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There must be others out there with vaginal cancer!

I have neuro endocrine small cell cancer of the vagina

Come on girls, don’t be shy….we can discuss issues, compare notes, support each other, support our family and friends.
Guys………if your wife, mother sister, girlfriend, or any other female in your life that care about has vaginal cancer, come along and join in, tell us how YOU feel.

  • Post #1
  • Sat Jul 16, 2011
Hi, I'm Dee

Carol, I just now stumbled across this site or I would have responded sooner. You are not alone; I just think finding others with vaginal cancer is just difficult. Information on it is not easy to find, so finding other patients/survivors is even harder.
Anyway, since I found you here I’ve also been reading your blog. Admire your courage and wish you the best.

  • Post #2
  • Thu Feb 9, 2012
Hi, I'm Tia

Hi Carol,

You are so right…it’s very hard to find support for this nasty illness and nobody really knows what it is unless they’ve had it. Please know that I am here to help & through helping, heal.


  • Post #3
  • Sun Apr 8, 2012
Hi, I'm Sonia

Are there any others going through this now???

  • Post #4
  • Sat Mar 26, 2016

Yes I am going through this now. I begin my radiation therapy on Tuesday. Would love feedback on what to expect

  • Post #5
  • Sun Apr 3, 2016
I'm Nina, and I'm a survivor of Recurrent Vaginal Cancer

Hello Ladies, I’m really happy to have found this site! I’ve felt all alone having vaginal cancer! Meaning, there’s all types of support groups for breast, colon, and lung cancer etc., but nothing for vaginal cancers. Anyway, I was diagnosed October 2014 with stage 2. I had surgery to remove the cancer from my lower part of my vagina in November 2014 and Started radiation and chemotherapy in mid December. I must say, it was not easy! Radiation was horrible for me!!! I was burnt from my vagina to the middle of my thighs! My skin peeled so bad that I had to wear men’s boxer briefs just to survive walking! I prayed myself to sleep most nights because God could ONLY put me to sleep until I was sent to the pain clinic to increase my medication…. Unfortunately, I had many complications!

Moving on, after returning to work in April, I still did not feel good! I was down to taking one pain pill every other day to popping pills as if I was receiving radiation again! My back, thigh and left leg pain continue to increase week after week. It was devasting knowing that the cancer was back, but no one would listen to me! I was referred to 3 different doctors and finally my oncologist felt a hard lump and scheduled me another scan. A week later, there was the talk of surgery, AGAIN! By this time, I had already researched EVERYTHING and I knew it wasn’t going to be what I wanted to hear because I had suffered so long. Well, prior to the surgery I became ill and the lump started to spread. The cancer was not only on the opposit side from where it originated but now it had spread to my rectum! December 3, 2015 I had a 7 hour surgery! I was in the hospital for 3 weeks and in a nursing home for 3 additional weeks! I lost over 70 pds.

In closing, I now have a colostomy bag, my lower portion of my vagina and my rectum was removed!!!!! It’s been really, really hard but I thank God everyday for my life!!!!! I try my best to stay strong for my 2 daughters who have been soooooo good to me during this process!!! My oldest moved back home prior to my first diagnosis and my youngest is in her senior year of college and I am proud of them both and they are my best friends, now!My mom use to be, but I didn’t realize it until she died of stage 4 cancer four years ago and I did not think I could make it without her because she was such a great woman! Because of her, I know God and although it may seem like it at times, MY LIFE is NOT over!!!!! Thanks for letting me vent and listening to my story!!!!!!!! You’re not alone!!!!

  • Post #6
  • Mon May 23, 2016
Hi, I'm Kathleen M A.

Had breast cancer in 2012 and then vaginal cancer in 2014. Survived both but have had to deal with vaginal atrophy…to the point of being sore and dry and painful. A result of radiation. Can not take estrogen because of the breast cancer any one have any other ideas. I am thinking of trying something more natural, in hopes of relieving the painful symptoms! Any suggestions?

  • Post #7
  • Mon Jul 11, 2016
Hi, I'm tamratoo

Hi ladies. I am just starting out. I was diagnosed on September 01, 2016 but have not been staged yet. I had surgery on September 14 to remove a large tumor in the lower vagina. Now I am waiting to have imaging done and will have chemo and radiation soon after that. I am amazed at how hard it is to find others with this disease! Are we really so few?

  • Post #8
  • Sat Oct 29, 2016
I'm Pamela R S., and I'm a survivor of Stage 2 Vaginal Cancer

I too have vaginal cancer and have had tumor removed. I am two weeks into my treatments. I wanted to address the vaginal atrophy problem. I too have this, but am told that after my treatments I will be getting a medical dildo to re stretch and afterwards intercourse will be recommended. My doctor says it’s the best remedy. I would talk to your oncologist. My oncologist is the one that discussed all of this with me. While it sounds terrible, I have not yet tried it, but will when the time comes.

  • Post #9
  • Sun Oct 30, 2016
I'm vsinn2000, and I'm a survivor of Vulvar Cancer

I am literally crying tears of joy from finding this site! I have searched and searched for information on vulvar cancer. I was diagnosed 3 weeks ago. It’s been a nightmare. For now, I am just going to say thank you. I’ll pull myself together and be back tomorrow to share and ask questions. Again, thank you so much for doing this!

  • Post #10
  • Mon Nov 27, 2017

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