Vaginal Cancer Support Group

I had IMRT http://www.pamf.org/radonc/tech/imr... at the Univ of Colo Cancer Treatment center from 5/22/06 - 7/18/06. I selected this over pelvic-wide radiation so that damage to my healthy tissues would be less severe. I am glad I did this, because my side effects were bad enough. After each treatment (which was 45 minutes and 7 positions of the arm), my intestines, uterus, and legs felt heavy (like lead) and I would get very tired and my face would be flushed and red. By the end of the week I would be extremely tired. At about 7 days, my skin and vulvar tissues started getting dry, red, and swollen. At about 14 days, the skin was very red and started to itch. I used some topical pain killer (lidocaine) that stung at first, but then numbed it. After about 3 weeks, I started getting more irritated and diarrhea. At 4 weeks, I had some blistering and now the diarrhea is gone and I have constipation from pain meds, and I got a rectal tear. My intestines are now very sensitive to food. Especially raw or spicy food which causes cramping and burning BMs. I inquire about a colonoscopy because I scream when I go, it hurts so bad. I'm glad I did not do this. I'm really in pain and they give me a fentanyl 3-day patch plus oxycodone. I was given a few days off from the radiation to allow the skin to heal some. It hurts so bad I didn't want to eat--nothing in, nothing out! The skin on the sides of my leg is peeling like when you get a bad sunburn, the vulvar tissue has a few open sores. I am also thrust into menopause and start having hot flashes big time. Every 35 minutes for 7 minutes. Decide against hormones because the potential side effects are all those that I am trying to heal--nausea, intestinal discomfort. At the 4 month point I am able to tolerate food better. Still extremely tired. I've had some nausea, but I attribute that to the chemo. After the radiation stopped, I continued to get worse for a couple of weeks. Then it started to heal. I had one spot that was just open and raw for a long time. It was getting smaller, but not completely healed for about 10 months. Now my skin on my leg is pretty normal, maybe a little tougher than it once was, and my vulvar tissue is very sensitive and thin, like new skin. It sticks together and I have to keep it moistened. I have a few spots that are still very painful, but that is from the surgery. I have now had 3 clear PET scans and my doctors are very happy. I can sit in soft chairs for long periods of time. I cannot tolerate hard surfaces for more than about 10 minutes.

Recommendations would be to look at the IMRT instead of the 3-D conformal. Make sure your radiologist, chemotherapist, and surgeon are on the same page (my first ones weren't) and get a second opinion. Keep it clean and it will heal better. Get a shower head on a hose. I also got a filter for the shower head so the water was filtered. Don't wear pants, wear skirts with no underwear. Get the gel packs that you can put in the freezer to cool yourself off. I got some that they make for breast cancer patients. I also got a thing called a Chillo that was like a water pillow that stayed cool that I would put under me in the bed. That helped take the heat out. If you are having a lot of pain ask your doctor for different meds. Get one of those bedside tables that you can roll over the bed. Get a wedge pillow. You will be spending a lot of time in bed because sitting is intolerable and you need to get air to the injured skin. There was also a cream I used that they give to burn patients that helped--Silver Sulfadiazine cream.

Oh, I still have intestinal swelling and some issues with raw food, but I'm doing pretty good now.

I have had external radiation for a week but my stomach was on fire..burnt they gave me Jean cream and that has helped. Has anyone had the internal radiation what am I in for help

for vaginal cancer???think long and hard my friend. my girlfriend now has a colostomy as a result of her radiation therapy.

I received the same treatment and experienced the same side effects. If I'd had known just how barbaric the treatment was going to be, I would have opted instead for the surgery and having a permanent colostomy. I am 4 mos post treatment and am still struggling with side effects.

I am 67 and just getting over my first surgery for vulvar cancer. Now less than 6 months I am getting the itching on the other side. My doctor says surgery is only cure but I read about others who had radiation. Should I get another opinion? I don't want to wear a bag for the rest of my life if I can help it. And what about sex?

i had surgery to remove most of the left vulvar, after healing i've had no problems...hope you all get better...