October 28, 2002
Vulvar Cancer - My Journey
My name is Linda, 46yrs old, happily married 19yrs, 3 children, 2 boys 23 & 17 (actually my nephews who have been with me for 20yrs and 5 yrs respectively) I have one natural daughter age 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 somthing 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.
Second, came the need to find any and all infomration I could find. I spent countless hours searching the NET 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 prespective, tell me what to expect, what turn life would take. Through the NET 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 devestatingly, 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 anti depressant. 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 recepticle.
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 and depression, 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 anti depressant 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, 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 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 minus the drainage tubes. I now had a visiting nurse who came out M-F to pack my wounds daily, my husband did it the rest of the time. The lymphedema continued. 7/18 went back for a check up, GYN-ONC talking about rehospitalization if the wounds do not start to heal, to apply THE VAC (Vacum assisted closure machine, it is a machine that in which the wounds are stuffed with foam, tubing is attached to/across the foam and then to the machine creating negative pressure which allows further drainage and pulls the tissue together to facilitate healing) did some debriefing and was told to continue to pack wounds. 7/24 more debriefing of wounds done in office. 8/3 Went to see regular GYN as I thought I might have an infection, the GYN thought everything looked good. 8/8 went to see GYN-ONC, he found gauze stuck in both wounds, continuing pain and swelling. Dr decided to hospitalize me and have The VAC implemented, hospitalized three days, given IV antibiotic. 8/13 running low grade temp, the drainage coming out of wound is gray and pusie looking. Called Dr on call, told me to see GYN in the morning. 8/14 GYN in surgery, GYN-ONC on vacation, saw GYN's associate, came in took one sniff and one look and hospitalized me on the spot.This time I was hospitalized for nine days, Heavy duty IV antibiotics, Flagyl every 4 hours, ampicillian every 6 hours, oxygen, complete bedrest, other than use of bathroom. Wounds, slowly but surely healing. One more infection on 9/25, three weeks oral antibiotics. The VAC removed on 9/28.
Radiation therapy was supposed to start on 10/3, had appointment with the RAD-ONC, when I went to see him, despite having my records, he continually told me that "I do not have cancer." My husband and I did everything possible short of drawing him a diagram to let him know that I did indeed have cancer and was in need of radiation therapy. As my GYN-ONC was on paternity leave and wouldn't be in until the next week, the RAD-ONC was going to speak with him on his return and in the meantime present my case to the tumor board (of which I wondered just how many on the board were GYN-ONC's as mine is THE only one here in the valley).
I am happy to report that I can *finally* see light at the end of the tunnel. The end of my journey is drawing near, I started radiation therapy on October 9th. I have a total of six weeks external beam therapy, my lymphendectomy wounds are just about closed. I will be having surgery again (in office proceedure) to eliminate some scar tissue that is pressing against a nerve in the right side drainage hole. I too will be considering reconstructive surgery of the lymph node sites as the are two deep holes/indentations. Although I have not attempted sexual relations since my surgery in May, leaking, open wounds, attached to drainage tubing, just kinda puts a damper on the mood, if ya know what I mean . I do have feeling both clitorally and vaginally, so prosects are promising for a normal sex life.
As far as some personal insight into my feelings and what I have learned along the way. 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, reprioritzing, 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 begining. 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 choosen for me to help enlighten others and to make this form of cancer known to the world. You can and will get through it, I did and so will you...
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