Vulvar Cancer Survivors

persion said:

what is vulvar displasia
Hi Nancy, I just came back from the gyn, and she said I had a lesion which was HPV related and was high grade to moderate grade dysplasia. So, Monday they will remove the rest of the lesion. I have been very frightened as I have had breast ca.before and even though she said this was not ca, it scares me extremely bad and brings terrible memories and thoughts I wanted to never relive.The dysplasia is from high to moderate but before I looked at the lab, the dr, said it fell in the mediam but the labs said high to med.Why would the dr. say that?
I do not even know how HPV came about. It is all so embarrasing and scarry. I had a pap test at a UTC center and it has been 2 weeks and I went by there and they said their fax and machines was down...UGH. The womens center needs those results. I do not even know what they are. I had previously a colpscopy and something like a ultra sound but it went inside the vagina into the pelvic area. I hope u write back.

Hi Persion, Please post on
Hi Persion, Please post on your site as to how you are doing now. Us new ones would really like to know. Thanks. Wendy Segler

chemo
the chemo was a walk in the park
the only bad thing was the loss of my hair. i never got sick and actually gained weight. i had taxol/carboplatin, the best
i just hit the 4 year mark. i fopund a few leisons and they were biopsied, hoping they come back benign
worst case they get removed.

Extreme vulvar pain after radiation
My grandmother is 86 years old and in 2010 went trough a series of chemotherapy and radiation to treat her Vulvar Cancer. I don't know the specifics of her cancer, because my aunt and her husband are the ones in charge of her, and never give to many details out. My grandmother was not aware that she had cancer, I really have no idea what they told her, they thought it was better in order to keep her optimistic. So she went through hell with both therapies, radiation in the area, left the skin sensitive so even urination is hell for her and chemo left her so confused that she didn't even recognize family members on a Christmas party. So a year has passed by after both treatments where completed with success, but her skin in the area is really affected by the radiation, too sensitive, and she constantly complains of pain and burning sensation, sometimes so strong that it wakes her from sleep. Its so heart breaking to see her complaining, and asking God to take her already. I was wondering if anyone here went through something similar and if there is any remedies you can suggest. She takes baths in warm water with Domeboro, and uses a few cream but with NO success, also they give her pills so she can sleep (advil pm). She is so old an it breaks my heart to see her suffering constantly with pain. She refuses to stay with out underwear even though alone in her room, which I think it would do her good, being without stuff in the area!! PLEASE HELP ME HELP MY GRANDMOTHER, I adore that woman!!

Merilee said:

radiation burn
HI everyone. My cancer is a little different than most of you. I had cancer of the Bartholin's gland. They surgically removed most of it but i still had to go through chemo and radiation. I finished treatment in November of 2007. The doc tells me that the cancer is gone but i am still having a lot of pain and discomfort from the radiation burns of the vulva and vagina. My oncologist is suggesting killing the nerves to that area and my radiation oncologist is telling me that after the two year mark we can do a skin graft or skin flap. Have any of you had to go through any of this? does anyone have suggestions for other ways to get this area to heal? It got better for a little whils and then last May we did needle biopsies to see if the cancer was gone and things have been getting worse from there. I went through 40 hyperbaric oxygen treatments just after Christmas - that was no help at all. Just a huge waste of my time and money. I am getting desperate for some relief. I have turned into a loritab junkie (well not really) but it is to the point now that even they don't help that much and they are tearing up mu stomach. I'm tempted to let the doc go ahead and kill the nerves but I am afraid that I would get an infection or some other problem adn no know it until it was really bad adn I am afraid that it might interfere with the graft if we go ahead with that in a few months. I am very interested to see if anyof you have had similar problems.
Merilee

Vulvar cancer

Hi, I am 43 and was diagnosed with epithiliod sarcoma proximal type of the vulvar region in August. I have had surgery and they removed all of it. Now they want to do radiation.

I am so afraid! They say six weeks of radiation is what they recommend . Any other women out there who could give me some advice? 

How did your burns turn out?

Mastercarver27 said:

Vulvar cancer

Hi, I am 43 and was diagnosed with epithiliod sarcoma proximal type of the vulvar region in August. I have had surgery and they removed all of it. Now they want to do radiation.

I am so afraid! They say six weeks of radiation is what they recommend . Any other women out there who could give me some advice? 

How did your burns turn out?

radiation

Sorry for your diagnosis and having to deal with all that goes with it. I have vulvar adenocarcinoma, and had radiation to the tumor bed in the vulvar region. The radiation I had was called IMRT, yours may be different but I will tell you that in my case,I didnot feel anything during treatments, although I did get very tired afterwards. It was about four weeks into my treatments when skin started feeling sensitive and by fifth week I had what they called 'wet' burns, and they had to halt further treatments for one week. They will give you creams, lotions or gels to use right from the beginning...please use them they way they advise you. Even though you may not think your skin is being affected, it is from the inside out and the creams they give you will condition your skin. Drink lots of water too and get plenty of rest. I had one cream for first couple weeks, then another one with a numbing agent in it after that and yet another one with antibiotic in it. The only time you do not use the cream is just before radiation treatment, but you apply it right after treatment.

i wore very loose clothing, nightgowns with no under garments at home, and un- scented shower cream such as a Dove, and gently pat dry. I'm sure your oncology nurse will go over much of this with you. It is a challenging situation but you can get through it. If you have questions or don't understand something don't be afraid to ask your doctor to clarify it. The only other advice I can offer is to seek out someone that you feel safe with to discuss how you feel, create a support system for yourself and don't be afraid to ask for help.

i wish you the best and hope for you to be able to face this with strength and determination, many of us have been down this road and you can do it too! Be strong and stand firm!

Mom's vulvar cancer

Hi friends, my name is Emily and my mother, Jane, is in wk 5 of 7 for radiation treatment for her vulvar cancer, stage 3, one lymph node involved. She's 81. She's been a real trooper about it and is stoic. She has a week off from rad. next week to give her skin time to heal. But she's very embarrassed about not being able to make it to the restroom in time, lots of 'accidents' and depressed because she's so tired. She's feeling awfully down and I can only help her so much as I can't know exactly what she's going thru.  If anyone out there can share similar problems to let her know that these are common side effects, and she can persevere, I can then read her your stories. She likes for me to read stories about cancer issues others may have had to face. I suspect they make her feel less alone.

Well wishes to you all.

Emily