Paget's disease of the vulva.

[d_s_g]

After suffering with Lichen Sclerosus I have now been diagnosed with Paget's disease. It is a very rare pre-cancerous condition. I have elected not to undergo surgery & am using a cream caller Aldara. I am wondering if there are any other women with the same. It is not Extra-mammary Paget's. I am feeling alone as there may be only a couple of hundred women in Australia with this condition.

[bev]

I have a friend who was diagnosed with that a few years ago. Have you thought of giving 131120 a call and ask for Cancer Connections. I am a volunteer for cancer connections, for that, a patient gives cancer connections their cancer history that they want to discuss. That info is then matched with a volunteer that has experienced similar details, and they are asked to contact the patient by phone. Everything is confidential. Yes, it does help to talk to someone that has experienced something that you are facing.

[bev]

I have a friend who was diagnosed with that a few years ago. Have you thought of giving 131120 a call and ask for Cancer Connections. I am a volunteer for cancer connections, for that, a patient gives cancer connections their cancer history that they want to discuss. That info is then matched with a volunteer that has experienced similar details, and they are asked to contact the patient by phone. Everything is confidential. Yes, it does help to talk to someone that has experienced something that you are facing.

[d_s_g]

Thank you for your information. I have contacted cancer connections & have spoken to one of the ladies. She going to phone me soon with contact details of a woman with vulva cancer, hope we will be able to help each other in some way. Thank you again.

[bev]

Not a problem

[bev]

My friend with Paget's, hers is called Lichen Sclerosus

[d_s_g]

I had Lichen Sclerosus also that was being treated with a topical cream called Celestone. After a biopsy on the 13th January it was confirmed I have Paget's Disease. I declined surgery & am being treated with Aldara cream, it contains Imiquimod an Immune Response Modifier. It is a chemotherapy cream & is quite expensive $199.00 for 12 one use sachets. It works on the immune system to destroy any cancer cells. It isn't pleasant to use & has many side affects but much better than surgery. kind regards d s g

[d_s_g]

I had Lichen Sclerosus also that was being treated with a topical cream called Celestone. After a biopsy on the 13th January it was confirmed I have Paget's Disease. I declined surgery & am being treated with Aldara cream, it contains Imiquimod an Immune Response Modifier. It is a chemotherapy cream & is quite expensive $199.00 for 12 one use sachets. It works on the immune system to destroy any cancer cells. It isn't pleasant to use & has many side affects but much better than surgery. kind regards d s g

[bev]

I have a friend who was diagnosed with that a few years ago. Have you thought of giving 131120 a call and ask for Cancer Connections. I am a volunteer for cancer connections, for that, a patient gives cancer connect their cancer history that they want to discuss. That info is then matched with a volunteer that has experienced similar details, and they are asked to contact the patient by phone. Everything is confidential. Yes, it does help to talk to someone that has experienced something that you are facing.