vulvar cancer

Wendy Segler

BOO5 said:

Vulvar Cancer
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

Vulvar cancer
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

fightforit said:

vulvar
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.

Vulvar cancer
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

Wendy Segler

fightforit said:

vulvar
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.

Vulvar cancer
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

Wendy Segler

chicfairie said:

recent diagnosis also..
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)

Vulvar
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

Wendy Segler

bubbles44403 said:

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.

Vulvar
Hi Bubbles, how are you doing now? I read your story and really feel for you. I know how scary it all is, especially the waiting! I also had the lichen sclerosis. That was part of the beginning before I heard squamous cell carcinoma, then Vulvar cancer, and now nine years later actinic keritosis, none of which I had ever heard of before, and it is all so confusing, not to mention frustrating. Have been through all this for all these years so if I can help in any way just ask. Wishing you all the best! Wendy

Wendy Segler

Bumperless said:

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.

Vulva
Hi Bumperless, how are you doing now? Wendy

Ruby3

funbeadgirl said:

bad news
Well Ladies, as I have reread all your posts I realize what a forgotten cancer this is...no info, no support in the community..really, we need to change that.
My MRIs' have not been good, lesion increased in size and in July pain started in leg, so Aug. 30th I had open biopsy with removal of marrow lesion. Pathology reports confirm it is a metastasis of the vulvar adenocarcinoma from 2009. Not good news, it is incurable. They will try some radiation to try to give me longer periods before it pops up again somewhere else, but there is no history with this particular type of VC, doc said whatever they do is a 'shot in the dark'.I am at a loss at this point, generally a very positive attitude but after spending 2 hours on internet trying to find something I have come up empty.I am in good health right now, still recovering from bone surgery and using a walker, but I feel fine. I guess I will continue to do the best I can til I can't do it any longer. I've had 3 rare situations come my way, what's to say another 'rare' event won't happen in my favor?
Happy thoughts=happy days, fake it til it feels real.

BAD NEWS
Hi Fungeadgirl

I really am sorry to hear about your new diagnosis. We will continue to be in touch via email. I think about you a lot and send very positive thoughts your way.

Ruby3

Wendy Segler said:

Vulvar cancer
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

YOUR BLOG
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.

Ruby3

chicfairie said:

recent diagnosis also..
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)

KEEP IN TOUCH
Hi Chicfairie

Keep us informed of your progress.

funbeadgirl

mbabcock said:

Vulvar Cancer
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....

vulvar cancer
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?

Pamela3

Looking for products to help sitting comfortable

Hi all My mom has vulvar cancer and sitting is too painful for her. Does anyone know of any product that helps? She has tried some pillows and a donut shaped pillow. I'm wondering if there is any sort of supply for this type of need? I would think many types of cancer or physical disease/illness would use something to provide comfort for sitting?

Pamela3

kdomjan59 said:

Best friend fighting vulvar cancer
My best friend who is 43 years old has just finished round 5 of Chemo for her vulvar cancer. She had ignored earlier signs because of no insurance. She finally got medi-cal 2 years ago, got the diagnosis of vulvar cancer. She has had a surgery to remove internal tumors and has undergone several radiations and 5 sets of chemo. The minute the chemo stops, new tumors show up. Now she has what I can only describe as a cavernous hole that is being treated by "wound care". She was a single mom whose kids are 23 and 19. Struggled all her life and they are great kids. She is very shy and doesn't ask questions - just accepts what her doctor says. She has a very hard time accepting help from friends and family. She is constantly in pain. Her last doctor visit to receive chemo, he told her they were going to discontinue the chemo for 30 days at which time they will do another CT. She feels as if her doc is giving up on her. I am going do what i can to get a second opinion about this. She is such a good human who has sacrificed so much to take care of her kids. Is there anybody else out there who has endured this much treatment and can tell me what I can do to help her? I am desperate for any/all information. So hard to find any info on this type of cancer because it is usually diagnosed in the early stages. Is there any hope or should we just try to make her as comfortable as possible until the inevitable happens? I would greatly appreciate anything.

Kat

I see this was posted a while

I see this was posted a while back. But I said a prayer for your friend anyway. I hope she would seek a second opinion. Life is so precious. God bless her and you for being a true friend.

Pamela3

kdomjan59 said:

Best friend fighting vulvar cancer
My best friend who is 43 years old has just finished round 5 of Chemo for her vulvar cancer. She had ignored earlier signs because of no insurance. She finally got medi-cal 2 years ago, got the diagnosis of vulvar cancer. She has had a surgery to remove internal tumors and has undergone several radiations and 5 sets of chemo. The minute the chemo stops, new tumors show up. Now she has what I can only describe as a cavernous hole that is being treated by "wound care". She was a single mom whose kids are 23 and 19. Struggled all her life and they are great kids. She is very shy and doesn't ask questions - just accepts what her doctor says. She has a very hard time accepting help from friends and family. She is constantly in pain. Her last doctor visit to receive chemo, he told her they were going to discontinue the chemo for 30 days at which time they will do another CT. She feels as if her doc is giving up on her. I am going do what i can to get a second opinion about this. She is such a good human who has sacrificed so much to take care of her kids. Is there anybody else out there who has endured this much treatment and can tell me what I can do to help her? I am desperate for any/all information. So hard to find any info on this type of cancer because it is usually diagnosed in the early stages. Is there any hope or should we just try to make her as comfortable as possible until the inevitable happens? I would greatly appreciate anything.

Kat

I see this was posted a while

I see this was posted a while back. But I said a prayer for your friend anyway. I hope she would seek a second opinion. Life is so precious. God bless her and you for being a true friend.

Pamela3

funbeadgirl said:

bad news
Well Ladies, as I have reread all your posts I realize what a forgotten cancer this is...no info, no support in the community..really, we need to change that.
My MRIs' have not been good, lesion increased in size and in July pain started in leg, so Aug. 30th I had open biopsy with removal of marrow lesion. Pathology reports confirm it is a metastasis of the vulvar adenocarcinoma from 2009. Not good news, it is incurable. They will try some radiation to try to give me longer periods before it pops up again somewhere else, but there is no history with this particular type of VC, doc said whatever they do is a 'shot in the dark'.I am at a loss at this point, generally a very positive attitude but after spending 2 hours on internet trying to find something I have come up empty.I am in good health right now, still recovering from bone surgery and using a walker, but I feel fine. I guess I will continue to do the best I can til I can't do it any longer. I've had 3 rare situations come my way, what's to say another 'rare' event won't happen in my favor?
Happy thoughts=happy days, fake it til it feels real.

I see your post was a while

I see your post was a while back but here goes. Don't give up. You never know what might happen. I know a man who was given up by Mayo. They opened him up & closed him again. Said they couldnt help him and he went to chicago and same thing there. Then he has had chemo in our town and he is cancer free in his scans now. We have all been praying for him. So He has had something amazing happen. Since sister's cancer I've done some reading and It said cancer loves an acidic environment and hates alkalyne(veggies etc) so I guess that diet change helps. But I pray the best for you.

mber

please help!!

I'm new to all this forum/discussion board stuff and I'm not even sure how to start a new post so I'm just adding on to yours I hope you don't mind... I don't have insurance or know anyone who has anything near what I have so I don't have anyone to talk to or anyplace to get answers.. ANY advice or comments would be helpful!

I'm a 27 year old female who previously saw a white spot in my vaginal area. I went to my local planned parenthood because I don't have medical insurance and thought it might be some sexually transmitted related spot. They took a biopsy and it came back with the diagnosis of VIN III and with positive margins. Scared to death I made an appointment at UCSD to have more of the area removed to see if they could get all of the affected area. The nurse who did the biopsy didn't even see where the previous scar was because it was such a small area (5mm X 8mm) but proceeded to cut another piece of my skin and once analyzed was said to be negative for cancer. I was told to "follow up" in about 4 to six months. I didn't know what that meant and without insurance I just made another trip to planned parenthood where she said she didn't see anything. That was almost 2 years ago.. I check the area a couple times a week and haven't noticed any new spots but I'm wondering if I need to have another biopsy done or what I SHOULD be doing. The scars are very faint but to me it looks like the 2nd biopsy wasn't even in the same spot as the first so I'm not sure if I never had all the cancerous cells removed the first time and I'm wondering if I would have any symptoms of any sort? I had another biopsy taken on my face today for what might be skin cancer and it has brought up a lot of unanswered questions about the previous scare with VIN III. I'm super scared about both and would love any insight/advice or related stories.. Thank you! 

funbeadgirl

mber said:

please help!!

I'm new to all this forum/discussion board stuff and I'm not even sure how to start a new post so I'm just adding on to yours I hope you don't mind... I don't have insurance or know anyone who has anything near what I have so I don't have anyone to talk to or anyplace to get answers.. ANY advice or comments would be helpful!

I'm a 27 year old female who previously saw a white spot in my vaginal area. I went to my local planned parenthood because I don't have medical insurance and thought it might be some sexually transmitted related spot. They took a biopsy and it came back with the diagnosis of VIN III and with positive margins. Scared to death I made an appointment at UCSD to have more of the area removed to see if they could get all of the affected area. The nurse who did the biopsy didn't even see where the previous scar was because it was such a small area (5mm X 8mm) but proceeded to cut another piece of my skin and once analyzed was said to be negative for cancer. I was told to "follow up" in about 4 to six months. I didn't know what that meant and without insurance I just made another trip to planned parenthood where she said she didn't see anything. That was almost 2 years ago.. I check the area a couple times a week and haven't noticed any new spots but I'm wondering if I need to have another biopsy done or what I SHOULD be doing. The scars are very faint but to me it looks like the 2nd biopsy wasn't even in the same spot as the first so I'm not sure if I never had all the cancerous cells removed the first time and I'm wondering if I would have any symptoms of any sort? I had another biopsy taken on my face today for what might be skin cancer and it has brought up a lot of unanswered questions about the previous scare with VIN III. I'm super scared about both and would love any insight/advice or related stories.. Thank you! 

You are not alone

I am sorry that you are feeling so scared and uncertain as to what to do next. I am sure that not having insurance also weighs heavily on your mind because getting medical treatment is very expensive. With that being said, the reality is , if you suspect or even in the slightest feel anxious about what is going on, you really must find a way to have it checked out. Perhaps when you go back for the biopsy results you can talk to the doctor about your previous biopsies and explain your concern.

I know that all clinics and hospitals have financial consultants that can help you to find a way to get the help you need, and help you find a way to  get it paid for. Start making phone calls, explain your situation and ask for help, you will be directed to the right organization/person to help you. Maybe a free clinic in your area, ask at PP? Look in the phone book, or call your local hospital and ask for information..it's a place to start.

It is probable that there is nothing wrong, but getting a straight answer could ally your fears and anxiety. I think the area you are referring to is your vulvar area and not really the vagina, I am glad you are doing regular exams of the area, all women should be doing a monthly self exam of the vulvar area, it can develope lumps and bumps and other issues, most of which are not related to cancer, but can be treated successfully.

I have had cancer 4 times in past 4 years, believe me, I know that you only get what you need by being proactive and pursuing what you need. Maybe some of the other ladies on this forum , who also have not had insurance can give you ideas on how to get the treatment you need.

I wish you the best, you are so young and have your entire life ahead of you.

Glenniekay

BOO5 said:

Vulvar Cancer
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

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.

 

Glenniekay

kevann said:

vulvar cancer
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.

vulvar cancer

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.

 

Glenniekay

yeahright said:

bubbles i understand
I know
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.

Thank God it's not just me----oh, sorry, wish it was!

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.

funbeadgirl

Glenniekay said:

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.

 

Glenniekay, I do know the

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!