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Vulva Cancer

Vulva Cancer

Posted by Beaner51 on Jan 3, 2013 6:29 am

Very seldom do you hear about Vulva Cancer, but it does exist.  Looking for others who maybe going thru this right now or have, I am a repeat repeat repeat..shocking 30 years yes 30 years..working on my Gold Watch..(humor doesn't hurt) not like Vulva Cancer.

So its one of those "Taboo" issues..usually when someone asks me what form of Cancer do you have...I say Vulva quietly..the person responds Volvo???? yeah right..I only wished I owned a Volvo!! lol...so please lets chat on here about how one gets thru this form of Cancer..

RE: Vulva Cancer

Posted by Julie_admin on Jan 7, 2013 6:26 pm

Hello Beaner51:

There are a couple of members on the site that mention they have dealt or are dealing with vulva cancer: Warrior Princess & Smile. Both of these women haven't been posting on the site for awhile, but you might want to private message them or even reply to one of their posts. They should get an email notification that hopefully will bring them back to the site.

You may even want to start a vulvar cancer discussion.

RE: Vulva Cancer

Posted by vikingwoman on Jan 8, 2013 4:01 pm

Hello Beaner51,

I agree - owning a Volvo would be nice, wouldn't it?  (-:

I too was completely shocked when I heard my doctor give me the news.  It knocks you back, doesn't it?  I had vulvar cancer (squamous cell - stage one) and I did get through it and have been clear for 7 years now (I'm almost 58).

(I'm assuming that you have done some research on the Cancer Society websites and others?  I certainly hit the computer fast and hard when I found out.  It was such a confusing time.)

What type of vulvar cancer have you been diagnosed with and have you had treatment yet?  Do you have any specific questions you would like to ask me?  If so, I'm happy to give you any feedback on my experience.


RE: Vulva Cancer

Posted by Beaner51 on Jan 8, 2013 4:09 pm

Thank you so much for your reply, it is a Cancer that many are not familiar , I have been dealing with Boens Disease pre Cancer for about 20 years..yes..it has exhausted me, and the last 6 years I have been dealing with Cancer of the Vulva, it doesn't seem to go away, I have my surgeries in Vancouver, Dr. Miller is my Gyne I have had Laser and Excision done and had my lymph nodes removed in my right groin, but it continues to beat me up, currently I go for another surgery Jan 24th, meeting the Gyne here in Kelowna during their Gyne visit, to confirm that I will have a complete vulvectomy.  II am having a real issue with confidence and sexuality, I am 51 and single, find this has stolen my hope of ever getting into a relationship again, its nice to know I am not the only one out  there, do you get checked every 6 months?? and Congrats on being free 7 years..I dream of the day I can say that.  Regards.

RE: Vulva Cancer

Posted by vikingwoman on Jan 8, 2013 7:48 pm

Thank you for sharing this (you really have had a long road of challenges) and I really understand how difficult this is for you, especially your concerns about sexuality.  The surgery I had removed the lower part of my vulva and the outcome was that there was a lot of nerve damage/loss.  I also had numerous lesions removed in the same area (HPV) since then and that didn't help - so for the last years, I have had very very few sexual experiences due to both a lack of sensitivity along with pain - it has been a difficult time.  Having gone through menopause hasn't helped!  (-:  But in all honesty, now I feel at peace with it and if I feel like trying again, I don't give up.  Sexuality embraces the whole being and that's what I'm trying to remember and focus on.  It's a challenge but it hasn't stopped me completely.  (It's difficult to go into details about sexuality on a community board!)

When you meet with your gyne later this month, have you considered talking about these concerns and ask for advice/help?  Your spirit is as important as your body.  Sometimes I think doctors forget about how we feel and we have to remind them.    I live in a town outside of Toronto but my gyne/oncologist is in Toronto and I can call whenever I have questions/concerns (outside of my regular appointments).  Up until this August, I was going every 6 months but I am now on the 1 year check up unless I find anything unusual.  My last procedure was just over a year ago and I was quite down and out afterwards but after a few months healing, I made myself go back to the Y for my exercise classes because I knew that they helped me before with keeping my spirit on an even keel.  I'm glad I hung in and did it.

You aren't alone in this so if you would like to or need to chat more, please keep in touch.  Kind regards.

Re: Vulva Cancer

Posted by Lorsteel on Mar 29, 2015 3:42 pm

For my 70th birthday in Dec 2014, I was diagnosed with early stage vulvar cancer and am now attending Princess Margaret Hospital in Toronto.  I was to have a radical vulvectomy on Mar 6, but while on the operating table the doctor found the tumour was too close to the urethra so did not want to do the surgery.  I am waiting to start radiation & chemo to shrink the tumour way back, so that it can safely cut out.  My right & left lymph nodes proved to be negative on Mar 6, which is good, but I have to wait for an infection my groin from the lymph drains to clear up before treatment can begin.  Along with lots of other questions, I first need to know if it is normal to have an infection that lasts for 3 weeks after lymph node dissection?
I recently posted by on Mar 27, 2015 3:00 pm the following:  Dear Female Cancer Patients & Survivors,  Since this is only a female cancer, I hope to hear from a woman out there who has, or has survived vulvar cancer.  How and where it was treated and what the outcome was, as well as any other helpful advice that you may want to convey to me.  It would be much appreciated.   Sincerely, L
THIS WAS A REPLY:  Posted by joey on Mar 27, 2015 3:14 pm -- I am afraid that I have not been diagnosed with this particular kind of cancer. Mine is uterine cancer. I must confess that I have not heard of vulvar cancer.  What were your symptoms and how was it diagnosed? If I can help you in any way. Please ask.     MY RESPONSE:  Posted by Lorsteel on Mar 27, 2015 3:46 pm -- Dear Joey   The vulvar is the lining of the inside of the vagina and only 2% of women get this type of cancer, who are usually over 65 years of age.  It is specific to this area only, which is very delicate as you can imagine and is a cancer growth ... not unlike a form of skin cancer, only worse and can spread to organs above (example: the urethra) if not treated.  Sorry, to hear about your uterine cancer and wish you every success in your treatment.  Sincerely, L