[email protected]

Mary- yes we were diagnosed around the same time and yes I am still dealing with this.  I have yet to get clear margins. My doctor has been trying to be conservative in his treatment primarily because of my age (41).  So much of my vaginal area was covered with the discoloration that the only way to get rid of it all at once would be to do a vaginectomy.  He is trying to avoid disfigurment by doing the surgeries a little at a time.  As I mentioned, we have done two already and if this cream doesn't work I will have to have a much more invasive procedure.  I should add that, I first noticed a small area of discoloration of my vaginal area in 2002 and brought it to the attention of my OB/GYN.  In 2004 I had my first biopsy which I was told was benign.  Over the years, I could see the progression of the discoloration but didn't want to seem like I was making a mountain out of a mole hill, since I had already been told it was benign.  I also had no idea of what it could be if it wasn't benign, so I trusted my doctor every year when I went for my annual exams.  Finally in 2009 I guess it was so obvious that the discoloration was ALL OVER that the doctor sent me to a gynecologic oncologist.  He did 3 more punch hole biopsies and told me it was lentigo simplex.  He said "You might want to follow up with a dermatologist"  Thankfully I did that and when she examined me and saw the biopsy reports she KNEW something was not right.  She immediately referred me to Memorial Sloan Kettering Cancer Center in NYC.  Their pathologists were able to obtain both of my previous biopsy slides and they did their own review.  They found that I had precancerous lesions in 2004 and melanoma insitu 2009……and then the fun began.  I have been told that my condition, all things considered, is extremely rare.  My doctor has never seen a case like mine in 25 years of practice and he is one of the top OB/GYN cancer doctors in the country.  This forum has finally given me some outlet for finding people that have experienced some of what I am going through.

How are you doing?

All the best, Cindy

Mary- yes we were diagnosed around the same time and yes I am still dealing with this.  I have yet to get clear margins. My doctor has been trying to be conservative in his treatment primarily because of my age (41).  So much of my vaginal area was covered with the discoloration that the only way to get rid of it all at once would be to do a vaginectomy.  He is trying to avoid disfigurment by doing the surgeries a little at a time.  As I mentioned, we have done two already and if this cream doesn't work I will have to have a much more invasive procedure.  I should add that, I first noticed a small area of discoloration of my vaginal area in 2002 and brought it to the attention of my OB/GYN.  In 2004 I had my first biopsy which I was told was benign.  Over the years, I could see the progression of the discoloration but didn't want to seem like I was making a mountain out of a mole hill, since I had already been told it was benign.  I also had no idea of what it could be if it wasn't benign, so I trusted my doctor every year when I went for my annual exams.  Finally in 2009 I guess it was so obvious that the discoloration was ALL OVER that the doctor sent me to a gynecologic oncologist.  He did 3 more punch hole biopsies and told me it was lentigo simplex.  He said "You might want to follow up with a dermatologist"  Thankfully I did that and when she examined me and saw the biopsy reports she KNEW something was not right.  She immediately referred me to Memorial Sloan Kettering Cancer Center in NYC.  Their pathologists were able to obtain both of my previous biopsy slides and they did their own review.  They found that I had precancerous lesions in 2004 and melanoma insitu 2009……and then the fun began.  I have been told that my condition, all things considered, is extremely rare.  My doctor has never seen a case like mine in 25 years of practice and he is one of the top OB/GYN cancer doctors in the country.  This forum has finally given me some outlet for finding people that have experienced some of what I am going through.

How are you doing?

All the best, Cindy

Hi Mary- thank you for your reply.  The aldara has been challenging, I am approximately 8 weeks into the treatment and possibly have 8 more weeks to go.  My treatment options were fairly limited.  I have had two major surgeries to remove as much of the mass as possible but my situation is extremely unique in that it is very multifocal.  My doctor wanted to try another route before doing the only thing left which would be a vaginectomy.  The majority of my biopsies have come back as melanoma insitu but there were two spots that showed microinvasive melanoma, one spot being on my urethra.  Recently there have been studies showing success in treating some melanomas with aldara.  It appears from a recent check-up that it is working for me.  The side effects have been extremely unpleasant, when I first started the cream I had flu like symptoms each time I applied it.  That has lessened and now the irratation to my skin is very uncomfortable and I am extremely tired all the time.  I am keeping my fingers crossed until my next appointment and hoping for more good news.  

Thanks again!  Cindy

Hi Mary- thank you for your reply.  The aldara has been challenging, I am approximately 8 weeks into the treatment and possibly have 8 more weeks to go.  My treatment options were fairly limited.  I have had two major surgeries to remove as much of the mass as possible but my situation is extremely unique in that it is very multifocal.  My doctor wanted to try another route before doing the only thing left which would be a vaginectomy.  The majority of my biopsies have come back as melanoma insitu but there were two spots that showed microinvasive melanoma, one spot being on my urethra.  Recently there have been studies showing success in treating some melanomas with aldara.  It appears from a recent check-up that it is working for me.  The side effects have been extremely unpleasant, when I first started the cream I had flu like symptoms each time I applied it.  That has lessened and now the irratation to my skin is very uncomfortable and I am extremely tired all the time.  I am keeping my fingers crossed until my next appointment and hoping for more good news.  

Thanks again!  Cindy