Response To Opal On Vulvar Cancer

Opal,
When you don't have HPV envolved, what do you do? I don't have HPV so the only thing they can do is cut....right? I was once told radiation will not help and no Chemo will help either.
UGH........I hate this disease! I do take antioxidants but I continue to smoke, I just can't seem to stop that nasty habit, yet.
Judy

Judy, with or without HPV, they will surgically try to remove as much as possible the affected area and try to get clear margins, too. I think radiation therapy will help. Just Google "vulvar cancer, radiation" and see on that subject.

I was a smoker (still am) who stopped smoking last year for about 4 months. When I got the call from my gyn/onc after the biopsy telling me they found some malignant cells, I went straight out of the house and got me a pack of cigarettes and started smoking again. Unfortunately, I haven't been able to stop since then.

I did start taking antidepressants this summer and now I'm feeling a lot better. I wished I'd started it earlier to get over the emotional side of this whole thing. It must be frustrating to have surgery over and over again. Do you have to have more surgery? How are you feeling emotionally? In the meantime, take care. Opal

Opal, I still smoke and my oncologist says it contributes to Vulvar Cancer. I have had two laser surgeries for VIN III this year and just found out that It has reocurred and am scheduled for surgery (Lazer) after the holidays. I have been batteling this since 1992, with two wide excisions and many lazer surgeries. I took antioxidants for many years but it really made no difference.
Emotionally I am just tired of the inconvience and pain from the surgery. My husband has been a wonderful support for me.
I keep hoping there is a "trial" treatment I can get in on. Anything is better than nothing.
Judy K.

Judy, I'm sorry that you have to go back and get laser after the holidays. It sucks to have that feeling that it never ends. Since 1992! Even if you're getting tired of all the surgeries, it gives me hope that maybe I can live that long, too. But I hate it when I can't plan things ahead, because I never know when something comes back. I was sooo happy that after 1 yr, I still didn't have anything and I just hope that next spring when I go to my next appt, it's still OK. That you can have VIN III without having any of the high strains of HPV is a mystery to me. How can that happen? I know that testing for HPV sometimes show negative, but later if it's done again when the immune system is not optimal, they'll find it. Are you sure about this? I think smoking is dangerous and contributes to many cancers. Emotional stress, not enough sleep, bad nutrition, and smoking, all together probably trigered my vulvar cancer. I was never checked for HPV. For what? Does it change anything to know which strains I have? The treatment is the same. I supposed that when most of the population has some kind of HPV, why bother. I'm the lucky one who pulled the short straw on this and got vulvar cancer. Many others get cervical cancer, also because of the same HPV strain. That's more common and accepted. When we have VIN, VAIN, AIN, we feel dirtier than the women with CIN. I don't know why, maybe because it's more on the outside. I hope you'll still have a Merry Christmas, and not think about the laser next year. That is, if you can. I hope it's not burning, stinging, or itching too bad. I'm still smoking, too. I'm still thinking that one day I'll stop, but now with antdepressants and with the end of the year stress, I'll have to wait for another chance. Right now...no way. So nice that your husband is being so supportive. Mine started an affair with someone when I was bedridden, but now everything became normal after this escapade ended. My husband had to learn how to support me. He was telling me everything will be OK and seemed very optimistic. Along the way, I was scared, mad, insecure, dissapointed und sad. He really got onto my nerves for always telling me how good I looked and that everything will be like before, when I knew that everything in my life had changed. A partial vulvectomy + partial vaginectomy + lymphedema of the left leg is not easy to live with. Now, I'm blabbering. Judy, I wish you a Merry Christmas and hope you'll stay in touch. If you want to vent to me, you're always welcome. This is an open forum, so I shouldn't be blabbering, but under this Christmas stress, I'm starting to get crazy.(hugs) Opal

Hi Opal...sorry it took me so long to get back.
Been feeling crappy for some time now, I had my laser surgery on Jan. 10th and they discovered an abnormal EKG and lab work. Finally, I am scheduled for a cardiac cath tomorrow (Jan 27) for 2 blocked arteries. They will do what they need to once they are in there (Stints).
Can we write by email somehow?
Judy

Hi Juday,
I'm sorry you've been feeling crappy lately, but I will guess that what they found out about your heart when you went in for the laser brought you down. I hope they can take care of your arteries so it'll almost be good as new again. I'll be praying that you'll do fine and that everything will go OK. I won't mind writing you by email, or you writing me. But I'm reluctant to write my email address here because of spams. But I'll take the chance and hope my ISP has a good spam filter. This is it:

Write me an email when you feel like and when you need me. I'll be here. I hope you're healing from the laser surgery by now. I don't know how long it takes to heal because I never had one done on me.

Opal

Thank You for removing the e-address. Judy has answered me, so I'll contact her thru email.
Opal