As the Covid-19 pandemic continues, our beloved NHS is being put under more strain than ever before. Every aspect of the NHS has been affected by Covid-19, whether directly or indirectly. This unfortunately includes gynaecology oncology (cancer) departments. Whilst gynaecology departments are not directly related to Covid-19 (unlike A&E for example), their resources (staff, equipment and space) are becoming increasingly limited. It’s our job at The Eve Appeal to provide you with as much relevant information as we can, and for our free information service, Ask Eve, to answer your gynae-related questions and provide you with advice and support during this time of uncertainty.
Vulval cancer is the second rarest gynaecological cancer, with around 1,300 cases diagnosed every year in the UK.
Like most cancers, the risk of vulval cancer increases as we get older, with around 80% of vulval cancer cases diagnosed in people over 60 years old.
The main symptoms of vulval cancer are:
- A lasting itch
- Pain or soreness
- Thickened, raised, red, white or dark patches on the skin of the vulva
- An open sore or growth visible on the skin
- A mole on the vulva that changes shape or colour
- A lump or swelling in the vulva
If you are experiencing any of the symptoms of vulval cancer, it’s important to remember that it is unlikely that you will actually have vulval cancer and your symptoms will be due to something less serious than cancer, such as a skin irritation for example. That being said, we strongly recommend reporting anything unusual to your doctor, just to be on the safe side. If you want to talk through any of your concerns with our Ask Eve team before calling your GP, please send us a message on firstname.lastname@example.org
Q: I have noticed some skin changes and itchiness on my vulva but don’t want to bother my doctor. What can I do?
A: Changes to your vulval skin, including a change in skin colour and itchiness, are usually due to a non-cancerous skin condition. This can be treated successfully with a prescribed ointment.
Prior to Covid-19: We would advise that you make an appointment to see your GP, have your skin problem looked at get a prescription if needed. In very rare cases, skin changes to the vulva could be the beginning of a vulval cancer.
During Covid-19: We suggest you phone your GP surgery for a telephone consultation in the first instance, as face-to-face appointments are currently very limited. To help your doctor with this phone consultation, we suggest you write down a description of the skin changes and exactly where they are on your vulva. Imagining your vulva as a clock face, e.g. right labia is 3 or 9 depending on the perspective, the anus is 6 and so on. We suggest you take photos for your own records, as if it gets worse you will have evidence of the changes. You might want to consider asking your doctor if they would like you to send a photo(s) to them via a secure email address. This might feel like a strange thing to say, but it’s actually common practice known as ‘telemedicine’ for when patients can’t be seen face to face. If you can resist Dr Google, please do! Comparing the photos of your vulva with those on the internet is going to do more harm than good – a medical professional needs to have a look and we don’t want people to worry unnecessarily. Having information such as when you first noticed these symptoms written down will be a big help for your GP. They will assess whether or not they can manage this problem initially over the phone by prescribing an ointment treatment, or whether they feel the need to see you for an examination. When you leave your GP consultation either on the phone or face-to-face, make sure you find out when your doctor wants to hear from you again if things aren’t improving. It’s good to get timeline from them as this will help communication between you and your doctor.
Q: What happens if I have had some ointment for my itchiness and it hasn’t worked, what do I do next?
A: It can take a couple of months for the ointments to have an effect. If this is a non-cancerous condition (which is much more likely), your doctor would hope for you to experience some relief/improvements within the first two to three weeks of using the ointment. If there is no change in two months, report back to your GP. If your skin change/itchiness is getting worse rather than better whilst using the ointment, then we advise you to let your doctor know by telephone, so they can reassess and decide whether they need to see you either for the first time, or again.
Q: I have read on the internet that lichen sclerosus is something that can cause itchiness and skin changes. What is it and how do I know if I have it?
A: Lichen sclerosus (LS) is an inflammatory skin condition, that isn’t contagious. It causes a lightening of the tone of the skin associated with scarring and irritation, not unlike eczema and mainly affects the genitals and anus. These areas can become very itchy, but try as best you can to avoid scratching as this will make the skin very sore. LS is generally diagnosed by visual inspection, meaning an appointment with your GP will be needed. The current situation with Covid-19 means your doctor may not be able to offer a face-to-face appointment straight away, so it’s about giving an accurate description of your skin changes over the phone and providing a photograph if needed. Your doctor might prescribe an ointment for you to try, which won’t cause any harm if it’s not the right ointment for you.
Q: Does LS turn into cancer?
A: In some cases, lichen sclerosus can turn into an early vulval cancer. It’s hard to know the exact numbers, as we think that many cases of LS go undiagnosed, but about 4% of women with LS will go on to develop vulval cancer. This compares to a background risk of 0.3% in the general population. Around 39% of vulval cancer cases are associated with lichen sclerosus. To summarise, LS rarely (4% chance) turns into cancer, but around 39% of people with vulval cancer have had lichen sclerosus.
Q: If I have LS, how long would it take to turn into cancer?
A: There unfortunately isn’t any good data on this as LS is diagnosed at various stages. It’s really difficult to say as often the first presentation of LS to a doctor is when the person has already developed vulval cancer.
Q: I have found a lump on my vulva. I don’t know how long it’s been there. What do I do?
A: The same as the itchiness/skin change advice: phone your GP, describe the lump and possibly send a photo. It’s important to describe where the lump is on your vulva, as there are a number of common ‘vulva lump’ conditions that are not cancerous at all. For example, a blocked Bartholin’s gland, which is the gland that produces an oily substance when a woman is sexually aroused. Bartholin’s glands can become blocked for no particular reason, causing a cyst-like lump that can get bigger fairly quickly. To help your doctor in working out if this could be the cause of your lump, it would be really useful to help them locate where it is on your vulval anatomy. Imagine your vulva as a clock face, e.g. right labia is 3 or 9 depending on the perspective, the anus is 6 and so on. Another common type of vulval lump/bump is little pimple-like cyst, which can be caused by blocked hair follicles. What colour is the lump(s)? Tender or itchy to touch? Your GP will ask you to monitor the lump and let them know if it’s getting bigger/changing. Again, ask your GP for a timeframe on when to report back. Most of the time vulval lumps will go away on their own.
Q: My lump is getting bigger and it’s been 3 weeks since I spoke to my GP. I’m now worried – what do I do?
A: Any change or growth in the lump needs to be reported to your GP.
Q: I am seeing my GP this week because my vulva symptoms have worsened. What can I expect?
A: The experience of going to your GP surgery and waiting for your appointment will be very different to pre-coronavirus times. Here’s what you can expect:
- When you arrive at the clinic, instead of going straight into the reception/waiting room, you will need to either wait in your car or stand outside in a queue (2m apart).
- You will need to phone the reception team inside and tell them that you have arrived. The receptionist will check with you that you don’t have any coronavirus symptoms. If you do, you will need to go home without having your appointment.
- The receptionist will phone you when they doctor/nurse is ready for you. You will be met at the doors to the clinic and directed to your room.
Make sure you go to the loo before leaving the house as this may not be easy at the GP surgery.
Be prepared for your GP to examine your vulva, also make sure you can describe the changes, and give your medical history. Your GP will then assess whether or not they need to continue to monitor you or changes or consider asking for a specialist consultation i.e. a hospital referral. As well as your symptoms, they will be taking into account the risks vs benefits of you going into a hospital environment and availability of resources.
Q: I have had LS for a few years and been fine using Dermovate ointment, but now it’s flaring up and not going away. Will my doctor see me?
A: Phone your doctor, explain the change in your LS and that your normal treatment isn’t working. Your doctor can advise you on potentially increasing your usage of the ointment treatment. If this doesn’t make a difference in a few weeks, your GP will most likely want to see you to examine the vulval skin.
Q: My GP has decided that I need a hospital referral to investigate my symptoms. Who will this be with?
A: Your referral will be with either a dermatologist with a specialist interest in vulval skin conditions, or more likely, a gynaecologist with an interest in vulval skin conditions.
Q: My GP has referred me to a gynaecologist for my vulval skin problems. When will this appointment be?
Before Covid-19: For this sort of referral, you would be seen within two weeks, known as the ‘Two-Week Wait’ (2WW). Anyone with a suspected cancer is put on the 2WW pathway. This doesn’t mean that you have cancer, but your doctors want to rule it out and investigate as soon as possible.
During Covid-19: Whilst we are going through this pandemic, it may be that you have to wait longer for this appointment. Be prepared for this to be extended by a further two weeks, as we hope your appointment will be within a month of referral. Because we don’t know how the Covid-19 situation is going to evolve, your waiting time may be extended even further, but we just don’t know at the moment. Being told you need a hospital referral and then having to wait for that appointment a lot longer than you had anticipated can understandably cause worry and distress. If you want to talk through your worries, please don’t hesitate to phone your GP or our Ask Eve service for some support.
Q: Why has my referral from my GP that was supposed to be next week just been cancelled?
A: A specialist consultant at the hospital has looked at the referral from your GP, and weighed up the risks and benefits of you coming into the hospital for this appointment. They will have triaged (decided the order of) how urgent this referral needs to be. If your appointment is cancelled, it’s because the consultant has assessed that the risks of you coming into the hospital, (which are not safe places at the moment) outweigh the benefits of being seen by the specialist. Appointments will be cancelled by letter or phone, depending on the hospital’s protocol. The hospital will contact you and explain why they have cancelled – e.g. they have seen the referral from GP, and will let your GP know what to do next, prescribe ointment/monitor skin etc. We don’t know if your GP will automatically contact you with an update, again it depends on how things work in your area. If you haven’t heard from your GP a week after the hospital cancellation, please contact them to find out the next step. Your referral will be kept on the hospital database and you usually won’t have to go back to your GP for another referral once Covid-19 has settled. You will normally automatically be invited for the original appointment, as soon as the hospital have the capacity to carry out the investigation. Please remember if your symptoms clear up or improve, to let your GP know so they can cancel the referral request. Equally, please do communicate any worsening of symptoms to your GP as well.
Q: My referral appointment is next week. What can I expect?
A: You can expect the doctors to do an examination of the affected area. It’s likely that by looking at your skin, they will be able to give you a preliminary diagnosis. It’s also very possible that they will want to take a small biopsy (a sample of the skin) to send off for testing.
Q: I’ve been told that I will probably have a biopsy at my appointment. Will this hurt?
A: Having a biopsy can cause some discomfort for a short period of time afterwards. You will be given an injection of local anaesthetic in the affected area e.g. where your vulval lump is. This feels the same as when you get an injection at the dentist, and its job is to numb the area. This is normal practice and doesn’t change due to Covid-19. Most biopsies carried out on vulval skin are called ‘punch biopsies’, which essentially means a very small sample is taken. If it’s safe for you to have paracetamol and ibuprofen, then bring some with you to the appointment so you can take it after your biopsy and examination are over.
Q: I have had my referral appointment and biopsy taken. When will I get my results?
A: Typically results are back for this type of biopsy within two to four weeks. However, it’s worth checking with the doctors if they think there will be a delay with your results due to Covid-19.
Q: How will I get my biopsy results?
A: Results can come in different ways: an appointment, phone call or letter. Due to Covid-19, it is highly unlikely you will receive your results in a face-to-face appointment. Results appointments have been moved to phone calls or letters, and during the pandemic, you will most likely receive a phone call, followed by a letter.
Q: My biopsy results say that I have VIN. What is this, is it cancer?
A: No, VIN isn’t cancer. VIN stands for vulval intraepithelial neoplasia. It essentially means changes to the vulval skin cells. VIN can potentially develop into cancer in the future but can sometimes be treated with special creams or be surgically removed. Sometimes VIN will go away by itself. The change from VIN to cancer does not typically happen quickly and you doctor may recommend observing the area before recommending any treatment. If you are a smoker then it is important you consider quitting as smoking can makes this problem worse and will increase the risk of it developing into a cancer.
Before Covid-19: If you have VIN of any stage, you would normally be put on a surveillance programme and come back to the hospital for a check-up once every three to twelve months.
During Covid-19: These appointments will be postponed. You will stay on the database and be automatically invited for a check-up once the surveillance programme is up and running again. If your skin or lump gets worse, you should phone the hospital team and talk through your symptoms. They will then decide whether they need to see you. If you’re not sure whether or not to phone the gynae team, please don’t hesitate to get in touch with Ask Eve, and the team can talk through your worries with you.
Q: I was told I had VIN a few months ago and my check-up has just been cancelled. I’m worried as this is the stage before cancer.
A: We understand that this is really worrying. The important thing to remember in this situation, is that if you have had no change to your symptoms/condition then it is very likely that there is nothing new to worry about, and the VIN hasn’t developed into a cancer at this point. You will be invited for your check-up as soon as possible, but do phone your team for advice if you need to. They are there for you and so are Ask Eve. Your gynae team have assessed that it’s safe for you to wait for your appointment, but we know that this won’t stop feelings of worry and frustration. Please do get in touch with us if you want to talk.
Q: Will VIN go away on its own?
A: Yes, sometimes it does. It can take a few months for VIN to reverse, equally, it typically takes a long time for VIN to develop into a cancer. Very few people who have any type of VIN will ever go on to develop vulval cancer.
Q: I’ve just had a phone call from the hospital to say my biopsy shows I have cancer. What is the next step?
A: This will most likely be told to you over the phone. This is difficult information to be told at any time, but especially hard when you aren’t face-to-face with the person delivering the news. Your doctor or nurse will also explain to you how they want to treat your cancer in this phone call. Ask them for the phone number of your main point of contact, for example a gynae CNS (cancer nurse specialist). The size of lump/affected skin and the length of your symptoms etc. will guide them as to whether or not you need further tests.
Q: How will they know what stage I am?
A: Vulval cancer is a cancer in your vulval skin, and early stage cancers can generally be removed by surgery. Looking at your initial examination, the biopsy results and the length of your symptoms, your doctors will be able to assess the likelihood of the cancer having spread into the tissue surrounding the vulva. Depending on their assessment, you will either have:
- The affected area removed by surgery under a general anaesthetic, with some healthy tissue around it (known as a margin) to ensure it is all removed.
- If the doctors are concerned the cancer might have moved outside the vulva, they will also remove nearby lymph nodes during the surgery, and test these under the microscope, to see if cancer cells have spread.
- If they are unsure before surgery, they may do a CT scan, to give them more information and a clearer picture of your disease.
This protocol is the same during Covid-19 as it was prior to the pandemic.
Q: I have my operation booked in and I’m scared it will be cancelled.
A: Every effort is being made to keep resources (doctors, nurses, theatre space etc.) so that hospitals can continue to treat cancer patients. We don’t expect surgery for vulval cancer to be postponed, unless the patient tests positive for coronavirus. People will not automatically be tested, only if they have symptoms but we hope this will change soon, and everyone will be tested. If you were to have surgery whilst you have coronavirus, this could have serious consequences for your recovery, hence why surgeries are being cancelled for people with Covid-19.
Q: I’ve had surgery for my vulval cancer and they didn’t take lymph nodes. What do I do now?
A: You didn’t have lymph nodes removed because the doctors will have assessed that it’s unlikely the cancer has spread outside of the vulva. This will be confirmed by your post-operative results. If the margins around the affected area are clear, it usually means your cancer has been treated successfully with this operation.
Q: How long will it take after my surgery to get the results?
A: Typically within two to four weeks, but this may be longer due to lack of laboratory staff. Do keep in touch with your CNS or assigned cancer team member, and contact them if after two weeks you haven’t received the results.
Q: How will I get my post-op results?
A: This may be over the phone followed by a letter. Find out before you leave the hospital after you have recovered from your surgery, how your team are going to return results. Whether or not they will need you to return to the hospital after your surgery, will be decided on an individual basis. If you are recovering well and have no concerns about your healing skin, then they will try (when possible) not to bring you back in and keep to telephone updates.
Q: My surgery went well and I didn’t need further treatment. When will I have a check-up?
A: Before Covid-19: You would usually be seen in person to check your skin a couple of weeks after surgery. Then usually you would be seen every few months on a surveillance programme.
During Covid-19: The routine check-ups can’t happen for the time being, and we understand that this might be upsetting. Your team are still there to help you, they just don’t have the resources for non-urgent appointments at the moment, and check-ups are not considered urgent as treatment has already been given. Please phone your nurse/cancer team member if you have any concerns or questions after your surgery. The check-ups will resume when they can, we just can’t give a timeframe at the moment.
Q: I’ve had my surgery, they took lymph nodes and I’ve been told they are positive. What happens now?
A: If your doctors find cancer in your lymph nodes, they will assess each case individually as to whether or not further treatment is given. There isn’t a ‘blanket rule’ for this scenario, as the implications of treatment and the risk of catching coronavirus during treatment need to be weighed up. For patients who are more vulnerable and likely to become dangerously ill if they contract coronavirus, it is likely that doctors will decide not to include radiotherapy in the treatment plan. In these cases, the risks outweigh the benefits of having treatment.
Q: I’m due to start my radiotherapy next week, will it be cancelled?
A: We hope that your radiotherapy will go ahead, but your cancer team will look at your individual case, and radiotherapy will definitely still be considered unless you test positive for coronavirus. You will be phoned by your CNS or assigned cancer team member if your treatment is cancelled.
Q: My radiotherapy was due to start next week but has been cancelled. Will I still be able to have it soon?
A: It depends on how long before the pandemic subsides, which we know isn’t a clear answer. There is a window of time once someone has been diagnosed with cancer when having radiotherapy can be useful, and helps to treat their disease. After a certain period of time, the radiotherapy is less effective and unlikely to be a useful part of your treatment. As the Covid-19 situation evolves and radiotherapy resources are reinstated (if cancelled in first place) your case will be reevaluated to see if radiotherapy will be of benefit to you. Hearing that your planned radiotherapy treatment is being cancelled can be a very distressing experience, and we want to support you through this. Please phone Ask Eve if you want to seek advice or simply just vent to someone.
Q: I’m in the middle of my radiotherapy. Will I be able to finish it?
A: Yes, radiotherapy will not be cancelled once the schedule has started, unless you become infected by coronavirus. If you have almost finished your treatment and become infected with coronavirus but are not seriously unwell, the necessary precautions will be taken and if possible, you can complete your treatment. Regardless of your Covid-19 status, the radiotherapy schedule may be adapted to get you through your treatment quicker, meaning fewer trips to hospital.
Q: If I have to stop my radiotherapy because I am poorly with corona, when can I carry on?
A: Both the coronavirus and radiotherapy treatment weaken the immune system, so becoming more unwell during cancer treatment is common, whether or not you have tested positive for Covid-19. If you have to stop your treatment for whatever reason (regardless of the coronavirus pandemic) it’s unlikely that you would be able to start it again, as the doses of radiotherapy already given essentially become ineffective. With radiotherapy, it’s a sort of ‘all or nothing’ situation, hence why it’s more likely that your treatment would be cancelled before it’s due to start, and less likely to be cancelled mid-cycle. If you’re due to have radiotherapy, please take the social distancing and isolation guidelines very seriously, as your team will want to get your through your planned treatment.