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new... PLEASE help

Posts: 5
Joined: Jan 2010

I have posted several days ago on this site and also on the skin cancer site with no replys. I have vulvar cancer/melanoma... I understand there may not be anyone else out here with this but if you can help me with support or info on either vulvar cancer or melanoma this would be so greatly appreaciated. I have my second radical partial vulvectomy in just a few days. thank you, cheryl

Zupo's picture
Posts: 7
Joined: Jan 2010

Hi cheryl,

My Prayers are with you! I just joined the site. I am glad to have been looking thru all the different groups today and picked "Rare cancers..." I am a 9 month survivior of endometrial cancer! I did not seek support before because I was in survival mode during the diagnosis,the surgery-total abdominal hysterectomy, the Radiation treatments, all the doctor visits, and recovery time. I went into depression for 6 months before I got help.
My point is that I am finally starting to deal with the cancer; I have so many questions now that I never asked before. I found this CSN site! Since Jan 31,2010. I have been reading, reading, reading!
First, I recommend going to the gyn (other than ovarian or uterine) cancer discussion section! I have seen several women on the gyn site that have your cancer. Also try the Uterine site. may of the women have had pelvic Radiation external and internal and can help support with what they went thru and what works for the side effects.
Looking forward to seeing you on the GYN site! Mary.

Posts: 1
Joined: Apr 2010

Hi Cheryl. I was just diagnosed yesterday with vulvar cancer, and have been spinning my wheels trying to figure out how to handle this. I'm still waiting for my first appointment with a gynecoligical oncologist, and from what I hear, I will need surgery, radiation and chemotherapy. As of yet, I don't even know what stage I am in. Having a rare cancer makes it hard to find people to speak with, so I was very happy to see your posting. At this point in my prognosis, I am unable to give you much information, as I am just getting ready for the big plunge myself.

Please contact me if you would like to correspond. Perhaps you can help me understand a little more of what will be happening to me. katie

Posts: 1
Joined: May 2010

I was just diagnosed with vulvar melanoma just before my 30th birthday. I had a partial vulvectomy. We just recieved that pathology results from a specialist and I was Clark stage IV for depth. I have a second surgery sceduled for this thursday 5/20. This time he is going to remove lymph nodes to see if the cancer spread. It is hard to find people with the same problem. I hope your procedue was successful!

Posts: 22
Joined: May 2010

I was diagnosed in January and hacve gone through 3 surgeries with 5 procedures. Finally got clear margins on the last surgery and all 13 nodes were clear. I have settled into stage 3a and am enrolling in a clinical trial. My last surgery was May 3rd so I am still healing but doing well. With the exception of the first surgery the stitches have not held. It has been a slow process.
So happy to find other women battling this! Although, it is very bittersweet.

Sue in Chicago
Posts: 1
Joined: Nov 2010

Hello. I'm hoping someone can help. I have been experiencing severe itching which turns to painful/prickly sensation when itched on left side of vulva for weeks. Recently, I've noticed tiny specks of blood on panty liner which appear to be coming from site. I have been using cortozone cream for 2 days and it is helping with itch. I do not have any vaginal itch or discharge and there is no odor. Did others have these symptoms? It began after a fall in August where I had trauma to the vulva area. I'm going for a checkup this weekend, but would appreciate any input from those who have had cancer regarding the symptoms they experienced before diagonsis. Thank you.

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