Vulvectomy....looking for someone who understands.....

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Comments

  • JanuaryDaybreak
    JanuaryDaybreak Member Posts: 20 Member
    edited March 2017 #22
    Vajayjay

    Much love to you, my dear sister.  I sent you a PM a while back, but I don't know how the PM system here works.  :(

    Do you have a cancer social worker that you can vent to?  She may also be able to recommend counseling, other support groupas, or even financial aid.  I'm fortunate that the radiation oncologist works with the best cancer hospital in our metroplex; he and his team, including the social worker, have been so good to me.

    I do understand how frustrated you must feel, and how hard it is to feel that your loved ones can truly understand.  Like you and the other ladies, the emotional aspect has been just as difficult as the physical aspect for me.  So I can wholeheartedly empathize.  I've already told my story, so I won't hijack your thread.   What I will do, however, is hold a hand out to you, and crawl together with you and my other sisters to the finish line.  I'd hug you if I could, but for now, I hope a virtual hug will do.  I'll PM you my e-mail address if you'd like, and we can talk any time.

    Be kind to yourself, and remember that you are still the same person you were before.  You're so much more than your diagnosis.  

  • Lynette324
    Lynette324 Member Posts: 1
    edited April 2017 #23
    Feeling lost

    I had what I thought was an infected hair bump. My main issue was that it was there for a couple of years. It took 3 doctors before I finally was able to get it removed with a partial vulvectomy. Had it removed March 2, had a checkup March 24 and my life changed. He sent me straight to Gynecologist oncologist. She also did a vulvectomy, same spot but deeper and longer. That was April 12 2017. I feel blessed no treatment is necessary. I will now have checkups every 3 months for 2 years. This is my new normal but how do I handle the mental effects?

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,011 Member
    Lynette - I am very sorry to

    Lynette - I am very sorry to hear that three doctors did not pay attention to you, it doesn't sound like they conducted further test either.  Please be sure to continue  working with only the gynecologic oncologist going forward.

  • Kacsalley
    Kacsalley Member Posts: 6

    Lynette - I am very sorry to

    Lynette - I am very sorry to hear that three doctors did not pay attention to you, it doesn't sound like they conducted further test either.  Please be sure to continue  working with only the gynecologic oncologist going forward.

    Thank you 4 being there...

    I am just starting on this journey and it is reassuring to know you are there. I hope you will help me thru this as my family is having so many other difficulties now. I don't want to burden them, but I know this won't be easy. Thank you...hope to give you good news about me after my oncologist visit. Vulvar cancer, haven't gotten the full news yet.    

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,011 Member
    Kacsalley, I am from the

    Kacsalley, I am from the Uterine board but, like a few others, check-in on our sisters with other 'below the belt', gynecologic cancers.  Please be sure you are working with a gynecologic oncologist - this is a super specialized field and they deal with our cancers the best.  

    I can't even imagine what was going through my families mind, and while I shared some, there were certainly the deep, dark thoughts that only my mind would go to.  It is helpful to have others out there who are going, or have gone, through something similar.  

    I hope you, January Daybreak, Lynette - to name a few, come and share with eachother your experiences.  It can get quiet here but you are never alone.  It is just finding the others who can share.

  • stellareporter
    stellareporter Member Posts: 6
    Looking for someone to talk to

    Hi there!  This is my first time on this board.  I am 47 years old and have had a partial vulvectomy in December.  My margins were all clear after surgery. I just went for my six month checkup and it's back.  I have an appointment a week from tomorrow and I am scared that I'm looking at a full vulvectomy.  I am really scared.  It's not something that you can really talk to people about unless they've been through it. 

  • Mybooboo0128
    Mybooboo0128 Member Posts: 1
    edited March 2021 #28
    Partial vulvectomy

    February 24, 2021 had partial vulvectomy. Never even knew there was such a thing. Found out January 28, hence my name Mybooboo0128. Still waiting on pathology. Scared to pieces, husband and family trying hard to be understanding, but not sure anyone that hasnt gone through this can be. Anyway, Ill keep in touch and keep everyone in my prayers. .Not sure if any of y'all are still checking in. Be well and safe...as if Covid and quarantine wasn't bad enough! xoxo