Find out about the latest UK research, clinical trials and how you can take part.
Why we need research
All treatments have to be fully researched before they can be adopted as standard treatment for everyone. This is so that:
- we can be sure they work
- we can be sure they work better or have fewer side effects than the treatments that are available at the moment
- they are known to be safe
First of all, drug treatments are developed and tested in laboratories. For ethical and safety reasons, experimental treatments must be tested in the laboratory before they can be tried in patients. If a treatment described here is said to be at the laboratory stage of research, it is not ready for patients and is not available either within or outside the NHS. Cancer Research UK supports a lot of UK laboratory research into cancer.
Tests in patients are called clinical trials. Cancer Research UK supports many UK and international clinical trials.
All the new approaches covered here are the subject of ongoing research. Until studies are completed and new effective treatments are found, these treatments cannot be used as standard therapy for cancer of the vulva.
Experiences of taking part in a clinical trial – Transcript
Ash: I was offered a place on a trial by my cancer nurse
Jean: There was a new trial with new drugs and they were confident it would work and they offered it to me and I’m so glad I took it.
Nilesh: What we did, my wife and I, was to do some research on the internet. We came across the source trial which is what I went on and we took that to the doctor and then requested that we be put on to that.
Amy: The only thing that did sort of trouble us as a family when they did tell us was that it was possibly quite painful and there may be some side effects that they didn’t know about.
Ash: I was quite concerned about taking part in a trial because you hear the word trial and you think its test.
Nilesh: You know you hear about trials, clinical trials, drug trials things like that. My reservations were what the side effects were going to be.
Ash: I decided it was the right thing for me because it would potentially offer patients in the future less side effect risk.
Jean: There were lots of questions I had to ask and they were all answered and I was confident in going through the trial and the after care.
Nilesh: Right from day one they’ve been monitoring me. You know I have regular checkups and all that.
Amy: Any symptoms that arose with Poppy, somebody was always there to make sure that she wasn’t in any pain or any suffering.
Ash: I didn’t feel that they were hiding anything from me which when you’re talking about a clinical trial is so important.
Jean: It’s a really warm feeling knowing that what you did has helped other people.
Nilesh: I just hope that I played a part in a new drug that’s out there.
Ash: For other patients and also for society in general.
Nilesh: You’ve got to feel comfortable about the trial itself before you sign up for it. So do your background knowledge and just be 100% that that’s where you want to go.
Ash: Think about it very carefully. Read all of the background literature and ask lots and lots of questions because there’s no harm in doing that.
Checking lymph nodes close to the vulva
If your cancer is stage 1B or greater, your doctor will check your lymph nodes near the vulva to see if they contain cancer. Until recently, the surgeon would remove all of the nearby lymph nodes to check for cancer spread. But this operation has side effects. So doctors are looking for other ways to check lymph nodes close to the vulva, so they do not need to remove lots of them.
One way of checking lymph nodes is called a sentinel lymph node biopsy. The doctor finds the lymph node (or nodes) that cancer cells are most likely to spread to. If this node doesn't contain cancer cells, then the other nodes nearby probably don't either. So if your sentinel node is negative, you don't have to have any other lymph nodes removed. This is valuable because removing all of the lymph nodes in the groin can cause leg swelling called lymphoedema.
This approach is now being used widely for women with vulval cancer. But because it is still a fairly new test in vulval cancer, doctors want to find out more about it. So you may have a sentinel lymph node biopsy as part of a clinical trial.
Human papilloma virus (HPV)
We know that infection with the human papilloma virus (HPV) is an important risk factor for vulval cancer. Researchers have developed HPV vaccines to stop people becoming infected with HPV. In the future, we hope that the number of women getting vulval cancer will go down, as women have the vaccine and HPV infection is prevented. This will take some years, because vulval cancer takes such a long time to develop.
Some vaccines are being developed that will help your immune system to destroy the virus if you are already infected with it. If you have precancerous vulval cells (VIN), it may be linked to HPV infection. So a vaccine that gets rid of the HPV could stop the VIN from developing. This type of treatment is still very experimental. An early stage UK trial of an antiviral cream combined with an HPV vaccine for women with VIN has shown some responses. And a small Dutch study also found that a HPV vaccine helped some women with VIN. Research is ongoing in this area.
Anti viral creams and gels for VIN
VIN (vulval intraepithelial neoplasia) means you have pre cancerous cells in the skin of your vulva. It isn't cancer, but if you have this condition, there is a risk that it might go on to develop into a cancer. VIN is often linked to infection with HPV.
Doctors are looking at new ways to treat this condition. They have looked at creams including:
Doctors now use imiquimod to treat some women with VIN. It works by stimulating the immune system. This means it uses the body's natural defences to kill the HPV. If the HPV is removed, the hope is that the cells affected by VIN will go back to normal. A small Dutch trial and a small UK trial of imiquimod have shown that imiquimod can help about half of the women treated for VIN 2 or 3. But we need to find out whether this response to treatment lasts for a long time.
Cidofovir cream (or gel) is quite new and still being investigated as a treatment for VIN. A recent study called the RT3 VIN trial found that cidofovir gel and imiquimod were safe treatments and helped women with VIN 3. The researchers recommended that larger trials look at these treatments, and suggested that they could be used instead of surgery. But we still don't know whether these creams work as well as surgery.
Another cream being looked at by researchers is called Veregen. It contains a substance from green tea. They know that the cream is safe to use and works for women with genital warts. The researchers think it may also help women with VIN 3.
Doctors have looked at photodynamic therapy as a treatment for VIN and early vulval cancers. This isn't a routine treatment, but it is used occasionally.
We need more research to find out how well it works. For this treatment, you have a chemical injected into a vein that circulates through your body and is absorbed by cancer cells. When the chemical has been taken up by the cells, the doctor shines a bright light on the area of VIN or vulval cancer. The chemical makes the cells very sensitive to light and so the light kills them.
Photodynamic therapy is looking promising. But the treatment is not without its difficulties. If you have a light sensitising drug injected into a vein, all your skin will be at risk of damage just from daylight, until your body has got rid of the drug. So during this time you have to stay in a darkened room, or cover up completely and wear dark glasses if you go out.
Side effects of radiotherapy
After radiotherapy to the pelvic area, some people can have long term side effects such as bowel problems. This might be diarrhoea, a need to rush to the toilet more often than normal or bleeding from the back passage. These side effects happen if the radiotherapy causes a thickening of the tissue in the treatment area, making it less stretchy. This is called radiation fibrosis. Doctors are trying to find ways to relieve the problems caused by this tissue damage.
Support for women with vulval cancer
Many women have said that getting emotional support when they have gynaecological cancer has helped them to cope. But there is little scientific evidence to back this up. A small study in London looked at how women with gynaecological cancer could be supported by other women who have had similar cancers. Women in one group were contacted by a woman who had had similar treatment, and had special training in giving support.
A small study is looking at rehabilitation for women with gynaecological cancers. The researchers want to find out whether having 2 planned rehabilitation sessions can help these women return to as normal a life as possible.