Questions and Answers
Unfortunately, there are wide variations in the nature of gynaecological cancers and no two patients are the same. Each patient has to be treated as an individual. The BGCS website therefore is unable to respond to individual questions from patients relating to their clinical care.
If you have a particular concern or question relating to your personal situation please contact your healthcare provider.
If you are yet to be referred to the hospital and are worried about a suspected cancer diagnosis please contact your general practitioner (GP) or NHS Direct www.nhsdirect.nhs.uk or telephone: 0845 46 47. Macmillan and Cancer Research UK both have excellent websites and helplines that can help answer any questions you may have. Their contact details can be found here.
Once referred to a hospital, clinical teams will usually assign patients a key worker, often a clinical nurse specialist (CNS) who is a first point of contact should you have any questions regarding your care. They will usually give you their contact details when they meet you in clinic.
Don't be afraid to ask questions about your investigations, treatment or other issues surrounding your care. Many patients find writing questions down on a piece of paper before going to clinic helpful so that they don't forget them when they have the opportunity to ask questions.
Please scroll down for further information on Ovarian and Cervical Cancer:
Target Ovarian Cancer
1. My primary is peritoneal cancer, as confirmed by the Royal Marsden. Please would one of the consultants explain, in simple terms, what this is in relation to ovaries, mine having been removed. I understand that peritoneal carcinoma is a form of ovarian cancer? And is there any info on cancer feeding on vitamin pills?
A primary peritoneal cancer is a rare form of cancer similar to ovarian cancer which arises from the peritoneal lining inside the abdomen or tummy which covers all the abdominal organs. The ovary has this covering too and it is this covering overlying the ovary which gives rise to ovarian cancer. Sometimes the ovaries appear normal but tumours are seen growing from the peritoneal lining and because these are coming from multiple sites sometimes chemotherapy with no surgery is the preferred option to chemotherapy with surgery. Your chance of survival appears very similar to that for ovarian cancer. There is no evidence that cancer feeds from vitamin pills or that vitamins have an anticancer activity. A balanced diet is always sensible when dealing with any serious illness. Sometimes if your appetite is poor this can be difficult to achieve and you should seek advice from your cancer team.
2. Where can I get advice on my sex life?
Your clinical nurse specialist can provide advice and can direct you to other people who can advise you or provide support.
3. What are the statistics on ovarian cancer returning after 5 years?
Most ovarian cancers do unfortunately relapse after treatment but this is largely dependent upon the initial stage of disease. Where ovarian cancer is confined to the ovaries when diagnosed (stage I disease) then the prospect of relapse is low. Unfortunately most women have disease that is widespread within the abdomen at diagnosis (stage III disease) and around 70% of these cases do relapse within 5 years. Overall survival is around 40% at 5 years.
Ovarian Cancer Action
1. What are the symptoms of ovarian cancer?
The four main symptoms of ovarian cancer are:
• Persistent stomach pain
• Persistent bloating
• Difficultly eating/feeling full quickly
• Needing to wee more often or more urgently
There are also some other symptoms that women may experience which are:
• Back pain
• Diarrhoea or constipation
2. The symptoms of ovarian cancer seem to be very similar to a number of other conditions so how can I really tell if I have the symptoms of ovarian cancer?
Yes, the symptoms of ovarian cancer are very similar to a number of non serious conditions such as IBS, but ovarian cancer symptoms tend to differ in that they are persistent, frequent and new to you and progressively get worse.
3. You describe the symptoms of ovarian cancer as persistent, frequent and new. What does that really mean?
When we say the symptoms of ovarian cancer are persistent and frequent we mean that you experience these symptoms on most days of the month - more than 12 times per month - and we consider symptoms to be new if they developed within the last 12 months.
4. Is there a screening test for ovarian cancer, like the mammogram for breast cancer?
Unfortunately there is no screening test for ovarian cancer. This is because it has been a challenge to develop a screening test that is accurate enough to detect ovarian cancer.
5. Can a cervical smear test detect ovarian cancer?
No. The cervical smear test detects cervical cancer and is unable to detect ovarian cancer.
6. How is ovarian cancer diagnosed?
If a woman has symptoms that are associated with ovarian cancer a CA125 blood test is conducted. CA125 blood levels tend to be raised in women with ovarian cancer and other conditions, such as fibroids or pelvic inflammatory disease. Even though it is not the most accurate test is can be a good first indicator that ovarian cancer is present. If a woman's CA125 blood level is raised a pelvic or trans-vaginal ultrasound is conducted which allows images of the ovary to be taken to see if any abnormalities exist. If a woman has a raised CA125 blood level and the ultrasound detects an abnormality in the ovary she will be referred to a gynaecologist where further tests will be conducted to determine if ovarian cancer is present.
7. How is ovarian cancer treated?
The treatment that a woman with ovarian cancer will receive will depend on how advanced the disease is and her health. In general treatment involves surgery to remove as much of the cancer as possible followed by 3 to 6 cycles of chemotherapy. The effectiveness of the chemotherapy is monitored throughout treatment and if the tests come back negative for cancer the patient is considered to be in remission. The patient is then asked to return to her doctor for regular checkups for 5 years.
8. Can ovarian cancer be cured?
If ovarian cancer is caught at an early stage women do very well with over 90% of women surviving for more than 5 years. Unfortunately most cases of ovarian cancer are diagnosed at a late stage when the cancer has spread well beyond the ovary and this makes it hard to treat successfully.
9. If I have symptoms that I think may be ovarian cancer symptoms what should I do?
We recommend that you make an appointment to visit your GP as soon as possible and while you are waiting for your appointment keep a diary of your symptoms. Make a note of when you first developed symptoms, what the symptoms are, how often your symptoms occur and if they are getting worse. When you visit your GP take the diary with you, this will give him/her a clear picture of your symptoms which will help determine what might be causing them. At your appointment mention if you have a family history of ovarian or breast cancer.
If your GP doesn't mention it, ask for a CA125 blood test and if this is raised then a pelvic ultrasound should be conducted.
If your CA125 blood level is normal and your GP cannot determine the cause of your symptoms then keep monitoring your symptoms and if they fail to settle then make another appointment to see your GP.
10. If my mother has ovarian cancer does that mean I will get it?
If you have just one family member with ovarian cancer this only slightly increases your risk of developing ovarian cancer. You shouldn't be overly worried but do ensure you are aware of the symptoms of ovarian cancer and if you notice any symptoms visit your GP.
If you have two or more relatives with breast and/or ovarian cancer you are considered to have a strong family history of ovarian cancer. You would need to speak to your GP about risk reduction options, genetic counselling and strategies for early detection.
Medical related enquiries that we receive regularly can be split into a few categories. I have provided some details about each type of query and the answer/advise that we usually provide. Frequency really does vary depending on media coverage at the time mostly but I would say on average we get 5 medical enquiry phone calls per month and 2 medical enquiry emails per month.
TYPE 1: Symptoms
Q: We often get enquiries from women who have symptoms and want to know whether or not they should go to their doctor/ what advice we can give them. This increases after we release any article that notes the symptoms.
A: I always advise these callers to go and see their doctor as I am not a medical professional. Many women resist as they feel embarrassed about going to the doctor or feel that they will not get the help/ answer that they want if they do go. I assure them that it is OK to get a second opinion and that they can request a female doctor f they would prefer. We tackled a particular increase in these calls by releasing an interview with Dr Rosenthal to help reassure women that there was nothing at all to be ashamed of and tried to relieve the stigma somewhat.
TYPE 2: Treatment
Q: The second most frequent type of phone call relating to medical issues that we receive is about treatment. This is mostly from people who have just been diagnosed or are about to undergo a specific procedure and what advice about if this is the correct route for them. Sometimes they want to speak to someone who has shared a similar experience.
A: I usually either give out the MacMillan helpline number to these callers or advise them to go and see their MacMillan nurse. It is sometimes appropriate to point them in the direction of a suitable forum where they can discuss with people who have been through something similar and occasionally we are able to put them in touch with a case study who shares a similar story.
TYPE 3: Cervical Screening
Q: Should the cervical screening age be lowered to 20 yrs in England? This is a common question with many women looking for support from the charity in their campaign to lower the screening age.
A: There is good clinical evidence suggesting that the screening age need not be lowered and that cervical screening in under 25s does not save lives. Early screening (under 25) usually leads to unnecessary intervention and treatments which can damage the cervix and increase the risk of premature births or miscarriages. Screening can do more harm than good in this age group.
Cervical Screening is not a diagnostic test for cancer; it is designed to identify abnormal cells that may one day lead to cancer. 1 in 14 women over 25 yrs, and 1 in 3 under the age of 25, have 'abnormal' smears. This is because immature cells in the cervix can resemble abnormal cells. To determine if there is indeed an abnormality, women will then have to have further tests which might involve a large biopsy of the cervix potentially leading to cervical incompetence. A lot of women under 25 would have to undergo these procedures to detect one with true abnormalities.
Since the screening age was changed in England in 2003 there has been no increase in deaths from cervical cancer in women aged 20 to 25 years old or 25 to 30 years old. Women aged 20 to 25 are very unlikely to suffer from cervical cancer or die from it and the fact that there has not been an increase in the death rate provides support that screening is not effective in that age group.
TYPE 4: Family
Q: Less frequently we have enquiries from family members who have recently had a relation who has been given a diagnosis of a gynaecological cancer. Usually they either want to talk about statistics relating to survival and treatments or they want to know how they can help. Often they just want someone to chat to.
A: The best policy is to discuss the issues with the caller as realistically all the caller wishes is a friendly ear to listen.
TYPE 5: Genetic Testing/Diagnosis
Q: From time to time we have enquiries about genetic testing - its availability/ should they go for it/ where can they get it done privately/ why haven't they been offered it.
A: This is slightly more tricky as you don't know the ins and outs of everyone's situation, but the best way to deal with these enquiries is to suggest that they have a chat with their doctor about their concerns.
TYPE 6: Ca125 Testing
Q: Following previous confusing media coverage, we occasionally receive calls from women who have read about 'a new blood test' (CA125) blood test and want advice on where to get it.
A: The CA125 is an existing blood test currently available on the NHS to patients who have, or are suspected of having, ovarian cancer. NICE Guidelines recommend that GPs and Practice Nurses should offer this test in primary care to women who have experienced one or more of the recognised symptoms for some time or if they occur more than 12 times a month, especially in patients over 50 years of age. The CA125 test is not recommended for asymptomatic women.
Our advice to all women is to be aware of the signs and symptoms and to visit your GP with any concerns.
Frequently asked questions on cervical cancer
This is a selection of different questions that Jo's Cervical Cancer Trust has received about cervical cancer. The answers have been reviewed by Jo's medical advisers.
1. What is cancer?
The organs and tissues on our body are constructed of cells. Cells in different parts of the body may look and work differently but most reproduce themselves in the same way. Most of the cells in our body live for a period of time and are gradually replaced with new cells. Our body has the ability to identify cells that are not made properly and then correct any defect, which allows the cell to become a fully working, normal cell.
If the body cannot correct an abnormal cell, then there is a mechanism in place to kill the cell. Sometimes these abnormal cells cannot be fixed or 'killed off'. They develop and grow without any real control, sometimes they grow into a collection of abnormal cells called a tumour. Tumours can be benign or malignant.
Benign tumours are not cancerous because they do not spread to beyond the original tumour growth area, however, they may cause a problem by pressing on the surrounding organs. They can be removed by an operation and do not usually cause any further problems.
A malignant tumour is a growth (or group) of cancer cells. Cancer is a general term to describe uncontrolled, abnormal growth and division of cells. Malignant tumours have the ability to spread beyond the original tumour growth. Cancer cells have the ability to travel from one part of the body to another via the blood or lymphatic system. Newly formed tumours are called metastases or secondary cancer. Cancer cells are also able to invade and destroy other tissue around them. Nowadays many cancers are caught before they have spread.
2. How many types of cervical cancer are there?
There are two main types of cervical cancer:
• squamous cell - eight out of 10 (80%) cervical cancers are diagnosed as squamous cell. Squamous cell cancers are composed of the flat cells that cover the surface of the cervix and often begin where the outside of the cervix joins the inside of the cervix (or cervical canal).
• adenocarcinoma - more than one in 10 cervical cancers are diagnosed as adenocarcinoma (15-20%). The cancer develops in the glandular cells which line the cervical canal. This type of cancer can be more difficult to detect with cervical screening tests because it develops within the cervical canal.
Adenosquamous cancers are tumours that contain both squamous and glandular cancer cells. Other rare types of cervical cancer can include clear cell, small cell undifferentiated, lymphomas and sarcomas.
3. What are the symptoms of cervical cancer?
Sometimes during the early stages of cervical cancer there may not be symptoms. If symptoms are experienced they could include:
• Abnormal bleeding: after or during sexual intercourse, or between periods
• Post menopausal bleeding, if you are not on HRT or have stopped it for six weeks
• Unusual and/or unpleasant vaginal discharge
• Discomfort or pain during sex
• Lower back pain.
If you are experiencing any of these symptoms or are concerned about any new symptom you should make an appointment to see your GP as soon as possible. Remember, these symptoms are usually associated with many other conditions that are not cancer related.
Not all women diagnosed with cervical cancer experienced symptoms this means attending regular cervical screening for your smear test is even more important.
As cancer develops, it can cause further symptoms;
• Frequency of passing urine
• Blood in the urine
• Rectal bleeding
• Lower limb lymphoedema
4. What causes cervical cancer?
Almost all cases of cervical cancer are caused by persistent high risk Human Papillomavirus (HPV). HPV is a very common infection that four out of five sexually active adults will come into contact with in their lives, without any symptoms. This is why it is so important to attend your regular cervical screening
5. Is cervical cancer infectious?
Cervical cancer is not infectious and cannot be passed on to other people.
6. How is cervical cancer detected?
Cervical cancer can be detected by taking a sample from the cervix, this is sometimes called a biopsy. This may be done because of an abnormal cervical screening test (smear) or you have symptoms of cervical cancer or during a pelvic examination your doctor sees something they are concerned about.
7. Is cervical cancer hereditary?
Cervical cancer is not caused by genetic changes that can be passed down through families, so is not thought to be hereditary.
8. What is the risk of developing cervical cancer?
It has been estimated that in the UK, a woman's lifetime risk of developing cervical cancer if she does not attend cervical screening is 1.7% . This means that without screening, about one in 60 women will develop cervical cancer. Cervical screening can prevent around seven out of 10 cancers . This means that with screening, about one in 200 women will develop cervical cancer.
Cervical Cancer Treatment
1. I have had an early cervical cancer treated by a LLETZ biopsy - will I now need a hysterectomy?
No, not necessarily. Some very early cervical cancers that are diagnosed can be treated by a LLETZ or loop excision. The diagnosis of a very early cervical cancer is often made following the result of a biopsy taken at the colposcopy clinic. The specialists who examine this specimen under the microscope may see a tiny cancer, which is so small and surrounded by normal tissue that no further treatment is recommended. The doctors may, however recommend further investigation in the form of a further biopsy to check that there is no abnormal tissue in the surrounding area where the initial biopsy was taken from.
2. I need a hysterectomy, what does this mean?
A hysterectomy is the surgical removal of the uterus and the cervix. It is usually undertaken under a general anaesthetic.
A hysterectomy can be given as a treatment for conditions other than cervical cancer. Whilst there are different types of hysterectomy a radical hysterectomy (Wertheim) is the standard type advised by gynae-oncologist for women diagnosed with cervical cancer. This is because it is important that the surgeon removes the cervix and uterus in one whole piece so that he/she can clearly see the surrounding tissue, such as the upper vaginal tissue, tissue around the cervix and uterus called the parametrium, and pelvic lymph glands (nodes).
Radical (Wertheim) Hysterectomy
A radical hysterectomy (often referred to as a Wertheim hysterectomy) is when the surgeon removes the uterus and cervix, and some of the tissues which normally lie closest to the cervix. These are the top part of the vagina, parametrium (the tissue below the fallopian tubes which occupies the space between the uterus and the sides of the pelvis) and lymph nodes. The doctor may also remove the ovaries if he/she feels that there is a risk of abnormality i.e. one or both may look larger than normal or if the patient requests this. If the ovaries are removed then Hormone Replacement Therapy (HRT) may be recommended to replace hormones produced by the ovaries. Without functioning ovaries or HRT the woman would experience an early menopause. Some women, following discussion with their consultant/GP/specialist nurse choose not to take HRT after a hysterectomy.
3. Where will the scar be?
Yes, it is usually a horizontal line just above your pubic hair line. It tends to heal extremely well and many women can hardly see the scar once it is healed. Sometimes a doctor will need to make a vertical incision - if this is the case the doctor will explain to you where the scar will be and why he will need to perform the operation in this way. It is usually for a reason other than the cancer, such as the womb being a bit larger than normal, or a cyst is present on one of the ovaries. In some centres it is possible for the operation to be carried out using laparoscopic (keyhole) surgery
4. What will I experience straight after a radical hysterectomy?
You will usually have a drip (small plastic tube) in your arm. This means that fluids can be given to you, without you needing to drink. A catheter (small tube) will usually be put into your bladder whilst you are asleep. This drains any urine into a bag. The drip and the catheter will usually be removed very soon after your operation - when your body has recovered and you can drink independently. The catheter may need to stay longer, sometimes up to five days. This is to let the bladder recover fully after the surgery. Even when it is removed it is important that bladder function is measured to ensure that it doesn't overfill. In a few cases it is necessary to continue catheterising the bladder to make sure it empties properly. This can go on for a few weeks or even a month or two in some cases. A dressing will cover your scar - you may have stitches or clips which will need to be removed some days (usually between five and ten) after the operation.
You may have one or more drains in place. These drain any blood or serous fluid from the scar area into a bag or bottle. This helps prevent infection and reduces bruising. These drains are taken out within days of the operation. You will be given pain killers to minimise any discomfort that you experience. This may be in the form of an epidural, hand held pump (called PCA where you can press the button when you need more pain relief), injections or/and suppositories. When you are able to drink, then you can have medications by mouth such as tablets. The staff looking after you will talk to you about your pain relief choices before your operation.
5. Will I still be able to have sex after a radical hysterectomy?
Yes, the vaginal tissues are very stretchy; this means that although the top part of the vagina is removed, you will be able to have full intercourse usually without any difficulties. Most people say that they do not notice any difference (however women who have had radiotherapy will notice some changes to the vagina after treatment). The most common changes a woman may feel are: the absence of the uterus moving during orgasm - this does not make the orgasm less pleasurable, if the ovaries have been removed and no HRT has been taken the vaginal tissues may feel a little dry. HRT or a vaginal lubricant should be helpful. Psycho-sexual issues - how a woman (or her partner) feel about their body or/and about sex may affect their arousal and therefore their satisfaction with intercourse. If this is a problem then an appointment with a psycho-sexual counsellor can be arranged to discuss it further. You can arrange an appointment via your GP, your hospital consultant or specialist nurse.
6. Will having my lymph nodes removed affect me?
The lymph glands (or lymph nodes) in the pelvis are like those that may be affected in the neck if you have a sore throat or a cold. You cannot tell for certain if lymph nodes are free from disease unless you remove them and look at them under the microscope. There is usually no noticeable difference for you if some of these are removed. Your immune system is not compromised. There is a small risk that you could develop lymphoedema after the operation.
7. What is lymphoedema?
Lymphoedema is the accumulation of lymphatic fluid. It is not dangerous, but can be uncomfortable as one leg or both can swell after a hysterectomy. If you do develop this you should report it to your GP, consultant or specialist nurse. They will confirm that it is lymphoedema and then refer you to a specialist who will advise you how to ensure the lymphoedema is kept to a minimum. Before your operation do ask your specialist nurse what you should do to help prevent lymphoedema occurring after the operation, what signs to look for and what services are available should you develop it.
8. What is pelvic exenteration surgery?
If, after initial treatment, your cancer comes back in the pelvic area, it may be possible to have an operation called a pelvic exenteration. The exact details of this operation varies from patient to patient but it is an operation that involves removing all of the structures in the pelvic area and can include the womb, cervix, vagina, ovaries, bladder and the lower end of the large bowel (rectum). This type of operation is only suitable for a small number of women and you will need to have various investigations and scans to see if it is possible.
Part of the operation involves creating two openings (stomas) on the abdominal wall. These are needed because the operation removes the bladder and the rectum and you will need two stoma bags: one to collect your bowel motions and one for urine. These stomas are known as a colostomy and a urostomy. Before the operation you will see a nurse who specialises in the care of people with stomas (a stoma nurse). The nurse will explain all about stomas and how to look after them and can answer any questions you may have. The stoma nurse will also visit you after the operation to help you.
The operation also usually involves making (reconstructing) a new vagina.
A pelvic exenteration is a big operation, and many women find that recovery can be difficult, both physically and emotionally. It is important that you understand exactly how the operation may affect you so it is a good idea to talk to your surgeon or specialist nurse. They can support you in deciding whether pelvic exenteration is right for you.
You may find it helpful to join our Jo's Cervical Cancer Trust online forum community. There are other women who have gone through pelvic exenteration who would be willing to share their stories and help support you through your surgery and recovery.
I have been advised to have pelvic radiotherapy treatment for my cancer. Why have I not been offered a hysterectomy?
Sometimes radiotherapy treatment can be more effective than surgical treatment. Radiotherapy treatment can be used to cure a woman with a cervical cancer diagnosis. It will depend on the size and place of the cancer as to whether an operation or/and radiotherapy is offered/recommended.
9. How do they treat a cervical cancer with radiotherapy?
Radiotherapy cancer treatment uses radiation x-rays directed at the body. For cervical cancer you will usually be recommended to have external and internal radiotherapy (brachytherapy).
What is the difference between external and internal radiotherapy?
External radiotherapy is where beams are directed from a machine to your body - the machine is similar to an x-ray machine. This treatment is often administered in short doses on a daily basis for some weeks. Internal radiotherapy (brachytherapy) is often given after a course of external radiotherapy has been given. This is where a radioactive source is put into your cervix via your vagina. You need to stay in hospital for a few days for brachytherapy. The time that this needs to stay in the cervix can vary, so do ask your specialist nurse or doctor for further information.
10. Are there side effects after radiotherapy?
There are potential side effects with any treatment. The side effects with radiotherapy are less now than they used to be. This is because of the advancement of technology - treatments are more precise now. We also have more knowledge now as to how to prevent or minimise side effects - during and after treatment.
The most common side effects are those to the vagina, bowel and bladder. The vaginal tissues can become drier and less stretchy and the walls of the vagina can, in some circumstances stick together. The radiotherapy staff will advise you about using vaginal dilators and lubricants to prevent or minimise these effects. Sexual intercourse can be continued during and after treatment. If discomfort is experienced during intercourse do speak to your specialist nurse or radiographer who will advise you further. Psycho-sexual issues - how a woman, (or her partner), feels about their body or/and about sex may affect arousal and therefore their satisfaction with intercourse. If this is a problem you can see a psycho-sexual counsellor to discuss it further. You can arrange an appointment via your G.P, your hospital consultant or specialist nurse.
11. My doctor has said that I will have radiotherapy and chemotherapy - does this mean my cancer is very advanced?
No, not necessarily. Sometimes chemotherapy and radiotherapy (known as chemo-radiotherapy) are used together both early and for advanced cancer. The chemotherapy appears, in some situations, to make the radiotherapy more effective.
12. Is chemotherapy ever used on its own to treat a cervical cancer?
Yes, it can be used on its own. Sometimes this is because the cancer is advanced or it has come back. Sometimes it is used before another treatment is started - such as radiotherapy.
The BGCS wishes to thank Target Ovarian Cancer, the Eve Appeal, Ovarian Cancer Action and Jo's Trust for supplying the questions and answers as well assistance from the NFGON for their help in preparation of this text.