Womb cancer (also referred to as endometrial or uterine cancer) is the most common gynaecological cancer, with over 9,300 cases diagnosed every year in the UK.
Womb cancer is most common in women who are post-menopausal (the average age for menopause in the UK is 51) and is very rare in people under 40 years old.
The main symptom of womb cancer is abnormal vaginal bleeding. This means bleeding that is different to whatever is normal for YOU. It includes:
- post-menopausal bleeding
- unusually heavy periods
- bleeding in between periods or after sex
- bloody/pink/brown vaginal discharge.
Over 90% of womb cancers are diagnosed due to the patient reporting their post-menopausal/unusual bleeding. Most people who have a womb cancer will experience symptoms, and if diagnosed at an early stage, womb cancer can be successfully treated and has a very high survival rate.
If you are experiencing any of the symptoms of womb cancer, it’s important to remember that it is unlikely that you will actually have womb cancer, and your symptoms will be due to something less serious than cancer, like uterine polyps, for example. That being said, we strongly recommend reporting anything unusual to your doctor, just to be on the safe side.
Reporting Symptoms to Your GP
Q: I have had some abnormal bleeding. What should I do?
A: Whilst it’s unlikely that your abnormal bleeding is a sign that you have womb cancer, we still advise that you report it to your GP, regardless of the coronavirus situation.
Q: Will I be able to see my GP about my unusual bleeding?
A: Before Covid-19, we would normally ask you to make an appointment with you GP as soon as you can to discuss your abnormal vaginal bleeding/discharge. However, this now won’t be possible for many people, as more and more GP surgeries are switching to a telephone appointment system. If you phone your GP surgery to make an appointment about your symptoms, and are told that a face-to-face appointment isn’t available at the moment, please still arrange to talk to your doctor over the phone and go through your symptoms and concerns with them.
Q: I am worried I have womb cancer and have a telephone appointment with my GP booked in. What will happen during the phone call?
A: Have a history/diary of your symptoms written down, and go through this with your GP. You can expect to be asked questions about any pre-existing gynae conditions, any previous cancer diagnoses, cervical screening history, whether you are using any hormonal contraception etc. Your doctor will then assess whether they feel you need to be referred for a further investigation, at the gynaecology department of a local hospital.
Q: Under what circumstances would my GP decide to refer me?
A: Ideally, all potential womb cancer symptoms would be investigated as soon as possible. However, due to the coronavirus pandemic, these referrals need to be triaged by GPs, and the risk balanced between later diagnosis and the possibility of contracting coronavirus . For example, someone in their 60s, who has been experiencing post-menopausal bleeding for six months is likely to be considered a higher risk of having cancer than someone in their mid-20s, who has been taking the combined contraceptive pill for several years and recently bled after sexual intercourse. In this case, the person in their 20s might be asked to call back in a few weeks if symptoms persist, and the person in their 60s is likely to be referred for testing as soon as possible. This isn’t to say that one person is more important than the other, but hospital resources will be limited for the foreseeable future and the more likely someone is to have a womb cancer, the sooner they need to be seen by a specialist.
Your Referral to the Gynae Department
Q: My GP has referred me to the local hospital’s gynae department because I’ve had some worrying bleeding. How soon will I have my appointment?
A: Anyone with a suspected cancer is referred by their GP to the relevant hospital department for further investigation on a ‘Two Week Wait’ (2WW) pathway. The coronavirus situation means that some of these 2WW referrals won’t happen within this timeframe. Everyone’s situation will be assessed individually by specialist gynaecology cancer doctors, who are now having to triage (put in order of priority) these increasingly limited appointments. Your referral appointment will depend on how Covid-19 is affecting the NHS resources in your area. We understand that this may cause a lot of anxiety and distress for some people, and absolutely appreciate that hearing your appointment is delayed can be very hard to cope with.
Q: I’ve been referred to hospital on the Two Week Wait, does this mean I have womb cancer?
A: A 2WW referral does not mean that your GP knows that you have cancer, it simply means that the symptoms you have presented and the information you have given them could potentially indicate a cancer. Your GP, along with the doctors and nurses at the hospital, want to check this out as soon as possible. Think of it as a referral to investigate and rule out cancer, rather than a probable cancer diagnosis.
Q: What will happen at my gynae appointment?
A: Let’s take post-menopausal bleeding (PMB) as the reason for this appointment, as it’s the most common symptom of womb cancer.
The typical scenario would be the doctors and nurses at the hospital looking at your case; length of symptoms, medical history etc. then performing a trans-vaginal ultrasound (TVU), which is a scan to look at the thickness of the womb lining, done by inserting a probe into the vagina. Then, if the womb lining is looking thicker than average, (anything over 5mm) a pipelle biopsy may be carried out during the TVU. A pipelle biopsy means that a small sample of your womb lining is taken via a thin, straw-like tube that is inserted into the vagina and through the cervix, which is the neck of the womb.
Alternatively, your doctors may decide that it is better to do a hysteroscopy, which allows the doctor to look more closely at the womb by inserting a hysteroscope (a long, thin tube with a light and camera at the end) through the vagina and into the womb. A biopsy of the womb lining may then be taken during the hysteroscopy.
Q: When will I get the results of my biopsy?
A: We would hope that results will be returned within a couple of weeks, if not sooner. Practice around the country varies, and results can be given either face to face or in a letter. During this pandemic, it is likely that where possible, all consultations will be done over the phone – including discussing scan and biopsy results. If you haven’t received any form of results after two weeks, please call to chase up with the nurse/admin/secretary.
If You’ve Just Been Diagnosed with Womb Cancer
Q: I’ve received my biopsy results and I have womb cancer. What happens now?
A: Being diagnosed with cancer during these uncertain times is understandably going to be much more distressing for you, and we are so sorry you are going through this. Depending on your test results, history of symptoms (e.g. length of post-menopausal bleeding) and any physical discomfort you may have, your doctors will decide on what the next best steps are for you.
Prior to COVID-19: Each cancer case is given a grade and stage. The grade describes what the cancer cells look like under a microscope. There are three grades, grade 1, 2 and 3 (or I, II and III). Grade 1 is also known as ‘low grade’ and means that the cancer cells look more like normal cells – they are ‘well differentiated’. Grade 3 is also known as ‘high grade’ and means that the cancer cells look very different from normal cells – they are ‘poorly differentiated’. Grade 2 cancer cells are ‘moderately differentiated’ meaning that they don’t look like normal cells, but aren’t ‘abnormal’ either. After the biopsy is tested and cells are graded, an MRI or CT scan is carried out so that the stage of the cancer can be estimated. Staging essentially describes where the growth is within the womb, whether it has grown into the outer layer of the womb muscle, or spread outside the womb. There are four stages, stage 1, 2, 3 and 4 (or I, II, III and IV). The earlier the stage, the smaller and more localised (in the area it started, e.g. the womb) the cancer is. The earlier the stage, the higher the chance of the cancer being treated successfully.
During COVID-19: The main difference we know of at the moment, is a reduction in the number of patients having MRI/CT scans. Prior to Covid-19, a CT and/or MRI scan was part of the diagnostic process. Depending on which hospital you are being treated at, you might only have a scan if your doctors feel that your hysteroscopy and biopsy haven’t quite built up a clear enough picture of your situation.
Q: Why are some people with womb cancer having scans but I’ve been told I don’t need one?
A: If you have been told you don’t need a scan, it can be frustrating if you are talking to someone else with womb cancer (for example on an online forum) and you hear that they are going to have one. Please try and not focus too much on this. The reason you aren’t having a scan is because resources at your hospital are currently limited, or your cancer is at an earlier stage/grade, but your medical team will only make this decision if it is safe for you.
An example of a scan not being needed: If you have a ‘short history’ e.g. post-menopausal bleeding for two weeks and the microscope shows that your cancel cells are ‘low grade’. This is enough to suggest that your cancer is at a very early stage, and a scan is unlikely to give any extra information.
An example of a scan potentially being needed: If you are a younger woman in your 20s or 30s and have been experiencing heavy bleeding for two years. This is a less ‘typical’ picture of womb cancer, and would need to be investigated further before any treatment is decided on.
Q: I have been diagnosed with an early womb cancer. What happens now?
A: Everyone with a womb cancer (or any gynae cancer) is discussed at the gynae oncology multi-disciplinary team (MDT) meeting, which happens every week at your hospital. The MDT meeting means that everyone involved in looking after cancer patients (consultants, surgeons, clinical nurse specialists, radiation therapists, chemotherapy nurses) decide together what the plan of action is for you. These meetings continue to happen every week by video–conferencing, with all your doctors present. There is evidence that losing weight, if needed, can improve the course of your disease and we would encourage you to maintain a health weight to improve your outcome.
Prior to COVID-19: People with early stage womb cancers would have an operation called a hysterectomy (removal of the womb). An early womb cancer will not have spread outside of the womb, meaning a hysterectomy is often the only treatment needed.
During COVID-19: The treatment for early stage womb cancer is probably the thing that’s the most likely to change since coronavirus. Now, if your cancer is at an early enough stage, you will not automatically have a hysterectomy. You may be given progesterone in the form of either tablets or the mirena coil for a period of three to six months, when your case will be reassessed by the MDT.
Q: Why am I being offered the coil instead of surgery?
A: The majority of womb cancers are linked to an excess of the oestrogen hormone. When oestrogen is unopposed, i.e. not balanced by the progesterone hormone, there is a higher chance of a womb cancer developing. The mirena coil is a small device that is inserted into the womb via the vagina, and releases progesterone. Having the coil and/or taking progesterone tablets, will balance the high levels of oestrogen and will slow down or stop your cancer developing. In some womb cancers at their very earliest stage, progesterone may actually revert this cell changes back to a ‘pre-cancer’ state. If your cancer is at an early enough stage, the coil may be considered a safer choice, as there are increased risks associated with surgery (as well as chemotherapy and radiotherapy) if you contract coronavirus post-operation.
There are two reasons for being offered the coil/tablets:
- Your team have decided your cancer is at an early enough stage for this to be a safe option.
- Fewer people are able to have hysterectomies due to the resources, including theatre space and equipment being needed by coronavirus patients.
When possible, the coil/tablets mean that surgery can be postponed and reconsidered in three to six months, when the pandemic situation is hopefully clearer and there are fewer coronavirus patients being admitted to hospital.
Q: I am due to have my hysterectomy next week. Will I be tested for coronavirus?
A: Guidelines are changing continuously, but at the time of writing this, if you are due to have any type of surgery, you will only be tested for coronavirus if you have symptoms. We imagine that eventually all cancer patients will be tested, but we’re not at that stage yet.
Q: What happens if I am booked in for my hysterectomy but test positive for coronavirus?
A: If your test shows that you have coronavirus, your surgery will need to be postponed. People with coronavirus should not be operated on. You will be told by your team to self-isolate at home for the recommended time, and then be re-tested. Once your test is negative, your hysterectomy can be rescheduled for as soon as possible. Covid-19 is a virus that affects the lungs and respiratory system. Unless absolutely necessary, it isn’t sensible to have an anaesthetic when affected by coronavirus.
Q: Why has my hysterectomy been cancelled if I don’t have coronavirus?
A: If your scheduled hysterectomy is cancelled, it’s because there isn’t the capacity to perform the surgery at your hospital. This could be a shortage of anaesthetists, theatre space, theatre staff etc. Therefore your doctors can’t go ahead with planned treatment. Your surgery will only be postponed if your team consider it safe to do so, and if your hysterectomy is an urgent, necessary part of your cancer treatment, it will go ahead. The date of surgery and venue may be changed, for example you may be asked to go to private hospital a few dates later, still under free NHS care). This is all for your safety, although we know that cancellation of surgery will be difficult for you and understandably increase your anxiety. Please reach out to your assigned gynae CNS (clinical nurse specialist) or our Ask Eve team if you need support.
Q: I had a hysterectomy a few weeks ago and now need further treatment. Will this be affected by Covid-19?
A: Sometimes, patients with womb cancer will need to have chemotherapy and/or radiotherapy, but not at the same time. For your health, wellbeing and safety, your MDT will now consider whether or not giving you chemo/radiotherapy is the right thing to do. They will compare the risks and benefits of chemo/radiotherapy, as these treatments will weaken your immune system, meaning you will be at a higher risk of contracting Covid-19. Coronavirus can be life-threatening, so for your safety, your team may advise to not go ahead with these planned therapies.
Q: I am due to have chemo/radiotherapy this week and it hasn’t been cancelled. Do I need to do anything?
A: You may find that your chemo or radiotherapy team call you this week to say they are cancelling your treatment. Unfortunately, this might even happen a day or so before you are due to go into hospital, which can feel confusing and frightening. Everything is moving very quickly, and information surrounding the Covid-19 pandemic is changing on a daily basis. If your chemotherapy or radiotherapy is suddenly cancelled, this is because your team feel that it would be too much of a risk to your health at the moment. These treatments are administered over a number of months, meaning that as the pandemic escalates, so does your risk of infection. It is also sadly a case of the hospital’s cancer facilities being depleted by doctors and nurses caring for patients with Covid-19.
Q: I am due to start chemo/radiotherapy but have tested positive for Covid-19. What will happen?
A: You will not be able to start your chemotherapy or radiotherapy until you test negative for coronavirus. Cancer patients who test positive for coronavirus will become ‘corona patients’ until they have cleared the virus. If you have coronavirus and you start your chemo/radiotherapy treatment, it will have more risks than benefits to your health.
Q: How long will my treatment be delayed if I test positive for coronavirus?
A: It’s unfortunately an impossible question to answer at the moment. The timeframe will depend on your MDT, your health and the hospital resources available. Treatment advice for cancer patients is changing week by week, which we know is scary and the fear of the unknown can be hard to cope with.
Q: What happens if I am in the middle of chemo or radiotherapy for my womb cancer and I get coronavirus?
A: If you are mid-way through your chemo or radiotherapy, then your doctors will have assess whether or not you can finish your current course of treatment. Each hospital and MDT will have a different approach, and there isn’t a blanket rule or answer to this question at the moment. If you are in the middle of radiotherapy, you might be able to carry on with this current course. Your team will evaluate the safety of doing this, and whether they have the resourced available to safely look after ‘Covid-positive’ patients. The same assessment applies if you are mid-chemotherapy cycle, but it is more likely that your team will suggest you discontinue your treatment for the time being.
Q: I had womb cancer treatment last year and am due to have a check-up appointment. Will this go ahead?
A: Most oncology (cancer) follow-up appointments are currently being done over the phone rather than face-to-face, unless an examination is required. Your team is still there for you if you need to talk to them, and actively encourage you to phone and ask any questions you may have. We know this isn’t the same as a face-to-face appointment, and appreciate that extra support might be needed from your CNS or our Ask Eve service around the time of your postponed check-up.