When Jennifer Madelyn Trichot was diagnosed with stage III epithelial ovarian cancer it was like she was dealt a death sentence. ?For the first time I was confronted with my mortality,? Trichot recalls. I did not understand the disease and with the ?good? advice of well-meaning friends I found myself getting depressed and more detached from reality. For at least 8 months I lived in a constant state of denial and kept my mind off the disease as much as possible.

Now, after more than three years, I try to live my life day-by-day, focusing my thoughts in the present tense and try to deal with matters close at hand. I concentrate on practical things. I compartmentalize the disease and try not to give it free reign over my existence. After a full treatment, including surgery, radiation therapy and chemotherapy I have to acknowledge that it is impossible to feel like a “normal person” after living with this illness for so many years, and accept the fact that it’s okay to feel crazy and alienated some of the time–or even much of the time.?

Each year ovarian cancer takes the lives of thousands of women. Long known as a silent killer, ovarian cancer has the highest mortality rate of all female cancers. Unfortunately, most women will only recognize the symptoms of the disease when it is too late. Usually, the cancer spreads immediately to other tissues in the abdominal cavity such as liver, stomach, intestines, omentum (the fatty tissue attached to the intestines) and the diaphragm (the tin muscle that separate the chest from the abdomen). Soon thereafter, ovarian cancer can also spread through the bloodstream or lymph system (tissue and organs that produce and store cells that fight infection and disease) to other areas in the body, such as lung and brain, where they can form new tumors.

“…I found myself getting depressed and more detached from reality. For at least 8 months I lived in a constant state of denial and kept my mind off the disease as much as possible…”

At time of diagnosis about 70% of women have already advanced disease. This is largely due to the fact that ovarian cancer is generally asymptomatic, grows fast and rarely causes pain or other clear and distinguishable symptoms that might lead to early detection. Or at least that is what was thought to be the case. True, most doctors will agree that it is not easy to diagnose ovarian cancer. The symptoms in the early stages may be very indistinct and vague, there may be several of them but they are very unlikely to persist. Later, as the tumor enlarges, it presses against the bowels or other organs causing symptoms such as diarrhea or constipation, nausea, edema, pain or swelling of the abdomen, painful intercourse and leg or back pain, and abdominal bloating (which generally appears when the disease is at an advanced stage). Although these symptoms may indicate ovarian cancer, it is important to remember that not everyone with these symptoms has the much dreaded disease. And that is often the problem.

New groundbreaking research presented during the Annual Meeting of the American Society of Clinical Oncology (ASCO), earlier this year in Orlando, USA, made it clear that most women will experience a variety of clustered symptoms, even when the disease is in its early stages. Each individual symptom may not mean much, but presented together it becomes a different story.

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Oncologists find these findings exciting because it is the first time that a potentially deadly disease may have a ?happy ending?. If the clustered symptoms are recognized early enough, the odds of surviving ovarian cancer may increase from a meager 30% when women are diagnosed at later stages of the disease to more than 95%.

?But,? say Dr Anita Sanchez, MD of Cedars-Sinai Ovarian Cancer Detection Program in Los Angles, California (USA), ?Woman need to be alert to all the symptoms combined, and, when they suspect that something is wrong, they have to make sure that their doctor does too.? She warns that because most symptoms a rather vague and indistinct, most GPs will not immediately recognize the disease. ?Because ovarian cancer is the most lethal of gynecological malignancies, it is important that the diagnosis is made as early as possible. When diagnosed early, ovarian cancer is highly curable,? she notes.

Diagnosing Symptoms
Results from a new retrospective study presented during ASCO, including more than 1250 women with various stages of ovarian cancer seem to suggest that most patients may at times have experienced one of three key symptoms, including an increased urgency to urinate, a puffed-up stomach and a bloated feeling. While these symptoms in itself may not set off alarm bells because they are relatively ordinary, this study clearly indicate that in ovarian cancer patients these symptoms seemed to have started spontaneously and did not stop. In addition to key symptoms, most of all interviewed patients also reported a series of other symptoms, including extreme weigh loss, increased tightness of clothes without weight gain or weight loss, pain or pressure in the lower abdomen, difficulty in eating normally, extreme constipation and flatulence (symptoms of extrinsic obstruction), diarrhea, nausea, indigestion and abnormal vaginal bleeding.

Trichot, who participated in the study, commented that these symptoms really felt different from anything she had ever experienced before. ?In retrospect I can easily confirm that the uneasiness, discomfort and pain were distinctly more intense than what I would feel with an upset stomach or PMS,? she explained.

Pap smear not conclusive
Although a family history of cancer may be an important indicator of potential risk, it is not necessary true that only women with such a family history are at risk of developing the disease. According to Sanchez, women need to be alert to all symptoms simply because they are female. ?Every woman is at risk for ovarian cancer. Some may have the burden of family history, others don?t. Recent medical research shows that more than 90% of ovarian cancer patients don?t have the cancer in their family. Nor do these women have any other special risk factor, such as breast or cervical cancer. In these cases the cancer simply occurs by chance,? notes Sanchez.

The remaining 10% of women with a hereditary predisposition for ovarian cancer are carriers of the BRCA1 or BCRA2 mutation gene, a breast/ovarian cancer susceptibility gene, have a personal history or a family history of the cancer or similar cancers ?The change that women will indeed get the disease is expected to decrease with age and is estimated to be 14% for women diagnosed below 40 years of age, dropping to less than 7% for women diagnosed with the disease in their 60s and 70s,? says Sanchez.

Another, often heard, misconception is that a regular checkup, including an annual Pap smear, will be enough to detect the disease. The truth is, however, that a Pap smear only detects cervical cancer. ?However,? explains Sanchez, ?Women believing that their Pap also screens them for ovarian cancer, will have a false sense of security.?

First steps in combating the disease
According to The Ovarian Cancer Research Fund, its important to start with the basics. Information is key. ?Women need to ask questions? say?., learn the symptoms and get to know the risk factors. This is the only way in which they can really make a difference.

The right doctor to see ? and the right questions to ask

New tests
A study, published late last year in the Journal of Clinical Oncology, comparing blood tests and CT Scans in predicting disease free survival in ovarian cancer patients, shows that the CA 125 blood test, which measures the level of protein produced by ovarian cancer cells in the patients? blood, may be superior to standard imaging techniques, like CT Scans, in predicting survival in patients with recurrent ovarian cancer.

?This is good news for patients,? says Dr Bo Gronlund, MD, at the Department of Oncology at Rigshospitalet, the Copenhagen University Hospital in Denmark. ?Patients can now be safely monitored by blood tests alone and avoid costly and time consuming CT Scans.

Researchers hypothesized that the CA 125 blood test might be a better tool for monitoring tumor growth among patients whose cancer had returned than traditional imaging techniques. However, the researches noted that follow-up studies are required, because these test only included women receiving a specific chemotherapy drug as part of their treatment.

Coping with the disease
Coping with the emotional and psychological impact of cancer as well as with the medical reality can be difficult. The Dutch Kwf Kankerbestrijding and ASCO, the American Society of Clinical Oncology both offer many coping resources for patients. Available resources offer information on relationships, communication, sexuality, home health, grief and bereavement and many more topics to help patients and families better cope with cancer diagnosis and treatment. In addition to general information ASCO?s website also offers specific information about side effects of cancer and cancer treatment adapted from the ASCO Curriculum Optimizing Cancer Care: The Importance of Symptom Management.

Some patients prefer the help offered by cancer support groups such as NOCC, National Ovarian Cancer Coalition (US, http://www.ovarian.org), OCNA, Ovarian Cancer National Alliance (US, http://www.ovariancancer.org), Stichting Olijf (Netherlands, http://www.kankerpatient.nl/olijf/). Other patients prefer not to be confronted with their disease. Based on her personal experience, foe example, Jennifer Madelyn explains that she tried to avoid discussing the disease. ?I surround myself mostly with people and situations that bear no relationship to the illness.? In coping with the emotional impact she avoids reading or listening to too much about ovarian cancer or involving herself with people who are also fighting the disease. ?Although I am aware they can be beneficial and therapeutic, I avoid support groups in order to prevent myself from allowing any new fears and anxieties about the illness to enter my consciousness.?

Dr Peter Hofland , PhD, is a medical communication consultant. He works for the EAMEI | European Association for Medical Education and Information in Amsterdam, The Netherlands.

Helpful websites for cancer information
Giving patients knowledge and an opportunity to ask questions and discuss the disease is crucial in building trust between patients and the team of medical professionals. Today, many patients have access to vast amounts of information resources through the internet, but not all information is correct or up-to-date.

?With health sites among the most popular resources on the internet, the way patients learn about their diagnosis and treatment, has drastically redefined today?s patient-doctor relationship,? observes Dr Nikita Herreira, a clinical psychologist working for the American Cancer Society. ?When patients get information from the internet and other sources, doctors often feel challenged, because they feel that there is never enough time in their schedule to scrutinize the piles of paper and tell them what is good and what not.? However, Herreira believes that ?it is important for patients to bring the information they get from the internet to their doctor, because this will help them make well informed decisions. This is especially important when patients are asked to make a choice among several possible therapies.?

Herreira?s idea are supported by Rebecca Garcia, PhD, vice president of health sciences for the Susan G. Komen Breast Cancer Foundation. ?Quality cancer care depends on careful interaction of many healthcare providers working with the patient to battle the disease ? a true partnership,? she concludes.

Taking their cue from a survey that showed how people with HIV/AIDS rely on the Internet to find accurate information, seek help, make treatment decisions and create communication networks with other patients, a British research group questioned various groups of cancer patients about their experiences and the importance of the internet as an information resource.. Not surprisingly, the researchers found that most cancer patients with access to the internet use this medium to understand their diagnosis and find out about the treatment. Many patients said that the Internet offered them a way to learn about living with their cancer and make contact others in similar situations. Patients also use the internet to find answers to questions that are difficult or embarrassing to ask directly, seek additional opinions, interpret comments made by health professionals during treatment, and find emotional support and suggestions on how to cope with isolation caused by the disease. The survey also showed that cancer patients use the internet to get information about side effects, dietary advices, evaluate the efficacy and benefits of specific treatments and to get advice on insurance and finance issues.

Patients? reliance on the internet as a resource clearly shows that it has become an important tool for cancer patients. However, the conclusions of the British research group, published in 2004 in the BMJ (British Medical Journal), also showed that patients did not just take the information for granted. Most patients surveyed said that they verified the information by comparing different sources for accuracy and consistency.

Web sites
To assist cancer patients, most cancer treatment facilities maintain excellent online information services for patients and families. Of the many websites, a few stand out as exceptionally informative, offering unbiased and current information.

These websites include:

Other sites are continually being developed. Local support group, healthcare professionals and national cancer organizations may suggest new and reliable internet resources with accurate and updated information.

Ovarian Cancer: Incidence and treatment
Ovarian cancer is the fifth most common cancer in woman and the second most common gynaecologic cancer (only second to breast cancer). Older women are more likely to develop ovarian cancer. Race and Ethnicity plays a role. Caucasian women are at a higher risk than Black or Asian women. Also, women with Ashkenazi Jewish ancestry have a greater than average change of getting the disease. Women with breast cancer before their 50th birthday, breast cancer in both breast and a family history of ovarian cancer in the first degree (mother, sister, daughter) or second-degree relatives (grandmother or aunt) have a higher that average risk in developing ovarian cancer.

The American Cancer Society estimates that about 25,580 new cases of ovarian cancer are being diagnosed in the United States per year, accounting for approximately 4% of all cancers in women.This incidence is generally the same for all Western and industrialized countries. The Dutch Comprehensive Cancer Centres, for example, report an average of 2,200 new cases of ovarian cancer per year, accounting for approximately 3.3.% of all cancers in woman in The Netherlands.

The treatment of ovarian cancer is based on the stage of the disease which is a reflection of how the cancer has spread throughout the body. During the surgical procedure which is intended to remove the cancer, a surgeon specialized in gynecologic oncology, will collect small pieces of tissues from various parts of the abdominal cavity. Based on the outcome of this biopsy, the surgeon will either remove just the fallopian tube or both ovaries, fallopian tubes and uterus.

The primary treatment option for ovarian cancer is surgery, which will remove the cancer. Follow-up with chemotherapy is designed to kill any remaining cancer cell.

Last editorial review: September 18, 2005.

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