Vulval cancer 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 than the treatments that are available at the moment
• They are known to be safe

First of all, 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.

Tests in patients are called clinical trials. The trials and research section has information about what trials are including information about the 4 phases of clinical trials.  If you are interested in taking part in a clinical trial, click the button on the left of your screen to visit our searchable database of clinical trials recruiting in the UK. If there is a trial you are interested in, print it off and take it to your own specialist. If the trial is suitable for you, your doctor will need to make the referral to the research team. The database also has information about closed trials and trial results.

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.

Sentinel lymph node mapping means finding 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 radical removal of lymph nodes in the groin can cause leg swelling called lymphoedema.

This approach has been used widely in breast cancer and melanoma of the skin, and is now being studied in vulval cancer. We need to be sure that it is safe before it is widely adopted. We need to be sure that finding and removing this sentinel node really does tell us reliably about the other nodes, and whether they contain cancer cells. So this type of treatment is still experimental and should only be offered as part of a clinical trial for vulval cancer.

To find the sentinel lymph node, the doctor injects a dye or small amount of a weak radioactive chemical (called a tracer) into the area around the cancer. As the body drains tissue fluid into the lymph nodes in the normal way, the dye or radioactive tracer will show the route it takes. The first lymph node that the dye or tracer reaches is the sentinel node. The surgeon removes this and sends it to the lab to be examined for cancer cells. If it doesn't contain cancer cells, there is a good chance that the cancer has not spread. So your doctor will not have to remove the rest of the lymph nodes and you avoid the risk of lymphoedema. If you have this done using the radioactive tracer, please be reassured that the dose of radiation is very small, it doesn't last for long and is very quickly removed from the body. There is no danger to you or anyone else from having this test.

The GROINSS-VII study is looking at using sentinel node mapping to decide whether women need to have any further treatment after surgery for vulval cancer. They are trying to find out whether radiotherapy works as well as removing lymph nodes at stopping vulval cancer from coming back. They hope radiotherapy will cause fewer side effects. They also want to check that it is safe to give no further treatment after surgery if a woman has no cancer cells in her sentinel lymph node. You may be able to join this study if you are going to have an operation to remove an early vulval cancer which measures less than 4 cm across. If the sentinel node has no sign of cancer cells, then you will have no further treatment, but you will be followed up by the trial team. If there are cancer cells in the sentinel lymph node, then instead of having the rest of the lymph nodes in that area removed, you will have radiotherapy for 4 to 5 weeks. Some women will also have cisplatin chemotherapy, to make the cancer more sensitive to radiotherapy.

A human papilloma virus (HPV) test is now being introduced into the national screening programme to prevent cervical cancer. This may also prove useful in picking up vulval cancer.

HPV vaccines have been developed to stop people from becoming infected with the HPV virus. Other vaccines are being developed that will help your immune system to destroy the virus if you are already infected with it. In 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.

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 HPV vaccine for women with VIN has shown some responses, and research is ongoing in this area.

VIN means you have precancerous 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. Doctors are looking at new ways to treat this condition. They are experimental and not yet used as standard treatment. They include:

• Imiquimod
• Cidofovir

Imiquimod cream is usually used to treat genital warts. It works by stimulating the immune system. This means it uses the body's natural defenses to kill the HPV. It does this by releasing a number of chemicals called cytokines. One of these cytokines is called interferon. Interferon is a protein that is made naturally as part of the body's immune response. It is sometimes used as a cancer treatment. The idea is that the imiquimod makes cells produce more interferon and this helps to kill off the HPV infection. 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 has shown that imiquimod can help about half of the women treated for VIN 2 or 3.

Cidofovir cream (or gel) is quite new and still being investigated as a treatment for VIN. We don't know yet how useful it is. 

A trial called RT3 VIN is looking at cidofovir and imiquimod for vulval intraepithelial neoplasia. This trial is for women with VIN 3, which means the cells are very abnormal. Your doctor may also call this severe dysplasia. This trial is looking at 2 treatments that you apply directly to the affected area. One is a gel called cidofovir, and the other is a cream called imiquimod. The aims of this trial are to find out if cidofovir and imiquimod are useful treatments for VIN 3.

Doctors are testing photodynamic therapy as a treatment for VIN and early vulval cancers. 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.

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. 

Most patients said they felt less alone and more confident about coming out the other side of their cancer experience. Many described the process as an emotional release (catharsis), leading to less anxiety and anger, and an increased sense of wellbeing. Women who had finished treatment particularly valued peer support in making sense of their illness experience, and as a starting point for taking steps to rebuild their lives.