Nola's Story

The day my baby was 6 months old I found a suspicious lump. The obstetrician checked it and pronounced it to be harmless. As I had Post-Natal Depression, the doctor did not want to give me a general anaesthetic and the "harmless" lump was left in place for another nine months.

When he removed it under a local anaesthetic (not a pleasant experience - I don’t recommend it!) he was still sure it was benign.

However, a couple of days later he rang to say I should see another doctor the next day at one of Sydney’s regional hospitals. He was evasive and obscure when I asked him for more information, although he did finally use the word "cancer."

The new doctor turned out to be the head of obstetrics at the hospital and is also a gynaecological oncologist (one of only several in Sydney). He said he was waiting for my pathology results to be phoned through, that I had cancer but until he had the results he didn’t know what course of action he’d be recommending.

I remember so vividly sitting in the room with him as he told me a critical factor would be the mitotic rate (mitosis or cell division rate) of the tumour: that less than 5 was benign, 5 to 15 was malignant but only mildly so and higher than 15 was aggressive and required radical treatment.

While we waited for the phone to ring I prayed fervently for a result of 14. The result was phoned through a few minutes later and it was 50-55, one of the most rare and aggressive tumours the pathology department had seen. The doctor gently broke the news and told me that he anticipated that it would have spread through my lymph system, may have crossed over to my left side and spread through my blood to my internal organs. He said, "I’m sorry, we’ll still operate but it may be too late."

The tumour was a vulval haemangio sarcoma, a soft tissue tumour of the connective tissue of the blood vessel. It’s very rare and had only been reported in one other case, that of an elderly woman who died of the disease. Since then there has been one more reported case, and I make the third case on record. Both the other women died as a result of the disease metastasising. A 0% survival rate is not great news!! If I continue to do well (as I certainly intend to!) then I’ll make it 33% survival rate, not great - but a lot better than 0%!!

I was sent for scans and x-rays and by the end of the day it was established that my internal organs were probably free of cancer - the first piece of good news. I clung to this positive information.

Lying on the bed during the CAT scans and having medical people do things to me without me knowing what or why, I thought, "This is what happens to you when you get cancer, you become a cancer patient - not a person." I felt like an object on a conveyor belt being "processed" through the system. Fleetingly, I also thought, "This is what my life will be from now on."

Some long-dormant force in me rebelled against this pessimistic voice and the degrading experience. I am claustrophobic and was fighting panic to keep myself still for the scans. I gave way to my panic rather than forcing myself to submit passively to whatever the medical people wanted to do. I pulled myself out of the CAT scan machine and had a good cry (thereby ruining the scan that was underway!!)

This was a huge change of attitude for me as passive submission has always been my way of doing things. I had always had the feeling that I had to please other people, be a "good girl" and do what I was told at all costs.

There was a sudden marked change in the medical staff in response to my "tantrum". The technicians and doctor starting looking me in the eye and calling me by my name. I felt that I’d clutched back a measure of control over my body and my destiny.

I realised it was very important for me to become pro-active on my own behalf and that I was the major player in this drama as it unfolded. From that time I haven’t allowed any doctor, nurse or technician to sweep in and take control of my body or my treatment. I always politely insist they look me in the eye, explain who they are, what they want and why they want it before I give my permission for them to proceed.

Later I read some wonderful books and found that research indicates that patients with life-threatening illnesses who are labelled by medical staff as being "difficult" have better survival rates and substantially improved quality of life when measured against passive or "obedient" patients with similar prognoses.

From that first day I have pursued this goal of retaining control and being an active partner in my treatment. I believe this attitude has been fundamental to my survival and well-being throughout my cancer experience and my life since then.

I am greatly helped by "complementary therapies" such as using vitamins, meditation, relaxation, counselling, reading, support groups, appropriate exercise, massage and so on. Calling it complementary rather than "alternative" is significant because this approach means we take the best of all that western medicine can give us but we are not limited by it in our search for better health and quality of life.

In fact, I’ve come to regard all support offered by traditional and complementary therapies as a smorgasbord, from which I can choose those things that I feel help me achieve my goals of survival, well-being and rich quality of life.

I would like to see this sort of information given at the point of diagnosis to help newly diagnosed patients work out their strategy and approach to the illness and to retain or regain control over their treatment and life. These things can be very significant factors in terms of survival and quality of life for the patient and their family.

To finish my story…

Twelve days after diagnosis, I had a right vulvectomy (removal of both minor and major labia) and removal of all the lymph nodes from right side at the top of my leg. A frozen section during the surgery showed that the lymph was free of cancer, so the surgeon did not proceed to a left vulvectomy and lymphectomy, which was wonderful!! There was no local spread through the tissue either so that meant two out of three avenues of spread were clear.

While there is no such thing as a certain cure of my disease as it can also spread through the bloodstream, my immune system has, so far, carried on the excellent work started by my new doctor.

Although it hasn’t all been plain sailing since (I’ve had scans give a false positive for secondary cancer, which is incredibly frightening and stressful), I have passed the 4th anniversary since diagnosis and have remained cancer-free. My doctor has talked about writing up my case as the first successful treatment of vulval haemangio sarcoma. While I’d rather be famous for other reasons, this is a great landmark!

Now every birthday is a celebration as when I was diagnosed just before my 37^th birthday, turning 39 and 40 seemed like an impossibly wonderful dream. I turn 40 this year!! And unlike many of my friends, I am blissfully happy to be turning 40!!!

I’ve come to understand that I got my cancer as a result of an unhappy and overwhelming combination of circumstances: traumatic pregnancy and delivery, hormonal factors from the pregnancy, thyroid deficiency and the Post-Natal Depression depressing my immune system so that the cancer cells were able to prosper instead of being destroyed as they normally would have been. We have had to come to terms with many major losses including not having any more children.

However, I also have made many gains as a result of having cancer. As a family, we have made many lifestyle changes to ensure that stress and conflict are minimised and that we have the happiest life possible, both as individuals and as a family. We focus much more on the really important things in life and are much less weighed down by the unimportant.

Cancer has forced me to get decisive control over my long-term depressive illness in order to stop it depressing my immune system. We’ve found that laughter, enjoyment and contentment are VERY good for the immune system and invaluable tools for cancer survival. I don’t watch violent or suspense TV shows or movies - I love romantic comedies!! I don’t stop myself from doing things I enjoy by worrying unnecessarily about the money involved. I’m learning to embrace every day and live the fullest, richest life possible and now I wouldn’t have it any other way!

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