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Sometimes I think I'm the only one

Hi, I'm swebb

I have vulvar cancer & sometimes I think I’m the only one. Most people have never heard of it or even know what a vulvar is. I would love for someone in the same situation to chat with me.

  • Post #1
  • Wed Jun 7, 2017
Hi, I'm Melinda F F.

I have had it as well. First, a precancerous condition diagnosed as vulvar cancer when I was twenty five and and then vulvar cancer when I was 58. It is rare

  • Post #2
  • Sun Jun 11, 2017
Hi, I'm swebb

Did you have surgery? How are you doing now? I was diagnosed in my late 40’s, I am now 54. I had most of cancer removed. It has been a hard road to travel.

  • Post #3
  • Sun Jun 11, 2017
Hi, I'm Melinda F F.

Yes, I had my labia minora removed when I was 25. My clitoris removed when I was 58. I also have had breast cancer and had a mastectomy of my left breast. Thought I would never find someone who would accept me and love me again. But, I found the right man and we have a wonderful relationship. I still go to a oncologist gynecologist for follow up because she knows what to look for. I was with a regular gynecologist for 20 years. He knew my history but he still could not figure out what was wrong with me when it came back. I saw about 8 gynecologists in his group – none who had ever seen it.

  • Post #4
  • Sat Jun 17, 2017
I'm Betty, and I'm a survivor of Vulvar Cancer

I have had vulva cancer, am cancer free now, but I had the kind that they couldn’t do surgery because it was to close to the rectum. I was diagnosed in May ‘16, I’m still having side effects from the radiation, I had 4 degree burns, I did radiation and chemo pills, they did find it early however. I live in Palm Desert, CA does anyone of you live here, I would like to get together and talk, it is so rare, a lot of people don’t even know what it is. I do belong to Gildas Club, but no one there has had it either. Sorry this is so long. Just glad to find people that have had it and know what we are going through

  • Post #5
  • Mon Jul 10, 2017
Hi, I'm Melinda F F.

I am in North Carolina. My name is Melinda. I am the one who wrote posts 2 & 4. No chemo or radiation. Just issues with scar tissue. Waiting to see if it will come back. Go in a couple of weeks for my next appt. with the oncologist.

  • Post #6
  • Sun Jul 16, 2017

My name is Mary. I finished treatment 3 months ago. Out patient biopsy and surgery. Chemotherapy and radiation.I also had cancer on bottom of urethra. Pet scan is clear as of now. I thought I was the only one too. Is anyone having trouble with discharge that will not go away? Sorry I did not see these posts sooner.

  • Post #7
  • Mon Aug 28, 2017
Hi, I'm Renita J M.

Hi Mary my name is Nita. Oh honey you are not alone i was diagnosed with Vulvar cancer in October 2017. I couldn’t believe it! Not my first time having a rare cancer. I’m 58 years old and I had surgery at Mayo Clinic in Rochester Mn. That was the best decision Ive ever made! I thankfully did not need chemo. If I had not had cancer before I may not have been so persistent with trying to figure out what could be wrong. I didn’t feel sick or have pain. It’s been a year since mu diagnosis and Im thankful that I found this site to talk to someone. People don’t understand how scarey it is to have a rare cancer. Good luck and God Bless

  • Post #8
  • Mon Jan 15, 2018

My name is Marion and I was diagnosed with vulvar cancer in Dec 2017. Surgery was not an option because one of the tumors was wrapped around a lymph node in my groin. I had 5 courses of chemo and 45 radiation treatments. So far things are under control. Saw the oncologist yesterday. Originally I was diagnosed with lichen planus of the vagina. Treatment was not successful. I was unable to find a doctor who really understood this disease. Cancer was a result of this condition.

  • Post #9
  • Wed Jun 13, 2018
Hi, I'm Kelly D S.

My name is Kelly, 55 from Indiana. I was diagnosed with Squamous Cell Vulvar Cancer Stage 1 (carcinoma in situ). Modified radical vulvectomy surgery with left Inguinal lymph node dissection Feb 2016. I did 30 days of radiation and then was cleared for cancer. Have been dealing with the surgical area still not really healed and stings when I go to the bathroom. They created a special compound to help heal and thicken up the area, but that stings also and not really helping either. Sexual relationship with my husband is almost non-existence due to this aggravated site. Tough on our relationship. Just diagnosed with right Inguinal lymph node tumor. Still trying to determine the course of treatment. Looks like I will have to do chemo (not looking forward to that), but they are not sure I can do more radiation cause it can give you problems with other organs in the area if too much radiation. I started to notice a tenderness in the groin area in April. I had started some yoga so thought it was due to that. By June for my physical, it was larger and I had my Dr look at it. 3 tests later and they diagnosed as recurrent vulvar cancer. This time because of the closeness to my skin and location it will require some plastic surgery. One bright side to that I can get the other incision grafted I think is what they call it with some new skin for that to heal. 2-1/2 years ago the Dr said this type of cancer was treatable. The doctor I saw this week was not as optimistic. Did not give good vibes on a long healthy life. So I do not know what to expect. Thanks for letting me rant. I tend to keep these things to myself.

  • Post #10
  • Fri Aug 17, 2018

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