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vulvar cancer

karenk
Posts: 3
Joined: Dec 2000

I have just gotten past my first 3 month check-up after surgery and treatments. I would like to talk with someone else.

ojbonnie
Posts: 2
Joined: Jan 2001

Hi - was diagnosed with a subsection of vulvar cancer - bartholin gland cancer in Feb. of 2001 and had a hemivulvectomy, then lymph node surgery in March and radiation from April to July. In Oct. was told I was in remission.So I guess it's my first 3 mo. after.Still working on dialating, hair growing and nerve pain.How about you?

par2323
Posts: 1
Joined: Nov 2002

Hi,
I was just diagnosed with vulvar cancer. I will have surgery on Dec. 16. I would like to talk to you.
par2323

dcarl
Posts: 41
Joined: Feb 2003

Hi. I ws diagnosed in April 2001 with vulvar cancer. Since then I have had laser surgery to remove squamous cell carcinoma on right side June 2001, developed a tumor and had it removed sept 2002 and it was found to be cancerous. had lymph nodes removed in oct 2002. Just went back for 3 mo. check up beginning of Feb and doc saw a couple suspicious areas. Just had vulvar biopsies done yesterday (out patient) doc saw a new area that has become involved. wants to do full vulvectomy and possibly clitorectomy. Kind of nervous about it. There aren't many chat rooms or support groups in my area so am hoping to make a connection with someone to lend mutual support.
I hope your surgery went ok. Please update.

karenk
Posts: 3
Joined: Dec 2000

HI,

I'm not sure if my story will help you, or not, but I thought you might want to hear it anyway. For my first surgery, initial diagnosis, I had a modified radical vulvectomy and removal of my lymph nodes. After surgery I had chemo and radiation. To be honest, I think the surgery was not as bad as I thought it could be but the physical change it has left somewhat self-consicoius. Unfortunalely, in June, I was told that my cancer had recurred and I had to make some pretty significant decisions before anything else was going to happen. I went for two second opinions, one locally and the other at the Mayo Clinic in Rochester MN. Bottom line is that I had 3 choices; first choice pelvic exenuration, 2nd local excision with gracilas flap replacement and third, do nothing. I chose the second and after surgery my doctor apologized to me, told me that my prognosis is poor. Since then we tried a new radiation techniques that had just come out and coupled it with some chemo. Now we are just watching and waiting.

I don't know what to expect but I do know that the decision I made was the right one. I think you need to try whatever you feel comfortable with to try and control the cancer and yet have some quality of life.

Anyhow, I'm here to talk with if you would like. I find this cancer to be very difficult to talk to others about and would appreciate having someone to talk to.

I wish you all of the best

countrything
Posts: 2
Joined: Apr 2004

just found out i have cancer and really need to talk

angel813's picture
angel813
Posts: 6
Joined: Jan 2002

Hi, I am sorry I have not seen this post sooner. Please update and let me know how you are.

WendyD
Posts: 7
Joined: Mar 2003

Hello, hello!
I'm Wendy, 32, in Ct, and I , too, have had Vulvar cancer. A question about the Bartholin's cancer, please.. I've had an enlarged Barth's cyst for at least 9 years now.. it's never been tested, could you please tell me your symptoms? You can e-mail me privatly, if you wish.
One thing that will CERTAINLY help, is that you (and I, lol) found this support board. I found a support group for GYN Cancers (mostly vulvar) right after my dx, in 12/01, while I was pregnant with my 2nd child. Those wondreful ladies held my hand, gave me TONS of advice, and most important, let me know that I was NOT alone.
Not glad of the reason to "meet" you, ladies, but glad to have some friends who will understand.
Oh, at my last check, I was "clear" however, I am having more symptoms. :( and am planning on making an appt next week.

martyg
Posts: 5
Joined: Apr 2002

I had a radical vulvectomy(right side only) on 9/11/2001. Sitting was painful but within three weeks I was back working (selling insurance) part time. Lymph node removal was recommended because of the depth of the cancer and, reluctantly, I had them removed on both sides of the groin 11/01/2001. I immediately contracted a severe staph infection and was in the hospital much of November. Finally, the infection was under control and I felt fine.
I went in for a three month check up in February and, because new white areas had formed, two biopsys were done - one on the left and one on the right. They came back negative. The left side has continued to develop and will have to be removed. Surgery is planned in another month.
I am discouraged, especially since I don't have anyone who has experienced this cancer recently with whom to compare notes. I feel fine. I have experienced some loss of stamina which may be due to the cancer or age, or both!

martyg
Posts: 5
Joined: Apr 2002

I had a tumor removed 9/11/01, my lymph nodes on both sides of the groin 11/01/01 and now I have to be operated on 7/16/02 for what the Dr calls a skinning. In other words the cancer has returned but it is not to the tumor stage yet. I am feeling fine but wonder what is ahead of me.

nursekish
Posts: 3
Joined: Jan 2003

Hi! I was diagnosed with vulvar cancer in Jan.2002. I had a local wide excision done Feb.2002 and the margins were clear. I just had my 1 year check-up since surgery and the Dr. found another different area to biopsy. So, here I sit waiting for results of the biopsy to come back. I think I'll just cry if I have to have more of my genitals cut off. That area is just jammed packed full of nerves and that makes for a very painful recovery period. I was told that the recurrance rate for vulvar cancer is 30%. Now I hope I'm not just a statistic. I'd love to hear from anyone who has had treatment for this type of cancer.

nbug
Posts: 3
Joined: Feb 2003

I am having surgery 2/27 for VIN I on the outer labia, and VIN III on inner labia. I am going to talk with doc about ointment containing a chemotherapy drug because of a high recurrence rate. Anyone know/use this chemo. ointment?

dcarl
Posts: 41
Joined: Feb 2003

Hi!I was diagnosed with squamous cell carcinoma of the vulva in April 2001. Since then I have had laser surgery on my right side in June 2001, developed a tumor and had that removed September 2002 which was benign but my doc recommended removal of lymph nodes in my right groin. Had that done in Oct 2002. Lymph nodes were ok but I went back for three month check up where doc saw a few suspicious areas. Actually just had surgery yesterday for extensive biopsies, doc said we've probably been too conservative and wants to do full vulvectomy, which may or may not include a clitorectomy. Will find out on my office visit next Wed. Doesn't seem like many women visit this site regularly. Postings are few and far between. Is it because there aren't many of us with this type of cancer? I'd like to talk to anyone! I haven't had much luck in reaching anyone yet. Just need a little moral support.

WendyD
Posts: 7
Joined: Mar 2003

Please eail me , and I will send yo the link for the GYNGALS< the vulvar cancer support group. They are an icredible group of women that all have some kind of gyn cancer, mostl, vulvar cancer. :)

joannie
Posts: 2
Joined: May 2003

Please let me know the link for GYNGALS. I tried one address I found elswhere but did not connect.

Mariefost's picture
Mariefost
Posts: 10
Joined: Jan 2004

Hi, I'm Marie aged 41 from Ga. I have had vulvar cancer for over 3 years now, I've last had a skinning vulvetomy with removal of my anus and skin graphs to do reconstrustion surgery.
I'd be happy to chat with you anytime or join some of us at.http://health.groups.yahoo.com/group/CinVinVain/

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