Just Information And Support

Hi.  I am a 40 year old single mom of a 12 year old daughter.  I was diagnosed with CIN III and VIN III (carcinoma in situ) about a year and a half ago.  At that time, I underwent laser surgery of both areas which was extremely painful, however, I healed and recovered well from it. Unfortunately, 6 months after the laser surgery, I already has some recurrence in a  couple of areas.  I have been having regular check ups and paps and two weeks ago had a repeat pap and biopsy of two areas on the vulva.  Yesterday I got the results.  The vulva was again VIN III (carcinoma in situ) and the pap was CIN III.  The physician also did a colpo with ECC to get further sampling of the cervix.  Now I am scheduled for surgery of the vulva on July 17th.  I will be having a wide resection of two areas on either side of the clitoris.  I guess more than anything, I would like to hear from someone who has been through the same thing.  Laser was terrible, and didnt work, and Im wondering if this is going to work either!  What is the next step if it doesnt....vulvectomy???

Just would love to hear from anyone who has experienced the same type of surgery (resection/excision).  The physician I have at Leo Jenkins Cancer Center is a women and is going to try her best to preserve my anatomy down there..... I wonder is it as painful as laser for those of you who may have had both?  Any suggestions for me???

Hi, I am 39 and I have a 12 year old daughter as well. I was diagnosed with CIS/VIN 3 of the vulva. I had 2 excisions and 9 biopsies. I am surprised your ONC did a laser surgery in the first place. With laser surgery there is no way of getting a pathology report back which is really important. Excision is still the most definite way to get the VIN out. So I would definitely ask her why she didn't do excision in the first place. Also have you had a second opinion? It is really important. I have 2 white lesions that just came up after my surgery close to vaginal opening. Figures! Now I am going back to see what it is. I am also planning on getting second opinion again to be certain. My doctor does not think it is cancerous but I will make sure she does whatever test including biopsy of necessary to figure out what it is.

Please take your of yourself. A nurse once told me YOU ARE YOUR OWN BEST ADVOCATE. Listen to your gut feelings and ask away.

All the best luck,

I think the Vaccine is a wonderful thing. i just think the U.S. Takes too long sometimes on things that are needed. Like letting people know about HPV. Until recently you never heard those 3 little letters that change so many lives and so many people have unknowingly.

2011 is a long time for those suffering now. The sad thing is most with it would happily volunteer for testing the vaccine for studies.

It is good if your doctor is trying to preserve your anatomy "down there", but is she just saying that or is she really and does she even know how to accomplish that? 

It does seem strange that she did a laser first.  Going from a laser to a resection on both sides seems like an extreme leap.  On the other hand, if my friend's doctor had done that, perhaps she wouldn't have had to have a vulvectomy.

My friend who had vulvar cancer had the kind that starts with the white skin.  Her doctor always did skinning and creams.  She went on this way for about 30 years before it turned into invasive cancer and she had to have a vulvectomy (in her mid sixties).  After the vulvectomy and then radiation, the cancer never returned.  She lived about 11 more years and died recently from an unrelated cause.

Please seek a second opinion before you let your surgeon cut on you.  The resection your doctor suggests sounds too extreme, especially for someone your age, and once it is done, there is no going back.

By the way, a common mistake for this kind of cancer is receiving radiation  BEFORE the vulvectomy.  After radiation, the wound is difficult to heal and in some women, never heals.  Make sure that doesn't happen to you.

Blessings to you.