Sue's story
January 2001

Sue is an amazing person. She is a survivor of breast cancer who has lived with liver secondaries for twelve years. She shares her wisdom and gives us insights into her successful survival strategies. At the end of Sue's story there is a summary table of the treatments she has had.

I have met and talked with so many wonderful people, and I like to think that I might have helped them to realise that having liver metastases need not necessarily be a death sentence and that there are people who have lived with them for a long time.

NB: This is a detailed and updated version of Sue's story. Sue has taken the time to elaborate on the original version of her story that was published here as there has been so much interest from readers in her journey of survival. - Ed. [30th May, 2002]

My Experiences with Breast Cancer

Diagnosis...

In July, 1988, I was diagnosed with breast cancer. I had a lumpectomy followed by radiotherapy and was told by my surgeon that all was well and that I had a 95% chance of being cured. I took him at his word and went on with my own busy life, forgetting about cancer and its implications.

Recurrence...

February, 1991 I was diagnosed with liver metastases. That was shattering! The doctors didn't give me too much time to think and before I knew it I was undergoing chemotherapy (CMF) at the Peter MacCallum Cancer Hospital. I had 9 treatments, one every 5 weeks, so by the end of the year I had finished.

During this time, we were rushing around madly, reading books and getting information which might help me cope with the cancer. I read Ian Gawler's book "You Can Conquer Cancer", plus several others. The one which really hit the spot was Petrea King's book "Quest for Life". I was really impressed by this book and interested in meeting the person who could write with such insight, humour and empathy. The other book which made an impression was "Love, Medicine and Miracles" by Bernie Siegel.

Changing Lifestyle...

As the chemo progressed, I tried to change my diet, lifestyle and thinking patterns. I went to Sydney and had 2 consultations with Petrea King and decided that I would follow as much of her advice as I felt comfortable with.

DIET

My diet is based primarily on the suggestions in Petrea's book with additional input from Gawler and others - no caffeine, no alcohol, no red meat, no chemicals, no preservatives, no salt, sugar, fatty or fried foods. Only eat eggs laid by happy hens, organic chicken and small deep sea fish, and very limited dairy products. This was really hard for me to do because for 30 years I had been cooking in a certain way which now needed to be totally changed. I avoid pre-prepared and processed foods. Wherever possible I choose organic foods.

MEDITATION

As part of my routine I do two sessions a day. I had some personalised visualisation tapes recorded for me by a Melbourne psychologist and I listen to them every morning before I get up. Then I do another session before dinner - this one can be just music or a Petrea tape. I have been to a lot of meditation courses and I have to say that I am not very good at meditation and it took me a long time to come to terms with "just doing it the best way that I can". I don't think there is a right or wrong way or that there are any hard and fast rules.

JUICES

I have one green juice in the mornings (dried Barley Grass powder mixed with water). Then at the end of the day, we make a carrot/celery/beetroot juice. Making juice and cleaning the juicer is hard to fit into a busy schedule and I am extremely lucky because my husband does it for me. If I am out somewhere where I can buy a juice then I do so to save the trouble of making one at home.

VITAMIN AND MINERAL SUPPLEMENTS

I go to a GP (General Practitioner) in Melbourne who specialises in cancer patients and advises about the use of these supplements. She interprets all the results of blood tests and scans and regularly checks my weight and blood pressure and refers me to specialists as I need them. She also keeps up to date with complementary therapies and treatments as they come along. She is a great support and is always very positive.

Over the years many of the supplements have changed for me. At the moment I am taking the following: Vitamin C, Vitamin B 12 injections, Complex B, Selenium, CoEnzyme Q10, Revenol (which contains Pycnogenal) and Melatonin. I am also taking Flaxseed Oil, on the advice of the Gawler Foundation. In the past I have also taken Aloe Vera juice, Bovine cartilage and urea amongst other supplements and complementary medications.

SUPPORT GROUPS

I found that it was helpful for me to go to a support group, mainly to mix with people who are experiencing the same problems and emotions. Also to share practical information on food, supplements, doctors etc. I have made many friends through the various support groups I have attended.

RELATIONSHIPS

I have found that trying to sort out relationships has been the hardest thing to do, and that it seems to be an ongoing process. It seems that it is a matter of putting your own needs ahead of everyone else's, coping with cancer in your own way and trying to get your loved ones to understand what you are doing. I have also been through the process of getting to know myself better and trying to understand what has made me the way I am.

Building a Team...

At the end of that chemotherapy in 1991, I was not happy with the oncologist and decided to follow Bernie Siegel's advice and shop around for an oncologist to whom I could relate. I chose Dr. A* and have been with her ever since. I think that there is a great deal to be said for shopping around the different doctors and finding the ones you are comfortable with and to whom you can relate. This has got to play a large part in the healing process.

It was at this time that I started thinking of my health practitioners and myself as being a team who, with others, make decisions about, and monitor, my treatment. The main members of this team were, and still are, A*, B* and C* (the surgeon who performed my lumpectomy in 1988).

I started with Dr A* in January 1992 and she put me on Tamoxifen. For four years all was well.

During that time, I retired from my job and my relationship with Petrea King developed. I found her to be truly inspirational. She can put into words exactly how you feel and she can make you feel really good about yourself and confident that you can handle the challenge of living with cancer.

Starting Again...

In November 1996 the tumours in my liver started to grow again. At first I was in despair because when Dr A* put me on another hormone medication (Aminglutethamide) I had a really bad reaction and she said that all that was left was chemotherapy. It was at this stage that I attended a weekend workshop run by Petrea at Bundanoon to where she had relocated. I came back refreshed and ready to continue.

I decided that I was not going blindly into having chemo until I had researched what other options were available. And there started a frenzy of doctor's visits, scans and decision making. Once I had started all this I began to feel better about it because I felt that I was taking control and that my life was not just in the hands of the doctors. Ever since then I have found that it is important for me to feel that I have some control.

Briefly, following are some of the people I followed up:

Dr. D* at the Microwave Therapy Centre in Perth. He will talk to you on the phone and send out details of his treatment. There is a Dr. E* in Melbourne doing similar things now.

Professor F* at the Royal Perth Hospital specialises in localised treatment of the liver.

Professor G* in Sydney is a liver specialist and does some forms of localised treatment, e.g. liver resection, cryosurgery and localised chemotherapy. He had not had a lot of experience with breast cancer patients.

The Klinik St. Georg in Germany performs hyperthermia treatment.

I sought an opinion from another oncologist in Melbourne, but was not impressed with him. He did alert me to such things as saline injections (to the liver). I could not get a lot of information about this treatment.

I consulted two Melbourne liver surgeons who both said that they could not help me because I have breast cancer. They treat people with bowel cancer but are most reluctant to offer treatment for breast cancer because of the disease's habit of re-occurring in other parts of the body.

Ongoing Treatments...

Then I consulted with Dr. H*, who is an Endocrinologist who specialises in hormone related cancers (breast, ovarian and prostrate). He convinced me that we should try the hormone medication again and I decided to go with him. He stabilised me on aminoglutethamide, to which I had previously been allergic, by putting me on a much lower dose. I started this in January, 1996. I had monthly blood tests which showed signs of cancer activity decreasing and then a scan in June which showed a decrease in the size of the tumours.

From this time I have kept a loose-leaf folder which contains details of all this research, plus copies of all my blood test and scan results and which I keep up to date. This is another way of my feeling in control.

The aminoglutethamide was great until March 1998 when things started going wrong again and I then worked my way through five more types of hormone medication without success.

By May 2000 we had run the gamut of hormone medication and I sought some further opinions. I was very impressed with a Sydney oncologist, Dr. I*, who works in cooperation with a Chinese doctor who has a degree in Western medicine as well as his qualification in Chinese medicine. I saw both these people in Sydney while we were working at the Petrea King Quest for Life Centre in Bundanoon. We were going up there very regularly and were very involved in helping get the centre established.

After seriously considering the Sydney doctors I decided to stay in Melbourne, and go with Dr A*'s suggestion of repeating CMF chemo and then going on a low dose of Xeloda which is a very new form of oral chemotherapy, as a maintenance drug. I also decided, as a result of my research in Sydney that I would find a Chinese doctor in Melbourne and do the Chinese herbs and treatment along side the chemotherapy. I found Professor J* who had been recommended to me by various people and who seems to be the best known Chinese doctor in Melbourne. He runs an Academy of Chinese medicine. He has given me further dietary restrictions, herbs, exercises for stretching and breathing and at each visit I have whatever other treatment he deems necessary.

From May to November, 2000 I had 9 treatments of CMF and I am now on Xeloda which I started in December, 2000. It is too early to say how effective it is, but at this stage the disease seems to be stable.

Since the beginning of 1999 I have been involved with the Gawler Foundation, I have attended Support Groups and have visited their Centre in the Yarra Valley on several occasions. They were most helpful with advice when we were helping to set up the Quest for Life Centre and I continue to keep in touch with them as well as my frequent visits to Bundanoon.

I am always on the lookout for new things both conventional and complementary, which could help to keep me alive until the "Cancer Cure" comes along.

A Last Word...

One last thing that I need to say is that, although living with cancer is like a roller coaster ride and there are many ups and many more downs, some very positive things have also come out of it. The most important thing it has done is to strengthen an already strong marriage. My husband has been my main support and without him I'm not sure that I would have made it. I have met and talked with so many wonderful people, and I like to think that I might have helped them to realise that having liver metastases need not necessarily be a death sentence and that there are people who have lived with them for a long time. It has been a privilege to be so involved both with Quest for Life and, to a lesser extent, the Gawler Foundation. From these two communities I have received much support, counselling and acceptance.

Treatment History

See Sue's notice on the Community Noticeboard. - Ed .

*Doctor's names have been omitted as it is not appropriate to publish their names without their express approval.

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