I need help

yeahright
yeahright Member Posts: 54
in Gynecological Cancers (other than ovarian and uterine) #1
Ok I was dx with wulvar cancer in April 10. I had a partial vulvectomy, laser treatment and 16 lymph nodes removed. So I just had a dr appt and had to have a biospy done in another spot. The Dr said it looks to be in sit. Then he said thats nothing to worry about its not dangerous. Not dangerous I said not dangerous. First of all. I had vuvlar cancer before and the last time I check that is the first stage before it goes to vuvlvar cancer. So yes it is dangerous in my case. I already had all the treatments needed and it looks to be still coming back. So my question to the group is what is my next step. I dont want to be laser again b/c it didn't work. Cant have them chopping off my you know what every year as though it is nothing. Its not like my you know what is going to grow back nor can I get a fake one. LOL. I get my results back after the new year. I went back to the dr in the first place because of the tell tell symptoms i was have itching and all that other good stuff that comes along with this. I am a little mad. Well not a little mad but really mad because i told this same dr last month when I had my check up and he said oh I dont see anything but a couple of weeks later he like oh wow i see it like i never told him before. I wanted to kick him in the face since he was close to my feet. LOL. I just dont what to do

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Not certain I understand the problem
    You get follow-up to ensure you don't get cancer. The "field cancerization" theory says that the agent(s) that caused your original cancer are still active, and make you at risk for development of additional cancer. Fortunately for you, these changes are detectable before they are invasivel To catch changes in the pre-malignant phase (and CIS is premalignant, not malignant) is a good result.

    If you and your doctor don't see eye to eye, then by all means, go to a different one. But you are who you are for this disease, and the next one will need to follow you, and treat whatever else comes up just as well.

    If you are asking what you or anyone else can do to prevent the development of additional lesions like the one that was just biopsied, well, medical science hasn't progressed that far yet.

    Merry Xmas.
  • yeahright
    yeahright Member Posts: 54
    #3
    longtermsurvivor said:

    Not certain I understand the problem
    You get follow-up to ensure you don't get cancer. The "field cancerization" theory says that the agent(s) that caused your original cancer are still active, and make you at risk for development of additional cancer. Fortunately for you, these changes are detectable before they are invasivel To catch changes in the pre-malignant phase (and CIS is premalignant, not malignant) is a good result.

    If you and your doctor don't see eye to eye, then by all means, go to a different one. But you are who you are for this disease, and the next one will need to follow you, and treat whatever else comes up just as well.

    If you are asking what you or anyone else can do to prevent the development of additional lesions like the one that was just biopsied, well, medical science hasn't progressed that far yet.

    Merry Xmas.

    Thnxs,
    Im just upset
    Thnxs,

    Im just upset because he didnt say anything about whats next he just said its nothing to worry about and walk out the room. I would have been nice if we had a chance to say what the next steps will be. My follow up appointment isn't until the 4th of jan but I would like for him to given me some options so I could think about them and know what to expect
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
    yeahright said:

    Thnxs,
    Im just upset
    Thnxs,

    Im just upset because he didnt say anything about whats next he just said its nothing to worry about and walk out the room. I would have been nice if we had a chance to say what the next steps will be. My follow up appointment isn't until the 4th of jan but I would like for him to given me some options so I could think about them and know what to expect

    Understand
    Unfortunately, some of these guys have no bedside manner whatsoever. They may be good doctors, but it is distressing to be treated this way. Honestly, for CIS your options won't be too bad. They may vary from BCA to minor surgery, but nothing like you've already been through.
  • mamadawg
    mamadawg Member Posts: 17
    #5
    a new one
    Just to let you know, you can get a 'new one's if need be. I had 1/2 of mine removed due to invasive cervical cancer into vaginal wall. They reconstructed my entire left side with muscle from left leg. They had originally thought they were going to have to do it to both sided w/ both legs. Therefore giving me an entire new one. I am 39 and married which is why this was done so my husband and I could still b physically active. So if need be there is a possibility for you., even if it is not the most desirable solution.
  • mh1229
    mh1229 Member Posts: 22
    #6
    mamadawg said:

    a new one
    Just to let you know, you can get a 'new one's if need be. I had 1/2 of mine removed due to invasive cervical cancer into vaginal wall. They reconstructed my entire left side with muscle from left leg. They had originally thought they were going to have to do it to both sided w/ both legs. Therefore giving me an entire new one. I am 39 and married which is why this was done so my husband and I could still b physically active. So if need be there is a possibility for you., even if it is not the most desirable solution.

    consult with a plastic surgeon!
    I had a reconstruction 18 months after my vulvectomy for vulvar melanoma. To get clear margins they cut pretty dip and left me with a "pit". It was like I had two vaginas and was extremely uncomfortable with all the nerves exposed. I first went to the surgeon who did the surgery and he tried to send me away with a prescription for an estrogen cream. His only question was "Can you have sex?" Which I could but it wasn't great... and I couldn't ride a bike and being on my period was horrible. So, my suggestion is to get a plastic surgeon on board. They took a flap from my thigh and removed all the scar tissue and covered the defect. If you google "inguinal thigh flap vulva reconstruction" then click for images. The images scared the crap out of me but it was nice to see that there is a solution.

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