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vulvar cancer

kevann
Posts: 7
Joined: Nov 2007

help

kmygil's picture
kmygil
Posts: 829
Joined: Feb 2007

Hi Kevann,

I'm sorry you have this diagnosis. I will tell you what I know from my mother's experience with vulva cancer. She thought she had an ingrown hair, but the knot just stayed there until it ulcerated. At that point she was diagnosed with vulva cancer. She had to go through surgery. It is a tough surgery from our perspective, because they have to take so much to be sure of margins. However, it turned out that my mother's vulva cancer was a metastasis from colon cancer. The scans had not caught it because it was sort of hidden in the hepatic flexure. I urge you to have your colon checked out as well. At any rate, before the colon cancer was found the doctors did not indicate that any radiation or chemo would be required. Unfortunately, the colon cancer broke through my mother's intestinal wall and she was too debilitated to make it at that point. The point being, you can definitely survive vulva cancer, but to make sure that this is not a secondary cancer. Please keep us up to date. We are praying for you and sending positive energy your way.

Hugs,
Kirsten

groundeffect
Posts: 651
Joined: Mar 2003

Hi Kevann,

I hope you will come back and talk with us. I bowl with a woman who recently told me she had vulvar cancer. Although I haven't had an occasion to talk to her more about it yet, I must say she seems to walk, talk, and bowl like the rest of us. Things can look pretty dark at first after a diagnosis, but you've come to the right place to get help.

groundeffect

BOO5
Posts: 3
Joined: Mar 2010

Hello, I am 40 years old and found out I had vulvar cancer in April 09. I had two surgeries and chemo and radiation. My treatments stopped in Sept 09. I had a PET Scan in Jan 2010 and it said I was cancer free, however, three weeks later a growth appeared again. I had it removed in Feb 2010. It was cancer again. I found that having a great attidute helps but I am still frustrated. I just needed to talk to others who has this.

BOO5

funbeadgirl
Posts: 158
Joined: Jan 2009

Hello BOO5,
I am sorry for your cancer diagnosis, and for the recurrence so quickly, I hope it was caught very early for you. I too was diagnosed with vulvar cancer on Dec. 23, 2008, I had a partial radical vulvectomy on Jan 12, 2009. I would be glad to talk to you about this, I felt very alone, because I was never able to talk to another person with vulvar cancer. I had radiation therapy, but did not have chemo. After I finished and recovered from that, I had PET scan in June 2009 and they found nodule on thyroid, and it turned out to be cancer. Honestly I am having a harder time with everything since then. Positive attitude is very good, I had one, but have found that lately it is hitting me now...post traumatic stress. I hope to hear from you. Hang in there!

mbabcock
Posts: 2
Joined: Mar 2010

3 women. That's all I have found after searching for similiar problems. I don't know what to do. I'm so scared. I just need to relate to someone. I'm also bi-polar. I'm a mess! NOBODY talks about this! That scares me too. Please share your story with me. I feel very lonely, too. This all has happened in the last month. I'm overwhelmed. I'm thinking of just not going to the oncologist. I don't want to be deformed and have no support system to help me cope.

Susie66
Posts: 1
Joined: Mar 2010

Hi Mba sorry to hear of your diagnosis. I can understand how scared you are just the word cancer is enough to scare anyone. When I found out that I had cancer "there" I was so embaressed, scared out of my mind but also not wanting anyone to know.

I am very happily married and have been for over 20yrs and just the thought of how this could impact my relationship with my husband, not to mention how I feel about myself was enough to send me over the edge and keep me crying for days.

I did the whole search of the web looking for someone to talk to. Looking for answers of how this happened and what to expect. What I ended up finding was like you, its not really talked about like other cancers. I think most likely because us women get embaressed easily.

I still havent found myself a friend like I was hopeing to. Someone that I could just email and vent when having a rough day, compare battle storys or just talk about the weather. It would be nice to have someone that you know can relate to what your going threw.

So seeing your posting I figured I would offer you that if you so desire. My sister is bi-polar so although I am not, I can fully understand how you must be handling this.

Long story short because I do not really care to type out my life history on a public forum. I was diagnosed (july 09) with stage 2 vulvar cancer (squimish cell carnomia) and have had 3 surgerys since, developed lymphedema since and just am dealing with every day life and recovering.

Hang in there.. things maybe very scarey to you now but advances in medicine have made the treatements ALOT better then they used to be. And you will get threw this. =)

feel free to email if you care to
mikeswifesue@aol.com

Susie.

fightforit
Posts: 11
Joined: Feb 2006

susie,

I first came to this sight in 2005. I was 41 yrs. old. I had been diagnosed with vulvar cancer. In the beginning I had gone to my GYN. knowing something was wrong. I was told before exam, no way it only happens to women in their later years. After the loss of the entire right inner and outer labia through surgery, I can say they were full of -------------. I went on line and found csn.
I thought this was an outlet. Well vulvar cancer was not looked at as a cancer anyone cared to here about or thought was relevant. So I curled up felt sorry for myself for just a minute. My husband was by my side and we are very good. My problem was that 5 yrs. ago I was pushed aside, because it wasn't breast, colon,lung or any of the known cancers. I came back to this site hoping that maybe it had changed. 3900 women get vulvar cancer a year 910 die from it. Small odds for some, big ones for us.

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi fight for it, I also tried to find someone to be able to talk to about vulva cancer.I learned a lot of information about it, and most people that are not going through it think that should be enough, but it is just not the same as being able to talk with someone who has gone through it, or is going through it. This was 8 years ago, and I don't know if this site was here then or not, but I was not aware of it, didn't own a computer, and when I contacted the American Cancer Society, they told me they only had information for one person who I contacted and she was very nice, but hers was almost 30 years ago, so I kind of felt I needed to talk with someone who had it more recently. So any way, I just discovered this site today, and am so grateful to have discovered, and want to thank whoever started the site. You can read my blog so you can know my story. Bless you, please let me know how you are doing, and if I can help in any way. I hope with all my heart that you are completely cured. Wendy

Ruby3
Posts: 30
Joined: Dec 2010

Hi Wendy,

How do I find your blog? I would like to read your story. It is wonderful to hear of vulvar cancer survivors of 9 years and 30 years, etc.

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi fight for it, I also tried to find someone to be able to talk to about vulva cancer.I learned a lot of information about it, and most people that are not going through it think that should be enough, but it is just not the same as being able to talk with someone who has gone through it, or is going through it. This was 8 years ago, and I don't know if this site was here then or not, but I was not aware of it, didn't own a computer, and when I contacted the American Cancer Society, they told me they only had information for one person who I contacted and she was very nice, but hers was almost 30 years ago, so I kind of felt I needed to talk with someone who had it more recently. So any way, I just discovered this site today, and am so grateful to have discovered, and want to thank whoever started the site. You can read my blog so you can know my story. Bless you, please let me know how you are doing, and if I can help in any way. I hope with all my heart that you are completely cured. Wendy

chicfairie
Posts: 1
Joined: Mar 2011

Hi there mbabcock,
I too was recently, as of 3 weeks ago, diagnosed with vulvar cancer after a routine biopsy was done. I am bipolar as well and it can be a struggle for sure. I'm so sorry to hear that you have no support system to help you cope through this stressful and unsettling journey. I would very much like to get to know you and hopefully become support system buddies! Talking about it is important to me as it helps you to release stress and worries and even to yell sometimes is a good thing. :)
What stage are you in? That will have a lot to do with your treatment and the extent of any surgery. I am in Stage 1 and researching different options the doctor has talked about.
PLease write back and let me know how you are doing. I will always respond!
Try to rest and know that you are not alone in this. I am sure you will find many others on this site who will be quite helpful. This is my first visit here and so far am impressed.
There is always hope,

chicfairie
Sorry, I didn't see the year on the post I responded too. OOps... :0)

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi, today is my first day posting, so I hope you are still reading posts. I would like to know how you are doing now. You can read my story, and ask any questions. Wendy

Ruby3
Posts: 30
Joined: Dec 2010

Hi Chicfairie

Keep us informed of your progress.

mbabcock
Posts: 2
Joined: Mar 2010

You are ahead of me. I went in for a biopsy on a "spot" my gyn. noticed during my pap a month ago. I'm 52 and a smoker.. Next thing I know, he's whacking off half my vulva. In his office, with a local, the nurse almost fainted. He wanted it OUT to send to pathology. He did not get it all, I have appt with gyn/oncologist on Wed, 17th. I am TERRIFIED! I don't even want to find out how bad it is. There is hardly any discussion on this Anywhere. Nobody responds to my questions, which makes me even more scared. I just want to talk to someone who understands, and can just listen, make suggestions, I don't want to be deformed. I'm sorry, but I'm about ready to snap. None of my family thinks this is anything serious, so I didn't tell them that it is. I'm glad I came across your post....

funbeadgirl
Posts: 158
Joined: Jan 2009

I really can sense the stress and pain in your post...I will tell you anything you want to know and answer any question you have. I understand the feeling of having no one to relate to, this type of cancer is one no one wants to talk about, but I decided early in my cancer journey to be open and honest with any woman who would listen, because it is an area that all women need to do a self exam on every month, just like the breast exam. I remember 30 years ago, no one wanted to talk about breast cancer either, but today it is always talked about openly. While vulvar cancer is rare, the occurrence of it is climbing and we need to be informed.
Where do you live?

BOO5
Posts: 3
Joined: Mar 2010

Hello mbabcock,

I read your post. What city are you in? I have a wonderful gyn/oncologist in phoenix az. All the research I have found has said this is possible to get through it. I know I told my family right away and the support was very important. I also dealt with it by just having humor in the moment. I have named this cancer "Cootchie cancer". When I was going through chemo and radiation I told my husband I would be a beacon in the night for him. Just try to be positive and get some comedies and laugh yourself silly. I had vulvar cancer for over three years before they found out what it was. Stay tough. If you need someone to talk or write to post your email. I am going to try to set-up a website and a support group for vulvar cancer. I will let you know when it is up and running.

funbeadgirl
Posts: 158
Joined: Jan 2009

Hi Boo5,
I saw your post and I would be interested if you get a web site and support group going for vulvar cancer. They have in it the UK and it is great, US needs one too!Thanks.

kevann
Posts: 7
Joined: Nov 2007

Same type of weird cancer could you email mail me your address? In Canada and our websites point us to the U.S. cause its so rare!!?? Mine is amunro2@cogeco.ca Also would love to be a part of your website. Thanks

Ruby3
Posts: 30
Joined: Dec 2010

Hi Boo

Is your support website up and running yet. I too have vulva cancer, the whole bartholin gland had to be removed it was so large. Waiting for further info.

Ruby3
Posts: 30
Joined: Dec 2010

Hi Boo

Is your support website up and running yet. I too have vulva cancer, the whole bartholin gland had to be removed it was so large. Waiting for further info.

Ruby3
Posts: 30
Joined: Dec 2010

Hi Boo

Is your support website up and running yet. I too have vulva cancer, the whole bartholin gland had to be removed it was so large. Waiting for further info.

infra3of5
Posts: 1
Joined: Apr 2010

Hi mba
I am new to this site, and have recently been diagnosed with vulvar cancer. I am 58 yrs old and also a smoker. I was diagnosed on March 31, 2010 and my life has become a flurry of gyn/oncology visits. I have had no treatment thus far just biopsy, scans and tests. My family also believes this is nothing serious. I would love to communicate with you. I don't know how helpful I can be since I am still going through all the mazes associated with serious medical concerns. In my case, my primary care physician noted a growth which he told me was a genital wart and nothing to be concerned about. That was 12 years ago. He never commented on it changing at my annual gyn checks...now it's cancer. I am scared and angry, to say the least. My gyn/onc wants to do a wide excision and remove the inguinal lymph nodes. I don't think I am going to agree to the lymph node removal, though. I am still trying to assess if I have adequate time to get follow up opinions. I live near Chicago, IL and have access to lots of teaching hospitals for care.
Anyway thanks for listening. If you want you can email me at lynnwerley@sbcglobal.net.

Infra

Ruby3
Posts: 30
Joined: Dec 2010

Hi M,

Have you any news for us since last March? I have been thinking about you so much. I cannot imagine what you must have gone through having part of you chopped off in the doctor's office. How absolutely absurd and insensitive of him. Please let us know what has happened since.

Thinking of you
Ruby

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi boo5, how is your cancer doing now. I know exactly how it feels to want to talk to someone who knows what you may be going through. You can read my story and if I can help you in any way, I would be more than happy to. Good luck, and hope to hear from you! Wendy

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi boo5, how is your cancer doing now. I know exactly how it feels to want to talk to someone who knows what you may be going through. You can read my story and if I can help you in any way, I would be more than happy to. Good luck, and hope to hear from you! Wendy

Glenniekay's picture
Glenniekay
Posts: 3
Joined: Mar 2013

This is the reasn I came to this site----to hear of others w/ recurring vulvar cancer.  I had a radical vulvectomy w/ removal of vulva and clitoris in 2008,  Most of my care gviers were not familiar with it and a lot of my care became my own responsibility, especially after I came home (w/ a catheter & 2 JP drains that had to be emptied and measured twice a day.)  The visiting nurse was as clueless as the hospital personnel.  I had a 22 lymph nodes removed (both sides as my squamous cell carcinoma was in the middleof my vagina).  The nodes showed no cancer and the PET scan agreed so no radiaton was requred.  I was cancer free for 3 1/2 yrs.  In March of 2012 I found another growth, same place.  I was misdiagnosed by a GYN who is not an oncologist.  I demanded an biopsy & two days later received the call that once again I had squamous cell carcinoma of the vulva.  By the time I was reaferred & got to see an oncologist it had grown and I had lost about 6 wks. so that it now was very close to my urethra.  A wonderfu surgeon managed to remove it without damaging the urthera.  NOW I discovered a lump in my groin and have a swollen lymph node that has to be removed and THIS TIME she says we will do radiation because of recurrances.  I had a mammo and have ductal carcinoma in situ and am told I need radiation for that as well.  As part of the prep for my node surgery I had another PET scan which came back as an abnormality in the colon!  I have a positive attitude but it is so hard to not get defeated.  I appreciate all of the input of fellow survivors.  I DO get weary of folks who say, "that's a very treatable cancer" OR at least it's not something worse, etc."  Unless you've had someone cutting on parts of your body that are intimate and ones you didn't plan to part with, and unless you thought yourself cancer free and just when you are enjoying life it comes back, you cannot know how helpless you can feel.

 

funbeadgirl
Posts: 158
Joined: Jan 2009

Glenniekay, I do know the feelings you describe about have surgery on those intimate parts and the fear and anxiety of recurrences and having to make many decisions about care, not knowing much about your cancer, etc...I could go on and on.

I have been dealing with vulvar cancer since 2008, although my cell type is different than yours, I have an adenocarcinoma and all my docs say there is not anything published about this particular type of cancer, as it is very rare. I was 55 whe first diagnosed, so I was under what they said was the typical age range for VC. I did have a partial radical vulvectomy, with only 5 nodes removed, they used Sentinel Node Biopsy and discovered only first node had cancer cells, so I did have 33 aggressive radiation treatment to my vulvar area and lymph node areas on both sides. I was very healthy so they all expected me to be 'cured'. 6 months later with my follow up PET scan, thyroid cancer was found, unrelated to the VC, but then I had that removed and the usual nuclear medicine treatment. One year later on next PET, a 'shadow' was found in  my left femur..really? So that was watched with imaging for 9 months, and it continued to grow, although I had no pain.

Next surgery was to remove the 'shadow', which turned out to be metastatic tumor from original vulvar cancer, so part of femur was cut out, plate affixed, 28 radiation treatments to leg, then 6 cycles of carbo/taxol. Two months after finishing chemo, I had to go back in for more surgery on leg, it was hurting me a lot and giving out under me, well 2 screws had broke off and plate was loose and leg was fractured, so now I had to have a rod inserted into the femur shaft..5 1/2 hours of surgery. Six months after that, another PET scan...you guessed it, another tumor, this time in my left pubic bone! I was not and still am not healed from leg surgery. I have a non union fracture and an additional fracture in right femur, they think all the radiation and chemo probably inhibited the healing process. So now what do I do? I went to MAYO clinc for a second opinion, but the consensus was no more surgery for me, my body would not be able to handle it. So this past January I had a procedure called cryoalabtion on new tumor, it was not at all invasive, and I healed up well from it.

Just a few weeks ago I had another PET scan and yes! no new tumors and the tumor just treated was gone! I was so happy, I haven't had a clear scan in over 4 years. I still have issues with my leg but now I can focus on that. I have since quit my job and applied for and received disability. My ortho onco has me using a bone stimulator every morning on my leg, hoping for the bone marrow to put out new bone growth. In three weeks I will find out if it has been working, if it hasn't then I will have another leg surgery, they will have to do a bone graft, I do not look forward to that.

I have a new motivation to get through all of this...a new grandbaby! I don't like what my life has been in a medical sense for the past almost 5 years, but I have enjoyed getting to see the wonderful human spirit of others and their kindness and care for me, I am so grateful for all of it and it gives me a renewed sense to be strong.

I personally do not think the radiation was so terrible, it was very manageable, but I did and still do have days that I am really fatigued, I think the chemo and the 2 surgeries so close really zapped my energy, and I have kept working through all of it too. I guess I would do some research and make a list of questions for your docs. You sound like a person that is very involved in her health care, and that is good.

As far as the mindless comments of others, you are right , unless someone has dealt with cancer in their own life, they can never really know what it is like. As far as vulvar cancer being 'very treatable'...HUH! it is rare, and not enough data to be able to say that! I hated it when people told me that thyroid cancer wasn't really a cancer because it is curable...oh I could just choke them! Cancer is cancer, period.

I too have been very positive most of the time, but do experience moments of despair. The key is to not stay in that dark place too long, give yourself a little time to have that person pity party, but set a time limit to it and then move on. I have not dealt with the anxiety cancer has caused me and now it is manifesting itself as anger, so I see a counselor now to sort that out and put it in proper perspective. It is a process, and honestly once 'cancer' becomes part of your vocabulary, it is with you forever, we just have to make a choice to not let it define us or control how we react to it.

I wish you much success in your journey, be strong and remain hopeful!

 

BOO5
Posts: 3
Joined: Mar 2010

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.

nsquirrely
Posts: 50
Joined: May 2007

I was dx with vulva skin cell carcinoma stage 3 in 2007. Anyone that wants to talk can contact me @ snewland1@hotmail.com I never had anyone to talk about this with during my treatments. The people in the chat room helped me a lot though. i don't know what I would have done without them.

kevann
Posts: 7
Joined: Nov 2007

Sorry haven't been checking busy with kids 1 in college and twins grade 7 and work(little lone personal time) Interested in your website,cause every other cancer is so promoted but this one is ahhh and no explaination but better catch it quick. I'am in the healthcare profession, and textbook it says happens to females over 60yrs of age.?? Don't have HPV!! So left in awe with a 12 yr dtr. wondering wether to get her vacinataed with that new shot to prevent HPV not knowing enough info. since they don't know or promte this cancer. I have been going for screening every 6 months and 1 biospy on the verge, told don't need to come back for a year(after 3yrs screening and painful snips) when I went back they told me I had to go through my family Dr. again for a referral since 6 months elasped and by that time I needed another biopsy not much left to pluck!! It seems like every 6momths is due time and if not it would spread like wild fire. I'am frustrated living like this every 6months and no public awareness but breast cancer. It might be easier to have that then chemo. and go from there but this never leaves and no one really understands it. Sorry for venting but I really wish there was a way to get this out. Our cancer society in Canada doesn't acknowledge this only breast and uterine cancer.

Glenniekay's picture
Glenniekay
Posts: 3
Joined: Mar 2013

I SO feel your pain & frustration.  Our cancer is so rare that we don't even have our own color-----have to use the universal color!  That's not a big thing but when you speak of what you had, they clam up like it's leprosy!  When I was in the hospital recuperating I said my toes felt numb.  They called in a neurologist who pricked my toes/feet----I said I can feel it but not like I did before the surgey-----it's hard to explain the feeling but that was in 2008 and my toes go form numb to painful & if I hit furniture (as I often do) it's like all my nerve endings are in my toes!!  When i had the recurrence in 2012 I was first told by a GYN that it was a vaginal wart----happens with HPV  I have never had HPV & I pointed that out.  After checking my records he agreed & did a bippsy that ashowed a recurrence.  By then it was May!!  I had lost two months of time waiting for someone to beleve me that it was squamous cell carcinoma again.  Thank God the surgeon I was referred to removed it all & it is now almost a year later & I found a lump in my groin & it is an enlarged lymph node and has to be removed and the GYN now says I will have radiation!  My sister who is a nurse of 27 yrs. says if they had done radiation the FIRST time in 2008 I might never have had all of this happening.  It's something ONLY the GYN/oncologists seem to know or recognize----even the GYN who first examined me said she'd never seen it before and was shocked to learn it was a form of cancer.  I don't have an answer for the public awareness aspect, but if you do I would be happy to do what I can to help.  It is a dark secret and needs to be recognized as CANCER no matter what kind it is, because it causes numbness when it's removed (my whole pubic/bowel area is numb now) AND then lymphedema sets in & one or both legs swell till you have to buy special shoes, etc.  If this is any help, I began water aerobics in our community swimming pool and now I can wear sandals, flip flops, etc. & my legs are so much better!  The weight of the water working against the legs is so good for it.

 

momof2girlz
Posts: 1
Joined: Oct 2010

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.

Ruby3
Posts: 30
Joined: Dec 2010

Sorry for the 3 identical posts earlier but my internet is a bit slow.

I will check out this website now.

Thanks

mh1229
Posts: 22
Joined: May 2010

I have vulvar melanoma, my statistics are clumped into the 3900 but prognostically it is a bit grimmer and chances of being diagnosed is 1 in 1 million women. Super fun. Treatment is also different. But my coochie suffers just the same ;-)
It is very frustrating to not have anyone in the same situation. All teh studies are old and treatments are not invested in. There are no "specialists" because it encompasses two different areas... gynocolgical oncology and melanoma. I see a melanoma specialist but when I am not really comfortable with him looking around down there.. especially now.
Not too many know of the location of my melanoma. When they ask I just say "where the sun doesnt shine" and let them draw their own conclusions.
I am only 31, way too young for the average age of 60. And connecting with people is impossible. It is a lonely diagnosis. Luckily I do have a great husband and friends. I am also seeing a therapist to help me deal and live my life.
That said I just had scans that were no good. I go for another scan next week to get a better idea. It is so hard to start to move on just to be kicked down again. If it is sytemic.... my chances are slim. I have young children. I have no choice but to win.

txhamilton5
Posts: 11
Joined: Aug 2010

My mom is going through this right now too. She had a partial radical vulvectomy last September followed by 5 radiation treatments. This July she had a lymph node removed from her groin that was positive. She just finished 5 more radiation treatments. Tomorrow she begins 30 days of intense Interferon treatments. She is 68 years old, which is where this type of cancer is more common (although not really common at all). I would love to correspond with you and possibly have you and my mom connect. It is a scary fight, especially when it is so rare. She has a good support system, however the ability to correspond with someone in the same situation would be good for both of you. Please email me when you get a chance at txhamilton5@gmail.com. I will pray for you in your battle!
Stacie

bubbles44403
Posts: 7
Joined: Oct 2010

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.

yeahright
Posts: 54
Joined: May 2010

bubbles i understand

I know how you feel. I went in for a pap and had a concern and told the Dr he did a biospy right on on the spot a week later I get hit with the news. I had to wait at almost a week later to get an appointment with the spealist and that office is two hours away. I think the waiting is the hardest part b/c you dont know. Then I went to the spealist and she said well I cant answer any question until we do the surgery and it takes about two weeks to get the result from that. So for almost a month goes by and all I know is that I have this rare cancer called vulvar cancer. I was like what is that and why haven't i ever heard of that. All I can do is stay in there and pray. I know it is hard. I been in your shoes before. I used this website to help me. You can yell scream do what ever you want and there is always someone here.

Glenniekay's picture
Glenniekay
Posts: 3
Joined: Mar 2013

It's such a relief to find others with the same problems.  I went from Lichen to vulvar cancer within 6 mo.  Had a radical w/ node biopsy but no radiation & a recurrence in 2012 after almost 4 yrs. It was misdiagnosed, I insisted on a biopsy & lost precious time and they said it was squamous & slow growing but it went from a pencil head to a silver dollar in the 3 mo. it took to get into surgery with it!  If that's slow I don't want to see fast!  It IS rare & care givers don't want to deal with it----do the blow drying required, etc. so it is up to us once we know what we have and how to treat it to COMPLAIN, *****, TEACH or whatever it takes so those who get it after us can have better care.  At least that's how I feel about it.  Appreciate any feedback.  BLess you.

Bumperless
Posts: 13
Joined: Jul 2010

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.

Wendy Segler
Posts: 41
Joined: Sep 2011

Hi Bumperless, how are you doing now? Wendy

bubbles44403
Posts: 7
Joined: Oct 2010

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
Posts: 158
Joined: Jan 2009

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
Posts: 7
Joined: Oct 2010

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
Posts: 13
Joined: Jul 2010

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
Posts: 158
Joined: Jan 2009

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
Posts: 7
Joined: Oct 2010

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.

funbeadgirl
Posts: 158
Joined: Jan 2009

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
Posts: 7
Joined: Oct 2010

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
Posts: 158
Joined: Jan 2009

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
Posts: 13
Joined: Jul 2010

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.

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