vulvar cancer

bubbles44403

funbeadgirl said:

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.

still sore
Im home as of this Wonderful Thankful day. My stitches are falling out and ohh sooo sore... i went back to see him last monday for post op.... and i was so mistaken.. there were 17 staples on the left and 23 on the right... he removed half of them on Monday and i return again this coming monday. they did a freeze section in OR with the lesion. It was in fact malignant and he went deep on that one and wide.... i still have both my bumpers, he said mine was deeper then usuall. he said he took the 4 nodes because they appeared hardened, all 4 came back clear... as of this moment I am Cancer free!!!!!!!! But he did say we will become really good friends.lol im cool with that... just wanna stay on top of things myself. I had such a horrible release day from hospital i wanted to jam my fist in the residential doctors face. She not only came into the room the day before saying "oh we are going to take your drain tubes out and you can go home....hmm really day two it was only wed. .. she had no clue what she was talking about.... next day my doc comes in and says prob friday i would go home WITH Tubes... ok sounded better... so thursday rolls around and she comes back in that morning spouting the same thing... so the nurse proceeds to snip the stitches holding the drain tubes in place... just after the second snip of the left side she gets summoms out to my doctor on the phone....NOOOOO the tubes are not to come out! yeah great fun.. stupid res, doc comes in, locals me and starts stitching on my bed! ok shes done, i got a belly strap to pin the balls up so they wouldnt hang,,,, got dressed and sat on bed to eat some semi solid food lol got up to go to the bathroom and OMG both tubes just felll straight out! I was sent home regardless. just more work keeping the drainage dry and staples dry and clean also. ive got drainage comming from the staples, the incisions in the legs are healed over already. fun fun.... my stitches are falling out and oh so painfull down there... they are more towards the rectal area. not so easy to keep clean there. but im managing.. first few days home i stayed at parents,, hubby had to keep working and i needed someone to help changing the dressings during the day. I thank god daily that i have my hubby that is so very loving and caring with the cleaning and good stuff. I still have to clean the staples twice a day with peroxide. and I have silvadene cream to put on the stitches. I guess ..well no guessing .. im one lucky lady to have caught this soon and hope and pray that i remain clear for many more years. My thoughts will be with you wonderful women who fight a strong battle. I may be a VC survivor but i will always have it in me to watch for. I pray that you both have some relief your way. I will continue to keep in touch regardless. and Continue to talk to others about it no matter what.... I believe this is the reason God has spared me so i can share and educated those who are near and dear to my heart as well as others. sending hugs to you bumperless and fun! id love to keep in touch , my email is dorogy@att.net im also on FB.. krista dorogy.. feel free to send me an invite if youd like.

Ruby3

bubbles44403 said:

still sore
Im home as of this Wonderful Thankful day. My stitches are falling out and ohh sooo sore... i went back to see him last monday for post op.... and i was so mistaken.. there were 17 staples on the left and 23 on the right... he removed half of them on Monday and i return again this coming monday. they did a freeze section in OR with the lesion. It was in fact malignant and he went deep on that one and wide.... i still have both my bumpers, he said mine was deeper then usuall. he said he took the 4 nodes because they appeared hardened, all 4 came back clear... as of this moment I am Cancer free!!!!!!!! But he did say we will become really good friends.lol im cool with that... just wanna stay on top of things myself. I had such a horrible release day from hospital i wanted to jam my fist in the residential doctors face. She not only came into the room the day before saying "oh we are going to take your drain tubes out and you can go home....hmm really day two it was only wed. .. she had no clue what she was talking about.... next day my doc comes in and says prob friday i would go home WITH Tubes... ok sounded better... so thursday rolls around and she comes back in that morning spouting the same thing... so the nurse proceeds to snip the stitches holding the drain tubes in place... just after the second snip of the left side she gets summoms out to my doctor on the phone....NOOOOO the tubes are not to come out! yeah great fun.. stupid res, doc comes in, locals me and starts stitching on my bed! ok shes done, i got a belly strap to pin the balls up so they wouldnt hang,,,, got dressed and sat on bed to eat some semi solid food lol got up to go to the bathroom and OMG both tubes just felll straight out! I was sent home regardless. just more work keeping the drainage dry and staples dry and clean also. ive got drainage comming from the staples, the incisions in the legs are healed over already. fun fun.... my stitches are falling out and oh so painfull down there... they are more towards the rectal area. not so easy to keep clean there. but im managing.. first few days home i stayed at parents,, hubby had to keep working and i needed someone to help changing the dressings during the day. I thank god daily that i have my hubby that is so very loving and caring with the cleaning and good stuff. I still have to clean the staples twice a day with peroxide. and I have silvadene cream to put on the stitches. I guess ..well no guessing .. im one lucky lady to have caught this soon and hope and pray that i remain clear for many more years. My thoughts will be with you wonderful women who fight a strong battle. I may be a VC survivor but i will always have it in me to watch for. I pray that you both have some relief your way. I will continue to keep in touch regardless. and Continue to talk to others about it no matter what.... I believe this is the reason God has spared me so i can share and educated those who are near and dear to my heart as well as others. sending hugs to you bumperless and fun! id love to keep in touch , my email is dorogy@att.net im also on FB.. krista dorogy.. feel free to send me an invite if youd like.

BARTHOLIN GLAND CANCER
I had an operation on Monday 6 Dec where the Bartholin Gland on the right hand side of my groin was removed and Bartholin Gland cancer was confirmed. I have to wait until next Tuesday to go for all the appropriate tests. I was told that it had probably spread to the lymph nodes in the abdomen. I have been strong for my daughter of 23 years and my family. I suppose it also all feels so surreal. I am now concerned about spread and really want to know exactly where I stand before Christmas and New Year. As someone mentioned earlier - not knowing is the worst. The hospital's gynaecological oncology department closed yesterday and the surgeon said that, in any case, they cannot do treatment of radio and chemo therapy until my wound has healed - at least for another month. One of my stitches has also come loose and there is now a not so small hole. Blood and water seeps out all the time. I cannot sit and I cannot stand for too long. I am best lying on my left side. I find small baths of salt and betadine surgical wash (a small dash) helps to keep the wound clean. I am so glad that my daughter found this site and I will be very happy to hear from anybody. Thanks and good luck to all.

Unknown

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

This comment has been removed by the Moderator

riannarame

unknown said:

This comment has been removed by the Moderator

VULVAR MELANOMA
Hello,
I too have Vulvar Melanoma. I had a radical vulvectomy in December 2007 followed by radiation therapy. I feel very fortunate to be in great health 3 years out!
I am looking for a group who can understand what I have gone through and that I can share with. This is embarrasing but I can no longer have sex. I have had lots of issues caused by radiation including lots of rectal bleeding and pain. I feel very deformed.

Don't get me wrong and I am very happy to be here! I appreciate every day that I have. I was diagnosed at 43 years old. Vulvar cancer can be quite aggressive and add Melanoma to that and it is down right terrifying.

I had to laugh at Bumperless comment regarding the urine going everywhere as boy can I relate to that! Also when you wipe no matter how hard to try you usually get your hand wet, lol!

Oh well, I am here to support you and to get support as well. I have no one to talk to about these things and some days it is really hard.


Email is riannarame@aol.com if you would like to correspond.

Bobbie Sue

Ruby3 said:

BARTHOLIN GLAND CANCER
I had an operation on Monday 6 Dec where the Bartholin Gland on the right hand side of my groin was removed and Bartholin Gland cancer was confirmed. I have to wait until next Tuesday to go for all the appropriate tests. I was told that it had probably spread to the lymph nodes in the abdomen. I have been strong for my daughter of 23 years and my family. I suppose it also all feels so surreal. I am now concerned about spread and really want to know exactly where I stand before Christmas and New Year. As someone mentioned earlier - not knowing is the worst. The hospital's gynaecological oncology department closed yesterday and the surgeon said that, in any case, they cannot do treatment of radio and chemo therapy until my wound has healed - at least for another month. One of my stitches has also come loose and there is now a not so small hole. Blood and water seeps out all the time. I cannot sit and I cannot stand for too long. I am best lying on my left side. I find small baths of salt and betadine surgical wash (a small dash) helps to keep the wound clean. I am so glad that my daughter found this site and I will be very happy to hear from anybody. Thanks and good luck to all.

Be Good to Yourself
So sorry you are experiencing this ~ I too had Bartholin Gland Cancer on the right side with the right groin lymph nodes removed and a radical vulvectomy last year. I have had no radiation or chemo treatment. And just like you are doing,following surgery the only comfortable position I found I could handle was lying down. As I had 2 surgeries in less than 30 days, the recovery time was much longer than I thought it would be. But,I am doing fine with the major adjustments this type of surgery brings on. And I have a positive attitude. I'm here to talk to ~ just let me know. Be good to yourself. Good luck to you.

Ruby3

Bobbie Sue said:

Be Good to Yourself
So sorry you are experiencing this ~ I too had Bartholin Gland Cancer on the right side with the right groin lymph nodes removed and a radical vulvectomy last year. I have had no radiation or chemo treatment. And just like you are doing,following surgery the only comfortable position I found I could handle was lying down. As I had 2 surgeries in less than 30 days, the recovery time was much longer than I thought it would be. But,I am doing fine with the major adjustments this type of surgery brings on. And I have a positive attitude. I'm here to talk to ~ just let me know. Be good to yourself. Good luck to you.

I really need to talk to someone
Hi Bobby Sue, I think it best to have had the surgeries within 30 days. My problem is that I am to have biopsies done next Wednesday - I don't know where they intend to take it from - and then I have an op booked for 21 Feb to have the left bartholin gland removed and lymph nodes on both sides. I cannot understand why they cannot do the surgery a week after next so that I have pain once and not twice - if you know what I mean. The tests on my organs and blood work came out clear except for a benign cyst on my liver which is strange. However I am now experiencing a lot of pain on the right "vulva/lip" (I don't know what to call it) and even when I sit it is painful (not the wound where the gland was removed in December)so I am thinking the cancer must be there and I am just dreading a vulvectomy which is what the doctor told me in December would probably be done.I am so embarrased about having cancer there and having all these doctors looking there. I am generally a shy person so this is dreadful for me. The gynaecological oncology department at the government hospital in Cape Town, South Africa is a team of specialised doctors and I am told that they are World Class doctors. However, they and my GP have all said that this cancer is very rare. There is not much info available and I just wish I knew more.

My email address is mg.ruby3@gmail.com and I would love to hear more

Ruby3

BOO5 said:

Vulvar Cancer
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.

SUPPORT WEBSITE
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

BOO5 said:

Vulvar Cancer
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.

SUPPORT WEBSITE
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

BOO5 said:

Vulvar Cancer
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.

SUPPORT WEBSITE
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

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.

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

I will check out this website now.

Thanks

Ruby3

mh1229 said:

Different story..
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.

BEAT CANCER
Dear mh

I was diagnosed on 6 December 2010. I too have to beat cancer. Today I am a bit downhearted because of the waiting which is excrutiating. My daughter found this site for me and I am so thrilled to be able to talk to all of you special people who understand what I am going through. Please keep in touch with us all about exactly what has been infected with cancer. So far I only know my bartholin gland on right side. Hoping to find out more soon. That was removed on 6 Dec.

Ruby3

Ruby3 said:

BEAT CANCER
Dear mh

I was diagnosed on 6 December 2010. I too have to beat cancer. Today I am a bit downhearted because of the waiting which is excrutiating. My daughter found this site for me and I am so thrilled to be able to talk to all of you special people who understand what I am going through. Please keep in touch with us all about exactly what has been infected with cancer. So far I only know my bartholin gland on right side. Hoping to find out more soon. That was removed on 6 Dec.

FACE BOOK
As a matter of interest, are any of you ladies on face book. There is an inbox for private messages.

Please let me know. My email address is: mg.ruby3@gmail.com

I don't want to write about cancer on facebook as it is meant to be a happy site but it will be easier to send messages to the private in box. What do you think??

Ruby3

unknown said:

This comment has been removed by the Moderator

NO HELP BECAUSE NO INSURANCE
Hi Gracie, I know exactly what you mean. No medical insurance means general hospital. I thought America's hospitals were better than South African. My problem is the waiting. my visit's to the hospital are a month apart and by the time they would want to do radio/chemo it will be 4 months since my initial diagnosis. I still have symptoms of the cancer that I had before the op so I really need them to act faster. This cancer grew very quickly and I am concerned that time is awasting.

All the best

Scarlett50

riannarame said:

VULVAR MELANOMA
Hello,
I too have Vulvar Melanoma. I had a radical vulvectomy in December 2007 followed by radiation therapy. I feel very fortunate to be in great health 3 years out!
I am looking for a group who can understand what I have gone through and that I can share with. This is embarrasing but I can no longer have sex. I have had lots of issues caused by radiation including lots of rectal bleeding and pain. I feel very deformed.

Don't get me wrong and I am very happy to be here! I appreciate every day that I have. I was diagnosed at 43 years old. Vulvar cancer can be quite aggressive and add Melanoma to that and it is down right terrifying.

I had to laugh at Bumperless comment regarding the urine going everywhere as boy can I relate to that! Also when you wipe no matter how hard to try you usually get your hand wet, lol!

Oh well, I am here to support you and to get support as well. I have no one to talk to about these things and some days it is really hard.


Email is riannarame@aol.com if you would like to correspond.

Vulvectomy
Early Nove.I went to the dermatologist to have him look at a skin growth (black in color) on my libia minora that he had looked at over 6 yrs ago and said it was nothing. Now it is grown 4X size and still growing. Sure it was melanoma, he biopsied it immediately. Ouch. Right in the office. very painful! One day before Thanksgiving, stitches out and good news. Not melanoma, but he felt I should get it removed anyway. My surgery is scheduled for Friday, a Right side vulvectomy and I am a little afraid, especially after reading so much about the after-effects. Any advice? I am not sure how to use this forum yet, my heart goes out to all. I am so thankful that my possible melanoma turned out to be benign. But my dermotologist said it has very good chance of turning to melanoma.

Scarlett50

riannarame said:

VULVAR MELANOMA
Hello,
I too have Vulvar Melanoma. I had a radical vulvectomy in December 2007 followed by radiation therapy. I feel very fortunate to be in great health 3 years out!
I am looking for a group who can understand what I have gone through and that I can share with. This is embarrasing but I can no longer have sex. I have had lots of issues caused by radiation including lots of rectal bleeding and pain. I feel very deformed.

Don't get me wrong and I am very happy to be here! I appreciate every day that I have. I was diagnosed at 43 years old. Vulvar cancer can be quite aggressive and add Melanoma to that and it is down right terrifying.

I had to laugh at Bumperless comment regarding the urine going everywhere as boy can I relate to that! Also when you wipe no matter how hard to try you usually get your hand wet, lol!

Oh well, I am here to support you and to get support as well. I have no one to talk to about these things and some days it is really hard.


Email is riannarame@aol.com if you would like to correspond.

Vulvectomy
Early Nove.I went to the dermatologist to have him look at a skin growth (black in color) on my labia minora that he had looked at over 6 yrs ago and said it was nothing. Now it is grown 4X size and still growing. Sure it was melanoma, he biopsied it immediately. Ouch. Right in the office. very painful! One day before Thanksgiving, stitches out and good news. Not melanoma, but he felt I should get it removed anyway. My surgery is scheduled for Friday, a Right side vulvectomy and I am a little afraid, especially after reading so much about the after-effects. Any advice? I am not sure how to use this forum yet, my heart goes out to all. I am so thankful that my possible melanoma turned out to be benign. But my dermotologist said it has very good chance of turning to melanoma.

Ruby3

Scarlett50 said:

Vulvectomy
Early Nove.I went to the dermatologist to have him look at a skin growth (black in color) on my labia minora that he had looked at over 6 yrs ago and said it was nothing. Now it is grown 4X size and still growing. Sure it was melanoma, he biopsied it immediately. Ouch. Right in the office. very painful! One day before Thanksgiving, stitches out and good news. Not melanoma, but he felt I should get it removed anyway. My surgery is scheduled for Friday, a Right side vulvectomy and I am a little afraid, especially after reading so much about the after-effects. Any advice? I am not sure how to use this forum yet, my heart goes out to all. I am so thankful that my possible melanoma turned out to be benign. But my dermotologist said it has very good chance of turning to melanoma.

Vulvectomy
Hi Scarlett, I do not have enough experience in this regard. My doctor did mention when I saw him last that I may have to have a vulvectomy. The right bartholin gland was removed plus more. I will only allow a vulvectomy if there is cancer there otherwise I think it is a very radical move. Personally I would prefer radio therapy to stop the cancer before it spreads to that area. In your case you don't have cancer so I suggest that you discuss it thoroughly with your doctor before having the op. Perhaps you can still have radio therapy to prevent cancer. In my case they want to remove the lymph nodes and bartholin gland on the other side as preventative surgery but I will discuss it further with them tomorrow.
All the best with your decision. Keep us informed.

Ruby3

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....

What news?
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

chicfairie

mbabcock said:

Vulvar Cancer
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.

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)

funbeadgirl

funbeadgirl said:

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.

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.

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