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Vulvular cancer

kevann
Posts: 7
Joined: Nov 2007

Been getting samples taken every 6 months now for 3yrs,(vingear spray freeze then cut) so far so good but now surgery again for biopsy stage 2 and 3. the strange part is Ive been tested for HIV etc. for my health care profession and neg. never experienced any itch or burning,didn't even notice any signs until my partner seen what looked like a small califlower on the outside of my vagina. Just had a 6 mo. check up and since the sample was taken, it;s not healing, sore and burning. Going for another wide excision. Could someone explain how you know if it;s gone into the lymph nodes or how to soothe the burning feeling?? This is the worst type to explain to people espically a male boss!!!Not much info out there but reading what others on the board have to say! Does help a great deal!!!!

funbeadgirl
Posts: 152
Joined: Jan 2009

Sorry for all you are going through, I understand the part about explaining.I had a partial radical vulvectomy Jan. 09 and doc did a Sentinel Node Biopsy, which tests one node at a time for metatsis, mine had gone into only 1st node, but he checked 4 more and they were clear. I know this is only way to know for sure if it has spread and it is not done routinely, I did research and asked doc to do it, thankfully he was a teacher of oncology and was part of clinical trial for SNB, so he agreed. I did not want to lose all nodes on both sides, which is what they usually do, lymphodema could be a problem.
I see other women on site talk about Aldara cream for itching, maybe ask doc about that. I never had symptoms of burning, itching, or HPV, I went to doc because I had a small cyst on vulva area, never expected it to be a cancer. Mine was a adenocarinoma, which is deep in glandular tissue, very rare. Because of 1 lymph node with cancer, I had 5 1/2 weeks of radiation, not fun, but manageable.
I got over my embarrassment real fast, I figured it is just another body part that needs to be fixed. I look at things differently than others, and I know it is very hard for others to look at things that way. Just know that others feel for you . I hope doc can get to the bottom of your lack of healing. I will be thinking of you. Hang in there.

kevann
Posts: 7
Joined: Nov 2007

Thanks for that info! I'am gonna start writting down some of these questions. There's so many terms it gets confusing. This week the last punch biospy came back as VIN 11 and 111 thats all the terms she used. Did the partial radical vulvectomy take long to recover from and do you still go for 6mo check ups?? It's great to hear a postive take on this and from someone who has understanding of it. Will keep checking in! Thanks

funbeadgirl
Posts: 152
Joined: Jan 2009

My biopsies were the punch biopsies, my first one came back benign, but doc knew something was up and did another one, thankfully he did.
I go for check ups every 3 months still, since it has just been a year, and I will continue for 1 year yet. One thing I did not mention before is that 4 months after I finished my radiation, I was diagnosed with thyroid cancer and had to have another surgery and radioactive iodine treatment, honestly the vulvectomy and radiation was easier to handle than all the problems I had from that surgery. But I made it through that too, and I have a good outlook for my future.
I healed very well from my vulvectomy, I used a squirt bottle to irrigate tender areas after using bathroom , did not wear underwear for a few months or pantihose, and wore 2 sizes larger in knit yoga pants and I rested...very important. That was hard to do because I am a very active person, but I knew it was best for me. I would say that 6 weeks from my surgery it was pretty well healed, but it really took this past year to completely heal...my doc did a great job. My rad/onco said he was an artist, the way he stitched it up. I had 1/2 of right side vulva removed, but also very deep into tissue, and half of labia also,(thankfully the clitoris is still there) sitting feels differently now, but I am back to walking, riding a recumbent bike and taking exercise classes and walking 2 miles a day. My husband and I have also been able to resume an intimate relationship...although the thyroid complications have interfered with that at times. I honestly can not complain about the surgery or the treatments or the recovery, I feel it was o.k., yes I had days where I did not feel good, but I would say 90% of the time I felt 100% good.
I think writing down questions for the doc is a great idea, then you won't forget , also taking another person with you to visits is helpful as another set of ears can help to absorb all that is said.
Vulvar disease is awful, but the lack of information on it is absolutely horrendous! No woman should be made to feel embarrassed about having any one of the many issues that can affect the vulva area. I get SO mad when I hear women refer to the vulva area as the vajayjay or some other cute name...that is why so many women have no idea what is going on...it is not the same as the vagina and I wish women would wise up to the proper body names and educate each other and their daughters...it could save a life. Oh well, I am off my soap box now. Hope you do well and I am glad your doc is keeping tabs on your situation.

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