Vulvar Cancer Survivors

Nancytahoe

I would really like to hear from any of you that have survived your vulvar cancer, and the treatments.
Please post an update on yourself on this web site, so others, including myself can followup on you. I have noticed, there are several people who posted their stories on the personal web pages, but no followup.

As a two year vulvar cancer survivor, I want to know how others are doing.

Please share your current status, so others can read, and learn.

Nancytahoe

DEBBIE617

I have been cancer free for nine years. I first had vulvar cancer in 1997 and had surgery in August of that year. I then had uterine cancer the following year and again had surgery in April 98. I now am a clean bill of health and I make sure if there is anything unusual on my body, I get checked out. I would love to hear from other survivors of vulvar or uterine cancer.

Nancytahoe

DEBBIE617 said:

I have been cancer free for nine years. I first had vulvar cancer in 1997 and had surgery in August of that year. I then had uterine cancer the following year and again had surgery in April 98. I now am a clean bill of health and I make sure if there is anything unusual on my body, I get checked out. I would love to hear from other survivors of vulvar or uterine cancer.

I am so glad you posted the fact that you are a 9 year vulvar cancer survivor. I have been in touch with 6 other ladies with vulvar cancer. 3 of them made it, although they had a very rough time with damage from the radiation. One woman did die March 1st. The other 2 just contacted me this year. Terri or twillow on this site is the latest one to have contacted me. She would love to hear that you have survived 9 years. Rhonda, or cancernomore on this site, has had the most problems with her recovery.
You may have seen my postings. I refused radiation after my surgery. I took Protocel 50 a non-toxic alternative, and have been cancer free since Jan 6th 2004 which was the date of my surgery. I was too afraid of damage from radiation in that sensitive area. Did you have chemo and or radiation? I imagine back in 1997 there wasn't much known about vulvar cancer. Even on this site, there are less than 300 under vulvar cancer.

I really appreciate hearing from you. My other cancer buddies as I call them, have all been very supportive of each other. It's nice to hear a survivor story. Most of the "hits" I get off this web site, are newly diagnosed patients, that want info.

Thanks for your positive message.

Nancytahoe

kevann

Nancytahoe said:

I am so glad you posted the fact that you are a 9 year vulvar cancer survivor. I have been in touch with 6 other ladies with vulvar cancer. 3 of them made it, although they had a very rough time with damage from the radiation. One woman did die March 1st. The other 2 just contacted me this year. Terri or twillow on this site is the latest one to have contacted me. She would love to hear that you have survived 9 years. Rhonda, or cancernomore on this site, has had the most problems with her recovery.
You may have seen my postings. I refused radiation after my surgery. I took Protocel 50 a non-toxic alternative, and have been cancer free since Jan 6th 2004 which was the date of my surgery. I was too afraid of damage from radiation in that sensitive area. Did you have chemo and or radiation? I imagine back in 1997 there wasn't much known about vulvar cancer. Even on this site, there are less than 300 under vulvar cancer.

I really appreciate hearing from you. My other cancer buddies as I call them, have all been very supportive of each other. It's nice to hear a survivor story. Most of the "hits" I get off this web site, are newly diagnosed patients, that want info.

Thanks for your positive message.

Nancytahoe

don't know how to use this? anyone there?

nsquirrely

Hello
It is nice to see that there are others here that have been dxed and treated for vulvar cancer.
I was dxed last year in March and would enjoy being in contact with others who have had to deal with this type of cancer.

leeaquinn68

nsquirrely said:

Hello
It is nice to see that there are others here that have been dxed and treated for vulvar cancer.
I was dxed last year in March and would enjoy being in contact with others who have had to deal with this type of cancer.

vulvar cancer
I dont know if u stll check this...I would love to hear some good news. I had surgery 5 weeks ago and im pretty scared and feel all alone. My family is very supportive but they dont understand. I have so many questions and dont know who to ask

nsquirrely

leeaquinn68 said:

vulvar cancer
I dont know if u stll check this...I would love to hear some good news. I had surgery 5 weeks ago and im pretty scared and feel all alone. My family is very supportive but they dont understand. I have so many questions and dont know who to ask

vulvar cancer
Hi lee I do check out the boards ar least every other day or so when I get a chance. I've tried several times to make contact with someone who has gone thru it. It would be nice to be able to talk with someone who understands this cancer.
If you want you can email me @ nsquirrely@aol.com
Hugs and prayers,
Happy Holidays
Shirley

funbeadgirl

leeaquinn68 said:

vulvar cancer
I dont know if u stll check this...I would love to hear some good news. I had surgery 5 weeks ago and im pretty scared and feel all alone. My family is very supportive but they dont understand. I have so many questions and dont know who to ask

vulvar cancer
Hi there,
I had surgery 3 weeks ago. Will have to go thru radiation, as it spread to 1 lymph node. I hope you are doing well. I guess for me, not knowing about this cancer and all that I found
out about since my diagnosis has made me mad. Mostly because women are not educated about the outside of their bodies. I am amazed at the blank stare I get from others when I tell them what I have, then when I have to go into the description, they always make a face. I feel for you and the loneliness it brings. Talking to someone else that has gone through this would be very valuable to me.
I am 55 yrs old, and otherwise a very healthy person. My first diag. came back clear, doc. removed rest of lump and decided to send it in again just because he did not like the looks of the tissue. I consider myself very fortunate. I have a very positive outlook and hope you do also.
Any support that I can give you I would be glad to give. Hang in there!

Best wishes, Suzie

poopsie

funbeadgirl said:

vulvar cancer
Hi there,
I had surgery 3 weeks ago. Will have to go thru radiation, as it spread to 1 lymph node. I hope you are doing well. I guess for me, not knowing about this cancer and all that I found
out about since my diagnosis has made me mad. Mostly because women are not educated about the outside of their bodies. I am amazed at the blank stare I get from others when I tell them what I have, then when I have to go into the description, they always make a face. I feel for you and the loneliness it brings. Talking to someone else that has gone through this would be very valuable to me.
I am 55 yrs old, and otherwise a very healthy person. My first diag. came back clear, doc. removed rest of lump and decided to send it in again just because he did not like the looks of the tissue. I consider myself very fortunate. I have a very positive outlook and hope you do also.
Any support that I can give you I would be glad to give. Hang in there!

Best wishes, Suzie

feeling alone
my name is pam The 9th of January I had surgery on the vulva and anus area to remove pre-cancerous cells . The surgery went and the pain was so bad it seemed like whatever they put me on it didn't take the pain away . After only 6 days the hospital wanted me to go back to remove the stitches. I told them I couldn't walk or drive that far in this much pain. I come back the 26 of january, when I went back to see the dr. at this time he removed the one the wouldn't dissolve on there own. He told me then that the cancer spot at the anus was cancer and i was given 3 choices . 1. let it go and prey it don't kill me . 2. colostomy bag. 3. chemo. or radiation. but what I didn't know at that time was he removed my clitoris, I found out with a mirror and what a shock it was . I now feel like a freak and not only did they do the vulvectomy twice now I can't feel like a woman. I now have the doctor appt for them to make the spot for the radiation and it just had to fall on my birthday feb. 27th. I cant have chemo , my counts are too low and this isn't an option for me. I never went through this and it scares me so bad . will I be able to walk or just lay down all the time. I have nothing left down there and now I fell less attractive to my husband, what do you do? Life without feeling any excitement during sex? Is there anyone else feeling this alful ?

funbeadgirl

poopsie said:

feeling alone
my name is pam The 9th of January I had surgery on the vulva and anus area to remove pre-cancerous cells . The surgery went and the pain was so bad it seemed like whatever they put me on it didn't take the pain away . After only 6 days the hospital wanted me to go back to remove the stitches. I told them I couldn't walk or drive that far in this much pain. I come back the 26 of january, when I went back to see the dr. at this time he removed the one the wouldn't dissolve on there own. He told me then that the cancer spot at the anus was cancer and i was given 3 choices . 1. let it go and prey it don't kill me . 2. colostomy bag. 3. chemo. or radiation. but what I didn't know at that time was he removed my clitoris, I found out with a mirror and what a shock it was . I now feel like a freak and not only did they do the vulvectomy twice now I can't feel like a woman. I now have the doctor appt for them to make the spot for the radiation and it just had to fall on my birthday feb. 27th. I cant have chemo , my counts are too low and this isn't an option for me. I never went through this and it scares me so bad . will I be able to walk or just lay down all the time. I have nothing left down there and now I fell less attractive to my husband, what do you do? Life without feeling any excitement during sex? Is there anyone else feeling this alful ?

vulvectomy
Dear Pam,
I am sorry about all the pain you are in, and having a hard time with recovery, my heart goes out to you. My vulvar cancer was stage 3, but in only 1 lymph node, so I will have to have radiation, which I will start soon. I was diagnosed 12/23/08, surgery 1/12/09, so it went pretty quick, but I did a lot of research on the internet to gather as much info as I could to make a decision. My surgery was not as radical as yours, and did not affect my anus, but I totally get where you are coming from relating to the sexual dysfunction issue.
If you are not comfortable with your doctor 100%, please consider another opinion for further treatment, you deserve to be heard with all your fears and needs.
You are not a freak, you are a women that has been put in a freakish nightmare situation.
Please hang in there sister, don't be afraid to question your doc and tell him what you need.
Best wishes for a brighter day! Suzie

nsquirrely

poopsie said:

feeling alone
my name is pam The 9th of January I had surgery on the vulva and anus area to remove pre-cancerous cells . The surgery went and the pain was so bad it seemed like whatever they put me on it didn't take the pain away . After only 6 days the hospital wanted me to go back to remove the stitches. I told them I couldn't walk or drive that far in this much pain. I come back the 26 of january, when I went back to see the dr. at this time he removed the one the wouldn't dissolve on there own. He told me then that the cancer spot at the anus was cancer and i was given 3 choices . 1. let it go and prey it don't kill me . 2. colostomy bag. 3. chemo. or radiation. but what I didn't know at that time was he removed my clitoris, I found out with a mirror and what a shock it was . I now feel like a freak and not only did they do the vulvectomy twice now I can't feel like a woman. I now have the doctor appt for them to make the spot for the radiation and it just had to fall on my birthday feb. 27th. I cant have chemo , my counts are too low and this isn't an option for me. I never went through this and it scares me so bad . will I be able to walk or just lay down all the time. I have nothing left down there and now I fell less attractive to my husband, what do you do? Life without feeling any excitement during sex? Is there anyone else feeling this alful ?

Vulvar cancer
Poopsie
I am truly sadden to hear that yet another person is going thru this devastating cancer. I was dx with vulva squamous skin cell carcinoma stage three with spread to two lymph nodes. I had a partial vulvectomy and removal of a total of 15 lypmh nodes in the groin area. After the surgery, I had 8 weeks of radiation. At that point, they did a catscan and the results were clear. I had three different doctors involved in my treatment. My gyn, a gyn oncologist and a radiation oncologist. I'm now two years out from my dx and due for a visit to my oncologist in March.
I can tell from your posting that this has been a very trumatic experience for you. I am so sorry you are going thru this. I don't know if you are type of person who wants to know everything they can tell you but I was and still tend to want to know everything there is to know. The difficult part is knowing what to ask. It not a very talked about type of cancer and even the doctors don't seem to want to go into details about it. The best advice I can give you is to ask questions and insist on details about everything thing they intend to do. Even the smallest detail left unsaid can be devastating later on for you. One example would be they never told you about the removal of your clitoris prior to the surgery.
Radiation treatments were a positive experience for me. I had an excellent doctor and team working with me for it. I hope that you have a good experience and that it is successful for you.
Please, feel free to contact me. I will do my best to support you thru your treatment.
Hugs and prayers
Shirley

poopsie

funbeadgirl said:

vulvectomy
Dear Pam,
I am sorry about all the pain you are in, and having a hard time with recovery, my heart goes out to you. My vulvar cancer was stage 3, but in only 1 lymph node, so I will have to have radiation, which I will start soon. I was diagnosed 12/23/08, surgery 1/12/09, so it went pretty quick, but I did a lot of research on the internet to gather as much info as I could to make a decision. My surgery was not as radical as yours, and did not affect my anus, but I totally get where you are coming from relating to the sexual dysfunction issue.
If you are not comfortable with your doctor 100%, please consider another opinion for further treatment, you deserve to be heard with all your fears and needs.
You are not a freak, you are a women that has been put in a freakish nightmare situation.
Please hang in there sister, don't be afraid to question your doc and tell him what you need.
Best wishes for a brighter day! Suzie

thank you
I never thought there were so many people out there that cares so much. My prayers are with you also and I hope we remain friends through all of this. I would love to call you a friend. I am comfortable with my doctor 100% and trust them so this is one less worry for me and thanks to your note I feel alot better ,thanks again Pam

poopsie

nsquirrely said:

Vulvar cancer
Poopsie
I am truly sadden to hear that yet another person is going thru this devastating cancer. I was dx with vulva squamous skin cell carcinoma stage three with spread to two lymph nodes. I had a partial vulvectomy and removal of a total of 15 lypmh nodes in the groin area. After the surgery, I had 8 weeks of radiation. At that point, they did a catscan and the results were clear. I had three different doctors involved in my treatment. My gyn, a gyn oncologist and a radiation oncologist. I'm now two years out from my dx and due for a visit to my oncologist in March.
I can tell from your posting that this has been a very trumatic experience for you. I am so sorry you are going thru this. I don't know if you are type of person who wants to know everything they can tell you but I was and still tend to want to know everything there is to know. The difficult part is knowing what to ask. It not a very talked about type of cancer and even the doctors don't seem to want to go into details about it. The best advice I can give you is to ask questions and insist on details about everything thing they intend to do. Even the smallest detail left unsaid can be devastating later on for you. One example would be they never told you about the removal of your clitoris prior to the surgery.
Radiation treatments were a positive experience for me. I had an excellent doctor and team working with me for it. I hope that you have a good experience and that it is successful for you.
Please, feel free to contact me. I will do my best to support you thru your treatment.
Hugs and prayers
Shirley

thank you for being there
There are so many people out there that cares so much. My prayers are with you also . I would love to call you a friend. this has been a very trumatic experience and I wish no one else would ever have to go though this but we all know it isn't that way in life.I wrote everything down i wanted to ask the doctors . As far as the removal of your clitoris it would have been nice if they would have told be prior to the surgery. I guess in my state of mind it was best to wait, who really knows. I hope the Radiation treatments are a positive experience for me as well. I wish you success with your recovery. Once again thank you for contacting me. A Friend always Pam

funbeadgirl

poopsie said:

thank you for being there
There are so many people out there that cares so much. My prayers are with you also . I would love to call you a friend. this has been a very trumatic experience and I wish no one else would ever have to go though this but we all know it isn't that way in life.I wrote everything down i wanted to ask the doctors . As far as the removal of your clitoris it would have been nice if they would have told be prior to the surgery. I guess in my state of mind it was best to wait, who really knows. I hope the Radiation treatments are a positive experience for me as well. I wish you success with your recovery. Once again thank you for contacting me. A Friend always Pam

vulvar cancer
Just an update on my treatment. I meet with rad/onco yesterday and had my consult and set up for radiation. I will begin my treatments on Feb. 25th, and will have to have 28 in total. I really hit it off well with the doctor, so I am felling confident that I will receive good care. I am a little concerned about the type of clothing I will be able to wear once the burns start, any suggestions?
Hope you all are doing great and look forward to Spring, as I am!
Best wishes to all. Sue

Merilee

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

WOMAN I AM

poopsie said:

feeling alone
my name is pam The 9th of January I had surgery on the vulva and anus area to remove pre-cancerous cells . The surgery went and the pain was so bad it seemed like whatever they put me on it didn't take the pain away . After only 6 days the hospital wanted me to go back to remove the stitches. I told them I couldn't walk or drive that far in this much pain. I come back the 26 of january, when I went back to see the dr. at this time he removed the one the wouldn't dissolve on there own. He told me then that the cancer spot at the anus was cancer and i was given 3 choices . 1. let it go and prey it don't kill me . 2. colostomy bag. 3. chemo. or radiation. but what I didn't know at that time was he removed my clitoris, I found out with a mirror and what a shock it was . I now feel like a freak and not only did they do the vulvectomy twice now I can't feel like a woman. I now have the doctor appt for them to make the spot for the radiation and it just had to fall on my birthday feb. 27th. I cant have chemo , my counts are too low and this isn't an option for me. I never went through this and it scares me so bad . will I be able to walk or just lay down all the time. I have nothing left down there and now I fell less attractive to my husband, what do you do? Life without feeling any excitement during sex? Is there anyone else feeling this alful ?

HOW ARE U DOING
HI, I RECENTLY 04/02/09 HAD A PARTIAL vulectomy and well u know how it goes got any pointers on bathing and when does the swelling go down.they sent my noyds out will find out next week if spread didn't see any thing on the CT scan.but i am still scared i looked with the mirror also and was shocked i haven't let my mate see yet i don't think he will like not feelin very sexy .I have cousin whom had a total hys and she says sex issex yea right clitoris is pale pink not bright like it use to be numbness in thighs i know it takes time.

WOMAN I AM

nsquirrely said:

Hello
It is nice to see that there are others here that have been dxed and treated for vulvar cancer.
I was dxed last year in March and would enjoy being in contact with others who have had to deal with this type of cancer.

still here
hi, new round here but we are one in the same,how have you been doing i am 2 weeks post surgery so you know i have tons of questions,bathing,panties how to handle your period

funbeadgirl

WOMAN I AM said:

still here
hi, new round here but we are one in the same,how have you been doing i am 2 weeks post surgery so you know i have tons of questions,bathing,panties how to handle your period

post surgery questions
Hope you are doing well after your surgery. I had surgery in January, and just finished 5 1/2 weeks of radiation. As far as clothing goes, I found that no underwear is probably best,although I have wore mens cotton knit boxers ( the loose kind)under a skirt, which is also very comfortable. I actually like having the freedom of not wearing underwear now, but I do miss wearing jeans, but soon I will be back in those also.I also wear loose cotton knit pants, maybe a size or two larger than you would normally wear.. I also just wore a night gown while around the house, this also helped with the hot flashes I get since the radiation fried my ovaries. I don't expect to get a period anymore, at least that is what doctor told me. I shower everyday,careful not to use very hot water, and using a gentle cleanser like Dove, something without fragrance, and then patting dry very carefully. I still am healing from the radiation burns, so I am not sure how I will feel after everything is healed, you know the anatomy is different now, and I think sitting will be something to get used to with having only 1/2 a vulva. I guess bike riding is gone forever.
I actually had my period the first day I started radiation, and I had to use a tampon, not very comfortable. I don't know what I will do if I do get a period, I am not comfortable with underwear yet, since that area still has burns that are healing. If I can give you any more insight let me know.

persion

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.

mplankmplank

Vulva pre-cancer
Hi: I have not been diagnosed with cancer yet. I have had 4 different bx's and one surgical partial vulvectomy. They have all come back pre cancer. I am grateful for that. I got my last test results today and although they showed no cancer the doctor wanted me to join this web page for support. I have been dealing with the HPV since 2/08. I am only 39 and I am nervous that this will be a life long battle. It is embarrasing for me to talk to even family members about all this. The responses I have recieved from the few I told have been crued and hurtful. I know my case is different then the other ones here but I still hope that I can talk to some one about my feelings.

CB113

mplankmplank said:

Vulva pre-cancer
Hi: I have not been diagnosed with cancer yet. I have had 4 different bx's and one surgical partial vulvectomy. They have all come back pre cancer. I am grateful for that. I got my last test results today and although they showed no cancer the doctor wanted me to join this web page for support. I have been dealing with the HPV since 2/08. I am only 39 and I am nervous that this will be a life long battle. It is embarrasing for me to talk to even family members about all this. The responses I have recieved from the few I told have been crued and hurtful. I know my case is different then the other ones here but I still hope that I can talk to some one about my feelings.

Vulva pre-cancer
hi mplankmplankadd,
I'm in a somewhat similar situation. I'm 26 years old, and was told I had pre-cancer cells and VIN II after having a biopsy done by my gyn, though he told me he was certain I do not have HPV. I had the first of 2 partial vulvectomies 6 days ago by a gyn oncologist. The pathology report also came back with just pre-cancer for me, but some of the lumps have started to swell and bleed, and I am starting to worry. I can't sit down, and find it extremely hard to go to the bathroom. I'm normally an active person, and am finding this immobility and constant pain hard to take.

Does anyone know how long the average recovery is? Any suggestions for pain relief? I feel like I've tried everything!

Cris