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Vulvar cancer just had surgery.

SweetLily
Posts: 3
Joined: Jun 2011

I just had surgery to remove lesions in the area. Doctor said I had 93 of them in the vagina and anal region. I'm extremely sore, itchy whih I assume is from healing. What worries me is that my doctor told be there is a 50% chance of it coming back. And his missed 2 moles during surgery. I'm just really scared, I don't want to go through surgery again. I feel extremely alone, my fiancé is a good man and does what he can to help, but being a Girly thing it is just lonely. I'm 23 years old, and I just don't want to battle this my whole life. I have noticed that alot of woman who find out they have this cancer that it comes back. I go in this week for my check up. I'll update.

Lily

tammysalterego
Posts: 5
Joined: Apr 2012

Hi. I am 46 and was diagnosed in Oct 2009. I had an excision of two lesions one just outside the vagina and one newer lesion inside. A month later I had some lymph nodes on each side of my groin removed and tested and they were found to be negative for the cancer. Because the margins of my excision were positive, in Dec I began a round of radiation and chemo. The chemo was easy. The radiation, because of the area it was in (my butt crack...don't really know a pretty word for it) and that it was the skin being radiated, was horrifying. I had second and third degree burns in that very sensitive area everyday for six weeks. My skin has yet to recover. It blisters and peel and cracks. It is painful to sit, walk and forget about sex. In August 2011, I felt a lump in my groin. After testing it was fount that two lymph nodes were engulfed by the cancer. Another damn surgery and more radiation. I am finally back to work now but my skin is still trying to recover. I found a red sore and had it biopsied four weeks ago and it came back negative but the sore is not healing. It's been five weeks now and my radiated skin just doesn't heal. The next step doc says, is a skin graft. What?! My skin from my clitoris to my anus would be cut off and they will sew and staple new skin there. It is a frightening proposal and one I was not prepared for. I cannot tell you Lily if your cancer will come back. Everyone is different and treatments are different. But I can tell you what I have been through. There are not many of us vulva cancers at a younger age. I know of no one. So if you have any questions or want to tell mke your story, I am here for you. I am blunt and honest and at times a bit too graphic, but I have been where you are and maybe it would help to talk to someone who knows exactly what you have been feeling. email me anytime...tbryson@chinaberry.net.

SweetLily
Posts: 3
Joined: Jun 2011

My lesions were moles. I had 93 of them taken off :/ I'm extremely sore. And I have noticed that he has missed 2 of them. They were just about at the stage of turnin to ulcers. One was extremely close. I guess I just don't understand, how? Ya know? Why?? I'm only 23 I shouldn't be having to deal with this, I got 2 kids to think of, a wedding to plan. I guess I'm just in that first depression stage. I'm just so afraid for it to come back, I don't wan to constantly fight this for the rest of my life. I couldn't imagine having to do a skin graph!!! OMG! Im nervous about it hitting my lymph nodes too. Do they know how long it takes for the cancer in the lymph node till it spreads through your body? I haven't asked since I'm not there yet (hopefully I won't ever be there) I found out I had it last year, and as I went in for surgery my pregnancy test came back positive. I just have birth to my second son 2 months ago. While I was pregnant the moles just multiplied! Like it was nothing!! It was so scary! They say it was from the hormones from pregnancy that made it spread so fast :/ idk... I'm just nervous right now. I go in the doctors this coming up Tuesday. I hope it's good news, and I get to tell him he missed some :/

I tried to email you but it said your email wasn't valid?

kaytie22
Posts: 15
Joined: Apr 2012

I was diagnosed with VIN3 last month. Going in for a vulvectomy next week. I'm also young... 25 years old with a new baby boy (7 months)... I will be going through chemo and radiation due to anal cancer but just wanted to let you know I am here if you want to talk. You aren't alone, although I know it can feel like that a lot of the time.

tammysalterego
Posts: 5
Joined: Apr 2012

Don't know why anything would say my email isn't valid. tbryson@chinaberry.net email me anytime. It is a frightening prospect to be as young as you and have to worry about this cancer for the rest of your life. All I can say is be diligent and cautious. My cancer progessed because I didn't get checked out when I should have. At 40 I didn't think I would get any cancer, never heard of vulva cancer and since I wasn't in a relationship at the time, wasn't motivated to get the spot checked out. Of course I tried to treat it myself with all kinds of meds and lotions but it just wouldn't go away. I waited until urinating was painful everytime. I went to my ob/gyn and told her to just cut it off. It took her 9 months of tests before she biopsied the actual sore. If your doctor missed some moles than you should tell him immediately. I know going to the doctor is not in the schedule when your a young mom, and this is the last thing that you want to deal with, but what I have learned over these three short years is that the sooner you take care of this the better. It is a slow growing cancer (mine anyway) but it is very invasive. The smaller the amount of tissue they have to remove and radiate the better. As far as your lymph nodes are...I discovered some discomfort in my lap when sitting and I felt a little knot. Went to several doctors before they tested for the right thing and in one month it tripled in size. Just don't let it go. If you have a spot or a mole, get it checked out. Do it for your kids and maybe if you catch this soon enough, you can be cancer free in five years. You and your husband (he has a better vantage point) are the eyes on this problem. Like I said be dilegent and don't let any abnormality go unchecked for more than a week. Keep in touch.

sharon63
Posts: 1
Joined: Jul 2012

I am 48 had kidney transplant 1999 pancreas transplant 03 vulva cancer from anti- rejection drugs 6/5/12 had a double vulvectomy borders clean but in middle not I am not healing and I have a white discharge from vagina had 2courses of diflucan what to do?

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