CSN Login
Members Online: 5

vulvar cancer

kevann
Posts: 7
Joined: Nov 2007

help

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.

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.

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.

Bumperless
Posts: 13
Joined: Jul 2010

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

Bumperless
Posts: 13
Joined: Jul 2010

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

bubbles44403
Posts: 7
Joined: Oct 2010

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

Bumperless
Posts: 13
Joined: Jul 2010

Hello everyone,

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

funbeadgirl
Posts: 153
Joined: Jan 2009

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.

bubbles44403
Posts: 7
Joined: Oct 2010

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
Posts: 30
Joined: Dec 2010

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.

Bobbie Sue
Posts: 1
Joined: Dec 2010

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
Posts: 30
Joined: Dec 2010

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

funbeadgirl
Posts: 153
Joined: Jan 2009

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.

Ruby3
Posts: 30
Joined: Dec 2010

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.

Pamela3
Posts: 4
Joined: Dec 2012

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.

Wendy Segler
Posts: 41
Joined: Sep 2011

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

Ruby3
Posts: 30
Joined: Dec 2010

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
Posts: 30
Joined: Dec 2010

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??

kdomjan59
Posts: 1
Joined: Oct 2010

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

riannarame
Posts: 2
Joined: Dec 2010

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.

Scarlett50
Posts: 2
Joined: Jan 2011

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
Posts: 2
Joined: Jan 2011

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
Posts: 30
Joined: Dec 2010

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
Posts: 30
Joined: Dec 2010

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

Pamela3
Posts: 4
Joined: Dec 2012

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
Posts: 4
Joined: Dec 2012

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
Posts: 4
Joined: Dec 2012

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?

mber
Posts: 1
Joined: Mar 2013

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
Posts: 153
Joined: Jan 2009

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.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network