vulvar cancer

245

Comments

  • Bumperless
    Bumperless Member Posts: 13

    Someone new to this
    I came across this site while researching.I was diagnosed 5 years ago with Lichen Sclerosus. Its been a pain just living with that. 3 years ago i was preg and during that pregnancy the Lichen seemed to go into remission. then a good year after that it was clear. then it flared up yet again. I knew there was scar tissue to deal with and thought that this was what was happening in the perinial(sp) area. Due to splitting/healing over top each other. Last week i noticed a lump on the left side. then bleeding came. so here i am thinking it a boil or something. but couldnt sit it hurt so bad. went to the ER cause of the pain and bleeding. he looks at it for literally 20 seconds... says its an abssess and bam.,shot of penicilin and baxtrim script. I went to the GYN today and I get hit with " I am not even gonna biopsy this, I believe you have Vulvar Cancer, im sending you to a specialist". I was shocked, I am scared, but not giving up hope. I keep telling myself she said THINK. But I know there is something wrong there. Im waiting for them to set up the appointment with this specialist that is 3 hours away. This waiting to know what is happening is just the worst. Im glad I came across this site. I have been and will be in the same place as you all with no one to talk to and no on to understand what pain this is.

    You are not alone
    I had lichens atrophy for twenty years. When I felt a lump that was the size of half a pencil eraser, the gyn Dr. Sent me to a specialist. He said it would take three to six months to get in to see him. The specialist was in a different state even. When I got there in two and a half months, the specialist was out for the day. The nurse practitioner saw it and dismissed it as a wart. It was an inch long by then. She sent me across town to another gyn doctor. This doctor had some experience and decided to take a biopsy. A week or two later, he referred me to a surgeon who specialized in vulvar cancer. Dr. Stephanie King of Hahnemann University Hospital did my surgery within two weeks. It was followed by chemo and radiation to the left groin and pelvis.

    It is a shame that more Doctors are not aware of vulva conditions.

    Since then I had a wide excision for a pre cancer in 2008, and this year 2010 I had a clitorisectomy, an incision and drainage, and five cancerous lymph nodes removed from my right groin followed by six weeks of radiation to the vulva and groin. It has been seven weeks since the radiation and I am having hip pains. All the burns have healed.
  • momof2girlz
    momof2girlz Member Posts: 1
    BOO5 said:

    Vulvar Cancer
    I found a great website and support group website. It is eyesontheprize.org It has support groups and you can tell your story about vulvar cancer. Check it out.

    VIN III
    Thanks to all of you for sharing your stories and support. I just found out I have VIN III. I was scheduled for sugery this coming Monday, but I cancelled when I found out I would have to pay about $5,000 for it. My doctor kept saying it was no big deal, so I figured I had plenty of time to take care of it when it was more convenient. After reading your stories and advice, I see that this is not something to put off. I am calling my Doctor back on Monday and rescheduling the surgery for her first available time. I am so scared and I cannot find very much information. Everything says this "could" turn into cancer but could take decades, if at all. I can clearly see that this is not always the case and I was foolish to put a price on my health and my future.
  • bubbles44403
    bubbles44403 Member Posts: 7

    Someone new to this
    I came across this site while researching.I was diagnosed 5 years ago with Lichen Sclerosus. Its been a pain just living with that. 3 years ago i was preg and during that pregnancy the Lichen seemed to go into remission. then a good year after that it was clear. then it flared up yet again. I knew there was scar tissue to deal with and thought that this was what was happening in the perinial(sp) area. Due to splitting/healing over top each other. Last week i noticed a lump on the left side. then bleeding came. so here i am thinking it a boil or something. but couldnt sit it hurt so bad. went to the ER cause of the pain and bleeding. he looks at it for literally 20 seconds... says its an abssess and bam.,shot of penicilin and baxtrim script. I went to the GYN today and I get hit with " I am not even gonna biopsy this, I believe you have Vulvar Cancer, im sending you to a specialist". I was shocked, I am scared, but not giving up hope. I keep telling myself she said THINK. But I know there is something wrong there. Im waiting for them to set up the appointment with this specialist that is 3 hours away. This waiting to know what is happening is just the worst. Im glad I came across this site. I have been and will be in the same place as you all with no one to talk to and no on to understand what pain this is.

    update
    Well i went to see the specialist in Akron. From sight he confirmed with the GYN that it is Vulvar Cancer. He also did a biop and i about went through the roof! it felt like he took the whole thing off... I have also had a CT scan of chest abdom and pelvic and have to return on the 2nd of Nov for results. Im not asking the question why at all.. its an unanswerable question. But I ma asking what to we have to do and when can we get started.. Im scared of course and have been told by many that hearing the word is scarier then the treatment. Im holding out hope that it will all go smoothly. I have been fighting with myself to call or not call to see if they have the results yet, but this morning the phone rang from their office... it was only a reminder call for the sppointment lol but my heart did do a flip when i seen the number... I will gladly post results.
  • funbeadgirl
    funbeadgirl Member Posts: 181

    update
    Well i went to see the specialist in Akron. From sight he confirmed with the GYN that it is Vulvar Cancer. He also did a biop and i about went through the roof! it felt like he took the whole thing off... I have also had a CT scan of chest abdom and pelvic and have to return on the 2nd of Nov for results. Im not asking the question why at all.. its an unanswerable question. But I ma asking what to we have to do and when can we get started.. Im scared of course and have been told by many that hearing the word is scarier then the treatment. Im holding out hope that it will all go smoothly. I have been fighting with myself to call or not call to see if they have the results yet, but this morning the phone rang from their office... it was only a reminder call for the sppointment lol but my heart did do a flip when i seen the number... I will gladly post results.

    waiting for results
    I am so sorry for your diagnosis...hearing the word cancer is very scary and not being able to be in control of what that will bring into your life is probably the hardest to deal with. I had Vulvar cancer diagnosis last year and had surgery and radiation, so I do know where you are at now. The scans they do are to stage the disease, just to determine if the cancer is anywhere else in body, so it is a good thing that they do them. I would imagine you have an appointment with your oncologist, and then they will go over all results and explain the approach they recommend for treatment. While you are waiting for the results it seems like it takes so long, but once you get into the treatment phase, everything is a blur. I would encourage you to take someone else along to the the appointment, a spouse, your mom, any trusted person. You will get a lot of information and not be able to process it all, so having another pair of ears there will help, also write down any questions you have and take along to ask doctor, and write down what they tell you also.
    I wish the best for you...I will think of you on the 2nd, I will be having an MRI that day...I too am waiting for results from a previous PET scan that did not come back good.Hang in there!
  • bubbles44403
    bubbles44403 Member Posts: 7

    waiting for results
    I am so sorry for your diagnosis...hearing the word cancer is very scary and not being able to be in control of what that will bring into your life is probably the hardest to deal with. I had Vulvar cancer diagnosis last year and had surgery and radiation, so I do know where you are at now. The scans they do are to stage the disease, just to determine if the cancer is anywhere else in body, so it is a good thing that they do them. I would imagine you have an appointment with your oncologist, and then they will go over all results and explain the approach they recommend for treatment. While you are waiting for the results it seems like it takes so long, but once you get into the treatment phase, everything is a blur. I would encourage you to take someone else along to the the appointment, a spouse, your mom, any trusted person. You will get a lot of information and not be able to process it all, so having another pair of ears there will help, also write down any questions you have and take along to ask doctor, and write down what they tell you also.
    I wish the best for you...I will think of you on the 2nd, I will be having an MRI that day...I too am waiting for results from a previous PET scan that did not come back good.Hang in there!

    the waiting is miserable
    Thank you fun. I truly am at a loss with all of this. I think I have actually gotten over the initial shock of it and have come to terms with it. Sometimes It feels like its not real due to the waiting. But I know its real when I cant sit down without a cushion or a donut. doing 3 to 4 sits baths a day along with popping pain pills to get me through the day. I have so many questions going through my head, I really have no clue what to ask. My Mother will be with me. Shes been with me at both other appointments. Thank god I have her. Thank you again for your encouraging words, I will for sure post results. Hope everything goes ok for you as well. I appreciate finding this site. Being able to talk to others about this is so comforting. Just knowing im not alone is what is keeping me sain.
  • Bumperless
    Bumperless Member Posts: 13

    waiting for results
    I am so sorry for your diagnosis...hearing the word cancer is very scary and not being able to be in control of what that will bring into your life is probably the hardest to deal with. I had Vulvar cancer diagnosis last year and had surgery and radiation, so I do know where you are at now. The scans they do are to stage the disease, just to determine if the cancer is anywhere else in body, so it is a good thing that they do them. I would imagine you have an appointment with your oncologist, and then they will go over all results and explain the approach they recommend for treatment. While you are waiting for the results it seems like it takes so long, but once you get into the treatment phase, everything is a blur. I would encourage you to take someone else along to the the appointment, a spouse, your mom, any trusted person. You will get a lot of information and not be able to process it all, so having another pair of ears there will help, also write down any questions you have and take along to ask doctor, and write down what they tell you also.
    I wish the best for you...I will think of you on the 2nd, I will be having an MRI that day...I too am waiting for results from a previous PET scan that did not come back good.Hang in there!

    Thinking of you
    Dear FunBead Girl,
    I have been reading the letters that you write here. I have found a lot of comfort in them. I go for another pet scan on Nov 11th. My boss is keeping my job open for me till Dec. 15 th, but I have bad lymphoma in the leg and thigh. I will start physical therapy on it next week. I went through it on the other leg two years ago. The only thing that helped it was loosing weight.

    I hope that your pet scan is better then you think. The one I had last spring showed lower back but the MRI ruled it out.
    Keep on hanging in.
  • funbeadgirl
    funbeadgirl Member Posts: 181

    Thinking of you
    Dear FunBead Girl,
    I have been reading the letters that you write here. I have found a lot of comfort in them. I go for another pet scan on Nov 11th. My boss is keeping my job open for me till Dec. 15 th, but I have bad lymphoma in the leg and thigh. I will start physical therapy on it next week. I went through it on the other leg two years ago. The only thing that helped it was loosing weight.

    I hope that your pet scan is better then you think. The one I had last spring showed lower back but the MRI ruled it out.
    Keep on hanging in.

    thank you
    Dear Bumperless,
    Thank you for your kind words. I too have found the comments of others on this board very comforting, it is a shame how many women are dealing with vulvar issues. What I find sad is that 98% of women I told about my cancer did not even know where vulvar cancer was located. The tech that did my mammogram last week thought it was in the throat and she's in the medical field! Honestly women really need to be educated about their bodies.
    I go for my MRI today and will get results on Thursday, so I will post again then. I am trying to keep a positive attitude because really being upset will not change the outcome anyway and I need to be strong if I have to face cancer again.
    I too had lymph edema over summer, not very serious and it was caught early, so now I just have to keep eye on it. I had a problem in 1 ankle and tops of both thighs, where I had radiation.The treatment was able to take care of it and I learned how to do my own massage.
    I will think of you on the 11th, please post again so I know you are o.k.
    Hang in there sister!
  • bubbles44403
    bubbles44403 Member Posts: 7

    thank you
    Dear Bumperless,
    Thank you for your kind words. I too have found the comments of others on this board very comforting, it is a shame how many women are dealing with vulvar issues. What I find sad is that 98% of women I told about my cancer did not even know where vulvar cancer was located. The tech that did my mammogram last week thought it was in the throat and she's in the medical field! Honestly women really need to be educated about their bodies.
    I go for my MRI today and will get results on Thursday, so I will post again then. I am trying to keep a positive attitude because really being upset will not change the outcome anyway and I need to be strong if I have to face cancer again.
    I too had lymph edema over summer, not very serious and it was caught early, so now I just have to keep eye on it. I had a problem in 1 ankle and tops of both thighs, where I had radiation.The treatment was able to take care of it and I learned how to do my own massage.
    I will think of you on the 11th, please post again so I know you are o.k.
    Hang in there sister!

    Thinking of you
    Funbeadgirl, I do hope your ok. Wondering how you are doing? As for me, i was bumped from two appointments on the last one i was already up there when they called and said he was called in for surgery.. so i went to the office and got copies of the results. The biop was fragments of squamous epithelium with acute and chronic inflamation and reactive atypia.....sounded good to me.. also had fragments of keratinous debris/ CT scans seemed great also. The final impression stated No definite abnormal soft tissue mass, lymphadenopathy, or fluid collection identified. it did show that there is a possible enlargement of the Thyroid gland and suggested further assesment with ultra sound of the neck. The doctor called me later that night and said he was baffled, he believes it was cancer he was looking at, said he is unsure of the biopsy, and thinks he just didnt have enough there, but he said the lesion needs to be removed, said it is the size of a half dollar(feels much large to myself tho) He said while they have me under they will do a freeze biopsy , depending on those results he may or maynot remove the nodes at that time. Im not happy with the time set for surgery,, its not until 4pm. and since im not local to them they will do same day pre op testing. so i have to be there at 2pm. this will happen on the 15th, next monday... im trying no to be nervous, its kinda hard tho. aside from having my two boys, ive never been in the hospital. the office said it would be at least a 2 day stay. i hope it is only for that time. I will miss my family dearly. I do hope your PET scan comes back to you with great news. Please update us on your status. my thought are with you even through my own ordeal. i agree more women need to be aware, all those ive spoken to about it have no clue about vulvar cancer.. they think cervic when i mention it. ive educated many on my facebook. ive shared it not hiding a thing. even the men on my site are now aware... they too need to be educated. its not just about compassion with this situation its about understanding. This is why i chose to share everything with them. I am not ashamed now, and will not be again... this i believe is why i failed to go sooner. and for some, waiting like i did could be alot worse. I do hope they have taken what ive shared and forwarded that information on to their loved one. I will be back with any updates on myself as soon as i am able.
  • bubbles44403
    bubbles44403 Member Posts: 7

    Thinking of you
    Dear FunBead Girl,
    I have been reading the letters that you write here. I have found a lot of comfort in them. I go for another pet scan on Nov 11th. My boss is keeping my job open for me till Dec. 15 th, but I have bad lymphoma in the leg and thigh. I will start physical therapy on it next week. I went through it on the other leg two years ago. The only thing that helped it was loosing weight.

    I hope that your pet scan is better then you think. The one I had last spring showed lower back but the MRI ruled it out.
    Keep on hanging in.

    hope your day goes smoothly
    Dear bumperless,
    will be thinking of you today. Hoping your pet comes back with comforting news.
  • funbeadgirl
    funbeadgirl Member Posts: 181

    Thinking of you
    Funbeadgirl, I do hope your ok. Wondering how you are doing? As for me, i was bumped from two appointments on the last one i was already up there when they called and said he was called in for surgery.. so i went to the office and got copies of the results. The biop was fragments of squamous epithelium with acute and chronic inflamation and reactive atypia.....sounded good to me.. also had fragments of keratinous debris/ CT scans seemed great also. The final impression stated No definite abnormal soft tissue mass, lymphadenopathy, or fluid collection identified. it did show that there is a possible enlargement of the Thyroid gland and suggested further assesment with ultra sound of the neck. The doctor called me later that night and said he was baffled, he believes it was cancer he was looking at, said he is unsure of the biopsy, and thinks he just didnt have enough there, but he said the lesion needs to be removed, said it is the size of a half dollar(feels much large to myself tho) He said while they have me under they will do a freeze biopsy , depending on those results he may or maynot remove the nodes at that time. Im not happy with the time set for surgery,, its not until 4pm. and since im not local to them they will do same day pre op testing. so i have to be there at 2pm. this will happen on the 15th, next monday... im trying no to be nervous, its kinda hard tho. aside from having my two boys, ive never been in the hospital. the office said it would be at least a 2 day stay. i hope it is only for that time. I will miss my family dearly. I do hope your PET scan comes back to you with great news. Please update us on your status. my thought are with you even through my own ordeal. i agree more women need to be aware, all those ive spoken to about it have no clue about vulvar cancer.. they think cervic when i mention it. ive educated many on my facebook. ive shared it not hiding a thing. even the men on my site are now aware... they too need to be educated. its not just about compassion with this situation its about understanding. This is why i chose to share everything with them. I am not ashamed now, and will not be again... this i believe is why i failed to go sooner. and for some, waiting like i did could be alot worse. I do hope they have taken what ive shared and forwarded that information on to their loved one. I will be back with any updates on myself as soon as i am able.

    Thanks for your kind thoughts
    Dear Bubbles,
    Thank you so much for thinking of me, I have meant to get here sooner, just had a crazy week. I am sorry about your thyroid situation, boy do I know about that...2 months after I finished radiation treatment for vulvar cancer, I was diagnosed with thyroid cancer, they found it by accident on my PET scan follow up from the VC. I had total thyroidectomy and then the RAI treatment, 2 weeks ago I had my 1 year follow RAI from that and it was clear, I was very happy.
    Not so great with MRI results...a spot showed up in the bone marrow of my right femur. Right now it is too small to biopsy, so they are waiting til Feb. to do another MRI to see if it changes, if it does, then they do a bone biopsy...sounds like fun. Radiation oncologist said it would be extremely rare for the VC to spread to the bone...I reminded him of how rare VC is and at my age also...so that was not that comforting. If it is cancer, and the only way to know for sure is a biopsy,it could possibly be a metastasis of the thyroid cancer since that usually goes to the bones. So for right now I am in a 'holding' pattern, I know I should be hopeful and feel like it was good news, but really once cancer is part of your vocabulary, it is hard to not worry, and now I have 3 months to think about it. In the beginning of all of this I said I would not allow cancer to define me, and generally I haven't done that, but at times I just feel out of control. I put on a really 'happy' face and positive attitude for others, they all think I am so strong and resilient...but honestly at times I just want to crawl under the covers. I would say that I feel 100% about 98% of the time but that 2% can be really tough at times. My plan now is to just go about what I want to do for next 3 months, because that is all I have control over right now, no need to fret about what might happen.
    I will be thinking of you next Monday,hang in there. Let me know how you are doing when you feel up to it.
    I admire you for your educating with your friends re: VC, too many women are afraid of the subject and in their insecure nervousness call their body parts by cutesy names...I feel that this adds to the fear and furthers widens the gap of education. My husband has talked to more men about this than I can believe, needless to say he has been a tremendous support to me, I sometimes think that he has taken all that I have gone through much harder than I have....but that's because he wants to 'fix' it and he can't.
    Have a wonderful weekend and I will think about you next week. Take care of yourself.:)
  • bubbles44403
    bubbles44403 Member Posts: 7

    Thanks for your kind thoughts
    Dear Bubbles,
    Thank you so much for thinking of me, I have meant to get here sooner, just had a crazy week. I am sorry about your thyroid situation, boy do I know about that...2 months after I finished radiation treatment for vulvar cancer, I was diagnosed with thyroid cancer, they found it by accident on my PET scan follow up from the VC. I had total thyroidectomy and then the RAI treatment, 2 weeks ago I had my 1 year follow RAI from that and it was clear, I was very happy.
    Not so great with MRI results...a spot showed up in the bone marrow of my right femur. Right now it is too small to biopsy, so they are waiting til Feb. to do another MRI to see if it changes, if it does, then they do a bone biopsy...sounds like fun. Radiation oncologist said it would be extremely rare for the VC to spread to the bone...I reminded him of how rare VC is and at my age also...so that was not that comforting. If it is cancer, and the only way to know for sure is a biopsy,it could possibly be a metastasis of the thyroid cancer since that usually goes to the bones. So for right now I am in a 'holding' pattern, I know I should be hopeful and feel like it was good news, but really once cancer is part of your vocabulary, it is hard to not worry, and now I have 3 months to think about it. In the beginning of all of this I said I would not allow cancer to define me, and generally I haven't done that, but at times I just feel out of control. I put on a really 'happy' face and positive attitude for others, they all think I am so strong and resilient...but honestly at times I just want to crawl under the covers. I would say that I feel 100% about 98% of the time but that 2% can be really tough at times. My plan now is to just go about what I want to do for next 3 months, because that is all I have control over right now, no need to fret about what might happen.
    I will be thinking of you next Monday,hang in there. Let me know how you are doing when you feel up to it.
    I admire you for your educating with your friends re: VC, too many women are afraid of the subject and in their insecure nervousness call their body parts by cutesy names...I feel that this adds to the fear and furthers widens the gap of education. My husband has talked to more men about this than I can believe, needless to say he has been a tremendous support to me, I sometimes think that he has taken all that I have gone through much harder than I have....but that's because he wants to 'fix' it and he can't.
    Have a wonderful weekend and I will think about you next week. Take care of yourself.:)

    sittin in hospital
    first i want to say i am so sorry to hear all of what you are still going through, i just couldnt imagine it. im laying at an angle right now lol so its gonna take me a lil while to type this out. Surgery went fine. he had to do a wide and deep incision, he feels he got it all. He also removed 4 nodes 3 on the right and 1 on the left. wont know about those for about a week. ive got 40 stitches and, 26 staples in total. hasnt been fun. i think i may be going home tomorrow. i miss my family tremendously. sorry this is gonna be short, but its hard to type while laying down. but once i get out and on my feet a lil more i will write more, until then please take care.
  • funbeadgirl
    funbeadgirl Member Posts: 181

    sittin in hospital
    first i want to say i am so sorry to hear all of what you are still going through, i just couldnt imagine it. im laying at an angle right now lol so its gonna take me a lil while to type this out. Surgery went fine. he had to do a wide and deep incision, he feels he got it all. He also removed 4 nodes 3 on the right and 1 on the left. wont know about those for about a week. ive got 40 stitches and, 26 staples in total. hasnt been fun. i think i may be going home tomorrow. i miss my family tremendously. sorry this is gonna be short, but its hard to type while laying down. but once i get out and on my feet a lil more i will write more, until then please take care.

    sittin on an angle!
    I can see you still have a sense of humor! That must be why you are 'bubbles'. Oddly that was my nickname in high school. Glad your surgery went good, now the waiting for results. I wonder why doc didn't do a sentinel node biopsy for you? That's where they take 1 node and test it in operating room, if it is cancer clear, they do not remove anymore. Oh well, each patient is different. I would like to offer any encouragement I can to you, if you have any questions regarding recovery, etc. let me know. Listen to your body and rest, take care of yourself, and I will look for your future posts when you are able.
  • Bumperless
    Bumperless Member Posts: 13

    hope your day goes smoothly
    Dear bumperless,
    will be thinking of you today. Hoping your pet comes back with comforting news.

    Pet scan
    Hello everyone,

    Just to let you know what is going on. The cancer has spread to the lymph nodes in my back near lumbar area, into the hip beyond where they radiated, and in the pelvis. What type of chemo they give me will depend on the surgeon's choice. The regular cancer Dr said they just do not have a lot of research on vulvar cancer and suggested that they treat it like cervical cancer. Personally since it is squamis cell I would think that they would use what they use for that type of cancer. I will see the surgeon Tues so then I will know what they will give me. The surgeon says that the chemo should put the cancer into remission. Hope so cause I have six grandchildren.
    Meanwhile hope you all have a Happy Thanksgiving. Even though we have cancer we still have a lot to be thankful for.
  • Bumperless
    Bumperless Member Posts: 13

    sittin in hospital
    first i want to say i am so sorry to hear all of what you are still going through, i just couldnt imagine it. im laying at an angle right now lol so its gonna take me a lil while to type this out. Surgery went fine. he had to do a wide and deep incision, he feels he got it all. He also removed 4 nodes 3 on the right and 1 on the left. wont know about those for about a week. ive got 40 stitches and, 26 staples in total. hasnt been fun. i think i may be going home tomorrow. i miss my family tremendously. sorry this is gonna be short, but its hard to type while laying down. but once i get out and on my feet a lil more i will write more, until then please take care.

    Sittin
    Dear Bubbles,
    Glad your surgery went well. After my surgeries ,I remember that I felt most comfortable when I laid back and that it hurt sitting up straight. Be careful not to do too much. My groin stitches split open on the first surgery that I had in 2006. You could look in and see the drain tubing. My daughter and husband had to do dressings on it packing it with saline soaked gauge. I guess I just did not take it easy enough.

    I picked the name bumperless cause without labias the urine goes everywhere.
  • Bumperless
    Bumperless Member Posts: 13

    sittin in hospital
    first i want to say i am so sorry to hear all of what you are still going through, i just couldnt imagine it. im laying at an angle right now lol so its gonna take me a lil while to type this out. Surgery went fine. he had to do a wide and deep incision, he feels he got it all. He also removed 4 nodes 3 on the right and 1 on the left. wont know about those for about a week. ive got 40 stitches and, 26 staples in total. hasnt been fun. i think i may be going home tomorrow. i miss my family tremendously. sorry this is gonna be short, but its hard to type while laying down. but once i get out and on my feet a lil more i will write more, until then please take care.

    Sittin
    Dear Bubbles,
    Glad your surgery went well. After my surgeries ,I remember that I felt most comfortable when I laid back and that it hurt sitting up straight. Be careful not to do too much. My groin stitches split open on the first surgery that I had in 2006. You could look in and see the drain tubing. My daughter and husband had to do dressings on it packing it with saline soaked gauge. I guess I just did not take it easy enough.

    I picked the name bumperless cause without labias the urine goes everywhere.
  • Bumperless
    Bumperless Member Posts: 13

    sittin in hospital
    first i want to say i am so sorry to hear all of what you are still going through, i just couldnt imagine it. im laying at an angle right now lol so its gonna take me a lil while to type this out. Surgery went fine. he had to do a wide and deep incision, he feels he got it all. He also removed 4 nodes 3 on the right and 1 on the left. wont know about those for about a week. ive got 40 stitches and, 26 staples in total. hasnt been fun. i think i may be going home tomorrow. i miss my family tremendously. sorry this is gonna be short, but its hard to type while laying down. but once i get out and on my feet a lil more i will write more, until then please take care.

    Sittin
    Dear Bubbles,
    Glad your surgery went well. After my surgeries ,I remember that I felt most comfortable when I laid back and that it hurt sitting up straight. Be careful not to do too much. My groin stitches split open on the first surgery that I had in 2006. You could look in and see the drain tubing. My daughter and husband had to do dressings on it packing it with saline soaked gauge. I guess I just did not take it easy enough.

    I picked the name bumperless cause without labias the urine goes everywhere.
  • Bumperless
    Bumperless Member Posts: 13

    sittin in hospital
    first i want to say i am so sorry to hear all of what you are still going through, i just couldnt imagine it. im laying at an angle right now lol so its gonna take me a lil while to type this out. Surgery went fine. he had to do a wide and deep incision, he feels he got it all. He also removed 4 nodes 3 on the right and 1 on the left. wont know about those for about a week. ive got 40 stitches and, 26 staples in total. hasnt been fun. i think i may be going home tomorrow. i miss my family tremendously. sorry this is gonna be short, but its hard to type while laying down. but once i get out and on my feet a lil more i will write more, until then please take care.

    Sittin
    Dear Bubbles,
    Glad your surgery went well. After my surgeries ,I remember that I felt most comfortable when I laid back and that it hurt sitting up straight. Be careful not to do too much. My groin stitches split open on the first surgery that I had in 2006. You could look in and see the drain tubing. My daughter and husband had to do dressings on it packing it with saline soaked gauge. I guess I just did not take it easy enough.

    I picked the name bumperless cause without labias the urine goes everywhere.
  • Bumperless
    Bumperless Member Posts: 13

    Thanks for your kind thoughts
    Dear Bubbles,
    Thank you so much for thinking of me, I have meant to get here sooner, just had a crazy week. I am sorry about your thyroid situation, boy do I know about that...2 months after I finished radiation treatment for vulvar cancer, I was diagnosed with thyroid cancer, they found it by accident on my PET scan follow up from the VC. I had total thyroidectomy and then the RAI treatment, 2 weeks ago I had my 1 year follow RAI from that and it was clear, I was very happy.
    Not so great with MRI results...a spot showed up in the bone marrow of my right femur. Right now it is too small to biopsy, so they are waiting til Feb. to do another MRI to see if it changes, if it does, then they do a bone biopsy...sounds like fun. Radiation oncologist said it would be extremely rare for the VC to spread to the bone...I reminded him of how rare VC is and at my age also...so that was not that comforting. If it is cancer, and the only way to know for sure is a biopsy,it could possibly be a metastasis of the thyroid cancer since that usually goes to the bones. So for right now I am in a 'holding' pattern, I know I should be hopeful and feel like it was good news, but really once cancer is part of your vocabulary, it is hard to not worry, and now I have 3 months to think about it. In the beginning of all of this I said I would not allow cancer to define me, and generally I haven't done that, but at times I just feel out of control. I put on a really 'happy' face and positive attitude for others, they all think I am so strong and resilient...but honestly at times I just want to crawl under the covers. I would say that I feel 100% about 98% of the time but that 2% can be really tough at times. My plan now is to just go about what I want to do for next 3 months, because that is all I have control over right now, no need to fret about what might happen.
    I will be thinking of you next Monday,hang in there. Let me know how you are doing when you feel up to it.
    I admire you for your educating with your friends re: VC, too many women are afraid of the subject and in their insecure nervousness call their body parts by cutesy names...I feel that this adds to the fear and furthers widens the gap of education. My husband has talked to more men about this than I can believe, needless to say he has been a tremendous support to me, I sometimes think that he has taken all that I have gone through much harder than I have....but that's because he wants to 'fix' it and he can't.
    Have a wonderful weekend and I will think about you next week. Take care of yourself.:)

    It is ok to cry
    I don't think that I cry enough either but when I am alone sometimes I find myself crying. You try to help other people your whole life and then you find yourself in a big cancer mess. Then you get this rare kind that no one knows about.
    My husband is so supporting but it is wearing him down. I don't know how to help him. He worries about everything.
  • Bumperless
    Bumperless Member Posts: 13

    Thanks for your kind thoughts
    Dear Bubbles,
    Thank you so much for thinking of me, I have meant to get here sooner, just had a crazy week. I am sorry about your thyroid situation, boy do I know about that...2 months after I finished radiation treatment for vulvar cancer, I was diagnosed with thyroid cancer, they found it by accident on my PET scan follow up from the VC. I had total thyroidectomy and then the RAI treatment, 2 weeks ago I had my 1 year follow RAI from that and it was clear, I was very happy.
    Not so great with MRI results...a spot showed up in the bone marrow of my right femur. Right now it is too small to biopsy, so they are waiting til Feb. to do another MRI to see if it changes, if it does, then they do a bone biopsy...sounds like fun. Radiation oncologist said it would be extremely rare for the VC to spread to the bone...I reminded him of how rare VC is and at my age also...so that was not that comforting. If it is cancer, and the only way to know for sure is a biopsy,it could possibly be a metastasis of the thyroid cancer since that usually goes to the bones. So for right now I am in a 'holding' pattern, I know I should be hopeful and feel like it was good news, but really once cancer is part of your vocabulary, it is hard to not worry, and now I have 3 months to think about it. In the beginning of all of this I said I would not allow cancer to define me, and generally I haven't done that, but at times I just feel out of control. I put on a really 'happy' face and positive attitude for others, they all think I am so strong and resilient...but honestly at times I just want to crawl under the covers. I would say that I feel 100% about 98% of the time but that 2% can be really tough at times. My plan now is to just go about what I want to do for next 3 months, because that is all I have control over right now, no need to fret about what might happen.
    I will be thinking of you next Monday,hang in there. Let me know how you are doing when you feel up to it.
    I admire you for your educating with your friends re: VC, too many women are afraid of the subject and in their insecure nervousness call their body parts by cutesy names...I feel that this adds to the fear and furthers widens the gap of education. My husband has talked to more men about this than I can believe, needless to say he has been a tremendous support to me, I sometimes think that he has taken all that I have gone through much harder than I have....but that's because he wants to 'fix' it and he can't.
    Have a wonderful weekend and I will think about you next week. Take care of yourself.:)

    It is ok to cry
    I don't think that I cry enough either but when I am alone sometimes I find myself crying. You try to help other people your whole life and then you find yourself in a big cancer mess. Then you get this rare kind that no one knows about.
    My husband is so supporting but it is wearing him down. I don't know how to help him. He worries about everything.
  • funbeadgirl
    funbeadgirl Member Posts: 181

    Pet scan
    Hello everyone,

    Just to let you know what is going on. The cancer has spread to the lymph nodes in my back near lumbar area, into the hip beyond where they radiated, and in the pelvis. What type of chemo they give me will depend on the surgeon's choice. The regular cancer Dr said they just do not have a lot of research on vulvar cancer and suggested that they treat it like cervical cancer. Personally since it is squamis cell I would think that they would use what they use for that type of cancer. I will see the surgeon Tues so then I will know what they will give me. The surgeon says that the chemo should put the cancer into remission. Hope so cause I have six grandchildren.
    Meanwhile hope you all have a Happy Thanksgiving. Even though we have cancer we still have a lot to be thankful for.

    cancer spread
    Hello bumperless,
    I love your sense of humor regarding your nickname...I have one bumper left:)
    I was wondering...how long from your original diagnosis of vulvar cancer and to now, with the spread to hip area? I ask because at my original surgery in Jan 2009, I had only 1 node positive for cancer, then had 5 1/2 wks radiation, and now I have a 'spot' in bone marrow or right femur, up near the hip. I thought vulvar cancer did not spread that fast or to that area...at least that is what my rad onco said. My VC was an adenocarcinoma, not squamous, so it is rarer and I am 20 years younger than most women who get it. I am confused now, and really worried that I am walking around with cancer in me and won't find out til Feb. when they do another MRI and then a biopsy...?
    Focus on the sweet faces of your grandkids, I am sure that will get you through a lot.