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Vulvar Cancer just had surgery

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Comments

  • kimkimgirl
    kimkimgirl Member Posts: 1
    mh1229 said:

    Last surgery was 5/3
    I am still in recovery mode from vulvar melanoma. Stage 3a. 3 tries for clear margins, leaving me disfigured and missing parts. It has been a rough road and have had trouble healing. 2 out of 3 times my stitches have popped open, leaving an open wound. I just had the foley catheter removed after 3 weeks. That was no fun.
    No one really knows where my melanoma was. Just that I have melanoma. Really, how do you explain you have a cancer usually do to sun exposure in a place that NEVER sees the sun?

    I am getting ready to start therapy June 30th. Hoping the cancer is all gone but realizing I need to do everything possible to be here for my 4 kids and hubby. It has been an interesting journey but am glad to be done with surgery. I son't know if I could have done that again. The second time was hard. I looked right after surgery and it was very traumatic. Third time I waited a week but it didn't really matter. I try and remember it is just skin, but it is so devastating. So disfiguring. I feel mangled and undesirable. So awful.

    I am hopeful, though. I know it doesn't sound it... but now that surgery is over I know things will heal and I will find the new me, the new normal. It is going to be okay.

    Melanie

    undesirable in utah
    mh1229,
    I've had disfiguring cancer treatments that left me post-menopausal at the age of 36. The radiation did a lot of damage to my vagina, and it's difficult to have intercourse. I also have feelings of inadequacy when it comes to intimacy. I'm 40 now, and not much has changed. I also have that feeling of being "mangled". I never had surgery to remove my reproductive organs, but the radiation did so much damage that it's impossible to have a normal sex life. I think you should rethink your idea of it being just skin. Our sex makes up so much of who we are and how we think others perceive us. It is very devastating and a big part of yourself. I hope someday for corrective surgery, but I don't know if that will happen. In the meantime, I too continue to be frustrated and disappointed and scared.
    Kim
  • funbeadgirl
    funbeadgirl Member Posts: 181

    undesirable in utah
    mh1229,
    I've had disfiguring cancer treatments that left me post-menopausal at the age of 36. The radiation did a lot of damage to my vagina, and it's difficult to have intercourse. I also have feelings of inadequacy when it comes to intimacy. I'm 40 now, and not much has changed. I also have that feeling of being "mangled". I never had surgery to remove my reproductive organs, but the radiation did so much damage that it's impossible to have a normal sex life. I think you should rethink your idea of it being just skin. Our sex makes up so much of who we are and how we think others perceive us. It is very devastating and a big part of yourself. I hope someday for corrective surgery, but I don't know if that will happen. In the meantime, I too continue to be frustrated and disappointed and scared.
    Kim

    hope for you
    dear kim,
    i am so sorry for what you have had to go through at such a young age, I am 57 and have gone through a radical vulvectomy (Jan 09) for vulvar adenocarcinoma,which put me in instant menopause (i had not started that yet), and radiation, so i do know where you are coming from. I will give you a little perspective and a suggestion. First of all, let me say that how you feel is how you feel and no one should minimize that and secondly, there is help available to make your intimacy issues better.
    I did not have any body image issues per se, but have had issues with the fact my life will never be the same...in the sense that every little health issue seems to go back to the cancer and I feel as if I can't get past it. I was also diagnosed with a second unrelated cancer 3 months after I finished my radiation for the vulvar cancer, so I had a double whammy: 2 surgeries and 2 treatments.What I learned about myself is that I am strong and resilient. I made a conscious decision to hit my illnesses head on and be positive about it, as a result I did lots or research, asked lots of questions and searched out a resolution to my physical issue with intimacy(I am older, but not dead, and I wasn't about to give 'it' up).
    I was referred to a doctor that is a womens health specialist, she deals with women who have gone through cancer and cancer treatments and the issues that rise from that, I lovingly call her my sex doctor, ha ha! She has helped me to get back to 95% of what I was before.There are ways to treat these issues, so please ask your doctor about it, or talk to his nurse if you feel more comfortable. This can be a hard issue for women to talk about, as is vulvar cancer(how do you tell someone about that?), but the more open we are about it, the better for ourselves and all women. That is also probably one of the biggest things I did during my 'event' as I called it...I was very open talking about my cancer and decided to get over being embarrassed...I also am a big proponent for other women to do a monthly self on the vulva area.
    My heart really feels for you kimkim, I wish I could make you feel whole again or say something to make you feel better. I guess in sharing my experience with you I am trying to help you see that things can get better, I just want to encourage you and give you HOPE. If you want more detail about what treatments I had for the sexual issues, I will be glad to tell you about it.Hang in there!
  • Terri37
    Terri37 Member Posts: 1
    yeahright said:

    i know right. But I do have
    i know right. But I do have a update on my status. I just came from my follow up appointment from my surgery. I have (had) stage 1B vulvar cancer. My doctor said that she was able to remove all of the cancer durning my surgery. I still have my jackson pretts and they might be removed next week. All I have to do is go to check up every 3 months

    I am in recovery
    Yeah right, I read that you had "jackson pretts" what exactly is that? I just had surgery 8/31/10, I have about 3 inches of stitches on my right side and they "burnt" did laser surgery to both sides about 70%. I have three small children, two 2 yr olds and one 3 yr old. The hardest thing is feeling guilty that I want to be left alone. I have been in so much pain and they just want me to hold them. I am not sure what I was diagnosed with and wont till i go back on the 7th for my post op when they have my results back. I just wanted to know if you or anyone knew how long I would be in this pain? On top of all I started my period yesterday morning and omg i thought it couldnt get worse. I have also had Merca about 4 times and the nurse says it can complicate things if it gets infected but I've been trying to keep the antibiotic cream on it and take 3 sits bath a day. I am just at my wits end with the pain and my lovely husband (sarcasm) keeps saying when are you gonna get better and maybe if you start doing the things you use to do you will feel better. He does feel bad when he sees me crying just to pee, but it goes away then he jokes about having sex and thinks its funny. I just needed to chat with people that have gone through this and knows what it feels like. I hope everyone is doing good and might have some light in my dark tunnel.
  • sherafrobe
    sherafrobe Member Posts: 1
    Toast said:

    I hear you yeahright. I'm
    I hear you yeahright. I'm getting jealous that breast cancer even gets a special color! Maybe we should claim a color and decorate the world with ribbons!!! LOL! :)

    lavender is the color for
    lavender is the color for the awareness of gyne cancers. My kids and I had the silicone bracelets made
  • dananappi
    dananappi Member Posts: 4

    vinIII
    i had surgery 2/09 and found out 2 wks ago the pap smears were abnormal and had a biopsy all i can get from the onocologist is "when do you want to schedule surgery" i had a large place removed and the laser last time. guess i didn't expect this to come back and don't quite know what to think. makes you feel like you've done something wrong i'm 60 and been married for 40 yrs. the burning and itching is rediculous. wanted to get an answer about the cancer spreading anywhere else in my body but haven't gotten any.
    any information would be greatly appreciated

    Viniii
    I have had 4 surgerys for VIN3 in the last 10 years, its back again, they want to do surgery again, I am thinking I wont, mostly because its probably preexisting and my deductable is 5,000.00 What a world that we cant get the healthcare we need.
  • dananappi
    dananappi Member Posts: 4
    pjbarry13 said:

    Looking is traumatic!
    I am waiting for surgery # 4 - last one was in 2005 and a partial vulvectomy. This on will be more extensive. I am 60 and my first two battles with this were in the 80's with two very painful laser surgeries. Obviously, there is some reason this recurs. Makes you feel like you are a dirty freak! At my age, there is no reason by allopathic medical standards for this to come back....so I am looking into alternative treatments. I don't know how many more times I can deal with this.....it is like living under a huge black cloud waiting for your next biopsy to be the ax! Good luck with your recovery.
    Judy

    Vin3
    PJbarry, My Vin3 is back again, not sure (and cant afford) the surgery right now... what is your opinion and just waiting till I find a job with insurance ?
  • dananappi
    dananappi Member Posts: 4

    hope for you
    dear kim,
    i am so sorry for what you have had to go through at such a young age, I am 57 and have gone through a radical vulvectomy (Jan 09) for vulvar adenocarcinoma,which put me in instant menopause (i had not started that yet), and radiation, so i do know where you are coming from. I will give you a little perspective and a suggestion. First of all, let me say that how you feel is how you feel and no one should minimize that and secondly, there is help available to make your intimacy issues better.
    I did not have any body image issues per se, but have had issues with the fact my life will never be the same...in the sense that every little health issue seems to go back to the cancer and I feel as if I can't get past it. I was also diagnosed with a second unrelated cancer 3 months after I finished my radiation for the vulvar cancer, so I had a double whammy: 2 surgeries and 2 treatments.What I learned about myself is that I am strong and resilient. I made a conscious decision to hit my illnesses head on and be positive about it, as a result I did lots or research, asked lots of questions and searched out a resolution to my physical issue with intimacy(I am older, but not dead, and I wasn't about to give 'it' up).
    I was referred to a doctor that is a womens health specialist, she deals with women who have gone through cancer and cancer treatments and the issues that rise from that, I lovingly call her my sex doctor, ha ha! She has helped me to get back to 95% of what I was before.There are ways to treat these issues, so please ask your doctor about it, or talk to his nurse if you feel more comfortable. This can be a hard issue for women to talk about, as is vulvar cancer(how do you tell someone about that?), but the more open we are about it, the better for ourselves and all women. That is also probably one of the biggest things I did during my 'event' as I called it...I was very open talking about my cancer and decided to get over being embarrassed...I also am a big proponent for other women to do a monthly self on the vulva area.
    My heart really feels for you kimkim, I wish I could make you feel whole again or say something to make you feel better. I guess in sharing my experience with you I am trying to help you see that things can get better, I just want to encourage you and give you HOPE. If you want more detail about what treatments I had for the sexual issues, I will be glad to tell you about it.Hang in there!

    been there am there
    Dear funbead girl , I have had 4 surgerys for VIN3, and my sex life is horrible, my husband of 25 years is frustrated. I am 52 years old now, my gyne just wants to do more surgery and ignores the sex part. I also had a hysterectomy at 45.
  • funbeadgirl
    funbeadgirl Member Posts: 181
    dananappi said:

    been there am there
    Dear funbead girl , I have had 4 surgerys for VIN3, and my sex life is horrible, my husband of 25 years is frustrated. I am 52 years old now, my gyne just wants to do more surgery and ignores the sex part. I also had a hysterectomy at 45.

    new perspective
    dear dananappi, so sorry to hear about your recurrent vulvar issues and surgeries. I am sure it is frustrating. Since I posted that last response, my vulvar cancer has metastasized to my femur bone, I have had another surgery, another round of radiation and am now in chemotherapy. Honestly, today I am looking for reasons to quit it all, the side effects are terrible, I am sick, tired, in pain and my life will never be the same.BUT, I am also looking for reasons to continue, to find my health again and live a full life, whether or not that will ever include a 'sexual' relationship again. I have posted before that intimacy is more than the sex act, and that is what people need to find between them.I am very fortunate to be married for 38 yrs and my husband and I are on the same page with all of this, we made a conscious decision to not put emphasis on this one particular thing, but really the other things in our relationship that make us happy and secure. I realize that is easier said than done for many people, but I only mention it as something to think about. Even still, there are doctors out there that can address these issues and work with you to return to some normalcy.Patience and understanding are key, and education for yourself and your husband is essential.I found that my gyn/onco's nurse was a great source of information for me, maybe you could talk to the nurse and let her know what a hard time this is for you. I hate what cancer has done to my life, and seeing how many others, such as on this board are affected by it also but what I have learned in the past 3 years is that while cancer can overtake your life to a certain extent, we don't have to allow it to control it, we still have control over how we approach and react to what ever our particular situation is. I truly wish you the best and I am so sorry that you have to face another surgery,my hope for you and your husband is to get through it all and be stronger in the end.