Vulva cancer

annett, vulvar cancer is probably one of the more rare gynecological cancers.  This thread can be a little quiet but hope someone can chime in and give some advice. 

Prayers for you dear!

annett said:

Update

Have had all pre-surgery tests completed now. It has been confirmed I have stage 3 Vulvar squamous cell cancer. The Doc said she wants to remove all lymph nodes in groin area. Then I get rad and chemo concurrently. Then if mass does not shrink she will do surgery on it. So for now just hanging in until Sept 9th.

 

annett, with the removal of lymph nodes it can lead to lymphedemia.  That's ok, it is better to know in advance as there are things you can do.  The lymph nodes, as you may know, remove fluid from your body and it is a pretty neat network throughout your body.  Most of the women with gynecologic cancer have some form of a compression garment, pantyhose, knee highs, etc....so check with your doctor if you can get your leg measured now so they will know what your leg was BEFORE surgery and can be ready to start treating if if fluid builds up.

I am not trying to scare you, just trying to help prepare you.  I remember thinking I had a blood clot since my leg was swollen, and after finding out it wasn't from an ultrasound, was determined to be lymphedemia.  The physical therapist who specialized in therapy for cancer patients, had to measure my leg and kind of guess when it started to look like the other one and I thought to myself, "Self - this had to be a know, possible side-effect.  Why wasn't I prepared???" 

Maybe you can see if your doctor can recommend one of these therapists.  I wish I had known in advance.

annett said:

stage 111 vulvar

Well I have been told officially I have stage 111 Vulvar Cancer and am 8 days away from surgery. Not looking forward to it much. They going after lymph nodes first and try to shrink mass/lump then a second surgery if needed. Sheesh just killing time here I guess.  Love and prayers to all, Annett

 

Annett, I'm really sorry about what your going through.  That just plain sucks.  I don't have vulva ca but deal with endo-cervical adenocarcinoma.  I actually have not been on here for some time due to a new job and family matters but I did happen to read the thread you started.  Please lean on us girls here ok?  We are here for you.  It's all such a whirlwind isn't it?  You find out the news and then bang! Your life changes and now your focused on your DX!!!  I do recall thinking the worst when I was first DXd! I was so nervous and anxious! But I gathered as much information as I could and learned so much from the wonderful gals here on CSN!!  They literally put me at ease after explaining to me that I probably was NOT going to die anytime soon! LOL, but instead, told me to relax, take a deep breath, make a list of questions to bring to the docs.   They began explaining to me about my type of cancer and they shared their stories with me and I began to feel better.  Knowledge really is power.  I asked a gazillion questions on this website.  I received a gazillion answers and that is how I learned about my type of cancer.  I was then able to ask the right questions at my appointments.  I did not like my first gyn onc DR and have had to change gyn oncs, but you ask as many questions as you need to and take someone with you to all of your DR appts.  My husband came with me to all of my appointments.  It helps to have someone remember what has been told to you.  My first DR just didn't want to talk to me or explain anything to me.  I highly recommend 2nd and 3rd opinions, as well as all the other women on here (they are the ones who encouraged me to get a 2nd and 3rd opinion and I am so greateful for their encouragement!).  You are going to get through this!!  Another great website for vulva ca is Mcmillan cancer support website.  You might get more ressponses from the ladies there about what you are going through as there are many more people with vulva ca actively on that website daily who share your exact DX.  They can walk you through step by step what to expect ok?  So go check out that website.  I was initially told I had endometrial cancer that spread to the cervix and also VIN III and VAINIII. I didn't end up having the VIN/VAIN (was wrongly DXd).  My original gyn/onc never apologized for that!  They never acknowledged their mistake!  They put me through a lot of turmoil for nothing.  Anyway, we will be thinking about you and keep us informed on your progress ok?  Here is the link to Macmillan

www.macmillan.org.uk/

annett said:

Surgery Update

First thank you gals for your support and prayers! I had a Bilateral sentinal inguinal lymph node dissection and a  full inguinofemoral lymph node dissection. I also had Exam by radiology under anestesia checking the Radical Vulvectomy part out. This was to determine how best to shrink that lump/mass trying to prevent surgery on labia (vulvectomy). I had a women gyn onc surgeon, her assistant was a women gyn onc surgeon as well. I actually had a team of most all women. I must say I believe they are very wonderful ladies. Very competent and capable. I am doing great after the procedure and only spent one night at hospital. I have about 30 staples (15 each side) and still have 2 drain tubes. I will get further results from pathologists. Dr. says she is very optomistic about my cure.They have set up all appts for follow ups and chemo. I see radiologist on 17 to determine that end of things. I begin chemo on the 21st and am scheduled for 6x once a week for 6 weeks.  I will also get staples out the 21st. I don't know about the fricking drain tubes tho lol. I will try to update as I continue this journey. I have wonderful family and physicians. Praise the lord I am doing great and having no pain from surgery! Prayers,Hugs and Blessing to all. Annett  

Annett,

im so glad your surgery went smoothly and you have a good plan in place for curative treatment.  This all sounds great.  Keep recovering and building back your strength.  You are going to do great.  Hugs.