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Medical updates

Young women on HRT

Some time ago, I requested help with a book for younger women who need HRT (now agreed with Penguin). I was delighted to hear your views and experiences. Thank you for your time, trouble and honesty. Briefly, here are a few points which came up. I hope to address all these points and more in the book. There is still time to write with your experiences: Caroline Hawkridge, 92A Navigation Road, Northwich, Cheshire CW8 1BE.

Doctors may not be up-to-date on HRT
I was given Cyclo progynova which did relieve the hot flushes and sweats but also gave me sore boobs and bloatedness. ... To cut a long story short, I had a six-monthly check-up with my gynaecologist who was interested in HRT. He wrote to my consultant explaining it wasn't necessary for me to be on combined (oestrogen and progestogen) HRT as I had no uterus, so he prescribed Hormonin (oestrogen-only). I am pleased to say that from then on I have had no problems at all.

Normally, women receive combined HRT to protect the lining of the uterus. Yet a recent survey of 737 hysterectomy patients on HRT found 41.2% had been prescribed combined HRT by their GPs. It seems this Ovacome member is not alone! Ask if you aren't sure.

Women have different feelings about HRT
I did not want HRT, but have been told not only about osteoporosis, obviously, but also that some studies indicate that HRT may prevent a recurrence of the ovarian cancer. So I want it! The hot flushes have stopped, but I feel very much like a guinea-pig and am not comfortable with the whole business. It makes me angry that women are so often guinea-pigs.

(HRT) kept me happy all through four months of chemotherapy... Now to be honest I feel I need HRT. It makes me feel confident, attractive and healthy and I dare say sexy.

I have no qualms whatsoever about losing my fertility and ovaries - I still feel a complete woman, am healthy and well, but most of all, I am extremely happy to be alive - and believe me that feeling of joy at having got through the cancer and treatment far outweighs the effects of HRT and menopause. I would have ten menopauses if it guaranteed my chances of survival.

Preventive hysterectomy?
For women with a family history of ovarian cancer, the decision to have a preventive hysterectomy can be harder than it might appear.

What I am not really facing is the menopause/HRT issues. I think I'll just have to cope because the surgery is necessary for survival. Medically, we younger women (I am 44) are told we must replace the oestrogen. HRT seems to produce such extreme opinions. I don't know where to get balanced views from people in a similiar situation of necessity and youth . . . I am worried about the long-term risks of HRT and how my body will cope with a chemical alternative, the risks of breast cancer (if you do) and osteoporosis if you don't. What if I find it impossible to settle down with HRT and have no ovaries?

My younger sister (aged 42) was operated on in 1994 and did not have a day's problem post-op or with her HRT . . . Out of fear, I delayed the inevitable decision. The surgeon was very uncommunicative and rushed when I saw him . . . there was no pre-op info . . . and no discussion of HRT . . . I had my op last year and life has not been the same since! . . .How do other women manage? I struggled, and continue to struggle to keep my job through it all. I feel guilty when I think thoughts of regret on my decision to have the op. . . I would like to have talked to women who had the op, both successful and unsuccessful . . (and to have known) the disadvantages of HRT and fact they do not suit everyone.

Although no one wrote expressing concern about fertility, you might be interested in a medical journal report on a 30-year-old with Stage III BOM who had her ovaries removed but not her uterus, then chemotherapy (and presumably HRT). In the nine years since, she has given birth to a baby boy and then twins through egg donation/IVF.

OTHER SOURCES OF INFORMATION AND SUPPORT
Daisy Chain (early menopause), PO Box 2829, Blandford Forum DT11 8YT Hysterectomy Support Network, c/o Women's Health, 52 Featherstone St, London EC1Y 8RT Amarant Trust (pro HRT), 11-13 Charterhouse Buildings, London EC1M 7AN

ROC
Continuing research into ovarian cancer

ROC's commitment to funding research into ovarian cancer continues. The research trial it is supporting continues to grow and the first three vital cases of early ovarian cancer in the women being screened have been detected. This is obviously extremely encouraging news and validates the technique being used to screen volunteers.

Further information and a copy of the ROC newsletter can be obtained by contacting ROC at PO Box 3872, London SW15 6ZG or telephone 0181-789 1406 (fax 0181 789 1008).

ROC are about to launch a new drive to recruit women for their screening programme, which aims to establish a blood test that could save thousands of lives in the future. If you, a friend or relative would like to help, you must satisfy the following criteria:

To join the screening programme, please write for an application form to the address below (not to ROC itself):

The Ovarian Cancer Screening Unit
The Royal Hospitals NHS Trust
St. Bartholomew's Hospital
West Smithfield
London EC1A 7BE

Medical Update

Ian Jacobs - consultant gynaecologist and cancer surgeon at St Bartholomew's and the Royal London Hospitals - has agreed to act as our medical advisor and as a member of the committee. His work involves both the surgical care of gynaecological cancer patients and direction of the Gynaecological Cancer Research Unit at St Bartholomew's Hospital. In addition to directing the molecular and clinical studies organised through this unit, he is co-ordinating national studies of surgery and screening for ovarian cancer.

I am delighted to help Ovacome to provide information about ovarian cancer and to support affected women, their families and friends. I admired the way in which Sarah Dickinson worked with such deter-mination to establish Ovacome and know how vital its work is for those affected by ovarian cancer.

One of my roles will be a regular medical or nursing contribution to the newsletter, responding to frequently asked questions. In this initial contribution I explain the staging system. In future I will involve other specialists in responding to specific questions, about familial ovarian cancer, screening, chemotherapy, surgery, borderline tumours, prognosis and pain management. What are the stages of ovarian cancer? This article explains the stages of ovarian cancer and the reasons for this classification. I have included comments about treatment but more about treatment and outcome will appear in other articles.

Cancer of the ovary spreads in two main ways. The most common is along the surface of the lining of the abdomen (the peritoneum) and bowel. Eventually cancer spreads to involve the layer of fat inside the abdomen (the omentum) and outside the liver. The other frequent spread is via the circulation of lymph fluid, which is important for immunity (the lymph system). The lymph from the ovaries goes initially to lymph nodes (glands) on the wall of the pelvis (pelvic lymph nodes) and then to lymph nodes around the aorta (para-aortic lymph nodes). Cancer of the ovary can also spread in the blood to the liver, lungs or brain but this is quite uncommon.

Stage I is the earliest, when cancer affects only one or both ovaries. At this stage there are few symptoms and most women are not aware that anything is wrong. Sometimes stage I cancers do cause symptoms such as discomfort, passing urine more frequently or constipation, usually due to the tumour pressing on the bladder or bowel. Because there are so few symptoms only a small number of women have the cancer detected at this early stage (about 15%). To be certain that a cancer is stage I, careful exploration and sampling of the common sites of spread is important. Even if a cancer appears at surgery to affect only the ovary, spread may have occurred, but be seen only under the microscope. Samples must be taken from the pelvic lymph nodes, para-aortic lymph nodes and omentum for closer examination. If a cancer is confirmed as stage I the outlook is good, particularly if it is confined to the inside of one ovary (stage Ia) or both ovaries (stage Ib). In this case surgery alone may be sufficient treatment. If the cancer involves the surface of the ovary or is found in fluid in the abdomen (stage Ic) further treatment with chemotherapy may be considered.

Stage II cancer has spread outside the ovary to the lining of the pelvis and can involve the uterus, uterine tubes, bladder and rectum. It is fairly uncommon (about 10% of women with ovarian cancer), because the lining of the pelvis and abdomen are not separated and consequently cancer usually spreads to the abdomen at the same time as to the pelvis. Most women with cancer diagnosed at stage II will be advised to have treatment with chemotherapy as well as surgery.

Stage III is the most common, found in approximately 65% of women with ovarian cancer. At this stage the cancer may have spread to involve the lining of the abdomen, the bowel surface, the omentum and the lymph glands in the pelvis or around the aorta. Often the tumour on the lining of the abdomen releases fluid which collects inside the abdomen and is called ascites. The symptoms at this stage are indigestion, constipation, poor appetite, distention of the abdomen and discomfort, usually due to disturbance to the bowel or to the pressure of the fluid and tumour. Such symptoms are, of course, extremely common in women who have nothing at all wrong with them. In fact, the vast majority of women with these sort of symptoms do not have cancer of the ovary and this makes it very difficult to diagnose the condition. When a stage III cancer is discovered the aim of initial surgery is to remove as much tumour as possible. Further treatment usually involves chemotherapy. Sometimes a second operation during chemo-therapy may also be suggested.

About 10% of women with ovarian cancer are found to have stage IV disease,which involves spread outside as well as inside the abdomen. This sort of spread most commonly involves the lungs. Women with stage IV cancer may experience the same symptoms as women with stage III cancer and have the lung spread detected by a chest X-ray. Sometimes the lung spread may be the first symptom of the cancer if it causes shortness of breath or a cough. Stage IV ovarian cancer may be treated by surgery followed by chemotherapy or by chemotherapy alone. If you have any questions about this article please send them in to the Editor and I will try to answer them in the next newsletter.

Ian Jacobs
MD MRCOG
Consultant Gynaecological Oncologist

Ovacome to offer Ovarian Cancer Information Leaflets

Ovacome, in conjunction with a grant from SmithKline Beecham, has developed a set of printed fact sheets and booklets about ovarian cancer diagnosis and treatment. The fact sheets, originally written by a consultant oncologist at the Dorset Cancer Centre and amended with the input of members of Ovacome, will include the following topics:

In addition, a comprehensive guide to complementary medicine and nutrition, written by Ovacome committee member, Diane Chapman, will also be available to members. Plans for additional leaflets and fact sheets on nutrition, HRT supplements, hysterectomy, the warning signs for ovarian cancer and much more are in place, and likely to be rolled out over the next year and beyond as Ovacome continues to grow and offer more services to the community.

See Publications for details of availability.

Plans are currently under way to enable Ovacome members to order any or all of these fact sheets and booklets, and we will keep you apprised of when those plans are in place (most likely by the end of the year). It is likely that they will be ordered for a modest fee to cover postage and administration cost.

In addition to membership access to this information, Ovacome is working in conjunction with SmithKline Beecham and other pharmaceutical companies to extend the distribution of these materials to cancer centres around the country.

It is well known that information on ovarian cancer is difficult to find, and not always particularly useful. This new ovarian cancer information pack will give healthcare professionals around the country easy access to a wide range of relevant issues. They can, in turn, offer these materials to patients directly, as they see fit, or set up small ovarian cancer libraries at the hospital. As part of the packages distributed to hospitals, Ovacome membership forms will also be included. Later in the year a educational video for patients will also be produced. The video will be narrated by Jenny Agutter and will discuss various womens' experiences after a diagnosis of ovarian cancer, with general information about the condition and how it is treated.

 


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