosing the skinning vulvectomy as with laser everything is vaporized and no pathology can be done, the radical, was just too radical for me at this point, the skinning 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 a gamut of emotions. First came the anger, with myself, for not taking care of things sooner. Secondly, for having such a devestating form of disease. I ranted, raved, cried. It was extremely difficult to explain the type of cancer to others. 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. Third, came the need to find any and all information I could. I spent countless hours searching the Internet for information. I was also in search of being able to speak with anyone 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, what turn life would take.
Through the Internet 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 were and ARE my lifeline, 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, take a shower, pull on my clothes, full of good intentions and sit. I would sit for hours on end, starring 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 PCP and asked to be put on an antidepressant. He prescribed Paxil and within a week or two, the fog began to lift. I must say 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 gamut of emotions with me, not the same emotions, but similar. Anger, fear, depression. My husband, took it the hardest. Was he going to lose me was his biggest concern. My concern was how would our sex life be affected, after knowing that I wasn't going to die from this disease. I could not imagine the rest of my sexual years as being only a receptacle. Sex has always been important to me and I wanted, needed for it to continue to be so. My husband on the other hand, would have been accepting of 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. He is not one to speak of his feelings, he is one to keep them bottled up inside him and they were taking their toll. No matter how hard I tried to get him to talk with me or anyone, it was beyond his capabilities. I finally talked him into going to see our PCP and he too was put on an antidepressant and Ativan for the anxiety.
Do not be afraid to ask for help during one of the most emotion filled moments of your 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 5 days, nothing but ice chips, IV, the blessed PCA which released the demoral, a foley catheter, a rectal tube and compression wraps on both legs. On the day that the Onc came in to remove the dressings and remove the tubes, and allow me up for the first time, I was told that the pathology was back. To the SURPRISE of my Onc, he truly thought there would be no invasion, I had invasion and now had vulvar cancer/Stage I. The treatment options at this time were radical vulvectomy (again, they remove everything), lymphendectomy (removal of lymph nodes) and radiation or just radiation.
I chose lymphendectomy and radiation because again I needed to be sure there was no further invasion/involvement and call me a die hard, but 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 it has spread to the nodes or beyond, the treatment is the same. As they have already removed 2/3 of the clitoris. The graft site has been the most bothersome, it is on the inside of my left leg. I recently checked myself out with my trusty mirror and thought 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 and down the right side and across the urethra. I had nine lymph nodes removed, on each side, I had a bilateral inquinal/femoral lymphendectomy. The results from pathology returned with NO METS, my nodes were clear.
You would think this would be nearing the end of my story however, my recovery and further treatment was put on hold. 7/5 went for my post-op check-up, already having problems with lymphedema, right thigh, public mound, vulva and stomach 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. Dr. 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 also assisted in both my surgeries, I reques