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vulvar cancer very new to this,,reaching out for help!!

Chinaorise's picture
Chinaorise
Posts: 2
Joined: Aug 2014

Hello My name is Rhonda,I am 46,and this is my story..

Please just starting the "healing process",and any feedback would be greatly appreciated.Looking to meet peole who are going through,or have gone through this...Reaching out for help!

I learned I had squamous cell carcinoma of the vulva in february of 2014.For which I was in the process of a endometrial biopsy of a cyst that was found on my ovary.At that point my doctor notified me he had found a problem that could be much worse than the cyst.He had found a pin spot on the right side of my vulva,and he asked me right then and there."Would you rather wait for a operating room,or would you rather me take this and run a biopsy now?"Of course I voted not to wait..At that point my doctor gave me a pain injection and proceeded to cut out 3cm spot on my vulva...The pain afterwards was excruciating needless to say,but the wait was more painful,after just getting the shock that there is a possibility of cancer.There was a 10 day wait,and when i returned to get my results,this was when the doctor stated," I am sorry Rhonda but I was not able to remove all the cells..." I lost all reasoning at this time,the blow I had just been given was too much too comprehend.My fiancé for only a few months was in the waiting room,I asked the doctor if I could "get him!"I did..And brought him into the room,at this point I could not completely comprehend all that just happened.I felt as if I was just handed a "Death sentence,right when I was just starting to live!!!"..Long story short..I had my surgery in march of 2014.For where they removed the whole right side of my vulva.When I got home that day and looked in the mirror!My horror began..All the stitches and deformation I saw in my mirror..I felt my whole world go down..I lost my self esteem,I have gained weight and I just feel lost.Since then I have always looked at myself in the mirror just trying to wrap my head,I am grateful to be alive yes!But on monday 18 august 2014 I found a spot again,so I went back to my doctor,who then proceeded to do a punch biopsy,now we wait again for another 10 days..I am having some difficulty,so I found this place in hoping to find some peace and find others who are battling this dis-figuring disease!!!PLEASE HELP!!
Thank You Rhonda.

ccfighter
Posts: 476
Joined: Jan 2012

I'm sorry that you are dealing with this diagnosis.  It is not easy but you have come to the right place.  I have a different cancer (cervical). But wanted to reach out and welcome you to the boards.  Other ladies with vulvar cancer will be along soon.  One day at a time.  And please remember, you are beautiful regardless of what happens to you in this life.  It's the beauty on the inside that matters.  Hugs and good luck.  Keep us posted.

Chinaorise's picture
Chinaorise
Posts: 2
Joined: Aug 2014

Thank you so very much..Greatly appreciated

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

cc fighter is right, it is who you are on the inside that counts.  It really makes me sick to see how much is put on physical beauty - the Kardasians??  who needs them!  I think my chemo nurses were the REAL beauties in the world!

Take a breath.  Try to do something for yourself.  If you can afford it maybe a facial or massage.  Take a walk.  Unplug everything, put on your favorite music and blast it - have your own concert.  Dance around - have fun.  

I don't have vulvar cancer, but the women here have gone through a lot.  This thread can be a little quiet, so don't take it wrong if you don't get a response sometimes.  You are not alone.  No one wants to talk about "below the belt" cancers but we are out here and we are proud.  :)

Please be kind to yourself.  I can understand how you feel it is disfiguring, but I "hear" how you want to live - if you are seeking info from others it says more than hopelessness.  

Take a breath Rhonda.  This is a step at a time and you are going to see how strong you are.  You are not alone. 

 

teg
Posts: 13
Joined: Apr 2013

Hi Rhoda,

I have been dealing with vulvar issues since March 2013. I had a partial vulvectomy in March 2013 and the biopsy results were squamous cell initially, then vulvar intraepithelial neoplasm (VIN) 3 on second opinion. I had to have a second procedure in December 2013, but have been clear since then. I understand your sentiments about the disfigurement from the surgery and the frustration that goes long with a cancer diagnosis. You are not alone and the women here are incredibly compassionate and supportive. You will find some great support here, as well as resources to help you deal with your diagnosis. Hang in there.

 

katenraj's picture
katenraj
Posts: 18
Joined: Aug 2012

Dear Rhonda

(I wish I would get notifications when new people come on here, I dont alwys long in, can be months before I come on here) but I logged on today and read your story. Soo sooo sorry you have to go through this and feel so alone. It seems like there are so many people with breast cancer and there is so much information out there for that. But vulvar cancer, is so rare that very few people know about it. Or few women know that they have a vulva!! 

I had Vulvar Ca. Stage II, that was inoperable. It was sq cell carcinoama too but had spread to close to the rectum, urterers. It would have been too messy to operate and I would have ended up with a colostomy. It was freaking scary. I was 47, with 2 young children who always prided herself in being proactive and taking care of her health. I fould the lump myself, NOT my gynocologist. My husband and I were devastated. Thanks to my gyn onc and radiation oncologist, a plan was made after tumor boards in Phoenix, that no surgery would be performed but rather, have chemo and radiation. The good news is that this cancer does react well with radiation. To make a long story short, and after a horrible time with radiation, I am now 2 years post, with another 3 years to go before being in full remission. My perineum is fried and I live in constant pain. I have pain whenever I am intimate with my husband and I cannot believe this has occurrred sometimes. But I am greatful to be able to be a mom to my boys, ages 13 and 15. I can volunteer in their activities and my husband loves me, as disfigured as I am.

Just take it one day at a time and do not get over whelmed (if you can) I know this is not easy. But follow the doctors plans. If your sentinel nodes are negative, that is great. They can treat locally. It will not be easy, but keep your chin up, if you are a spiritual person, go to church or pray. Talk to God, be kind to yourself and treat yourself to a massage as other post suggested. 

Keep good communication with your doctors and do not search the web too much, It can be scary and you will get discouraged. They have come a long way with cancer treatments and it is not a death sentence anymore. I only hope your fiance is doing ok and supportive to you. It is hard for you as your self esteem and self image is tarnished. It is a new you and you  are going to charge forward and live a happy life(with some bumps) 

You can always get a second opinion too if that helps. I went to Mayo Clinic here in Phoenix and they gave me some further insight and perspective to look at. It is very empowering to me to investigate all my options and know all the current treatments out there for me. 

 

Best of luck to you Brenda and charge forward. _uck Cancer.... If you need to reach me outside this site, (I dont always check it ) my email is katenraj@cox. net.

Blessings

Kathleen

funbeadgirl
Posts: 181
Joined: Jan 2009

Dear Rhonda, I'm sorry you are having to deal with vulvar cancer, it is a hard thing to deal with and many people don't understand what it all involves. First and foremost, you are a whole person in mind and spirit, yes the body has changed but our bodies should not define who we are. It does take effort to think that way but it is for your own benefit. Being scared is normal, there is so much control taken away by cancer that it is understandable to feel a loss, but my dear friend, cancer does not have to control your thoughts about you or control how you react to what is happening. It will be okay, you can handle it, believe in yourself and take your power back to fight this and be positive. Even in the worst of times, it's possible to find something good to focus on.

i have been living with vulvar cancer for 6 years, I have vulvar adenocarcinoma, it's rare, look it up, there is nothing about it and no medical protocol for treatment, I'm in no mans land, but I still keep fighting and living my life to the fullest. No one has a guarantee for life, anything can happen to anyone, so we just keep living. Don't let cancer stagnate you. I'm in my second round of chemo treatments, I have many bone metastes, yet I consider myself to be a relatively healthy person, who just happens to also have cancer. I do what I want, when I can, I don't look back and I don't look too far forward, I live in the present. 

The scary unsettling thing about cancer is that you never know when it will reappear, so it's understandable to feel anxiety, but it also means you have to try to fortify yourself to face whatever comes along. Allow yourself to feel all the range of emotions, you deserve that , the only word of caution...don't stay with the negative emotions too long. Have a pity party when you need it, put a time limit on it and then move on, I do it and it helps me put things in perspective.

all in all, I have a great life, as daunting as my situation is, I think that at least I'm not dodging bullets or looking for food and water,  it's what helps me to put things in perspective. I pray for all the ladies that deal with vulvar cancer ( as well as other cancers) that they find strength and courage to stand up and be strong in their fight, I pray that for you too. There is great support here, many understanding, caring ladies who truly know what you are going through. Hang in there!

amanda30
Posts: 3
Joined: Sep 2014

Hi Rhonda,  please read my thread I've posted.  I understand exactly how your feeling!  It's scary, and definitely affects your self esteem!  I'm here!  Best wishes let's keep talking xo

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