I've just been told I have VIN level 3 / vulval cancer this morning, I have been told Oncology will be in touch after a Thursday MDT meeting in the next couple of weeks for next steps. I'm not sure how to feel about it. I've had to wait 6 weeks for my results on a 2ww and I've had to wait 12 months for the original biopsy appointment. I feel like I'll be dead before they get round to me
Hi Biposaj76,
Thanks for getting in touch. I hope you find the online community a helpful space to communicate with others. I’m Eileen one of the Cancer Information Nurses on the support line.
I’m sorry to hear about the time it has taken to have your biopsy and receive a diagnosis. I can appreciate that waiting for investigations and results to confirm a diagnosis is an anxious time.
If a referral has been made for a suspected cancer there are NHS waiting time targets for diagnosis and treatment in the different UK nations but delays can occur for various reasons including demand on services. The NHS in all four nations is committed to making sure that people with cancer or suspected cancer are seen as quickly as possible.
It’s understandable that you are worried about the impact of any delay in diagnosis. It’s common for people to be concerned that their condition could worsen whilst they are waiting and impact their prognosis. We would suggest talking to your consultant about this. If you have been given contact details for a Clinical Nurse Specialist you can call them for support and advice.
You mention you have been diagnosed with VIN/ Vulval cancer. As we are not part of the NHS and do not have access to your medical information it’s difficult for us to know the exact nature of your disease. VIN is not cancer. The abnormal changes of the cells that cover the vulva may go back to normal naturally but sometimes over time they develop into vulval cancer.
The terms VIN 1, VIN 2, or VIN 3 are used by doctors to classify VIN. The terms describe how deeply the abnormal cells go into the surface layer of the skin with VIN 3 affecting the deeper levels. You usually have treatment for VIN2 and VIN3. This is because there is a risk that the abnormal cells may develop into cancer over time. Treatment may involve surgery to remove the affected area or a cream that is applied to the skin. The meeting that is to take place to discuss your condition will determine which option is most appropriate for you.
Symptoms usually improve after treatment, and you have regular check-ups at the hospital. At these appointments, your doctor examines your vulva. They monitor you closely to check that there are no signs that the VIN has returned.
It can be difficult to know who to talk to or how to start a conversation about living with a vulval condition. For many people, talking about it is an important way of coping. You may find it helpful to talk to family or friends. Or you may prefer help from someone you are not close to, such as a counsellor. The Vulval Pain Society offer support and can signpost to support groups which you may find useful.
I do hope this information is helpful.
If you have any further questions, please don’t hesitate to get back in touch. You can speak with the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or email us.
Best wishes,
Eileen
Cancer Information Nurse Specialist
Ref : KM
