My ovarian cancer
Coping with the news
Different people cope in very different ways when faced with news such as a diagnosis of ovarian cancer. Everyone including friends and family have differing needs which vary over time. What is important is that you get the information you want, when you want it.
Your doctor or hospital consultant may have broken the news to you. Research shows that in this situation, people actually digest very little of the information they are given, so it is important that you are given ways of accessing information when you’re ready.
It is a good idea to be prepared for your next visit. If possible take someone with you, and take a pen and paper to write down key information and answers to your questions.
Do not be embarrassed by your lack of understanding of the subject or the terminology used by the doctor. If this happens, ask them to explain it in a different way, and if you’re still not sure, write down key words and phrases, and look them up later in a medical dictionary. Your doctor should be able to explain what is going on in simple, clear language.
Both Ovacome and CancerBACUP offer helplines for finding out further information, or for seeking emotional support . Click here for their details (link to other useful organisations) You should also not be afraid of asking your doctor to refer you to a specialist counsellor.
Questions you might want to ask
Information questions
Important if you wish to take other advice or research your type of ovarian cancer.
What sort of ovarian cancer do I have
What stage is my cancer at? (Stage 1 (early)- Stage 4 (late))
What treatment do you propose I have (and why)
If you’ve had an operation, how much growth were you able to remove?
Questions to help organise your life
How often will I need this treatment?
How many treatments will I need and what does each treatment involve?
Are there any side effects to this treatment? What are they?
What other doctor’s or hospital visits will I need to make?
How long will it take me to recover after each treatment?
Questions you might feel the need to have answered
How successful has this treatment been in the past?
I am having surgery, who will do the operation, and how many similar operations have they done? (research shows that operations are best performed by specialist gynae oncologist surgeons, who do many operations each year).
What support is available for me and my family in coping with my illness?
Other useful Organizations
Cancerbackup
3 Bath Place
London EC2A 3DR
Tel: 020 7920 7220
Fax: 020 7696 9002
Freephone helpline: 0808 800 1234
Website: www.cancerbackup.org.uk
Provides information and support on all types of cancer to people with cancer and their families and friends.
MD Anderson Cancer Center
Houston, Texas, USA
Website: www.mdanderson.org/diseases/ovariancancer
The largest centre in the United States devoted to cancer patient care, research, education and prevention.
The National Cancer Institute
USA
Website: www.nci.nih.gov
The National Cancer Institute gives comprehensive information on all cancer and treatments.
Ovacome
PO Box 6294
London W1A 7WJ
Admin Line 0207299 6654
Support Line 0845371 0554
Website: www.ovacome.org.uk
For people affected by ovarian cancer, including telephone support network.
DIPEx
Website: www.dipex.org.uk/ovariancancer
A collection of patient experiences which you can read, listen or watch on your computer. Covers a range of subjects connected to ovarian cancer, as voiced by women themselves.
The Gynaecologic Cancer Foundation
Website: www.thegcf.org
This American charity has a wealth of information on ovarian cancer and you can also see the proactive approach they have to awareness raising.
Two other American sites which are well worth a look include:
The National Ovarian Cancer Coalition
Website: www.ovarian.org
The Ovarian Cancer National Alliance
Website: www.ovariancancer.org/
Venus Appeal
Website: www.venusappeal.org/
Gives women the facts about the four main gynaecological cancers - womb, ovarian, vulval and cervical. The site also provides information and links to organisations and support groups who may be able to provide further help.
Website Jargon buster
Adjuvant Chemotherapy: One or more anticancer drugs or hormones used in combination with surgery or radiation therapy in order to remove any remaining cancer cells in patients whose cancer is likely to recur
Antiemetic drugs can prevent or reduce nausea and vomiting, which can be side effects of some chemotherapy drugs.
Ascites excess fluid in the space between the membranes lining the abdomen and abdominal organs.
Benign tumors are NOT cancer. Benign tumors are only very rarely life-threatening. They do not spread and invade other tissues. Benign tumors can usually be removed and only infrequently grow back.
Bilateral Salpingo-oopherectomy removal of both ovaries and fallopian tubes.
Bioinformatics: The management and analysis of biological information using computers techniques to accelerate and enhance biological research.
Biomarker: A molecular indicator of a specific biological property; a biochemical feature or facet that can be used to measure the progress of disease or the effects of treatment.
Borderline or Low Malignant Potential (LMP) tumors are a borderline form of cancer that may eventually spread and invade other tissues. This is a gray zone. Most of these tumors are benign but a few spread and progress. There are certain features that allow the pathologist to predict with some degree of confidence how one of these tumors will behave.
CA125 blood test CA125 is a protein released by ovarian cancer tissue which is often found to be at high levels in the bloodstream in women with ovarian cancer. It is used to diagnose and follow up ovarian tumours before and after treatment. However, to date, it has not shown to be effective at picking up early stage ovarian cancer, and levels of CA125 can be raised by many normal tissues or other conditions, such as endometriosis. Currently it is not yet specific or accurate enough to be used as a widespread screening tool.
Cytoreduction (debulking): removal of as much of the tumour as possible although it cannot be completely removed. This is believed to improve to improve a woman’s chance of survival.
Endometriosis presence and growth of endometrial tissue (the lining of the womb) in places other than the uterus (womb), that often results in severe pain and infertility.
Functional Genomics: The use of genetic technology to determine the function of newly discovered genes by determining their role in one or more model organisms.
Gene expression: The process by which a gene's coded information is converted into the structures present and operating in the cell. Expressed genes include those that are transcribed into mRNA and then translated into protein and those that are transcribed into RNA but not translated into protein (e.g., transfer and ribosomal RNAs).
Histology the minute structure of tissue as viewed through a microscope.
Gene expression: The process by which a gene's coded information is converted into the structures present and operating in the cell. Expressed genes include those that are transcribed into mRNA and then translated into protein and those that are transcribed into RNA but not translated into protein (e.g., transfer and ribosomal RNAs).
Gene Expression: The process by which a gene’s coded information is converted into the actual production of the functional product – a protein
Gene: The basic biological unit of heredity. It consists of a sequence of deoxyribonucleic acid (DNA) needed to contribute to a specific functional product.
Genome: All of the genetic information or hereditary material of a particular individual.
Genomics: The study of the structure and function of genomes.
Grading: The grading of ovarian cancer gives doctors important information about the disease and which kind of treatment would be best. It describes how similar or dissimilar the tumour is to normal tissue.
Interval debulking the term used for surgery which takes place after an initial course of chemotherapy.
Laparoscopy Laparoscopy is often called key hole surgery. It involves inserting a telescope through the umbilicus (belly button) so that the contents of the abdomen can be inspected. It is also sometimes possible to perform operations through the laparoscope, but major surgery for ovarian cancer is not usually possible.
Laparotomy: A laparotomy is what most people call an operation in which a cut is made in the abdomen. This is the sort of operation which is usually required to remove an ovarian cancer.
Leukopenia a decrease in the number of white blood cells which can lead to infection.
Lymph nodes small bean shaped, pea sized glands clustered in the neck, armpits, abdomen and groin. They have a defensive role and serve as a barrier to the spread of infection.
Lymphadenectomy removal of one or more lymph nodes.
Malignant tumors are cancer. Malignant cancer will spread beyond the ovary, invading and damaging other organs of the body. The spread of cancer beyond its tissue of origin is called metastasis.
Microarray: A tool used to sift through and analyze the information contained within a genome. A microarray consists of different nucleic acid probes that are chemically attached to a substrate, which can be a microchip, a glass slide or a microsphere-sized bead.
Neutropenia a shortage of white blood cells meaning that it is sometimes difficult to fight off infections.
NICE National Institute for Health and Clinical Excellence. They work on behalf of the National Health Service and the people who use it, and make recommendations on treatments and care using the best available evidence (www.nice.org.uk).
Omenectomy removal of fatty tissue that covers the bowels.
Omentum the fatty tissue from the upper part of the abdominal cavity near the stomach and intestines.
Oopherectomy removal of one (unilateral) or both (bilateral) ovaries.
Paracentesis a process by which fluid build up in the abdomen, which can occur with ovarian cancer, is removed by inserting a needle into the affected area, and drained off.
Protein: Large molecules composed of amino acids whose specific order is determined by the DNA sequence in the gene that encodes it. Proteins each have unique functions to perform a wide variety of activities and, as such, they are essential to the life of the cell.
Proteome: Proteins expressed by a cell or organ at a given time and under specific conditions.
Proteomics: The study of the structure and function of all the proteins encoded by a genome.
Recurrent a tumour which returns after the completion of treatment.
Remission no evidence of disease after treatment has been completed.
Salpingectomy removal of one (unilateral) or both (bilateral) fallopian tubes.
Staging. The staging of ovarian cancer gives doctors important information about the disease and which kind of treatment would be best. It describes how far the cancer has spread. The FIGO staging system is used which goes from 1 to 4 (1 is the earliest stage).
Thoracentesis a process in which fluid build up, as a result of ovarian cancer is drained from the chest cavity by inserting a needle.
Thrombocytopenia decreased number of platelets that can lead to bleeding.
Trans l Ultrasound Scan A means of looking at the ovaries without surgery. It involves the insertion of a probe into the , and offers a clearer view than by scanning through the abdominal wall.
Tumour suppressor gene: A gene encoding a protein that normally limits cell growth and can suppress or block the development of cancer. Loss of function of these genes is believed to be a necessary prerequisite for tumor development. BRCA1 and p53 are well-known tumour suppressor genes.