As this is my first letter as Chair, I wanted to say how much I’m looking forward to being involved in Ovacome’s growth in the years to come, and to extend my thanks and admiration to those who have been working so hard all year to make Ovacome’s services the best they can be.

Since the last issue, we held our first "Midlands" AGM at Alton Towers. We all had a chance to catch up with friends old and new and, in some cases, attach faces to the Fone Friends we’ve spoken with dozens of times already.

Adopt a hospital
Louise Bayne took the opportunity of a captive audience to launch her Adopt a Hospital programme for the Raising Awareness Task Force.

By now, our members have committed to making sure over 50 hospitals are aware of Ovacome and its services, and that hospital staff know about Ovacome so they can refer women to us.

Our patron Jenny Agutter, along with Ovacome members, did their own bit for raising awareness by launching our new video and fact sheets to the media with resounding success. For those of you who may be interested in receiving any fact sheets, or want to offer them to your local hospital, call Alex at the Ovacome office to see exactly what’s available.

Fone Friends
The Fone Friends network continues to get better and better. Karyn Connor has been working tirelessly to rally her team, creating a rota that ensures that people who need to talk to someone can get easy and helpful access to one of our members. Plans are also under way to hold a training session that we hope will give the members of the Fone Friends network the support they need to help others.

Advisory Board
We’ve also taken a major step forward by creating an Advisory Board that will help us review and write the important information about ovarian cancer that we know so many of you want.

Diane Chapman, with her seemingly endless energy and inspiration, has shown us the way forward for that Board, by helping identify excellent healthcare professionals from traditional and complementary treatment approaches. This multi-disciplinary Board will hopefully reflect Ovacome’s desire to offer a wide range of information that members say they find useful. It also allows us to ensure that the information is as accurate and up-to-date as possible.

As a first step in this effort, you’ll see some comments we’ve received from a medical oncologist about last issue’s With Complements column. The insights from Dr Richard Osborne in Dorset offer yet another perspective to the issue of how best to approach your treatment regimen.

Welcome new sponsors
Finally, we sadly bid goodbye to our corporate sponsors, SmithKline Beecham Oncology, which recently folded its UK business operations in the oncology field. SB supported many Ovacome activities over the last three years including the newsletter, the production of our new video and the set of accompanying fact sheets.

Bristol-Myers Squibb have graciously committed to working with us for the foreseeable future and we are looking forward to developing our new ties with them. Happily, Dee Drinkwater, who has done an incredible job designing and printing the newsletter each quarter, will still be working with us to make things happen.

So, a very, very busy Summer indeed for Ovacome. With a hectic Autumn still ahead. Where everyone gets the time and energy, I just don’t know! But what a difference it makes to so many.
Madeline Gold

Welcome to the Autumn edition of the newsletter.

It has been a busy quarter for me personally, David (my husband) and I are going to be moving to Southampton shortly and have been searching Hampshire for a new house. Not an easy job as there are some fantastic properties around the area, but hopefully we will be moved and settled soon.

I am extremely grateful to all of you who have continued to send me articles for the newsletter. As I said at the AGM, this is what the newsletters should consist of (along with more readers tips and the continuing medical articles), as these help to inspire our readers. If anybody is interested in undertaking a book review for me please contact me on 01992 446306 for more details.

Please carry on sending in your letters so that I can continue to produce an informative and useful newsletter.

Just a reminder about the dinner being held on 7 November 1998 at the Conrad International Hotel, Chelsea Harbour, London. Tables are still available: if you are interested please contact Helen Ellis on 01276 27511. This is an Ovacome fund-raising event organised by Helen as a tribute to her mother who sadly died earlier this year from ovarian cancer.

Finally, there has been some good news in the press recently regarding the improved cancer survival rates.
Debbie Howells

Deed of Covenant
An individual or company agrees to pay a set amount to Ovacome for at least three years (usually four). This payment is made net of tax and Ovacome can claim the tax back from the Inland Revenue, e.g. an individual donates £75 per annum to Ovacome, Ovacome can then claim a further £25 from the Inland Revenue, this being the tax deducted from the individual at source.

For a form to set up a covenant, please send a stamped addressed envelope to David Grant, 18 Pentreath Avenue, Guildford, Surrey GU2 5TA.

Gift Aid
If you don’t want to commit to regular payments to Ovacome, Gift Aid is a way for us to reclaim from the Inland Revenue the tax paid on a single donation. The donation must be a minimum of £250 and accompanied by a Gift Aid Certificate. A gift of £250 with a Gift Aid Certificate from a basic rate taxpayer would allow Ovacome to claim a further £83 from the Inland Revenue.

Again, if you would like a Gift Aid Certificate, please send an s.a.e. to David at the above address.

Charities Aid Foundation
The CAF Charity Account works like a bank account. Individuals can open an account, pay money into that account via covenant, Gift Aid, or Give As You Earn and the CAF reclaims the tax paid at 25% and adds that into the account. Individuals get a charity card and a cheque book, so they can make donations (gross of tax) to the charity or charities of their choice.

For more details contact CAF at Kings Hill, West Malling, Kent ME19 4TA, telephone 01732 520000.

Give As You Earn
Many companies operate a payroll giving scheme. The employer deducts money from an employee’s pay and passes it to an agency, who in turn passes the money to the charity of your choice, before PAYE tax is deducted. The donation is therefore paid gross. The maximum an individual can give in one year is £900.

Contact your employer for an application form if they operate this scheme.

A report published jointly by the ICRF and the Office for National Statistics in June stated that the proportion of cancer patients surviving for five years after diagnosis (with the 15 most common cancers) improved from 25% in 1981 to 30% in1989.

Commenting on the figures, Dr Gillian Reeves (ICRF Unit and researcher on the project) said: "About 200,000 people in England and Wales were diagnosed with cancer in 1989 and 60,000 survived for at least five years – about 10,000 more than would have survived in 198. Simply diagnosing cancer earlier in its development can by itself create the appearance of increased survival. However, it looks as if the cancers showing increased survival are those where we know that earlier detection or better treatment can improve prognosis."

Dr Paul Nurse, Director-General of ICRF added: "These figures identify positive trends with some of the more common cancers which probably reflect better detection and treatment, and improvements in the way cancer services are delivered. With continued research into cancer we hope to see further improvements in the future."

Professor Karol Sikora, clinical consultant to the ICRF said: "These figures are very encouraging indeed and represent a huge effort by nurses, doctors and other staff in the NHS. Cancer treatment will get better as we go into the new millennium, but we must ensure that every cancer patient gets the best possible care."

Dr Mike Quinn, Director of the National Cancer Registration Bureau at ONS said "These results are based on over 370,000 people diagnosed with cancer in 1981 and 1989 and represent the most reliable national estimates of cancer survival available."

Although the report covers 15 of the most common cancers (including ovarian cancer) it is still very encouraging indeed to see that the survival rate for ovarian cancer sufferers has increased by 5.3%. It is hoped that this rate will continue to rise following the parliamentary briefing that took place in February. As mentioned in the summer: "The parliamentary briefing brought together top ovarian cancer consultants and MPs who were urged to lobby ministers to review the latest evidence on the best treatment for ovarian cancer. 120 MPs signed an early-day motion calling for ‘equitable care for all women with ovarian cancer’, and national and local action to give women equal access to optimal treatment around the country is expected to continue. This House of Commons briefing served as a catalyst for the development of a new all-party group on cancer, which is charged with looking at the wide range of issues relating to cancer services and treatments. In the first session of the group, consistent and optimal treatment standards for ovarian cancer were voiced. Ovacome was invited to attend all these sessions, and will continue to be."

Another factor that will hopefully encourage better survival rates for ovarian cancer is the recent result from a European/Canadian clinical trial of Taxol. This new data has shown that Taxol offers a worthwhile survival advantage when used as first-line treatment for advanced disease. A Medical Consensus Group set up in the UK reviewed the available data and unanimously agreed that, given the weight of evidence, a fundamental change in the treatment of ovarian cancer is in order and that Taxol should become the new "gold standard" for the majority of patients.

But, as the graph above shows, we are still falling behind the USA (and other European countries), owing to many factors. In an article that appeared in The Sun in June, Professor Gordon McVie stated that Britain has not invested enough money in specialist doctors, and treatment varies from region to region. For example in this country a radiotherapist would have to treat up to 2,000 patients at any one time, whereas one in the US would deal with only one-third of that amount. Also, different health authorities may fund certain types of treatment while others may not. Different hospitals within the same health authority may even offer different treatments depending on financial priorities or whether the hospital employs a cancer specialist. I am sure that following the development of the All Party Working Group on Cancer (as mentioned above) the situation will continue to improve.

The raising awareness team has had a busy few months spreading the word. Our target this year is to ensure that all women diagnosed with ovarian cancer are told about Ovacome and how to contact us. We aim to do this in several ways and we need lots of help to make it happen.

Adopt a hospital
We want as many Ovacome members as possible to "adopt" their hospital. This means they become the nominated Ovacome contact for their hospital, and with the raising awareness folders provided ensure that the places where ovarian cancer patients are treated have posters, membership details and newsletters. We suggest that members visit their departments every three months to ensure that posters are still visible, newsletters are delivered and stock of Ovacome literature is replenished. The role can be developed further to include talking to ward staff or even doing presentations. Nerve racking –yes, worthwhile – definitely, but optional nonetheless. We started the scheme at the AGM, and had a wonderful response: so far we have adopted nearly 50 hospitals. There are many more out there so if you feel this is the job for you, please write to Alex at the Ovacome office, telling us which hospitals you would be able to adopt. (We only need to cover hospitals treating women with ovarian cancer.) If the hospital has not already been adopted. we will send you a raising awareness folder, with all the goodies you need to get you going.

Exhibition stands
As the word spreads we are being invited to exhibit at many medical and nursing study days. These are an ideal forum for raising Ovacome’s profile. There are many other health-related exhibitions where we could have a presence, but we need volunteers to set them up and man them. If you feel you could help with this, please contact Alex in the office, saying how far you would be prepared to travel, and we will contact you if any exhibitions come up. If you hear of any events you feel Ovacome should attend please let us know.

I know many of you feel strongly about raising the profile of ovarian cancer and Ovacome. I hope you will be able to help with the adopt a hospital scheme, and the exhibitions. If you would like to become involved in the raising awareness task force, or have any comments or suggestions to put to the group I would love to hear from you.
Louise Bayne
Task Force Leader

Getting Well Again
By Carl and Stephanie Simonton

Getting Well Again was among the first books I read following my own diagnosis of ovarian cancer in December 1996. Conditioned during my lifetime to swallowing the medicine as prescribed by doctors, I had never considered how I might participate in my own recovery from illness. Such was the impact of this book on me, that I did not hesitate to select it as a suitable title for a book review.

The authors are practitioners at the Cancer Counselling and Research Centre at Fort Worth in Texas. Their book describes a self-help programme of psychological and practical techniques, based on the approach used at Fort Worth, which aims to show cancer patients how they can participate in getting well again and live a rewarding and fulfilling life.

They believe that emotional and mental states play a significant role, both in susceptibility to, and recovery from, cancer. Cancer is described as a problem of the whole person, not just an illness of the body. It follows that effective treatment must focus on the total human and not the disease alone. Emphasis is placed on participation in getting well again, i.e. what you, the patient, can do, in conjunction with orthodox medical treatment, to regain your health.

Part 1, The Mind and Cancer, explains the theories on which the physiological approach to cancer treatment is based. Patients are encouraged to develop positive expectations and a belief that the disease can be influenced. A fascinating chapter explores the links between an individual’s reaction to stress, suppression of the immune system, and subsequent susceptibility to illness, especially cancer.

Pathways to Health then describes a programme of self-help techniques designed to reinforce orthodox medical treatment and foster the image of such treatment as an ally and friend. Techniques such as relaxation and visualisation are important elements of the programme and detailed instructions are included. Much is made of the mental imagery process. During a period of relaxation, patients are encouraged to mentally picture or visualise the desired outcome. A number of case studies illustrate the power of effective mental imagery. The programme asks patients to set personal goals to help focus their reasons for living and establish priorities. Specific suggestions are included to ensure that a balance of physical, intellectual and emotional needs are addressed.

The final chapter describes how to build an important support system. Several coping strategies are featured, including a suggestion that the patient be rewarded for health, rather than illness.

Empowered by this knowledge, patients who have participated in their own recovery often emerge from the experience of confronting life-threatening illness with a sense of control over life which was not apparent before illness.

An inspirational read and a valuable handbook to accompany patients and supporters through the cancer journey.
Linda
Guildford

My Christmas Story
In December 1997 I went in to hospital for my third laparoscopy. I had suffered with endometriosis for a number of years and every month was becoming a living nightmare. After investigation, my gynaecologist informed me that there were "chocolate cysts" around the ovaries, but I was reassured that everything was OK.
On 16 December 1997 I went back for my results assuming all would be well. Little did I know that my whole world was about to fall apart through the Christmas rush, trees and lights. I was told I had ovarian cancer. On 22 December I had both ovaries removed. My first thought was that I was not going to be able to have my own biological children. Ovarian cancer at 32, surely this was not possible?
Now, six months on, I have completed my chemotherapy and survived it. I live one day at a time and am so grateful for the wonderful things that I have in my life, my partner Leo, my mother, family and friends.
I try to remain positive and happy and constantly remind myself to "keep the faith". Soon I hope to have IVF treatment and hopefully my star will be born.
Lisa Beardow
London

Horsham Support Group
Some people think a cancer support group a sad place to visit. If so, they should visit the Horsham Support Group where their fears will soon be dispelled. Although only in a church hall it has a warm and loving atmosphere created by a regular nucleus of caring members. The Group is open to anyone with cancer and their carers or friends.
The meeting consists of everyone’s own introduction with as much or as little information as one wants to give. Relaxation and visualisation follow, with a healing session by regular healers which enables one to build up a relationship, with a personal chat if desired. Then tea and biscuits and a general natter.

There is a library of books and tapes which you can borrow, and leaflets on many subjects connected with cancer. There is always someone who has been where you are and who can offer advice, support and suggestions or just listen. I find it often helps just to talk to someone who knows how you feel. Then, of course, there is the laughter – you need to pay a visit to believe that!
Liz Fullick
Day Patient, Worthing, Sussex

Sharing my story
I have just received my second copy of Ovacome’s newsletter and found it a very interesting read. It also helps me to feel that I am not alone with my problems.

In January 1997 I started to bleed heavily and was referred to the gynae clinic at the local hospital. I had a scan and a hysteroscopy and was diagnosed with fibroids. Following both procedures I was informed that they could only see one ovary! I was offered a place on the waiting list for a hysterectomy. The bleeding did not stop and the small golfball-sized lump in my womb grew to the size of a melon at an alarming rate. The doctors were well aware that during the previous April I had a partial mastectomy on my left breast (and that I had had my right breast removed 18 years earlier) and that I was taking tamoxifen. I myself feel that this should have rung some alarm bells, but despite this my operation was scheduled for the end of July. After my second emergency admission to hospital my husband decided enough was enough and insisted that they bring the operation forward. I then had my hysterectomy at the end of May. Immediately after this my GP and I were assured that all was well, but three days later the doctors at the hospital called me into his office and told me that I was in fact suffering from three types of cancer (high grade endometrial stromal sarcoma, cancer of the uterus and carcinoma of the ovary). According to the report the first two are described in relation to tamoxifen therapy.

I still feel very angry that I had to wait for so long for the operation, given the symptoms and the circumstances. The cancer has now spread to my lungs and I am currently undergoing chemotherapy again. I later learned from the genetic clinic that, because of my breast cancers, my risk of ovarian cancer was very high and even I know that in some cases tamoxifen can cause cancer.
Kate Brend
Oxford

First I would like to say thank you for the Ovacome newsletter. It is so good to be able to read about everything and everybody who is concerned with ovarian cancer. It is so difficult to get information from other sources.

I have not written before as I possibly had a court case for medical negligence outstanding, but this has now been resolved with an out-of-court settlement.

I was ?5 years old and in good health. Most weekends I went out with a rambling club and walked 10-12 miles. In early October 1994 I awoke with severe pains in my stomach and was in such pain that I collapsed. My stomach was so bloated I looked at least six months pregnant. My husband took me to our local hospital, St Helier in Carshalton, as it is only five minutes away by car. I was examined and had x-rays to see if it was a blocked bowel or appendicitis. As it wasn’t and I was still in a great deal of pain I was admitted to a surgical ward. The surgeon decided that I had gallstones and the registrar decided I had a virus.

I had an ultrasound scan and the radiologist told me that I had large ovarian cysts that would need urgent referral to a gynaecologist.

When I saw the surgeon he told me that it was good news. I did not have gallstones so it must be a virus. I asked about the ovarian cysts and he just laughed, told me that everyone has them and that they were nothing to worry about.

I was still in pain and my stomach was very bloated, but I presumed that the consultant knew what he was talking about. I was then discharged and my GP was told that I had a virus.

About six weeks later I again collapsed whilst out shopping and was again taken to St Helier. I was admitted under the same surgeon. He still did nothing and some days later decided that I should be referred to the gynaecologist. As soon as I saw the gynae consultant he told me that I needed an urgent hysterectomy. The next day he performed a hysterectomy and bilateral oopherectomy. The pain had been caused by a burst ovarian cyst. The diagnosis was ovarian cancer and the findings were as follows: "pus was seen leaking from the ovarian cyst and the bowel was adherent to both ovaries. The pathology report showed a 10 x 8.5 x 5 cm moderately differentiated papillary adenocarcinoma of the ovary and the ascitic fluid showed mucinous carcinoma cells. The other ovary had a benign mucinous cystadenoma". (I only have this information as I put in a complaint about the refusal of the surgeons to act upon the first ultrasound.)

I was told that I would need chemotherapy and probably radiotherapy as well. I was later told that the hospital had decided not to give me the chemotherapy and that I did not need radiotherapy either. I was referred to the joint Royal Marsden/St Helier clinic which is held in St Helier Hospital. I had a CT scan at the Royal Marsden and was told the cancer had not spread and was graded 1c.

At no time whilst I was in the hospital was I given any information or advice. I was not referred to a specialist nurse, although I must say that all of the staff in the gynae ward were very supportive and they could not believe that I had been discharged without any treatment on my first admission.

When I was discharged I contacted the Sutton Community Health Council and they helped me to put in a complaint about my treatment. It went to a tribunal in London and the consultant was found to be negligent in not acting on the first ultrasound and not referring me to a gynaecologist. I was then advised to claim compensation from St Helier, and have just received a small out-of-court settlement from them.

Since my original CT scan I had a scan at six months and again at 18 months. I also have CA125 blood tests every six months. I have had no other treatment whatsoever. I have now heard that St Helier is refusing to treat ovarian cancer patients with Taxol.
It seems unbelievable that a large teaching hospital can treat patients in such a way. You think surgeons know what they are talking about – but I now know that I had all the classic symptoms of ovarian cancer – and they were completely ignored. I thought I was lucky that I did not need any further treatment: now I find it is just cost-cutting!

It is nearly four years since my operation, so I count myself lucky to be fit and well, but if taking some medication would enhance my chances of keeping cancer-free then I would like to know about it.

Thanks to all who telephoned or wrote or after my last article. I continue in the best of health and thoroughly enjoyed the summer, indulging in my favourite hobby, gardening. I harvested a bumper crop of potatoes, beans are growing profusely, and borders and tubs are a riot of colour.

I find gardening therapeutic, but tend to get carried away with the physical tasks. But my stone Buddha sits reflectively behind my water feature, the seat along-side reminding me constantly of the need for quiet contemplation to give body, mind and spirit a chance to be still and regenerate.

However we spend our time, it is all too easy to get caught up in a physically demanding daily round with too little time to regard, as sacred, a little time for ourselves. Yet, this is so important. When we overtax the body physically, we are doing our immune system no favours and a quiet, focused mind is better able to nurture a positive spirit and a will to live.

Relaxation
Serious illness strains body, mind and spirit and we often have to re-learn to relax to achieve a good night’s sleep, live fully in the present and rediscover a sense of the future. There are excellent self-help relaxation tapes but we don’t need to go to unnecessary expense. Deep breathing is the simplest and easiest way to bring about a sense of calm and relaxation.

So, find a quiet spot indoors or in the garden and make yourself comfortable. Breathe through the nose, inhaling evenly and deeply slowly filling the lungs and abdomen. Exhale fully before breathing in again. Breathing in through alternate nostrils for four breaths, and on the fifth through both nostrils, helps focus the mind, oxygenate the blood and balance energy. Eastern cultures place great store by correct breathing for good health, inner peace and well-being and it is worth investigating Chinese and Indian techniques for yourself.

Relaxation can be achieved sitting or lying, remembering to breathe deeply and evenly, focusing on parts of the body, tensing and letting go until each part feels warm and heavy. Begin with the toes on one side and work up the foot, leg and thigh. Move on to the fingers, hands, wrist, lower arm, elbow and upper arm. Repeat on the other side. Next, tighten the buttocks and let go, moving up the back to the shoulders tightening and letting go. Screw up the face tightly and then relax the muscles completely. Finally, feel the whole body let go, feeling warm and heavy, sinking into the chair or floor. If you find consciously relaxing unfamiliar, try specially prepared tapes which take you through the process; soft music usually accompanies the voice and supports relaxation. But beware! You are likely to fall asleep before you reach the end.

Meditation
This deeper form of relaxation is worth pursuing. It stills the mind, putting you in touch with your higher self. Meditation teachers Eddie and Debbie Shapiro say: "When we practise sitting or walking meditation, allowing the mind to become quiet, receptive and still, we go beyond the chatter that fills our days and creates chaos and fear in our minds. When you meditate you connect with the essence of life, find the self beyond the ego. Here you can develop an inner awareness of the mind as it really is, beneath the superficiality."

Meditation is practised in many cultures, especially Eastern religions and philosophies. Whatever the route, the purpose is a deep meditative state which moves the body from everyday beta-rhythms to longer alpha rhythms, when the body can most readily recuperate. The easiest approach is to sit with your back well supported and eyes closed, and concentrate on a single word, image, sound or candle flame – what Eastern religions call a mantra. Move into deep relaxation as you empty the mind of the material and reach a peaceful and spiritual state in which the ego loses its grip on consciousness. If thoughts nibble away at your stillness, let them drift away leaving you unaware of your physical body and in a state of deep peace, tranquillity and free-floating absolute calm. This can be very hard to achieve but with patience and practice we can learn how to meditate. Begin with 10 minutes three times a day and gradually extend to 20 minutes, then half an hour. A useful book for beginners is How to Meditate by Lawrence LeShan.

Dr. Ainslie Meares, a well-known Australian psychiatrist who worked with cancer patients, recommended three hours of meditation daily. I'm not sure I have achieved such dedication but I’m working on it. For the moment, a quiet interlude with my Buddha and the silver sound of water falling over pebbles will do very nicely. Stay cool!

To learn more about the Gerson diet contact: The Gerson Support Group, Lesley Pearce, 1 Park Rise Close, Leatherhead, Surrey KT22 7JA, tel: 01372 386049, or Dr. Charles Innes, The Health Partnership, Kensington, London, tel: 0171 589 6414. I also have information, tel: 01472 752455.

Following last issue’s With Complements column, Ovacome received a letter from Dr Richard Osborne, a medical oncologist at Poole Cancer Centre in Dorset. Dr Osborne has been involved with Ovacome on a number of projects, including our video, Ovarian Cancer: What to Expect. His letter concerned the incorporation of special diets and hyperthermic and intraperitoneal chemo-therapy into the treatment ovarian cancer. In the interests of Ovacome's open forum policy, which welcomes comments from all members, we've summarised the points made by Dr Osborne.

He writes: "Last issue‘s With Complements article will inevitably cause other women in a similar situation to ask:

• Can the Gerson diet (or other diets) have any effect on my cancer?
• Should I be receiving hyperthermia and intraperitoneal chemotherapy?
• Why has my doctor not discussed these options with me?"

About Diets
Dr Osborne writes: "Although a low fat, high fibre, vitamin-adequate diet is known to reduce the risk of developing some cancers, there is no scientific evidence that any diet can cause cancer to go away, or can keep it away after remission has been achieved with surgery, radiotherapy or chemotherapy.

The best medical advice, therefore, would be to follow a ‘normal, healthy diet’ such as the one recently published by COMA (Committee on Medical Aspects of Food and Nutrition Policy. Their cancer-prevention regimen, Nutritional Aspects of the Development of Cancer, recommends a diet rich in cereals, fruits and vegetables, an increase in dietary fibre, and a reduction of intake of red and processed meats (Editor‘s Note: you can obtain a summary of the report through Alex at the Ovacome office).

The Latest on IP Hyperthermia
Dr Osborne writes: "There is good evidence from test-tube and animal experiments that cancer cells are more susceptible at temperatures higher than normal body heat. There are also encouraging results from studies of intraperitoneal (IP) chemotherapy in ovarian cancer. But, given that these two methods, when combined, can be cumbersome and potentially painful, we as doctors must ask whether thia approach really offers our patients any benefits over conventional therapy.

"To date the majority of studies in ovarian cancer have simply defined the feasibility and toxicity of IP hyperthermic chemotherapy with platinum drugs, and at present there is no evidence that simple, well tolerated drugs such as carboplatin should be displaced by more aggressive approaches such as IP hyperthermic chemotherapy.

"Having said that, oncologists remain optimistic about IP therapy. At present, even when a high-quality remission is achieved, recurrence can occur due to residual microscopic seedlings which have evaded the effects of the conventional intravenous anti-cancer drugs. IP treatment is already considered potentially useful as ‘consolidation‘ in these situations, in an attempt to knock out remaining disease and thereby increase the cure rate. Randomised controlled trials of IP antibody-targeted radiotherapy as consolidation are in progress in the UK, and many oncologists feel that the best treatment for their patients is to offer them access to these trials. The results of one such trial were reported at this year‘s key international oncology meeting in Orlando, Florida. The study offered promising results from IP hyperthermic chemotherapy consolidation in a small number of women in remission after first-line ovarian cancer treatment. However, despite these results, it must be stressed that these outcomes required further confirmation from other randomised studies before this new treatment can be confidently be adopted as a true advance."

Ovacome understands that the treatment decisions you make are as individual as you are. And for Diane Chapman, following a careful diet and pursuing an array of complementary and experimental treatments have made a tremendous difference in the way in which she’s faced her journey and in the kind of inspirational support she’s been able to offer to so many members.

Do you have any comments you’d like to share regarding your experiences with special diets and/or IP? Send your letters to the Editor at the usual Ovacome address.

If I was asked to list the main nutritional issues amongst women with gynaecological cancer it would have to include the use of vitamin and mineral supplements. So, in this issue, I answer some of the most commonly asked questions and cover a couple of other relevant topics such as calcium, vitamin B6 and vitamin C.

Vitamin and mineral supplements are a relatively new concept in healthcare, yet in Britain we spend over £300 million each year on these products. An enormous industry: but do we need such supplements?

People take vitamin and mineral supplements for a whole host of reasons; some to optimise well being, others to stimulate the immune system or perhaps to "kill off" the cancer cells. Such examples clearly demonstrate that people take supplements for their possible "drug" effect rather than to meet nutritional requirements.

The recommended level of intake for each nutrient is set by a panel of experts after careful consideration of current research. These are referred to as recommended daily amounts (RDA). You will often see the content of vitamin and mineral supplements expressed in actual amounts and the percentage of the RDA. It is often more meaningful to look at the percentage value rather than the specific levels.

So, are there any vitamin and/or mineral supplements which will reduce my risk of recurrence?

At present there is no evidence that taking extra vitamins will reduce the chance of cancer recurring. In fact, exceptionally high doses, well above recommended daily intake, may be harmful and have unpleasant side effects. For example, high doses of vitamin C (more than
2-3 g/day) can cause diarrhoea and large amounts of beta carotene can result in skin discoloration (orange!). In general, it is advisable not to take large doses of vitamins or minerals without first speaking to a dietician who can check the vitamin and mineral content of your diet.

Do I need vitamin C to boost my immune system?
Whilst most life forms are able to make their own vitamin C (ascorbic acid), humans, guinea-pigs, an Indian fruit-eating bat and certain birds have to rely on daily dietary sources. To us they are "essential" vitamins, in other words, we need adequate amounts from our diet daily as we are unable to store it in our body.

Of all the vitamins, ascorbic acid is probably the most controversial because it is claimed to have wide-ranging effects such as protection from cancer, heart disease and even the common cold. Unfortunately, whilst many may take vitamin C, the evidence to support its benefits, including its effect on the immune system, is lacking in trials on human subjects. In most cases, you can easily achieve a more than adequate intake of vitamin C from fruit and vegetables. If you are following a low- or reduced-fibre diet, you can still meet your vitamin C requirements by having a daily glass of fruit juice.

Why is there concern about vitamin B6 supplements?
There is evidence that regular high doses of vitamin B6 may have toxic side effects such as nerve problems leading to clumsiness, numbness and pins and needles. General advice is to limit daily intakes of vitamin B6 from food supplements to 10 mg, unless acting on professional advice.

The most popular reason for taking large supplements is to help relieve the symptoms of pre-menstrual syndrome (PMS) and menopause. Whilst some women report that it does help, there are very few well conducted scientific studies to support this. PMS and menopausal symptoms may be helped by a range of lifestyle changes and it is worth discussing these issues with a dietician or clinical nurse specialist.

If I am feeling tired, should I be taking an iron supplement?
One of the symptoms of low levels of iron in the blood (anaemia) is tiredness. This is because the iron helps to transport oxygen around the body and if we have insufficient we are unable to provide the oxygen our tissues need. However, there are many other causes of tiredness, so it is always a good idea to get your blood level checked before you start taking iron supplements. You can have this done at your GP practice or by your hospital doctor.

Most of us can meet our iron requirements from our diet. Good sources are red meats and offal. The absorption of iron from dark green vegetables, cereals, pulses, and beans can be inhibited by factors present in the food or meal. However, vitamin C can enhance the availability of iron from these sources so have a glass of fruit juice or fruit with the meal.

I’ve heard that the level of selenium in our foods is decreasing and therefore we are all at risk of selenium deficiency.

The amount of selenium in our diet varies according to the selenium content of the soil from which the foods are derived, so adult intakes of selenium can vary greatly. In China dietary intakes range from 11 to 5000 mg/day, at which extremes deficiency and toxicity syndromes occur (according to Garrow JS, James WPT. Human Nutrition and Dietetics, 1993, Churchill Livingstone). However, in the UK the range of intake is much less extreme, causing neither deficiency nor toxicity problems.

Is it worth taking a calcium supplement to help prevent osteoporosis?

Osteoporosis is characterised by reduced bone density, leading to a deterioration of bone tissue and an increase in fracture risk. A number of dietary and non-dietary factors may contribute to its development. As the most important mineral constituent of the skeleton is calcium, some interest has been shown in calcium intake and bone density, particularly in women. Whilst there is debate whether additional calcium in the diet will actually improve bone density and thus reduce the risk of osteoporosis, it is prudent to have a good dietary intake of calcium. Calcium can be obtained from milk, milk products (low-fat varieties are still a good source of calcium), fish which contains bones such as sardines, pilchards, tinned salmon and to a lesser extent vegetables and flour. A useful information booklet on calcium and dietary sources is currently being updated by the National Dairy Council and will be available from October this year (Our Daily Calcium, National Dairy Council, 5-7 John Princes Street, London W1M 0AP: Telephone 0171 499 7822).

I’ve heard beta carotene is meant to be good for you
There has been a great deal of interest in this nutrient and its possible benefit in the prevention of cancer. However, a recent study has shown that beta carotene supplements produced more lung cancer in smokers than those not taking the supplement. Whilst this is not related to gynaecological cancers, it does illustrate that purified nutritional supplements are not necessarily innocuous and may be harmful.

So, should I be taking vitamin and mineral supplements?
If you have a good appetite and are eating well it is unlikely that you need extra vitamins and minerals in tablet form; in fact getting vitamins and minerals from food is by far the best way of taking them. Vitamins naturally present in food are "balanced", interacting with other nutrients and constituents in the food which are absent in vitamin and mineral supplements. However, in certain circumstances, if your intake is poor or restricted in fruit and vegetables, then you may need to take a one-a-day multivitamin and mineral supplement such as Forceval (which is prescribeable), Centrum, Sanatogen Gold or any others which contain 100% of the RDA or RNI. These types of multi supplements contain "safe" levels of vitamins and minerals and the nutrients are able to interact and work most effectively in combination.

In general, apart from vitamin C, it is not advisable to take vitamins and mineral supplements separately: not only are they expensive but you could be taking double doses of the same nutrient, perhaps at toxic levels. However, if you are taking different vitamins and minerals and wish to continue doing so, it is always a good idea to check with a dietician who will be able to highlight if any levels may cause harm.

Next issue I will be looking at alternative and complementary dietary therapies.

Jane Power
Senior Dietician

Supplement	Needed for	Main Sources
VITAMINS
Vitamin A (beta-carotene)	Eye function, bone and tooth formation, growth and tissue repair	Oily fish, fish oils, butter, margarine, liver, cheese, carrots, yellow and green vegetables
Vitamin B1 (thiamine)	Used in the release of energy from carbohydrates (starchy foods)	Whole grains, brown rice, pulses, fruit and vegetables, meat, fish, eggs, milk
Vitamin B2 (riboflavin)	Helps cells to use oxygen	Flour, milk, eggs, green vegetables, meat, yeast extracts
Vitamin B6 (pyridoxine)	Enzyme function (specific chemical reactions)	Whole grains, fish, meat, pulses
Vitamin B12	All cells	Animal products
Nicotinic acid (niacin)	Helps cells use oxygen	Meat, fish, pulses, yeast, meat extracts
Folate	Making red cells in the blood	Liver, green leafy vegetables, pulses
Vitamin C (ascorbic acid)	Healthy cells, wound healing	Fruit and fruit juices, green vegetables, potatoes
Vitamin D	Absorption of nutrients such as calcium and phosphate, healthy bones	Oily fish, fish liver oils, butter, margarine, milk, eggs
Vitamin E	Healthy cells and cell walls	Vegetable oils, eggs, butter
MINERALS
Iron	Red blood cells to carry oxygen	Liver, red meat, fish, eggs, green leafy vegetables
Calcium	Strong bones and teeth, nerve and muscle function, blood clotting	Milk, milk products, tinned fish, e.g. pilchards and sardines
Zinc	Cell function and growth, woundhealing	Meat, pulses, whole grains
Magnesium	Many body functions	Cereals, vegetables, meats, fish, dairy products

As a follow-up, to Diane Chapman’s report in the newsletter more than a year ago, about American research which has identified cathechins in green tea as potentially cancer-inhibiting chemicals, I have come across another interesting report which adds another interesting piece to the puzzle.

Investigators at the Case Western Reserve University School of Medicine in Cleveland, Ohio, tested the cathechins, epigallocathechin-3-gallate (EGCG), on cancerous human and mouse cells of the skin, lymph system and prostate, as well as on normal skin cells.

In the test tube, EGCG, led to "programmed" cell death in the cancer cells but left the healthy cells unharmed, according to a report in the US Journal of the National Cancer Institute. Professor Hasan Mukhtar, senior author of the report, said, "We found that this particular compound, which is present in the amount of about 200 milligrams in one cup of green tea, can kill a variety of cancer cells."

It is thought likely that this compound conveys a message to cancer cells through a highly ordered and well regulated signal transduction pathway which says, "You must commit suicide or I am going to kill you." The cells then decide that instead of being murdered, they will commit suicide, Professor Mukhtar reports.

The next step, the investigation suggests, is to evaluate the cancer preventative properties of green tea in human trials.

The tea provides a very acceptable substitute for our usual tea and coffee and can be purchased from: Imperial Teas of Lincoln, 26 Steep Hill, Lincoln, telephone, 01522 560008. There is a discount price for Ovacome members of £3.25 for 4 oz (including post and packing).
Mary Shenton
Scotland

As I mentioned in my Summer letter I have been attending conferences that involve patient advocacy groups and treatment funding etc. Although Ovacome is not an advocacy group we have some very determined and knowledgeable members. I felt inspired by some of the letters I received and am covering some snippets from them below. I am sure you will agree that these ladies deserve recognition for what they have achieved. They are an inspiration to us all, and I would like to thank them all on behalf of Ovacome. Copies of the articles can be obtained from the Editor.

Rachel Solemani (London) was horrified by Understanding clinical trials in the Spring newsletter and feels that progress with AIDS treatment is proof enough that, unless we make more noise, more resources will not be poured into ovarian cancer treatment. She says "the support of Ovacome members has been invaluable to me in the year since my diagnosis. I know the committee are working terribly hard to give the disease a higher profile. This is fantastic, but as I feel a new self emerging after almost a year of grim treatments, it’s no longer a ladylike person here, it’s an angry one. We need more resources for research and quickly. I would like to know what other women think? Perhaps we could use the newsletter to exchange ideas?"

Susan Harrison has been liaising with the South Essex Health Authority, registering her strong opposition to proposed cuts, particularly with regard to ovarian cancer treatment and Taxol. She said "Little money is spent on ovarian cancer as it is, when compared with breast or cervical cancer, there is no screening and no health education, so many sufferers are in the advanced stage when diagnosed. You now propose to limit the relatively small amount spent on treatment. I find it hard to express the upset that reading your proposals has caused me and, I assume, any person suffering from ovarian cancer. I write on behalf of all ovarian cancer sufferers in Essex at a time when the Government is making proposals for equality of treatment country wide."

She wrote again in February to report that the proposal had been withdrawn, obviously very good news for all in South Essex.

Barbara Mackay (Edinburgh) wrote with copies of articles from the Scottish press criticising the care of ovarian cancer patients in Scotland and stating that only 29% of women were alive five years after diagnosis and that only nine of 26 hospitals followed the recommendation that patients with suspected ovarian cancer should be referred instantly to a specialist gynaecologist. Sixteen had implemented the recommendation that, after surgery, patients should be referred to a combined gynaecology and oncology unit.

Barbara was not in sympathy with these articles and felt impelled to tell the paper her personal story. The care she received was exceptional and her operation and follow-up treatment were impeccable. She said "I would like to reassure ovarian cancer patients that diagnosis and care here are excellent. It is a devastating diagnosis, one of the worst and now well known as the ‘silent killer’: let it be no more so! We need accurate publicity not alarmist about the varying symptoms of this cancer. Let us hope that the ovary will be of as much media interest as the breast."

Mary Shenton (a Fone Friend from Scotland) wrote to me about the same articles. She had also felt impelled to reply, and congratulated the paper for the "quite superb front-page article, in which you rightly called ovarian cancer the ‘silent killer’. On the surface at least, the attitude is as you describe, but as a patient suffering from this condition, I have nothing but the highest praise and gratitude for the treatment I received. The care, consideration and above all support which has been offered and accepted over the last 20 months has been outstanding. Having been referred to the Borders General Hospital, I was fortunate that I was seen by a consultant gynaecologist who moved heaven and earth on my behalf to such an extent that I received the surgical treatment required within three days. I was then referred by him to the Western General Hospital where the same standards would appear to apply since I was put on to a course of chemotherapy almost at once. I have since been reviewed, scanned and above all considered and advised at all levels to a degree which is quite outstanding".

She went on to talk about Ovacome and described our main aims and stated that it was her wish to raise awareness of both the condition and the charity throughout Scotland. She has written to 24 NHS trusts enclosing a brief questionnaire asking for details of a gynaecologist/oncologist in their area with the intention of sending them information on Ovacome. So far she has received one response (Edinburgh Royal Infirmary) and has asked that they receive regular literature from us so that they can help to raise the profile of Ovacome.

As cancer treatments become more successful, the research is now shifting not only to focus on treatment for actual survival, but also to address improving the choices available to long-term survivors‘ overall quality of life. Previously, I covered the treatments commonly used in ovarian cancer which can affect fertility, sometimes permanently. Now I focus on one such research project which aims to offer some degree of hope to women who experience a potential or actual loss of fertility induced by treatment.

Ovarian tissue biopsy followed by cryopreservation (freezing), although still in the research stage, offers a degree of hope and maybe a choice for a woman with ovarian cancer who is keen to preserve all potential fertility options. However, it is important to understand that this new and exciting technique offers no guarantee of a successful outcome in humans. It may be argued that this research study may offer false hope, and this is an important consideration, and one which each individual has to make. For another individual, that potential hope may be extremely important.

For some women, potential or actual loss of fertility can be as much of a shock and as painful to accept as the cancer diagnosis itself. Acknowledging the reality of this situation, and exploring all the alternative options, and the known benefits, advantages and actual or potential risks of each, is the first step towards dealing with the loss.

What are the aims of this research project?
The aim of ovarian tissue biopsy followed by cryopreservation is to develop the technique to the stage where it offers an alternative assisted fertility choice to women with treatment-induced infertility. As yet, however, it has not been demonstrated whether this procedure will be safe in women with ovarian cancer.

It involves removing a small piece of the outer cortex of ovarian tissue (approximately half the size of a thumbnail) before cancer treatment starts, and carefully freezing it. In this way, it may be possible to save some of the immature oocytes (eggs), before they are potentially damaged by the treatment. This technique is new and untried in humans and may not reach a satisfactory conclusion. The hope however remains, and research continues with the aim of providing ovarian tissue that is safe to use. The saved ovarian tissue could be thawed and cultured in the lab and the immature eggs grown to a state of maturity. They could then be fertilised and either replaced into the woman’s womb or used for surrogacy.

So far, technology is available to freeze and store the ovarian tissue at a suitable temperature for the eggs to survive. However, there is no guarantee that the eggs will survive the thawing process, or that the tissue will then be safe to use. The research has not yet advanced to the stage where the woman’s egg can be stimulated to a stage of maturity where it can be fertilised with the sperm. This experimental technique has been tried successfully in animals and normal offspring have been born as a result. As yet, no human pregnancies have resulted from this research. In animals, ovarian tissue has been thawed and replaced, functioning normally, but it is too early to know if the technique will be possible or safe in women with ovarian cancer.

Criteria for ovarian tissue cryopreservation
As this is research, the woman needs firstly to understand that she is agreeing to be involved in an experimental technique, and is consenting to this independently of any other ovarian cancer treatment. Participation is entirely voluntary. This procedure will not effect the woman’s cancer diagnosis, prognosis or the effects of cancer treatment.

The woman should have the opportunity to discuss the implications of the storage of ovarian tissue with the oncology team treating her, the fertility team involved in the project and an independent counsellor if she chooses. She is also free to withdraw from the study at any time, and this will not jeopardise the course of her cancer treatment. Her involvement and any data from the study remain strictly confidential; only researchers have access.

Most centres offering women this opportunity are not including anyone over the age of 35. However, this may change if and when there are developments and progress, which could take from five to 10 years. As with all potential new developments in the field of assisted conception, these remarkable possibilities stimulate wide-ranging discussion as to the ethical and social dilemmas and safety of new techniques.

Consenting to the procedure
If a woman is consenting as part of cancer treatment to undergo a laparotomy (major abdominal incision) or laparoscopy, she may be able to consent to have the piece of ovarian tissue taken at the same time. Taking ovarian tissue during surgery is simple and quick. However, as with all operations there are potential minor risks from the general anaesthetic, infection and, very rarely, damage to other pelvic organs and haemorrhage.

Although laparoscopy is a minor and safe procedure, occasionally it is not technically possible to obtain the ovarian tissue biopsy through a small incision. Therefore, the woman usually needs to consent to a possible laparotomy in case this is necessitated during surgery. This, however rare, is an important consideration, especially if the recovery period is longer than originally anticipated and chemotherapy delayed.

Potential alterations to body image due to surgical scars (however small) also need to be considered, especially in women who would otherwise be undergoing chemotherapy alone, and the surgical procedure is being carried out as part of research which offers no guarantee of success.

If the cancer treatment plan involves chemotherapy before or instead of surgery, then laparoscopy to remove the piece of ovarian tissue will be consented to in addition to the treatment. This will involve assessment by a gynaecologist and an anaesthetist, to establish if the woman is medically fit for a general anaesthetic and surgery. When chemotherapy is the only cancer treatment, an additional surgical procedure may delay the start, and needs to be considered carefully with the medical team.

Some but not all centres offering the treatment request that women are screened for hepatitis B and C and HIV before this procedure, because freezing facilities do not allow tissue to be stored separately. HIV testing stimulates wide-ranging discussion as to the ethical and social dilemmas, and women should be carefully counselled before consenting to additional tests.

Only a few centres offer cryo-preservation (see below). However, if the hospital where the woman is being treated does not have the facility, they may have an arrangement with another centre to preserve and store the tissue. As this is research, there is usually no additional cost incurred in the preservation and storage at present.

Once the ovarian tissue is removed, it is stored in a suitable medium, and transported by courier to the embryologist trained to preserve and freeze it for storage. The woman is requested to indicate on the consent form whether, in the event of her death or if she no longer requires the ovarian tissue, it should be disposed of or made available for research purposes.

Are remaining ovarian function and potential fertility options affected?
This procedure is not thought to adversely affect any potential chance of the ovaries producing eggs again after the cancer treatment has finished. The tissue taken is the size of half a thumbnail, less than 5% of the total number of eggs in the ovaries, and is not thought to effect any remaining ovarian function. However, in most women where this is being considered, the ovaries will be removed during the surgery because of an ovarian cancer diagnosis, or the proceeding chemotherapy treatment may effect any remaining function. Ovarian biopsy does not effect the woman’s ability to conceive using ovum donation (if her uterus remains).

The hope remains, as the research continues into ovarian tissue cryopreservation, that one day this will be a real fertility breakthrough and offer a choice to women which is as yet unavailable.
Karen Summerville
Nurse Specialist in Gynaecological Oncology and Associated Women’s Health Care

CENTRES KNOWN TO OFFER OVARIAN CRYOPRESERVATION Bourne Hall Assisted Conception Unit (Cambridge) The Hammersmith Hospital Assisted Conception Unit (London) Leeds General Infirmary Assisted Conception Unit (Leeds) St Batholomew’s Hospital Assisted Conception Unit (London) University College Hospital Assisted Conception Unit (London) Please write to Ovacome if you know of any additional centres offering ovarian cryopreservation.

My wife and I have been receiving your excellent communication for some two years. Sadly Sue died in January 1998, almost three years to the day after she was diagnosed as having "the silent disease".

Sue and I met at a reunion of friends in January 1995. Sue was a widow and I was divorced, we were both in our late 40s. We had known each other for some 35 years. We instantly hit it off and spent the whole evening talking about old times.

At the end of the evening I plucked up the courage to ask if I could come and visit her some time. After some agonising days we actually made contact and arranged to meet on 17 February.

On 15 February, however, Sue phoned to say that her stomach had swollen up and she had been rushed in to hospital for tests. Ovarian cancer (stage 1c) was diagnosed and on 17 February she underwent an oopherectomy. I visited her in the evening and, whilst the operation had gone well, she was very poorly indeed.

Sue was a great fighter and after only a few days she returned home, and I visited her the day after. This was the start of many such visits, all of which were satisfying because each time I saw her she looked that little bit better.

A month passed and the prognosis was looking better and better all the time. Her consultant and surgeon were very pleased with her progress and decided that chemotherapy was needed to complete the job. Sue sailed through the treatment and was improving constantly.

By early April we started talking about my resigning from the bank to look after her full-time and before we knew where we were we decided to get married. This we did on 19 May 1995: a wonderful but very modest wedding with just a few friends.

Our love for each other just grew and grew and we started looking forward to Sue continuing her improvement with only the inconvenience of monthly chemotherapy which she continued to take in her stride. We went on a cruise through the Panama canal into the Caribbean – a truly wonderful experience. Later in the same year we went to Marbella in Spain. The world was our oyster!!

By September the consultant could not find anything wrong with Sue and proclaimed that she appeared to be going in to remission. We were, of course, elated and that Christmas was a true source of celebration and thanking God for saving Sue’s life.

Another holiday in Cyprus followed and then after a CA125 blood test we were told the disastrous news that the marker had gone up from below 50 to a seemingly massive 3500. Our lives again were in fear and under threat.

Monthly hospital visits resumed, as did a new chemotherapy treatment, this time in tablet form. Sue again responded very well and the marker declined. 1996 passed with some disappointment, but again Sue was doing all right. 1997 came and in May we went to a wedding in Malaysia, visited Singapore and Bali, the holiday of a lifetime!! We came home in June tired but feeling great.

In August Sue again felt her tummy swelling up and after a short stay in hospital had 13 pints of fluid taken off. The same thing happened again in September, when 10 pints were taken, and yet again in October.
After this visit it was decided to leave a drain in Sue’s stomach. This proved to be very harmful. After only a few weeks her body was trying to rid itself of this foreign body.

Over Christmas and in to the New Year Sue was constantly sick. Consultants were informed and after a visit from our excellent GP Sue was admitted to hospital again, this time to have the drain removed and to be put on a new regimen of anti-sickness tablets.

The sickness did not stop and we all wondered what was happening. A CT scan was carried out and then the shocking truth was discovered: the disease had spread up the spinal cord and entered into her brain. The chance of this occurring was only 0.5% and so nobody had ever contemplated it.

Nothing could be done. Sue’s reaction was that she wanted to spend her last few days in our lovely home with her family. She died three days later.

Many questions go through our minds constantly. Sue’s children had to come to terms with their mother’s death only five years after losing their father.

For my part, Sue gave me so much pleasure over the last three years and hopefully I too gave her a reason to fight on. Our anguish of losing the battle never seemed real. All the time we thought that Sue would come though – we had so much to live for and yet it was all in vain. Sue never gave up hope to her dying day: now we that remain have to pick up the pieces. As a carer you feel that you are coping, the love for your partner sees you through. You do not realise what is happening to you. Such turmoil.

But life must go on. We must be positive and seek new beginnings.
The last three years took a lot out of me without my realising it. The stress and anxiety are now telling. I have joined a gym to get out of the old routine and to try to get fit again. You only think of your loved one when times are bad and never about yourself.

Ovarian cancer is the silent disease. Are we all going to remain silent and let it kill so many women?
Tony Spencer
Nottingham

Editor’s note:
Tony kindly passed on our newsletter to the Nottingham City Hospital which was responsible for caring for Sue. He also suggested that I write to the Oncology Department of the hospital to offer more information about Ovacome which I did without delay.

New Approaches to Cancer (introductory leaflet)

TACT (Talking and Caring Together)
Ovarian Cancer Support Group
The Professional Development Centre
Park Centre
Park Road
Hindley
WN2 3RY

Telephone: 01942 227022, 01942 896236 or 0161 743 1014

Meetings held every last Wednesday in the month from 7 to 9 pm. Family and friends welcome.

Horsham Support Group
Methodist Church Hall
London Road
Horsham
Surrey

Telephone: 01403 260861, 01403 262658 or 01403 255645

Meetings are held on the second and fourth Wednesdays of the month from 2.15 pm to 4.30 pm.

Thelma Garlick
West Yorkshire

Susan Cataldo would like to correspond with other women who have had ovarian cancer and has asked me to inform you all of her e-mail address so that you can write to her. Her address is ratpup@ix.netcom.com.

Following our article on familial ovarian cancer regarding genetic testing, from the summer newsletter, we are now including a list of participating centres. If you have queries about your eligibility for testing please call Diana Briscoe on 01223 330019, or write to her at CRC Research Nurse and Cambridge Study Coordinator, Box 238, Level 3, Addenbrooke’s Hospital, Cambridge CB2 2QQ.

Professor Neva Haites, Dept of Medical Genetics, Medical School, Aberdeen
Dr David Goudie, Genetics Department, Ninewells Hospital and Medical School, Dundee
Dr Rosemarie Davidson, Consultant in Medical Genetics, The Duncan Guthrie Institute of Medical Genetics, Yorkhill Hospital, Glasgow
Dr Mary Porteous, Clinical Genetics Service, Molecular Medicine Building, Western General Hospital, Edinburgh
Dr Jonathan Gray, Institute of Medical Genetics, University of Wales College of Medicine, Cardiff
Professor Norman Nevin, Dept of Medical Genetics, Belfast City Hospital
Dr Alan Fryer, Consultant Clinical Geneticist, Countess of Chester Hospital,
Dr Ian Ellis, Consultant in Clinical Genetics, Royal Liverpool Children’s Hospital
Dr Gareth Evans, Consultant Clinical Geneticist, SM2 St Mary’s Hospital, Manchester
Dr Fiona Douglas, Locum Consultant Clinical Geneticist, University of Newcastle-upon-Tyne
Dr Jacki Cook, Consultant in Clinical Genetics, Centre for Human Genetics, Sheffield
Dr Carol Chu, Consultant in Cancer Genetics, St James Hospital, Leeds
Mr Ian Scott, Consultant Obstectician and Gynaecologist, Derby City General Hospital
Dr Richard Trembath, Consultant Clinical Geneticist, Leicester Royal Infirmary
Prof JA Raeburn, Centre for Medical Genetics, City Hospital NHS Trust, Nottingham
Prof Eamon Maher, Department of Clinical Genetics, The Women’s Hospital, Edgbaston, Birmingham
Dr James Mackay, Consultant in Cancer Genetics, Addenbrooke’s Hospital, Cambridge
Dr Anneka Lucassen, Consultant Clinical Geneticist, Churchill Hospital, Oxford
Dr Joan Patterson, Consultant Clinical Geneticist, The Kennedy-Galton Centre, Northwick Park Hospital, Harrow
Dr Vicky Murday, Consultant Clinical Geneticist, St George’s Hospital Medical School, London SW17
Dr Ian Jacobs, Consultant Gynae Oncologist, St Bartholomew’s Hospital, London EC1
Dr Martin Gore, Consultant Cancer Physician, The Royal Marsden, London
Dr Shirley Hodgson, Consultant in Clinical Genetics, Southeast Thames Regional Genetics Centre, London SE1
Mr Robert Fox, Consultant Gynaecologist, Taunton and Somerset Hospital, Somerset
Dr Peter Turnpenny, Consultant Clinical Geneticist, Royal Devon and Exeter Hospital, Exeter
Mr Gareth Beynon, Consultant Obstetrician and Gynaecologist, Frimley Park Hospital, Camberley
Dr Diana Eccles, Consultant in Clinical Genetics, Wessex Clinical Genetics Service, The Princess Anne Hospital, Southampton

© 1998 OVACOME a voluntary organisation which relies on donations. Registered Charity Number 1058026.

DISCLAIMER: The information gathered for this site is from many sources and is provided for guidance only. Ovacome has made every effort to ensure that it is accurate but can make no undertakings as to its accuracy of completeness. All medical information should be used in conjunction with advice from medical professionals.

This site is maintained by Ovacome@dial.pipex.com.    Last updated 31-Dec-98