vin iii

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Comments

  • Jan_2012
    Jan_2012 Member Posts: 7

    Good Luck . . .
    I was just diagnosed on April 6, 2012 . . . . I have all the same fears and concerns you do. Please let me know how it went today, I am thinking of you . . .

    The Consultation
    Hi lareyna111, thank you for thinking of me..The fears and concerns and the unknown is way worse than the consultation..First they ask all the typical history questions, surgeries, when and so fourth..Then the Doctor looked at the site and then we met in the consultation room, where in my case the Doctor wants to do a partial vulvectomy. I wrote down all my questions..and still have more questions and I want to talk to the Doctor again, after doing research on the internet on a partial vulvectomy..I can have the surgery a week from today, in which I will give her the final answer this Monday to proceed..if no complications, it will be in and out surgery, same day. One thing for sure, the precancer has to go, before it turns into cancer..so, having precancer (dysplasia or Vin111)..well it could certainly have been worse..so, I feel blessed in that area. I will be checking the board daily and will post whats next. lareyna111 if you would like to stay in contact, please email me..we are all in this together..I need the support and I know everyone else does too. I had NEVER heard of a vulvectomy before..I DO think there should be more awareness of this..We are not alone in this..Good luck on your consultation and really my fears were way worse than the consultation..my suggest is; write down everything you want to ask and your concerns..My doctor was very patient and caring.
  • Jan_2012
    Jan_2012 Member Posts: 7

    Good Luck . . .
    I was just diagnosed on April 6, 2012 . . . . I have all the same fears and concerns you do. Please let me know how it went today, I am thinking of you . . .

    The Consultation
    Hi lareyna111, thank you for thinking of me..The fears and concerns and the unknown is way worse than the consultation..First they ask all the typical history questions, surgeries, when and so fourth..Then the Doctor looked at the site and then we met in the consultation room, where in my case the Doctor wants to do a partial vulvectomy. I wrote down all my questions..and still have more questions and I want to talk to the Doctor again, after doing research on the internet on a partial vulvectomy..I can have the surgery a week from today, in which I will give her the final answer this Monday to proceed..if no complications, it will be in and out surgery, same day. One thing for sure, the precancer has to go, before it turns into cancer..so, having precancer (dysplasia or Vin111)..well it could certainly have been worse..so, I feel blessed in that area. I will be checking the board daily and will post whats next. lareyna111 if you would like to stay in contact, please email me..we are all in this together..I need the support and I know everyone else does too. I had NEVER heard of a vulvectomy before..I DO think there should be more awareness of this..We are not alone in this..Good luck on your consultation and really my fears were way worse than the consultation..my suggest is; write down everything you want to ask and your concerns..My doctor was very patient and caring.
  • Jan_2012
    Jan_2012 Member Posts: 7

    Good Luck . . .
    I was just diagnosed on April 6, 2012 . . . . I have all the same fears and concerns you do. Please let me know how it went today, I am thinking of you . . .

    The Consultation
    Hi lareyna111, thank you for thinking of me..The fears and concerns and the unknown is way worse than the consultation..First they ask all the typical history questions, surgeries, when and so fourth..Then the Doctor looked at the site and then we met in the consultation room, where in my case the Doctor wants to do a partial vulvectomy. I wrote down all my questions..and still have more questions and I want to talk to the Doctor again, after doing research on the internet on a partial vulvectomy..I can have the surgery a week from today, in which I will give her the final answer this Monday to proceed..if no complications, it will be in and out surgery, same day. One thing for sure, the precancer has to go, before it turns into cancer..so, having precancer (dysplasia or Vin111)..well it could certainly have been worse..so, I feel blessed in that area. I will be checking the board daily and will post whats next. lareyna111 if you would like to stay in contact, please email me..we are all in this together..I need the support and I know everyone else does too. I had NEVER heard of a vulvectomy before..I DO think there should be more awareness of this..We are not alone in this..Good luck on your consultation and really my fears were way worse than the consultation..my suggest is; write down everything you want to ask and your concerns..My doctor was very patient and caring.
  • Jan_2012
    Jan_2012 Member Posts: 7
    Jan_2012 said:

    The Consultation
    Hi lareyna111, thank you for thinking of me..The fears and concerns and the unknown is way worse than the consultation..First they ask all the typical history questions, surgeries, when and so fourth..Then the Doctor looked at the site and then we met in the consultation room, where in my case the Doctor wants to do a partial vulvectomy. I wrote down all my questions..and still have more questions and I want to talk to the Doctor again, after doing research on the internet on a partial vulvectomy..I can have the surgery a week from today, in which I will give her the final answer this Monday to proceed..if no complications, it will be in and out surgery, same day. One thing for sure, the precancer has to go, before it turns into cancer..so, having precancer (dysplasia or Vin111)..well it could certainly have been worse..so, I feel blessed in that area. I will be checking the board daily and will post whats next. lareyna111 if you would like to stay in contact, please email me..we are all in this together..I need the support and I know everyone else does too. I had NEVER heard of a vulvectomy before..I DO think there should be more awareness of this..We are not alone in this..Good luck on your consultation and really my fears were way worse than the consultation..my suggest is; write down everything you want to ask and your concerns..My doctor was very patient and caring.

    Posting.. :/
    I am so sorry this posted so many times! If I can find a way I will delete all them out except one..
  • macp86
    macp86 Member Posts: 2
    Jan_2012 said:

    Posting.. :/
    I am so sorry this posted so many times! If I can find a way I will delete all them out except one..

    Great News! It can go away!
    I posted my story earlier where I was diagnosed with Vin III after I delivered my first child. I had a small pea size lump that turned out to be Vin III. I had surgery a month after I delivered my daughter to remove the rest of the abnormal cells. It was very wide spread and I had laser treatment on my labia, simple vulvectomy on labia minora and it had spread to the perineum and near my anus. Complete healing from surgery took about 4 months and it was hell. I thought the pain would never go away and was terrified it would all be back at my 6 month check up. Well, I went for my check up a week ago and I am VIN-Free! My doctor (Obgyn-onco) checked everywhere and he said there were no signs of abnormal cells or dysplasia. I was sooo relieved as I was scared I would have to have surgery again! I know there is always a chance it can come back (my next check up is in 6 months) but it can also go away. I have also read cabbage and blueberries have cancer fighting antioxidants in them and I have increased my intake of blueberries and juice red cabbage once a week. The cabbage is horrible but I feel it really has helped. I know there are many people who have posted about their VIN recurrence but I wanted to post a positive hope for all of you that it can be surpressed. I haven't seen any other positive stories and I thought this might give many of you hope. It can be done! Stay on top of it and make sure to get your check ups! I will post again after my check up in December....my prayers are with all of you. Keep your head up and remember-VIN 3 is not cancer!
  • Felicity83
    Felicity83 Member Posts: 1
    macp86 said:

    Great News! It can go away!
    I posted my story earlier where I was diagnosed with Vin III after I delivered my first child. I had a small pea size lump that turned out to be Vin III. I had surgery a month after I delivered my daughter to remove the rest of the abnormal cells. It was very wide spread and I had laser treatment on my labia, simple vulvectomy on labia minora and it had spread to the perineum and near my anus. Complete healing from surgery took about 4 months and it was hell. I thought the pain would never go away and was terrified it would all be back at my 6 month check up. Well, I went for my check up a week ago and I am VIN-Free! My doctor (Obgyn-onco) checked everywhere and he said there were no signs of abnormal cells or dysplasia. I was sooo relieved as I was scared I would have to have surgery again! I know there is always a chance it can come back (my next check up is in 6 months) but it can also go away. I have also read cabbage and blueberries have cancer fighting antioxidants in them and I have increased my intake of blueberries and juice red cabbage once a week. The cabbage is horrible but I feel it really has helped. I know there are many people who have posted about their VIN recurrence but I wanted to post a positive hope for all of you that it can be surpressed. I haven't seen any other positive stories and I thought this might give many of you hope. It can be done! Stay on top of it and make sure to get your check ups! I will post again after my check up in December....my prayers are with all of you. Keep your head up and remember-VIN 3 is not cancer!

    From Argentina...
    Im from Argentina, Im 28 and I was recently diagnosed with Vin III that covers 40% of the area. I should see a specialist this week. I am very scared right now but I'm very glad I found this website!
  • sibbyjaydee
    sibbyjaydee Member Posts: 14

    Good Luck . . .
    I was just diagnosed on April 6, 2012 . . . . I have all the same fears and concerns you do. Please let me know how it went today, I am thinking of you . . .

    VIN III Surgery
    I was dianosed with VIN III almost 4 years ago. After I was sent to A Gyno/Onco, she said that she wanted to surgically remove the infected area (the whole perineum). I was 36yrs old and for whatever reason (scared & finacial concerns), I didn't have the procedure. I just turned 40 this month and my mother has breast cancer that has spread to her bones and now her liver because of her choice to not be proactive with her cancer. I chose to have the surgery just 3 days ago Sept 21st 2012. They removed the whole perineum and was able to use loose skin to reconstruct the area. Thank goodness that i had lost 40lbs last year and had the extra skin to use, or they would have had to taken skin from my butt for the reconstruction. I was never given an option for lazer surgery or creams, which now leaves me questioning my doctors.

    Even after having this surgery, I still don't quite understand the whole VIN III stuff. They will be sending the section that they removed to Pathology to determine if it has infact turned into cancer? if it is cancer, what kind of cancer is it? They never completely say.

    Surgery Day:
    Was performed Outpatient. I had minimal discomfort when I arrived home, due to the anesthesia and pain meds that were given.

    Day 2: I woke up at 5am im the morning with throbbing pain, so i took some pain meds that were perscribed. I had no problems or discomfort walking or standing, and would just sit tilted one way or another. I didn't have too much discomfort urinating, but bowel movements hurt a bit and the process of wiping was painful. I'm using feminine wipes that I spray with Perineal Cleanser spray, which makes the wipes moister with a soapy feel and it seems to make it much easier to wipe. After a bowel movement, I take a sitz bath with epson salt. They also gave me Lidocaine Jelly to help numb the area (it doesn't work too great). After I urinate, i just use a water bottle filled with warm water and pat dry.

    Day 3: Again, Throbbing pain woke me up (took pain meds). I'm actually sitting in an office chair at my computer right now with a pillow, having one section of my buttocks on the pillow and one section off the pillow.

    I haven't had any leakage of any kind and just wear loose fitted shorts. The doctor didn't give me any heads-up on what i would need at home for after the surgery, so i just kinda went with what one of the ladies on this site said about after her surgery and bought pads, water bottle, epson salt & surgical gloves to apply Cream/jelly.

    Over all, post-op hasn't been as bad as I had expected it to be and HOPEFULLY i will return to work on day 5/6 without pain meds (hopefully). Fortunately, I have a very low-impact office job.

    I hope this helps somebody...please ask questions
  • angel7418
    angel7418 Member Posts: 6

    VIN III Surgery
    I was dianosed with VIN III almost 4 years ago. After I was sent to A Gyno/Onco, she said that she wanted to surgically remove the infected area (the whole perineum). I was 36yrs old and for whatever reason (scared & finacial concerns), I didn't have the procedure. I just turned 40 this month and my mother has breast cancer that has spread to her bones and now her liver because of her choice to not be proactive with her cancer. I chose to have the surgery just 3 days ago Sept 21st 2012. They removed the whole perineum and was able to use loose skin to reconstruct the area. Thank goodness that i had lost 40lbs last year and had the extra skin to use, or they would have had to taken skin from my butt for the reconstruction. I was never given an option for lazer surgery or creams, which now leaves me questioning my doctors.

    Even after having this surgery, I still don't quite understand the whole VIN III stuff. They will be sending the section that they removed to Pathology to determine if it has infact turned into cancer? if it is cancer, what kind of cancer is it? They never completely say.

    Surgery Day:
    Was performed Outpatient. I had minimal discomfort when I arrived home, due to the anesthesia and pain meds that were given.

    Day 2: I woke up at 5am im the morning with throbbing pain, so i took some pain meds that were perscribed. I had no problems or discomfort walking or standing, and would just sit tilted one way or another. I didn't have too much discomfort urinating, but bowel movements hurt a bit and the process of wiping was painful. I'm using feminine wipes that I spray with Perineal Cleanser spray, which makes the wipes moister with a soapy feel and it seems to make it much easier to wipe. After a bowel movement, I take a sitz bath with epson salt. They also gave me Lidocaine Jelly to help numb the area (it doesn't work too great). After I urinate, i just use a water bottle filled with warm water and pat dry.

    Day 3: Again, Throbbing pain woke me up (took pain meds). I'm actually sitting in an office chair at my computer right now with a pillow, having one section of my buttocks on the pillow and one section off the pillow.

    I haven't had any leakage of any kind and just wear loose fitted shorts. The doctor didn't give me any heads-up on what i would need at home for after the surgery, so i just kinda went with what one of the ladies on this site said about after her surgery and bought pads, water bottle, epson salt & surgical gloves to apply Cream/jelly.

    Over all, post-op hasn't been as bad as I had expected it to be and HOPEFULLY i will return to work on day 5/6 without pain meds (hopefully). Fortunately, I have a very low-impact office job.

    I hope this helps somebody...please ask questions

    VIN 3
    Hello. I was just reading your story and I surely hope that you are ok. I was diagnosed in 2002 with CIN 3. Pre cancer on my cervix. I had laser surgery and had no more problems until 2008. After another abnormal pap, I had CIN 3 again. I then had Leep surgery. Still having abnormal paps, the CIN 3 was still there. In 2010, I had to have a hysterectomy. I am only 38 years old now so this started young for me. In 2011, I had to have breast surgery but everything is ok with that now. Thank god. Ever since the hysterectomy, I have had to go get checked every year. In Feb. of this year I was told that everything was good and I didn't have to come back for 3 years. Four months ago, I noticed that something didn't feel right down there and I was itching a lot. I thought I had a yeast infection but it didn't go away. I went to the doctors and they did a biopsy. the spot was all white. I now have VIN 3. I just can't win. Surgery is scheduled for Oct 4th. Next week. I'm scared, even after all I have been through.
  • sibbyjaydee
    sibbyjaydee Member Posts: 14
    angel7418 said:

    VIN 3
    Hello. I was just reading your story and I surely hope that you are ok. I was diagnosed in 2002 with CIN 3. Pre cancer on my cervix. I had laser surgery and had no more problems until 2008. After another abnormal pap, I had CIN 3 again. I then had Leep surgery. Still having abnormal paps, the CIN 3 was still there. In 2010, I had to have a hysterectomy. I am only 38 years old now so this started young for me. In 2011, I had to have breast surgery but everything is ok with that now. Thank god. Ever since the hysterectomy, I have had to go get checked every year. In Feb. of this year I was told that everything was good and I didn't have to come back for 3 years. Four months ago, I noticed that something didn't feel right down there and I was itching a lot. I thought I had a yeast infection but it didn't go away. I went to the doctors and they did a biopsy. the spot was all white. I now have VIN 3. I just can't win. Surgery is scheduled for Oct 4th. Next week. I'm scared, even after all I have been through.

    VIN III
    ooh wow Angel...sorry to hear all that you are going through. What kind of surgery will they be performing?
    I feel the same way with the whole (just can't win scenerio). This past week (while still recovering from VIN III surgery) I had to go in for a 2nd Mammogram. They said that i have to have a biopsy performed. This is very emotionally draining.
    Your Surgery:
    Don't be scared, it's over before you know it. Pick up the needed supplies to prepare for recovery. In my case, the doctore didn't advise me on any after surgery supplies, other than feminin wipes. Do yourself a favor and pick up some Perinial Cleanser spray. You can find it at walmart in the Pharmacy section by the condums. It's been a life saver for me. It helps moisten the wipes for a smooth and less painful cleanse. I'm on day 8 post-op. The only thing that's still a small problem is urinating and bowell movements. I went back to work on day 5. Ohh please ask the doctor about using a stool softner, I wish i had started taking a stool softner right after surgery. The pain meds or anesthesia caused constipation and it was not fun..ughh not fun at all.
    Please keep me informed of your progress and if i can help in any way at all, please ask.
  • angel7418
    angel7418 Member Posts: 6

    VIN III
    ooh wow Angel...sorry to hear all that you are going through. What kind of surgery will they be performing?
    I feel the same way with the whole (just can't win scenerio). This past week (while still recovering from VIN III surgery) I had to go in for a 2nd Mammogram. They said that i have to have a biopsy performed. This is very emotionally draining.
    Your Surgery:
    Don't be scared, it's over before you know it. Pick up the needed supplies to prepare for recovery. In my case, the doctore didn't advise me on any after surgery supplies, other than feminin wipes. Do yourself a favor and pick up some Perinial Cleanser spray. You can find it at walmart in the Pharmacy section by the condums. It's been a life saver for me. It helps moisten the wipes for a smooth and less painful cleanse. I'm on day 8 post-op. The only thing that's still a small problem is urinating and bowell movements. I went back to work on day 5. Ohh please ask the doctor about using a stool softner, I wish i had started taking a stool softner right after surgery. The pain meds or anesthesia caused constipation and it was not fun..ughh not fun at all.
    Please keep me informed of your progress and if i can help in any way at all, please ask.

    VIN 3 surgery
    Thank you so much for your concern. So glad to hear that you are feeling better following your surgery. Sorry you are having to go through a mammogram and biopsy. I have surely had that scare. I had some dark green discharge coming from my nipples and my doctor sent me for a mammogram and to see a breast specialist. They did the mammogram first. During the test, the radiologist came in the room and examined me herself. She didn't like something that she was seeing on the film. (This had nothing to do with the discharge.) I had to then have a biopsy which was very scary. It turned out to be cysts, which they do nothing about. I had to wait til I healed from the biopsy to see the specialist. Meanwhile, the discharge color was getting darker. When I seen the doctor, she said it was blood and the duct was severely infected and had to come out. Had surgery last year for that and so far, all checkups have been good.
    THe surgery for VIN 3 is this Thursday, Oct. 4. They are cutting out the whole area. I am getting more and more nervous as it gets closer. I am just so sick of dealing with all of this. One thing after another. Makes me wonder why? The doctor says there is a high risk of it coming back.
    Thank you so much for the tips that you gave me. I'm going to the store after work today to pickup the supplies so that I am prepared. Its so nice to know that there out people out in this world that still care about others. Thanks.
  • Prissie
    Prissie Member Posts: 2
    angel7418 said:

    VIN 3 surgery
    Thank you so much for your concern. So glad to hear that you are feeling better following your surgery. Sorry you are having to go through a mammogram and biopsy. I have surely had that scare. I had some dark green discharge coming from my nipples and my doctor sent me for a mammogram and to see a breast specialist. They did the mammogram first. During the test, the radiologist came in the room and examined me herself. She didn't like something that she was seeing on the film. (This had nothing to do with the discharge.) I had to then have a biopsy which was very scary. It turned out to be cysts, which they do nothing about. I had to wait til I healed from the biopsy to see the specialist. Meanwhile, the discharge color was getting darker. When I seen the doctor, she said it was blood and the duct was severely infected and had to come out. Had surgery last year for that and so far, all checkups have been good.
    THe surgery for VIN 3 is this Thursday, Oct. 4. They are cutting out the whole area. I am getting more and more nervous as it gets closer. I am just so sick of dealing with all of this. One thing after another. Makes me wonder why? The doctor says there is a high risk of it coming back.
    Thank you so much for the tips that you gave me. I'm going to the store after work today to pickup the supplies so that I am prepared. Its so nice to know that there out people out in this world that still care about others. Thanks.

    Vin 3
    I had my surgery 10days ago. I was nervous 2. Didnt sleep all night. I have my followup tomorrow. May you have peace come over you like it did me just before i was taken into the operating room. God has this covered. Lets talk when u feel like it.
  • sibbyjaydee
    sibbyjaydee Member Posts: 14
    angel7418 said:

    VIN 3 surgery
    Thank you so much for your concern. So glad to hear that you are feeling better following your surgery. Sorry you are having to go through a mammogram and biopsy. I have surely had that scare. I had some dark green discharge coming from my nipples and my doctor sent me for a mammogram and to see a breast specialist. They did the mammogram first. During the test, the radiologist came in the room and examined me herself. She didn't like something that she was seeing on the film. (This had nothing to do with the discharge.) I had to then have a biopsy which was very scary. It turned out to be cysts, which they do nothing about. I had to wait til I healed from the biopsy to see the specialist. Meanwhile, the discharge color was getting darker. When I seen the doctor, she said it was blood and the duct was severely infected and had to come out. Had surgery last year for that and so far, all checkups have been good.
    THe surgery for VIN 3 is this Thursday, Oct. 4. They are cutting out the whole area. I am getting more and more nervous as it gets closer. I am just so sick of dealing with all of this. One thing after another. Makes me wonder why? The doctor says there is a high risk of it coming back.
    Thank you so much for the tips that you gave me. I'm going to the store after work today to pickup the supplies so that I am prepared. Its so nice to know that there out people out in this world that still care about others. Thanks.

    Post -OP
    Good luck today Angel! Hope to hear from you in a few days, after you're well enough to sit at a computer.

    Post Op:
    I went to my post-op visit today. The doctor let me know that the section that they removed had infact turned in to cancer. Soo now they want me to see a Colon & Rectal Surgeon to determine if the cancer moved into my Retum? Apparently, if you get Valvar Cancer, it is easy to get Colon Cancer? I also have to schedule a P.E.T. Scan to determine if it has spread to my Lymphnodes. I guess i can do that on the same day i go to have the biopsy done on my breast next week....ugghhh.
    The good news is that all of the above cancers are treatable. Things could be worse...I'm mean lots of other poeple have it far worse than I.

    Chin up people, we will prevail.
  • sibbyjaydee
    sibbyjaydee Member Posts: 14
    Prissie said:

    Vin 3
    I had my surgery 10days ago. I was nervous 2. Didnt sleep all night. I have my followup tomorrow. May you have peace come over you like it did me just before i was taken into the operating room. God has this covered. Lets talk when u feel like it.

    VIN III
    Hey Prissie...sounds like we had surgery almost at the same time.
    If you would, could you give the ladies some tips for Post-Op. Like, what were some of the supplies or things you used to get through recovery?
    I think it would really help people like Angel who are having surgery now or have a scheduled surgery. Doctors really don't give you a heads up on this stuff. (at least mine didn't)

    BTW: I'm 13 days post-op and have no issues what-so-ever with sitting or anything.

    Huggles!
  • mimi6464
    mimi6464 Member Posts: 6

    Post -OP
    Good luck today Angel! Hope to hear from you in a few days, after you're well enough to sit at a computer.

    Post Op:
    I went to my post-op visit today. The doctor let me know that the section that they removed had infact turned in to cancer. Soo now they want me to see a Colon & Rectal Surgeon to determine if the cancer moved into my Retum? Apparently, if you get Valvar Cancer, it is easy to get Colon Cancer? I also have to schedule a P.E.T. Scan to determine if it has spread to my Lymphnodes. I guess i can do that on the same day i go to have the biopsy done on my breast next week....ugghhh.
    The good news is that all of the above cancers are treatable. Things could be worse...I'm mean lots of other poeple have it far worse than I.

    Chin up people, we will prevail.

    SCC or VIN III
    Well I will start here in the VIN III board, as I am confused. Sep of 2011 I had 4 biopsies done and 3 came back as invasive squamous cell carcinoma and one as vin 3. I was sent to a major cancer medical center that also handled all my breast cancer and treatment. These doc's are the cream of the crop. They further sent out the slides to a different lab. I never saw on paper what those results were, but was told I had vin 3. Yet he scheduled me for a partial vulvectomy within 2 weeks. I lost both of my labia minors, lost my entire right labia major, a large portion of the perineum, the hood to the clitorius was removed, and they also lasered the clitorius, and the aft of the rectum. I had stiches every where. Recovery was slow. Went back for my 4 week check up in nov2011 to find out they didn't get it all. Let's try some more laser. I told them after xmas. Jan2012 had more laser. Feb2012 check up results were, " let's do just a little more touch up". I said no, I need a vaginal vacation. So now I'm back at 6 month mark and it has spread like fire. What remains of the clitorial area is engulfed and the perineum area again is involved. The other specialist (whom I saw this time) does not want to cut at this time (good for me). He recommended 6 months of imiquimod. But he also wants to do an immune system workup with me. I know my system isn't the best, had invasive breast cancer 4 years ago with 3 surgeries for that. But I am wondering now, if the original biopsies were in fact invasive SCC as first reported by 2 labs? I do have the lab reports from the partial vulectomy which state the ' resection area is vin 3 ' but what of the original areas removed from biopsies. Anybody else experience conflicting results? Has anybody had results with imiquimod? Thank you if you can offer an opinion one way or the other.
  • Prissie
    Prissie Member Posts: 2

    VIN III
    Hey Prissie...sounds like we had surgery almost at the same time.
    If you would, could you give the ladies some tips for Post-Op. Like, what were some of the supplies or things you used to get through recovery?
    I think it would really help people like Angel who are having surgery now or have a scheduled surgery. Doctors really don't give you a heads up on this stuff. (at least mine didn't)

    BTW: I'm 13 days post-op and have no issues what-so-ever with sitting or anything.

    Huggles!

    Vin 3
    Sibby.... My dr really didnt give me any post surgery info either. Told to use sitz and that was all. I got baby wipes and at night just before bed i squat in empty bathtub and wash good with dove bar soap. I shower with dove also. I got stitches removed yesterday and no more itching. I am healing good and no infection. I go back to be checked for recurrance dec 20. I am sore from long trip to dr but otherwise am doing ok. I plan on doing vinegar test weekly. Later today i will post my story about my diagnosis and treatment.
  • sibbyjaydee
    sibbyjaydee Member Posts: 14
    Prissie said:

    Vin 3
    Sibby.... My dr really didnt give me any post surgery info either. Told to use sitz and that was all. I got baby wipes and at night just before bed i squat in empty bathtub and wash good with dove bar soap. I shower with dove also. I got stitches removed yesterday and no more itching. I am healing good and no infection. I go back to be checked for recurrance dec 20. I am sore from long trip to dr but otherwise am doing ok. I plan on doing vinegar test weekly. Later today i will post my story about my diagnosis and treatment.

    VIN III
    Prissie...thanks for the info. I too used Dove soap, I forgot to mention that. I look forward to hearing your story.

    Angel.... it's day for your post-op. I hope you're doing well!

    Mimi.... wow...sounds like you have been through A LOT. I personnally thought that SCC and VIN III were the same thing, because when I was diagnosed they said VIN III and also used the SCC terminology. If i were you, I would definetely take your list of questions to your oncologist and ask them to explain it to you in layman terms. I wish I could help more, but i too, am over whelmed with their medical terminologies and find myself lost most of the time. I will be making myself a list of questions for my next visit, which I encourage you to do. I also find it helpful to take somebody with you, because what you don't understand when the doctor is talking, the other person might catch. My mother n law will be making it to all my doctors appointments from now on. I soo wish i could help you more with your questions. :(
    I do know that my doctor said that smoking will up the percentage of reoccurance. I'm a smoker and she is on my back to quit.

    Live long and prosper :)
  • mimi6464
    mimi6464 Member Posts: 6

    VIN III
    Prissie...thanks for the info. I too used Dove soap, I forgot to mention that. I look forward to hearing your story.

    Angel.... it's day for your post-op. I hope you're doing well!

    Mimi.... wow...sounds like you have been through A LOT. I personnally thought that SCC and VIN III were the same thing, because when I was diagnosed they said VIN III and also used the SCC terminology. If i were you, I would definetely take your list of questions to your oncologist and ask them to explain it to you in layman terms. I wish I could help more, but i too, am over whelmed with their medical terminologies and find myself lost most of the time. I will be making myself a list of questions for my next visit, which I encourage you to do. I also find it helpful to take somebody with you, because what you don't understand when the doctor is talking, the other person might catch. My mother n law will be making it to all my doctors appointments from now on. I soo wish i could help you more with your questions. :(
    I do know that my doctor said that smoking will up the percentage of reoccurance. I'm a smoker and she is on my back to quit.

    Live long and prosper :)

    Me too :(
    I puff as well, more a closet smoker. When I did ask the other doctor (mine is out of town) I explained that I was confused as to the actual lab reports stating ' invasive squamous cell on 3 of the 4 specimens, then the resection labs stated CIN III (means not invasive. When I said I was confused, he stated, "yes I know it is all very confusing". Like that answer was supposed to un-confuse me!!!! I started imiquimod last thurs. Tonite will be 3rd application. Only 69 more to go. I read alot online yesterday re: the drug. Not alot of good to say about it. But on the good side, it looks like I'm a great canidate for the side effects to a lesser degree, as my immune system is already compromised. Will have to keep a close eye on things below before each treatment. Question: If so many of us have this, how come there are so few of us discussing this? Thanks for being supportive girls!
  • sibbyjaydee
    sibbyjaydee Member Posts: 14
    mimi6464 said:

    Me too :(
    I puff as well, more a closet smoker. When I did ask the other doctor (mine is out of town) I explained that I was confused as to the actual lab reports stating ' invasive squamous cell on 3 of the 4 specimens, then the resection labs stated CIN III (means not invasive. When I said I was confused, he stated, "yes I know it is all very confusing". Like that answer was supposed to un-confuse me!!!! I started imiquimod last thurs. Tonite will be 3rd application. Only 69 more to go. I read alot online yesterday re: the drug. Not alot of good to say about it. But on the good side, it looks like I'm a great canidate for the side effects to a lesser degree, as my immune system is already compromised. Will have to keep a close eye on things below before each treatment. Question: If so many of us have this, how come there are so few of us discussing this? Thanks for being supportive girls!

    :/
    Mimi:

    I don't know why we don't have more girls on this site. From the looks of it, the site goes a few months without getting hits. I think before I posted, nobody had posted since July. My first post was in late September. Looks like we post when we're actually going through our surgeries or diagnosis', and then we stop after the scariest part is over. From my understanding, this stuff is not really that common, and it may seem like there is a lot of us, but there really isn't.
    Imiquimod: I've never heard of it, so i had to look it up :) Does it hurt or burn when you apply it? and is this to help prevent the reoccurance of lesions?

    Doctors: ughhhhhhhh i hate to say it, but I can't stand them. I think half the time they don't really even know what they are doing and we are all just testing rabbits. BUT! sometimes they get the job done. I cannot for the life of me beleive that your Dr. said "yes, yes it is cofusing" seriously?
    I can't stand MY doctors' bedside manner..half the time she sounds like she's being defensive when answering my questions. Like I'm accusing her of something. She was a LITTLE better last week when i saw her, but i suppose it was because she was telling me that mine was cancer and now i have to see if it's spread. Most of us DO have the choice to pick our doctors (at least for now!) and believe me, if my tests come back positive, I WILL be looking for a new doctor...I can't wait to see how my doctor acts when my monster n law is in the room next time...hahahahaha My monther n law is great, and i know she won't let the doctor leave the room until every one of her questions is answered..and believe me, she will have a lot of them.
    Smoking:
    by "closet smoker" do you mean that you don't smoke that much? I'm a pack a day a least. And as easy as it might sound to a non-smoker, you just can't drop it, even if it's life or death. I asked my doctor to give me something to help stop, and she said "we'll see next time"...uhhh okkk?

    ANGEL: Where the heck are you? We want to know how your proceedure and recovery went. she should be on day 5 post-op.

    Huggles to everyone!
  • angel7418
    angel7418 Member Posts: 6

    Post -OP
    Good luck today Angel! Hope to hear from you in a few days, after you're well enough to sit at a computer.

    Post Op:
    I went to my post-op visit today. The doctor let me know that the section that they removed had infact turned in to cancer. Soo now they want me to see a Colon & Rectal Surgeon to determine if the cancer moved into my Retum? Apparently, if you get Valvar Cancer, it is easy to get Colon Cancer? I also have to schedule a P.E.T. Scan to determine if it has spread to my Lymphnodes. I guess i can do that on the same day i go to have the biopsy done on my breast next week....ugghhh.
    The good news is that all of the above cancers are treatable. Things could be worse...I'm mean lots of other poeple have it far worse than I.

    Chin up people, we will prevail.

    Post-OP
    Hello Sibby. I want to thank you for your prayers for me. I am doing ok. Still real sore and haven't been doing much other than laying around. The pain meds tore up my stomach just like I expected. Thank god I was prepared. Thanks for all the great tips. They helped a lot. I think going to the bathroom is the worst. Everyday I feel a little better. Just glad that it is over.
    I am so sorry to hear about your post-op visit. This is just so unfair. If its not one thing, its another. As much as I want to have peace in my life cause it is over, it never seems to be over. As soon as I move on with my life, something else happens. I'm really trying to be strong and I sure hope that you are too. Faith is all that we have. I will be thinking about you so please keep me informed on how you are doing, as I will do the same. I don't go for my post-op appt til Nov. 8.
  • mimi6464
    mimi6464 Member Posts: 6

    :/
    Mimi:

    I don't know why we don't have more girls on this site. From the looks of it, the site goes a few months without getting hits. I think before I posted, nobody had posted since July. My first post was in late September. Looks like we post when we're actually going through our surgeries or diagnosis', and then we stop after the scariest part is over. From my understanding, this stuff is not really that common, and it may seem like there is a lot of us, but there really isn't.
    Imiquimod: I've never heard of it, so i had to look it up :) Does it hurt or burn when you apply it? and is this to help prevent the reoccurance of lesions?

    Doctors: ughhhhhhhh i hate to say it, but I can't stand them. I think half the time they don't really even know what they are doing and we are all just testing rabbits. BUT! sometimes they get the job done. I cannot for the life of me beleive that your Dr. said "yes, yes it is cofusing" seriously?
    I can't stand MY doctors' bedside manner..half the time she sounds like she's being defensive when answering my questions. Like I'm accusing her of something. She was a LITTLE better last week when i saw her, but i suppose it was because she was telling me that mine was cancer and now i have to see if it's spread. Most of us DO have the choice to pick our doctors (at least for now!) and believe me, if my tests come back positive, I WILL be looking for a new doctor...I can't wait to see how my doctor acts when my monster n law is in the room next time...hahahahaha My monther n law is great, and i know she won't let the doctor leave the room until every one of her questions is answered..and believe me, she will have a lot of them.
    Smoking:
    by "closet smoker" do you mean that you don't smoke that much? I'm a pack a day a least. And as easy as it might sound to a non-smoker, you just can't drop it, even if it's life or death. I asked my doctor to give me something to help stop, and she said "we'll see next time"...uhhh okkk?

    ANGEL: Where the heck are you? We want to know how your proceedure and recovery went. she should be on day 5 post-op.

    Huggles to everyone!

    Imiqimod
    Sibby, imiqimod is a topical chemo cream. It is a cell modifier, meaning it changes the structure of the cells (cancer) and how it the immune system reacts to attacking those cells. Because I biopsied for invasive squamous cell, after the first partial vulectomy, my resections (margins) biopsied as vin 3. This is why they did not go my my lymph nodes down there. After 2nd revision surgery, it is spreading like wild fire, so that's why they put me on the imiquimod for 6 months (72 treatments) rather than more cutting/laser. I never had lesions or warts. But yes even after 3 so far (tonight will be #4) it is a little tender, yet starting to itch. The lymph nodes under my arm and neck are screaming at me. My non functioning ovaries have all the sudden wanted to let me know they are still in my body, and I just have an overall ' funny feeling '. They say the 2 week mark is the marker for side effects.....yeah right!!!!

    If Angle just had surgery and is only 5 days out, she most probably is spending alot of time in the bathroom. The time and the maintenance just to urinate is boggling. Sitting (rather than laying down) is done in small amounts.