Vulvar Cancer Survivors

2

Comments

  • mplankmplank
    mplankmplank Member Posts: 2
    #22
    CB113 said:

    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

    Vulvar Pre-Cancer
    Hi Cris: It took me about 5 days before I could sit and walk normal after the partial vulvectomy. But it took another 2 weeks before using the bathroom didn't make things worse. I had to be very, very careful and keep the area clean and dry. I was told by my Gyn Oncologist to not use any soap, just water for cleaning. My problem was that by the time that area healed it was time for another bx. I am grateful that I have a great medical team here in Utah. I also have VIN11. The dr. wants me to just keep seeing every 2 months and have any suspious tissue removed.
    I hope you feel better soon!
    Melissa
  • Unknown
    Unknown
    #23
    This comment has been removed by the Moderator
  • Arlene and Bill
    Arlene and Bill Member Posts: 1
    #24
    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

    Radiation Burn
    My wife recently had "radiation to kill" and Brachy Therapy for Vulvar Cancer, Stage 4, Squamous Cell. She had cancer on her bladder, anterior vaginal wall, urethra and some lymph nodes. Recently her PET Scan did not show any cancer however there has been a lot of damage to those areas that will require major surgery in May. Approximately a month after completing the Brachy Therapy she bounced back, had some control of her bladder and was getting around fairly well. However, she developed serious pain in the vulvar area which was determined to be caused from radiation burning. She has begun Hyperbariatric treatments which will take a while for some results. She still has a lot of pain and takes 2 MG of Hydromorphon every three hours and augments it with Arthritic Strength Tylenol 650 MG several times a day. She has difficulty standing and sitting and spends most of her day lying down. I have two questions. Is there a better pain killer for her? Is there anything she can do nutrition-wise, supplements, etc. to help cure her radiation damage. Thank you Bill and Arlene
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #25
    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 ?

    It is possible
    Hi,

    it is possible to establish again an intimate sexual relationship with your husband, but you will probably need to seek the help of a qualified sexual therapist, who are often very sensitive and practical in terms of achieving what you want.

    AussieMaddie
  • margaretwood
    margaretwood Member Posts: 6
    #26
    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
    hi, i was diognosed nov. of 2008. three rounds of chemo then radical vulvectomy and more chemo. im doing really good, i think. i just keep on truckin.
  • margaretwood
    margaretwood Member Posts: 6
    #27
    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

    ppain in vulva area
    i never had radiation but had chemo and surgery. my croich always feels numb and down my inner thighs. its very uncomfortable but i figure its better than being dead. i try to focus on the positive. hope you get better.
  • margaretwood
    margaretwood Member Posts: 6
    #28
    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
    i think you are blessed, pre cancer can be kept under control. you should be fine. about the partial vulvectomy, i had a radical. everything is gone pretty much, but im alive. so dont worry about what anyone else says. keep a positive attitude.
  • Wendy Segler
    Wendy Segler Member Posts: 46
    #29
    margaretwood said:

    vulvar cancer
    hi, i was diognosed nov. of 2008. three rounds of chemo then radical vulvectomy and more chemo. im doing really good, i think. i just keep on truckin.

    Vulvar cancer
    Hi Margaret, Am so sorry you had to go through so much. I also had a vulvectomy nine years ago. I had lymph nodes removed on both legs. They still act up periodically this much later, very puzzling! I want you to feel free to talk to me,or ask questions. I just discovered this site. It would have been a Godsend if I would have had something like this back then, I had nothing. Unless someone has been through it they can't understand,and there seems to be so little research on this particular type. Hope you will respond and maybe we can help each other! Wendy
  • Wendy Segler
    Wendy Segler Member Posts: 46
    #30
    AussieMaddie said:

    It is possible
    Hi,

    it is possible to establish again an intimate sexual relationship with your husband, but you will probably need to seek the help of a qualified sexual therapist, who are often very sensitive and practical in terms of achieving what you want.

    AussieMaddie

    Vulvar cancer
    Hi, what is the latest on your cancer? Hope you are well! Please respond if I can help as a nine year survivor. Wendy
  • Wendy Segler
    Wendy Segler Member Posts: 46
    #31
    AussieMaddie said:

    It is possible
    Hi,

    it is possible to establish again an intimate sexual relationship with your husband, but you will probably need to seek the help of a qualified sexual therapist, who are often very sensitive and practical in terms of achieving what you want.

    AussieMaddie

    Vulvar cancer
    Hi, what is the latest on your cancer? Hope you are well! Please respond if I can help as a nine year survivor. Wendy
  • Wendy Segler
    Wendy Segler Member Posts: 46
    #32
    Arlene and Bill said:

    Radiation Burn
    My wife recently had "radiation to kill" and Brachy Therapy for Vulvar Cancer, Stage 4, Squamous Cell. She had cancer on her bladder, anterior vaginal wall, urethra and some lymph nodes. Recently her PET Scan did not show any cancer however there has been a lot of damage to those areas that will require major surgery in May. Approximately a month after completing the Brachy Therapy she bounced back, had some control of her bladder and was getting around fairly well. However, she developed serious pain in the vulvar area which was determined to be caused from radiation burning. She has begun Hyperbariatric treatments which will take a while for some results. She still has a lot of pain and takes 2 MG of Hydromorphon every three hours and augments it with Arthritic Strength Tylenol 650 MG several times a day. She has difficulty standing and sitting and spends most of her day lying down. I have two questions. Is there a better pain killer for her? Is there anything she can do nutrition-wise, supplements, etc. to help cure her radiation damage. Thank you Bill and Arlene

    Vulvar cancer
    Hi, so sorry about your cancer! I also had stage 4 nine years ago. Can you familiarize me with brachy therapy please? Also, did she have lymph nodes done? How did her surgery in May come out?Nutrition wise, I would recommend as close to a Mediterranian Diet as possible. I wish you both all the best and will be praying adamantly for you both. Hope to hear from you. Wendy
  • marci mustoe
    marci mustoe Member Posts: 6
    #33
    Arlene and Bill said:

    Radiation Burn
    My wife recently had "radiation to kill" and Brachy Therapy for Vulvar Cancer, Stage 4, Squamous Cell. She had cancer on her bladder, anterior vaginal wall, urethra and some lymph nodes. Recently her PET Scan did not show any cancer however there has been a lot of damage to those areas that will require major surgery in May. Approximately a month after completing the Brachy Therapy she bounced back, had some control of her bladder and was getting around fairly well. However, she developed serious pain in the vulvar area which was determined to be caused from radiation burning. She has begun Hyperbariatric treatments which will take a while for some results. She still has a lot of pain and takes 2 MG of Hydromorphon every three hours and augments it with Arthritic Strength Tylenol 650 MG several times a day. She has difficulty standing and sitting and spends most of her day lying down. I have two questions. Is there a better pain killer for her? Is there anything she can do nutrition-wise, supplements, etc. to help cure her radiation damage. Thank you Bill and Arlene

    I am trying to determine whether to go with the rec. of radiation. I have Stage 1-B--so I've had surgery, but all indications are that it hasn't spread anywhere elase. the reason they want to do radiation is that one side of the tumor was so close to the urethra that they only could get a 7mm. clear margin. they want 8 or better. All other perameters for radiation were negative. I am very fearful of this type of radiation. What do you think? It is so wonderful to find other people to communicate with about this situation. I feel very alone. Thanks, Marci p.s. So sorry to hear what you've had to go through!
  • marci mustoe
    marci mustoe Member Posts: 6
    #34
    Arlene and Bill said:

    Radiation Burn
    My wife recently had "radiation to kill" and Brachy Therapy for Vulvar Cancer, Stage 4, Squamous Cell. She had cancer on her bladder, anterior vaginal wall, urethra and some lymph nodes. Recently her PET Scan did not show any cancer however there has been a lot of damage to those areas that will require major surgery in May. Approximately a month after completing the Brachy Therapy she bounced back, had some control of her bladder and was getting around fairly well. However, she developed serious pain in the vulvar area which was determined to be caused from radiation burning. She has begun Hyperbariatric treatments which will take a while for some results. She still has a lot of pain and takes 2 MG of Hydromorphon every three hours and augments it with Arthritic Strength Tylenol 650 MG several times a day. She has difficulty standing and sitting and spends most of her day lying down. I have two questions. Is there a better pain killer for her? Is there anything she can do nutrition-wise, supplements, etc. to help cure her radiation damage. Thank you Bill and Arlene

    I am trying to determine whether to go with the rec. of radiation. I have Stage 1-B--so I've had surgery, but all indications are that it hasn't spread anywhere elase. the reason they want to do radiation is that one side of the tumor was so close to the urethra that they only could get a 7mm. clear margin. they want 8 or better. All other perameters for radiation were negative. I am very fearful of this type of radiation. What do you think? It is so wonderful to find other people to communicate with about this situation. I feel very alone. Thanks, Marci p.s. So sorry to hear what you've had to go through!
  • marci mustoe
    marci mustoe Member Posts: 6
    #35
    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

    Just read your potrying to decide about radiation
    I'm going to research Protocel 50. I too am afraid of the side effects of radiation on this particular area. I don't know if you'll see this-so many years later= but wanted to try to connect. Even if I don't hear from you, it was very helpful to read what you had to say. Thanks!! Marci
  • marci mustoe
    marci mustoe Member Posts: 6
    #36
    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

    I'm not sure how to get in touch. I had surgery on October 10th--and yesterday the radiologist ( and my oncolgist) recommended radiation. I am leaning towards refusing this treatment and would like to hear more about the alternative you chose--Protocel 50. I don't know if you still follow this online-support--but would like to hear from anyone about alternative treatments, post surgery , to radiation. My cancer doesn't appear to have spread to the lymph nodes. The reason for the recommendation was based on a smaloler than desirable clear edge on one side of the tumor--only able to get 7mm. instead of 8 or better, as it was right next to the urethra. All other paramets were negative. Any input would be helpful. Thanks so much , Marci
  • marci mustoe
    marci mustoe Member Posts: 6
    #37
    Wendy Segler said:

    Vulvar cancer
    Hi, what is the latest on your cancer? Hope you are well! Please respond if I can help as a nine year survivor. Wendy

    I appreciate your posts, Wendy
    Hello Wendy,

    You are one of the most recent contributors. I don't remember if you wrote about your treatment. I'm glad you're a nine year survivor!! I am a a 3 week ( almost ) survivor, post surgery. My big dilemma now is whether to pursue any other forms of treatment. My oncologist and the radiologuist, both recommend radiation. I had stage 1-B cancer with no evidense of metastasis. The only reason they rec. radiation is that they only got a 7mm edge on one side of the tumor as it was right next to the urethra. Otherwise, they wouldn't rec. it. I'm not wanting to do radiation in this area--but wish I had more info. It's an uncharted territory for the most part I'm glad to have found this web site--otherwise I don't know if anyone out there knows what this is about! Write if you have time. Marci
  • marci mustoe
    marci mustoe Member Posts: 6
    #38
    margaretwood said:

    vulvar cancer
    hi, i was diognosed nov. of 2008. three rounds of chemo then radical vulvectomy and more chemo. im doing really good, i think. i just keep on truckin.

    I'm considering Chemo instead of radiation
    Hi Margaret, Do you have any thoughts about this? What was Chemo like for you? thanks for any info. Marci.
  • Wendy Segler
    Wendy Segler Member Posts: 46
    #39
    marci mustoe said:

    I appreciate your posts, Wendy
    Hello Wendy,

    You are one of the most recent contributors. I don't remember if you wrote about your treatment. I'm glad you're a nine year survivor!! I am a a 3 week ( almost ) survivor, post surgery. My big dilemma now is whether to pursue any other forms of treatment. My oncologist and the radiologuist, both recommend radiation. I had stage 1-B cancer with no evidense of metastasis. The only reason they rec. radiation is that they only got a 7mm edge on one side of the tumor as it was right next to the urethra. Otherwise, they wouldn't rec. it. I'm not wanting to do radiation in this area--but wish I had more info. It's an uncharted territory for the most part I'm glad to have found this web site--otherwise I don't know if anyone out there knows what this is about! Write if you have time. Marci

    Cancer
    Hi Marci, so sorry I had not gotten back to you sooner. Would like to help you in any way possible! Please email me at Wendysegler12@gmail.com So it has been about a month since your surgery how are you feeling? Are you having in home nursing care? I had infections when released from hospital at Loma Linda in Calif. What state are you in? I did not have to have radiation, so I can't tell you first hand, but have read and talked first hand with others who have, and because that's such a tender area they had horrendous burns and pain. When you read others stories, some mention using, I believe Prototol 70. I need to check that for accuracy, so email me for sure! I totally know the feeling of wanting and needing to talk with someone, (anyone) who has been through it. I kept begging the doctors to connect me with someone who had gone through the same thing and they never did, and the Cancer Society only had one lady for phone connection, and it had been 20 years earlier, and she had forgotten a lot. It would have helped me tremendously if I had a site like this to reach out to. Even just the fact that every woman I even mentioned Vulva Cancer too,they didn't even know what a vulva was, much less want to talk about it. My heart bleeds for you knowing what you must be going through!!! So email me soon! Wendy
  • Wendy Segler
    Wendy Segler Member Posts: 46
    #40
    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, what type of pre cancer did you have? I have had lichen sclerosis, and actinic keritosis recently being treated for it is supposedly caused by sun damage, but I certainly didn't sun myself in the vulva area, and have not been out in the sun for at least thirty years. Please email me Wendysegler12@gmail.com and let me know how you are doing now. Wendy
  • Wendy Segler
    Wendy Segler Member Posts: 46
    #41
    margaretwood said:

    vulva pre cancer
    i think you are blessed, pre cancer can be kept under control. you should be fine. about the partial vulvectomy, i had a radical. everything is gone pretty much, but im alive. so dont worry about what anyone else says. keep a positive attitude.

    Cancer
    Hi Margaret, please also email me Wendysegler12@gmail.com as to what is the latest with your journey. Blessings Wendy

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