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My Story | Doreen, South Africa

Vulvar cancer, Stage 2, October 2000 at 68
Radical vulvectomy

A Daughter's Story

My mum, Doreen, was diagnosed with cancer of the vulva about three months ago. For the past several years, she had complained of vulval soreness. She didn't have any unusual itching, just soreness, for which she used a variety of different creams. As a result of a biopsy taken during an hysterectomy in 1998, the soreness was diagnosed as lichen sclerosis. Unfortunately, the biopsy was taken only on the left side of her vulva, the area where she was NOT having problems! If biopsies had been taken from both sides, she may have avoided major surgery later. As it turned out, her left side was still clear of cancer when she had her vulvectomy two years later.

My parents had just returned to their home in South Africa when, as a result of our constant nagging, Mum agreed to see her Gynae. After he diagnosed vulvar cancer, however, he was unable to refer her to a suitable surgeon there. And so, the job was left to me to find one here in the UK, since she was still entitled to receive care here. I searched the Internet for information, but all I seemed to come across was doom and gloom.

I am a practising midwife, having worked for a short period as a general nurse caring for women following radical vulvectomy. I remembered it as a mutilating operation. I was hoping, like many other surgical procedures, it would have been improved. My mum is 68 years old, very fit and healthy, so I knew she would be able to cope with more than the average person. I did my homework, and had her referred to the best hospital in London, England, for a modified radical vulvectomy as recommended by her gynaecologist. This meant removing the clitoris, most of the vulva, and inguinal lymph nodes on both sides (a needle biopsy on both sides was clear of cancer).

The operation was performed on 16th October 2000, and my mother was cared for in a High Dependency Unit for 24 hours. The equipment was frightening. She had a nasogastric tube, arterial line, central venous pressure line, epidural, a couple of drips, urinary catheter, and two drains. She needed two units of blood, as well. The next day most of the tubes were gone, and she was back in the ward. The epidural was left in place for three more days. Following its removal, the staff strongly encouraged analgesia, and I agreed. Although my mum insisted she was in no discomfort, I knew she must have been in great pain.

After eight days in hospital, I pushed Mum's doctors to discharge her as I knew that the longer she remained there, the greater the risk of infection, and I felt I would be able to care for her at home. She did develop an infection, and was started on antibiotics which made her feel very ill. After ten days in hospital and a few arguments with the doctors, my mum was discharged to my care and I have to say she did very well. The wound in the right groin remained slightly open and leaking clear fluid, and I cleaned that regularly with a Tea Tree oil mix, but there was no sign of any remaining infection.

I would like to warn others who have the inguinal lymph nodes removed about something that happened to my mum during her recovery at home. She got up one morning and found the bed soaked. She was panicked and devastated, thinking she was now incontinent. "What have those doctors done to me?" she asked, "I'm going to be incontinent for the rest of my life!" I looked at the wounds, put a little pressure on the right side, and over 500 millilitres of fluid poured out! "What have they done to my bladder? Why is it coming out of my leg?" she cried. When I explained to Mum that it was just the lymph fluid that would normally drain from her leg, we had a good laugh. During this time you really need humour as it helps the healing process.

Something I have not mentioned is sex. I think everyone feels differently about this subject. I believe you can have a fulfilling life without it, and fortunately my mother feels the same. Does she feel this way because of her age? I don't know, but I think I would feel the same, even though I am much younger than she.

My mum's recovery progressed at a slow, but steady, pace. The fluid continued to leak, but there was gradually less of it. Healing will be a long process, but we'll get there. Two weeks later we went back to the hospital for the final pathology results and received wonderful news. Because the cancer had not spread, Mum doesn't need chemotherapy or radiotherapy. No further treatment will be necessary. The doctor was happy with the groin wounds, but has warned us they will take a long time to heal. There is still a lot of leakage from the one side, but the other side has healed well. I think her quick recovery can be attributed to my mum's own good health, and to the homeopathic remedies I encouraged before, and immediately after, the operation. My mum hopes to return to her home in South Africa in a few weeks, fully recovered.

Debbie, daughter
East Sussex, England

January 2001