Vulvar Cancer: squamous cell carcinoma

katenraj

Hi
I am new to this discussion board. Feeling very isolated with my type of cancer.

Have not found too many people I can talk to about it. Dx in March 2012 Stage 11 Squamous Cell Carcinoma of vulva. Had chemo ( 2 cycles of 5 days continuous, 5FU, Cisplatinum) with 25 radiation treatments, plus 3 brachytherapies. Finished mid June and am still healing and recovering.

It was very brutal and I ended up in the hospital for a week for pain control. Feeling better now but still having bathroom control issues post radiation to the rectal area. Also having a lot of hip stiffness. Does anyone out there have this cancer and can I share with you? Thanks so much. Stay Well!!

Feeling alone in Phoenix

dmn

Hello! I am new to this site

Hello! I am new to this site and found your post after searching for my type of cancer.  I totally understand how alone you feel.  I feel like people look at me crazy when I say Vulvar Cancer.  I am 36 and was diagnosed in May 2011 and since have had a full vulvectomy, 3 partials and 10 laser surgeries.  I was hoping the laser I had last Friday would finally be my last but the doctor called this week and said it is back.  So next week I am having a full hysterectomy followed by 6 weeks of radiation.  To say I am overwhelmed would be an understatement. 

 

mmcia

how are you now?

I had quamous cell carcenoma of the Bartholian gland, sometimes called vulvar cancer. I had 4 rounds of chemo and 31 radiation sessions because of lymph node involment and pleased to say that other than painful bowel movements three weeks after my last treatment I have no other symptoms left. A month ago burnt flesh was falling off my labia in chunks, today it's all pretty and pink (lol) but when I hear of people  having long term effects I worry about how much longer I will be in pain every time I have a bowel movement.

 

cathe4

mmcia said:

how are you now?

I had quamous cell carcenoma of the Bartholian gland, sometimes called vulvar cancer. I had 4 rounds of chemo and 31 radiation sessions because of lymph node involment and pleased to say that other than painful bowel movements three weeks after my last treatment I have no other symptoms left. A month ago burnt flesh was falling off my labia in chunks, today it's all pretty and pink (lol) but when I hear of people  having long term effects I worry about how much longer I will be in pain every time I have a bowel movement.

 

Feel isolated too- rare cancer

I recently underwent a radical vulvectomy and a total clitoridectomy as well, for squamous cell carcinoma. I have spent a lot of time researching the outcome for this type of procedure, but there is nothing written about this procedure except discussion of "third world mutilation." My  husband and I feel as though we have somehow slipped through the cracks; no one even wants to talk to us about this issue.Removal of the clitoris seems to be something no one wants to discuss, but here we are trying to put our lives back together in some fashion. Does anyone know anything about resources for this type of procedure that we have not found?

Alexandra

cathe4 said:

Feel isolated too- rare cancer

I recently underwent a radical vulvectomy and a total clitoridectomy as well, for squamous cell carcinoma. I have spent a lot of time researching the outcome for this type of procedure, but there is nothing written about this procedure except discussion of "third world mutilation." My  husband and I feel as though we have somehow slipped through the cracks; no one even wants to talk to us about this issue.Removal of the clitoris seems to be something no one wants to discuss, but here we are trying to put our lives back together in some fashion. Does anyone know anything about resources for this type of procedure that we have not found?

Hello Cathe

Sorry about your situation. I see you already found Gynecological cancer board (other than ovarian and uterine) and getting responses.

Here's a link to cancer sexual side effects: http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/sexualsideeffectsinwomen/sexualityforthewoman/index with a little blurb on vulvectomy.

You already know that you can not have clitoral orgasm, but can still reach vaginal orgasm after cliterectomy, by means of stimulating G-spot or other erogenous zones, like nipples, inner thighs, etc. Unlike men's women's orgasms are more connected to their brain than genitals; once you've healed you libido and arousal will improve.

I don't know where you are, but my Cancer Center has a free sexual health clinic for women with cancer and I went there with my oncologist's referral. Ask your doctor!

Best wishes,

Alexandra 

Patsy1948

Vulvar Cancer

I too had vulvar cancer, back in 2007. I had no insurance, lost my job, because I could not sit, stand nor walk for any length of time. I had to get on Medicaid, but before I could get that I had get social security.I had worked all my life raising my three children on my own. I had stage five, the health doctor told me to tell my family that I had not a long time to live, without treatments. It took me five months to aquire what I needed, to get treatments, at Moffitt Cancer Center in Tampa, Florida. Before I had the treatments started, I took essic tea, in liquid form, it can be bought from Canada, a nurse named cisse in Canada made the brew out of eight herbs, it seem to help cancer patients in canada, when I finally arrived to have a bio, done at Tampa, the tumor had shrank, and I was at stage 3. I was shocked, they told me not to take essic tea, because it might harm the chemo, I did not listen, as they gave me medicine to stop getting sick, when I took essic tea, I ate, drank a lot of water and did not get sick.   They set me up to have an operation, to cut me up down there, I asked why and he said it is the proceedure to do it that way, I told him everyone is an individual, and should be treated that way, I opted not to have the operation, and take the chemo and radiation, I and glad to say that was 6 years ago, did not have to have the operation, so I am a six year survivor.

The chemo and radiation, has it down side too. You will feel that you are walking on sand all the time , your skin will harden down there. About two years after the treatments, I began to shake. And as the years go by the shaking progresses. Mostly in my hands. Your legs will swell, sitting standing, I have  to elevate them at least twice a day. 

And a lot of days you will have diarrhea, I take two Anti-Diarrheal from walmart, daily.  This will control the diarrhea. And you have to watch out what you eat, anything with fiber in it, will cause diarrhea. I am sure they gave you a list, but most of the foods you are not allowed are also good for other parts of the body. So I opted to take the anti-diarrhea. In the beginning I had to take five to six a day, as it would run like water.

If you would like to talk anymore on the subject. I am available. at countrypatsy@yahoo.com, just call me Patsy.

Good Night,Sweet Dreams