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Ovacome Ovarian Cancer Library and Information Sheets

We've been anxious to get the Ovacome Library of Fact Sheets finished and available to members, and assure you we're working as hard and as quickly as we can to get them printed and in the office to send out to you.

The plan is to work even harder with our sponsors, SmithKline Beecham Oncology, to have everything ready by April, when we'll send all members a special announcement, with an order form, to request the leaflets and fact sheets they're most interested in. PLEASE DO NOT CONTACT US TO REQUEST LEAFLETS BEFORE YOU RECEIVE YOUR ORDER FORMS IN THE POST, AS WE DO NOT YET HAVE ANYTHING TO SUPPLY. It also overburdens our phone lines. Thanks for your co-operation.

Just as a reminder, though, these are the fact sheets and leaflets that will be available:

Other items we are looking to make available in the future include information on Hormone Replacement Therapy and Clinical Trials - just to name but two.

Please note that in order to cover postage costs for some of the heavier items, there may be a small charge once you've ordered them. That's just so we can keep our operating costs down.

Finally, I am happy to announce that a new Ovacome video Ovarian Cancer: What to Expect has recently been filmed, and is hosted by Ovacome Patron Jenny Agutter. This exciting project has been made possible by a generous grant from SmithKline Beecham Oncology, and many thanks to them.

The video features three Ovacome members (and some partners!) who speak openly and compellingly about their own journey through ovarian cancer. A number of copies will be available on loan to Ovacome members. An announcement will probably be made at the same time as the library is finished. These videos will also be distributed to cancer centres throughout the country, in an attempt to bring newly-diagnosed women in touch with Ovacome as soon as possible.

Right, Jenny Agutter takes a break between scenes during the recent filming of our video. With her are two Ovacome members featured in the video, Linda and Roy Cecil. Other members who took part were Mary Etherington and her partner Danny, Karyn Connor and Debbie Howells. Many thanks for their fantastic contributions.

 

Understanding Clinical Trials

The Medical Research Council (MRC) is currently conducting several major clinical trials of treatment for ovarian cancer. In line with our aim to equip women with the necessary knowledge to take a level of control over their own treatment, where possible, this article gives brief details about each.

Should you wish to inquire further about any of these programmes, please contact your oncologist (please do not contact Ovacome as we have no additional information to provide) as he/she should be able to let you know whether you would be eligible for a particular trial.

Icon 1
This trial is an international collaboration between the MRC in the UK, the Mario Negri Institute in Italy and the Swiss Institute for Cancer Research in Switzerland.

A similar trial called ACTION is also being run by the European Organisation for Research and Treatment of Cancer (EORTC).

In essence, this trial is looking at patients with early ovarian cancer in whom all evidence of disease has been removed at surgery. Its goal is to determine whether patients would benefit from immediate chemotherapy, or whether chemotherapy should be delayed until the tumour recurs.

As of 31st January, 760 patients have been entered into these studies and the intention is for recruitment to continue until there are 900 patients.

Icon 3
This trial is also being run on an international basis with the Swiss and Italians, as in Icon 1; recently the Scandinavians have joined as well.

The trial relates to patients with more advanced disease who need chemotherapy immediately. It will look at whether Taxol in combination with either cisplatin or carboplatin is better than standard conventional cytotoxic chemotherapy involving only cisplatin or carboplatin, as there remains considerable controversy as to the effectiveness of Taxol in the first line of treatment of ovarian cancer.

Recruitment for this trial has been very brisk and it is expected to reach its target of 2,000 patients by April this year.

Icon 4
This trial is again an international collaboration between the MRC in the UK and the same groups in Italy and Switzerland.

The trial aims to compare the efficacy of Taxol and platinum with conventional platinum-only chemotherapy in patients whose cancer recurs after primary treatment.

As of 31st January this year 183 patients had been recruited. The aim is to recruit 800 patients in all. Recruitment has been very slow in the UK because of funding difficulties.

OV05
This trial is a collaboration between the MRC in the UK and the EORTC.

It relates to patients who have completed all first-line chemotherapy for their ovarian cancer and have gone into complete remission with no evidence of the disease as assessed by any method including measurement of CA125 tumour markers.

The trial seeks to determine whether CA125 is of any value in the follow-up of patients with ovarian cancer, as there is very considerable debate on this subject. Many women become extremely anxious about their CA125 results and if it is determined that these are of little value in follow-up, then their continuous routine use needs to be reassessed.

This trial does not relate in any way to the use of these tumour markers in women having active treatment, where it is generally accepted that they can be very helpful in the management of the patient.

The trial has only just started and so far only 110 patients have been recruited. There is a target accrual of 1100 across Europe, including the UK.

OV06
Another trial - to be called OV06 - will be launched in April by the MRC.

This trial seeks to determine whether there is any value in further surgery in those with ovarian cancer who have had a good response to initial chemotherapy.

Phase II Trials
In addition to the trials mentioned here, many centres throughout the country look at new drugs in what are termed 'Phase II' trials. These are very much smaller trials seeking to determine which drugs may be more appropriate for use as first-line treatment in the future.

For a free copy of CancerBACUP's leaflet entitled Understanding clinical trials please send a 49p stamped addressed envelope to CancerBACUP, 3 Bath Place, Rivington Street, London EC2A 3JR

PLEASE NOTE:
your local health authority should "in theory" fund all clinical trials but there is currently no legal documentation stipulating this.

As a result, there is no guarantee that the treatments outlined here are being conducted in your area.

Special thanks to Dr David Guthrie of Derbyshire Royal Infirmary for his help in providing the information for this article.

 

Fertility Issues for Women with Ovarian Cancer

As cancer treatments become more successful, the emphasis is hopefully shifting to include long-term quality of life issues for the woman and her family, rather than just focusing on survival. With this in mind, the issue I will cover in this newsletter is the complex area of a woman's fertility and the treatments commonly used to treat ovarian cancer which can affect fertility, sometimes permanently. This will then be followed up with a second article, in the next newsletter, addressing what can be done to minimise fertility loss or try to preserve it. It will also cover the options available when premature infertility actually occurs as a result of ovarian cancer treatment.

In my experience as a specialist nurse supporting women of all ages undergoing treatment for ovarian cancer, the preservation of fertility appears to be one of the most important considerations for women of childbearing years.

Even if a woman has not been planning or considering a pregnancy, or already has a child, the prospect of the cancer treatment threatening her fertility, and taking away her "choice", is often difficult to accept. Women often comment that it feels "so unfair", "so final" or "a heavy price to pay even for a cure"!!

Partners may also find this very difficult. Women who do not have a partner when diagnosed may have the additional anxieties of facing any future relationship knowing that they are unable to conceive and fearing the reaction they might receive.

There is no doubt that, 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 the situation is the first step towards dealing with it.

It is important that women have access to both support and accurate factual information from the onset to enable them to confront the loss, before treatment starts. At a time when the emphasis is often on the cancer and treatments to fight it rather than the overall impact of the disease, it is essential that a woman understands the consequences of any treatment offered and has time, and appropriate support, to enable her to explore this important area which can sometimes be overlooked.

Each woman is unique and what may be important to one may not be a priority for another. Needs and desires vary throughout our life span, and cannot be assumed. It is important that a woman is assessed on an individual basis, and that her treatment plan and any potential effects of this on her fertility are discussed with her.

Chemotherapy and infertility
Individual susceptibility to chemotherapy drugs seems quite variable and therefore it is difficult to accurately assess the overall effect on any particular woman's fertility. We do, however, know that the effects of chemotherapy on the ovary are influenced by:

 Generally, higher doses of chemotherapy are known to have a greater potential to reduce fertility; however, some women are susceptible to lower doses of certain drugs.

When the aim of high-dose treatment is cure, this needs to be discussed carefully with the individual woman, so she is given every chance of "cure" and the fertility issues are also dealt with in a sensitive way.

Generally, younger women do have a better prognosis for retaining ovarian function during and after chemotherapy. Once over the age of 35 years, women are more likely to be affected, and when a woman is over 40 years, infertility is usually irreversible. However, this can be variable, and it is advisable to use a barrier method of contraception if sexually active throughout treatment and continue until advised to discontinue by your doctor or nurse specialist.

However, all chemotherapy drugs described are more likely to reduce fertility when used in combinations, rather than alone.

Surgery and fertility
Bilateral oopherectomy (surgical removal of both ovaries) results in immediate loss of fertility as no eggs are produced (although the womb remains).

After hysterectomy with conservation of both or one ovary (womb removed but one or both ovaries remaining), ovarian function is generally preserved. However, it is not usual to leave the ovaries behind during surgery for ovarian cancer. Also, ovaries may fail prematurely due to alteration in the blood supply following the hysterectomy. Fertility is affected as the womb has been removed.

Total hysterectomy and bilateral oopherectomy or radical hysterectomy (surgical removal of the womb, cervix, upper 3-4 cm of vagina, fallopian tubes, both ovaries and the omentum [fatty apron surrounding these organs] and lymph node biopsies) results in immediate infertility as no eggs are produced if ovaries are removed and womb and tubes are also removed.

Karen Summerville
Gynaecological Oncology Nurse Specialist

CHEMOTHERAPY AND FERTILITY
Drugs most likely to reduce fertility

Drugs thought to have a moderate effect on fertility

Drugs thought to exert little if any effect on fertility

 


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