Cancer Survivors Network

thanks for posting! you sound like you have a very positive attitude, which i am sure will help you through all this. if you don't mind me asking, had you had any problems or diagnosis before the stage 3 cancer?
my doctor is doing laser, since it is so widespread. he said to expect a lot of discomfort and no work for 3 weeks. he also said it would be the start of a long relationship since there is a high rate of reoccurrence. i read that with laser they can't really get a "clear margin". i am a little worried he won't get it all or that it has gone into my vagina. i think i am getting a little nervous. the procedure is in less than a week.
i have told my close friends where it is. no one i have talked to has ever heard of this. so it is good to hear from someone that has been through something similar.
good luck with your radiation. how long does that last?

I really am trying to keep a positive attitude, but I do have my moments. I started radiation last Wednesday, and have found that the drive there is what causes me anxiety, and once I am done I feel like a weight is lifted. I guess because I am counting down the days til the last one, (I have 24 to go)but I am doing fine, no side effects yet, I think it takes about 2-3 weeks for them to start showing up. I have been using the gel they gave me 3 times a day on the exposed skin to condition it so maybe the burns won't be so bad.
I am not at all familiar with vin 111, but know that there is a site: vaco.co.uk that has a lot of info on it, please check it out. You can also e mail them and they will get back to you. Are you in U.S.? Go to American Cancer Society website also, call the toll free number and talk to them, they will send you info relating to your specific cancer,(they should have info on other vulvar issues) and can direct you to support groups. They have been a valuable aid to me.
I did not have other problems before my diagnosis, all I had was a cyst next to labia, which I frequently had during my period. However this one never went away, it got bigger, then popped open and blood and pus came out (sorry for graphic detail), but even that did not concern me that much, I figured it would just go away. Well it did not, and it never healed, it became irritated. I did not go to doctor right away since we were busy with our new house and all that goes with that, so I figured I would ask doc about it at my annual exam, which was in Nov 08. She did not know what it was, so sent me to gyn doc, who also did not know what it was, but did a biopsy, that came back clear, but he wanted me to come in following week to have rest of legion removed and put a couple stitches in, so I did, that was Dec.,16,2008. On Dec. 23 he called and told me it was cancer and wanted me and my husband to come into office that afternoon. His purpose was to explain the type of cancer it was, and assure me it would be taken care of and that I would be fine. While I was in his office, he called a very good gyn/oncologist and got me in to see him on the 26th of Dec., that doctor fit me in before his scheduled patients for the day. He was very nice, explained the cancer to me, the surgery, etc. My surgery was 20 days from my diagnosis, on Jan 12th.It was a 3 hour surgery, cancer was more invasive than he thought, but I did very well, I even went home same day, actually 2 hours after I returned to my room. I did not need much pain meds, but I did have discomfort, but was able to deal with it. Pain meds rev me up really bad. My cancer spread to only 1 lymph node, so that is why I have to have radiation, if it had not spread, the surgery would have been all I needed. My vulvar cancer is not squamous cell, which is what majority of vulvar cancers are, but rather it is an adenocarcinoma, which comes from glandular tissue.Typically my type of cancer is found in 65-70 year old women, I was 55 when diagnosed, I have since turned 56, and I have not started menopause as yet (radiation oncologist said I have bionic ovaries):)The risk factors the medical field thinks cause this cancer and other vulvar issues, are not issues that I have, and usually adenocarcinoma of the vulva is a secondary cancer, meaning that it is somewhere else before it appears on vulva. Well I beat all those statistics, so maybe I should buy a lottery ticket?
I actually feel very fortunate in my situation, it is scary, but I am healthy and doc said I should make a complete recovery. I started a new job the day of second biopsy, and when it came back as a cancer I was asked to resign, since they did not have provision for part time workers to take a leave of absence.A blessing in disguise, I don't think I could have focused on learning a new job at this time, and they did sat they would hire me back.I know recurrence is about 30% for my type of cancer, but I choose to focus on the 70% that doesn't come back, and will try my best to keep up with self exams (monthly), doc visits, healthy lifestyle etc., doing all I can to prevent it from coming back.
I will have a total of 28 radiation treatments, they are 5 days a week, last for about 5-7 minutes, and you do not feel anything. Side effects come later, but every one reacts differently.
I guess the best thing I can offer you is #1- be your own best advocate, do research on the sites I mentioned, there are others also that I can let you know about. #2-make a list of questions to take to the doctor with you, and do not be intimidated to ask them, and make sure you understand and are satisfied with the answers. #3-if you are not confident with your doctor, please get a second opinion, any good doctor would understand. Ask if you had to wait a couple of more weeks for your procedure, would it matter.(this will give you more time to be sure about what you are doing.) #4- be patient with yourself and take care of yourself.
I have also started a journal, where I write down all the notable things that were happening, I knew I could never remember them, and it is very cathartic for me.Keep me posted as to how you are doing , I will check site every day, and my thoughts are with you. Hang in there, be strong, you CAN face this and overcome it!Best wishes to you.

I just found out that I have VIN 111 and Im waiting to make my first appointment with the onco-gyne I was referred to, to discuss treatment options and such. I have been doing my research. I was wondering how you procedure turned out?

hi hope u dont mind me asking adivice.
I had vin 3 15-20 years ago and a total of 4 biopsies, all those years ago they did not no much about it but any sign and it was cut away. Also the very bad itching i had was not connected to vin and was given edless creams. Anyway i examined myself and found a white patch and a small amount of itching so i went to a new consultant and had the acid wash and he says he can see quiet clearly the abnormal cells are there. But to leave it 4 six months as he doesnt want to start cutting unless they really need to. Do your think i should be worried. Sorry to trouble you. in uk

My dear friend- sorry you are having more issues related to the VIN. I guess I would get a second opinion , especially if new consultant said you clearly have abnormal cells. I would really question why he would wait 4 months, maybe there is a good reason, but he should clearly explain it to you so that you feel confident with it.Hang in there.

My dear friend- sorry you are having more issues related to the VIN. I guess I would get a second opinion , especially if new consultant said you clearly have abnormal cells. I would really question why he would wait 4 months, maybe there is a good reason, but he should clearly explain it to you so that you feel confident with it.Hang in there.

My dear friend- sorry you are having more issues related to the VIN. I guess I would get a second opinion , especially if new consultant said you clearly have abnormal cells. I would really question why he would wait 4 months, maybe there is a good reason, but he should clearly explain it to you so that you feel confident with it.Hang in there.

This is a rare cancer only about 4000 cases in the United States, it is difficult to get a doctor knowledgeable on this condition. Youre a young woman how about Aldara cream? Its a clinical trial for this type of cancer. They use it for genital warts. It works in many side effects are rough, but if used properly you may be able to avoid more surgery. Google VIN3 and you will find links here and there regarding this condition. Don't smoke it weakens immune system. Eat well, I heard condom use helps the body clear the virus quicker then without. It is not easy to get clear margins I beleive somewhere about 67% do not get clear margins, they beleive it doesn't affect whether it returns. Im here to help if you want more info.

I DID TRY THE ALDARA CREAM WITH THE FIRST DOC WHO DID THE ACID TREATMENT, UM IT HAD NO EFFECT AT ALL,,, I USED IT FOR 6 MONTHS, AND I'M JUST UPSET CUZ SOMEONE HAS TO KNOW ABOUT THIS,,, AS A DOCTOR,, MY INSURANCE WILL COVER ME ANYWHERE, AND EVERYWHERE! SO THAT'S NOT A PROBLEM I JUST REALLY NEED TO KNOW I'M GONNA BE OK,, ALL I HAVE READ SAY'S 8 OUTTA 10 WOMEN WHO DO NOT GET TREATMENT FOR THIS VIN 3 IT TURNS TO INOPERABLE CANCER, AND THERE'S NOT MUCH U CAN DO AT THAT POINT. I AM TRYING TO GET ALL THE INFO I CAN ON THIS BEFORE SEEING MY CANCER DOC ON APRIL 6TH, TO TALK TO HIM, CUZ I AM NOT DOING ANOTHER SURGERY HE HAS TAKEN OFF ALOT OF MY (LIPS) AND STILL IT HAS SPREAD AND THEY DIDN'T GET IT ALL. SO CAN ANYONE LEND ME YOUR THOUGHTS ON HOW TO HANDLE THIS?

Where did you read 8 out of 10 turns to inoperable cancer? Many women do get operated on for invasive cancer of the vulva and believe it they do fine. Provided it is caught early. The info is far and few between because there are only about 3800 cases per year. This vin3 does spread and if caused by hpv it is usually multi-focal. It used to be thought that HPV virus could not be cleared but now they realize in some women it can be. No woman wants surgery whether they are 25 or 75. VIN3 has a tendency to return. We can only do so much with VIN, surgery was the first line of attack, they are working on a shot but its not available yet. There is only so much we can do. We are all in the same boat. I read a woman has had 27 surgeries in 9 years. I don't know if Aldara will work for me but I'll try. I will do whatever it takes to stay alive. I know surgery isn't fun but what other choice is there? Boost your immune system, vitamins, not smoking, eating right, no alcohol etc. I know you are upset and frazzled at this point and I don't blame you, I just want you to know I am willing to help with what I can. Stay strong. Stress is a big no-no too.

THANKS FOR YOUR ADVICE,, TO ANSWER YOUR QUESTION ABOUT 8 OUTTA 10,,, I READ IT ON ONE OF THE SITE'S I FOUND WHEN I GOOGLED VIN3,, THERE'S ALOT OF DIFFERENT INFO OUT THERE, IT'S FRUSTRATING, I HAVE BEEN ON FOLIC ACID SCRIPT NOW FOR ABOUT 5 YRS I TAKE IT DAILY, ALDARA CREAM DIDN'T WORK,AND I FEEL HOPELESS, BUT I KNOW I'LL MAKE IT THREW. I REALLY JUST NEED A DOC WHO ISN'T A JERK AND ACTS LIKE AN A..WHOLE. THIS GUY DOESN'T LISTEN OR EXPLAIN HE JUST SAYS THIS IS WHAT IM DOING. I DUNNO, PLUS HE IS VERY ROUGH WHEN HE DOES AN EXAM I ALWAYS LEAVE CRYING FROM THE PAIN HE CAUSED AND I'M NO BABY. BUT APPOINTMENT IN THE MORNING WITH HIM SO WILL C?

Early May of this year, I noticed a few pigmented spots just below the opening of my vagina. They did not itch nor were painful to the touch so I decided to wait until July for my annual pap test to have the gynocologist look at it. I know that on a few occasions after intercourse with my husband, I had a few tears in that area so I figured it was from scarring since I scar easily. After visiting my gynocologist, I was informed that it looks like "pigmented HPV" and that a biopsy should be done to determine exactly what it was, but it probably should be removed regardless. I had the biopsy done two weeks later. During that time, a sample of the area was cut out, and acid was placed on the rest of the pigmented area. The following days after the biopsy, the areas which acid was put on started to peel off and it looked like it was completely gone. However, within a few days it all started to come back and actually looked like it was spreading out more as well and was more raised. The growth seemed much faster than previous which scared me.

I got the results after two weeks and my gynocologist told me it was VIN3, the harshest form of VIN and pre-cancerous. I was sent to a specialist within 2 weeks, and I had the laser done this morning. The specialist informed me that the laser is 75% effective in completely getting rid of VIN3 and there is only a 25% chance of having it come back. He also informed me that it takes years for VIN3 to turn into cancer. But I prefer dealing with the problem asap.

I was given about 6-8 freezing injections around the area and the whole laser procedure lasted about 10 minutes. For precautionary measures he also removed a few moles and freckles that I had in the area as well. The specialist did mention that it is different for every case. In some cases, they will have to bring the patient to the surgery room, and have the patient go under local anesthetic if a larger area has to be removed.

I have my follow up check up in 4 months (January) with the specialist, and a follow up with my gynocologist in two weeks. I was told it would take about 4-6 weeks to fully heal and have to do a sitzbath with epson salts three times a day. At the moment, the recovery pain is tolerable. The area throbs a little but it is not terribly bad.

I hope this will help some of you going through something similar. I know you may be scared, as I was absolutely terrified and was seeking online forums for comfort. Please do not be scared. As long as you are with a specialist who has treated patients with VIN3 before, you are in safe hands.

Could you please tell me who your doctor was and what state you are in.
My doctor wants to remove the tissue and do
a chemo cream. Thank you

I actually live in Canada.

How is your doctor planning on removing the tissue? Through laser?

How much of the vulvar area is infected?

The main part that was infected for me was just under the opening of the vagina. The pigmented spots covered a little over a nickel in size. I also had three other spots, which were probably just freckles, removed for precautionary measures.

Plz let me know the outcome when you go to the specialist. I just found I have VIN 3 and I'm waiting to make my first appointment to discuss my options.

After two weeks of the lasered area healing, I noticed a darkening spot just below the main pigmented area before. Instead of waiting until January for my follow up appointment, I called the specialist who treated me to see me. I figured if I am still in the healing process, I might as well have the new darkened spot checked out, and if it happens to be another VIN 3 spot, I should have it removed before it gets bigger again.

I went in for my appointment today, and after the doctor put the vinegar solution on the area and looked at it through the "microscopic" equipment, he determined it was just a discoloration due to the healing process, since it has only been three weeks.

I am still going to keep an eye on it to make sure it does not get bigger in diametre nor does it start changing in shape, but now I am good to wait until my follow up appoint in December (I moved it up from the original January date).

Purpleluva20 - Your options are to have it removed and that is about it. In Canada, no doctor recommends any creams. Depending on the size of the affected area, you will either get the laser treatment, or you will go for actual surgery to have it removed. The latter is more rare and for a severely infected area. I hope this helps.

After two weeks of the lasered area healing, I noticed a darkening spot just below the main pigmented area before. Instead of waiting until January for my follow up appointment, I called the specialist who treated me to see me. I figured if I am still in the healing process, I might as well have the new darkened spot checked out, and if it happens to be another VIN 3 spot, I should have it removed before it gets bigger again.

I went in for my appointment today, and after the doctor put the vinegar solution on the area and looked at it through the "microscopic" equipment, he determined it was just a discoloration due to the healing process, since it has only been three weeks.

I am still going to keep an eye on it to make sure it does not get bigger in diametre nor does it start changing in shape, but now I am good to wait until my follow up appoint in December (I moved it up from the original January date).

Purpleluva20 - Your options are to have it removed and that is about it. In Canada, no doctor recommends any creams. Depending on the size of the affected area, you will either get the laser treatment, or you will go for actual surgery to have it removed. The latter is more rare and for a severely infected area. I hope this helps.

I was recently diagnosed with VIN III and had a laser procedure 11/3/11 and was wanting to hear from people who've had this and how long recovery took. I had this on a Thursday and went back to work on Monday. I'm not having a lot of pain, but it's still very uncomfortable, especially in the perineum area. I have a lot of brown stains on my panty liners, I am assuming is a little blood and discharge. I also have this thick yellowish mucus from the sites. Is this normal? The nurse told me not to worry unless I started running a fever, had red streaks from the area, or started having severe pain or odor. I guess I'm just freaking out a little and probably expecting healing too soon. :-)

The yellowish mucus is your white blood cells fighting off any infection that may result. I was fortunate that when I had the proceedure done, it was the end of summer so it wasn't hot at all, but I was able to wear a dress to keep the air flow going. I soaked in epson-salt water 3 times a day, and after every time, I use the blow-dryer on cold air to dry the area before applying Polysporin. A little blood discharge is normal b/c remember the area is very "raw" and it often moist so the healing time takes a lot longer than an open sore on your arm or elsewhere on your body. There may also be a bit of stinging after you wash b/c you often wash off the protecting layers that try to form. The polysporin helped for me a lot especially when I had to urinate.

My healing process was quite fast, but like I mentioned in my previous post, I noticed a dark spot shortly after. I went back to the doctor to have it checked out but he said it doesn't look like the vin3. I think he was probably right because it hasn't spread or grown at all since.

But like I said, everything seems normal and I hope you have a speedy recovery.

Thank you very much for replying, it makes me feel alot better. I will definitely follow your suggestions. The pain isn't bad at all now, and there is still some sting when I urinate...but I definitely feel somewhat better. I go back on the 15th of December for my check up...I really hope I'm done with all this and that everyone else here stays healthy and recovered! :-)

I am 35 and in the past 2 years I have had 3 biospies all which have shown VIN III. My most recent biopsy was Nov 3. In this most recent biopsy there was extensive VIN III found and a less than 1mm microscopic invasive carcinoma. The margins were cleared by less than 1mm. I've been really worried about what is going on. I was also very shocked that I didn't hear back from the doctor right away. He had a resident contact me and tell me not worry. And that I should just follow-up in maybe 4 - 6 months. The resident was also unable to address any of my concerns. I've done some reading and see that this is supposed to be a slow growing cancer, however, I feel like it's not that slow in my case.

I made an appointment for a second opinion, but I'm wondering what others think about the small margin. I'm also very concerned about the fact that there was invasive carcinoma found. I do understand it's microscopic but the word cancer is really scary to me! What I've also read is that VIN III will continue to come back.

I'm just very frustrated right now. My family is also very frustrated. I guess I'm just looking for support here. My father talked to my uncle and said I need to go to a Vulvar specialty clinic which kind of freaked me out some more.

I'm glad that I have found this site and see that there are other woman out there who I can share my feelings with.

I think you should have had it removed after the first biopsy showed it was VIN III. The doctor should have referred you to the specialist after that point, but certainly after the second biopsy it should have been dealt with. I'm not sure what they will do in the case of finding the Invasive Carcinoma, but this is evident that the VIN III is no longer a slow growing process. I found after my biopsy (first and only), it grew back faster and was definitely more violent than when I originally noticed some spotting. It seemed that the biopsy irritated the virus and it wanted to spread quickly. I'm not sure where you are located, but can you get referred to the specialist as soon as possible?

As for VIN III coming back, there are no guarantees that the treatment you have will be 100% effective. Some people may have to go through several laser treatments, others do manage to have it completely rid of after the first time of treatment. The main thing is that you stay strong and have a good support group around you. In your case, please do not wait for any more biopsies to be done and have it treated! You've been diagnosed, and it's about time a qualified doctor does something about it!!!!

I go back to the doctor on the 15th. I'm going to a second opinion. You mentioned that yours grew back faster and more violent then you had originally noticed. I think that is happen to me. My first 3 encounters with VIN III had been discolored skin, itching and the most recent time a growth. But right now I have what looks like a tear and the skin is really red. I'm looking forward to getting some answers on the 15th. I'm hoping that this doctor I'm going to see will do something more about it. I'm going to see a woman this time and hoping she is more understanding.

I think I'm staying pretty positive about it. My family is very good support too. I just can't help but thinking about it all the time. And I totally agree with you about no more biopsies. Especially after the last biopsy it was so painful!

When I hear more I will be sure to keep you posted!

Thanks!

I've been going through this for the past 10 years. My ob/gyn performed the laser surgery 7 times but it kept returning. I was going to his office every 6 months and it seemed like at least once a year the results were VIN III and I would be scheduled for another laser surgery. He even got me approved for chemo after my 4th laser treatment to try to prevent it from coming back. I took infuron injections 3 times a week for 3 months and stayed hopeful this would prevent me from having to have any more laser treatments. Sadly 6 months after completing the chemo I was biopsied yet again and the result was VIN III yet again.
Two years ago I was referred to an ob/gyn oncologist who performed a radical vulvectomy. After my post op appointment with the ob/gyn oncologist I was released back to my ob/gyn where I had 2 soaks that showed nothing, so we went to doing the soaks once a year, yay. This past Nov I went in knowing it was back. My ob/gyn biopsied and the result was marginal. I had to go in 2 weeks later for another biopsy. This time it came back as invasive cancer and I was sent back to the cancer treatment center.

My previous ob/gyn oncologist sadly moved to another city 2 hours from where I live so I saw a new doctor this time. When meeting him I was told he wondered if I was "crying wolf". Are you kidding me??? Like I enjoy going through this???? Really???? He ordered the path report from the lab and requested samples of the tissue collected. He scheduled me for a chest x-ray and PET/CAT scan the following week. The results showed the cancer had not spread and my surgery was scheduled. I had my 2nd surgery but 9th procedure done Dec 12, 2011. This time they also removed 2 lymph nodes which came back clear. The scariest part is it seems like this is never going to go away and stay away. To complicate things I am an insulin dependant diabetic of 24 years which lowers my immune system and why they think it keeps coming back. I have tried to share my story with as many women as possible because there is so little information about this and as we all know just the word Vulva is taboo. I've been going through this for years alone. I'm very glad I found this website so that I can use my experience to help others. I keep telling myself I'm stronger than cancer, I can beat this as many times as it makes me beat it. One thing I have learned is to trust your gut and never give up hope!

I am now about to go into my 2nd laser treatment in the beginning of Feb. I was dx in April of 2010 with stage 1B vulvar cancer had the partical vulvectomy and lymph nodes removed plus laser but I did a biospy and now a year later I have VIN III. I ask my dr is there anything else that we can do beside laser treatment and he said no and that I am lucky because a couple of years ago my only choice was surgery or I can do nothing and let it turnn into cancer again. He also told me its not a matter of if it going to come back but when. Im just hoping that I dont have to do it to many times. I explained to him. I am a 31 years old single female I cant keep letting yall cut and burn down there as my only choice. Its not like breast I can't go get a new one.

Glad to hear you're making a good recovery.

Some parts take a lot longer to heal, depending on the location of where the VIN III and laser was done.

Please post after your follow up appointment to let the forum know who you have recovered!

I was recently diagnosed with VIN 111. I had gone to my PCP with a small growth directly beneath my vaginal opening. She wasn't worried about it, but didn't know what it was and sent me to my gynecologist for removal. On Monday it was biopsied, and today the results came back.

My gynecologist then did a colposcopy, where she said that the lesion is actually bigger than can be seen with the naked eye, and that there is probably an area of VIN 1 and 2 around it. She also found smaller areas of what is likely VIN 1 and 2 extending up my vulva. I have a gyn/oncology appointment on Wednesday for another colposcopy with surgery and laser therapy thereafter.

I am scared to death. My gyno says there's a possibility that the large lesion has already progressed to cancer since it is bigger than can be seen with the eye. I am 35, a healthy non-smoker, and have been married for six years. I truly don't know what to do--she said to expect to be out of work for two to four weeks. I am the sole provider for my husband and myself. Does anyone know what the likelihood is that this has already become cancer? And that it has spread to my lymph nodes? The lesion is small, and hasn't appeared to grow in months. I thought at first it was just a tear based on the location. I had no idea it was something to worry about, but I am feeling tonight like I should be writing my will.

Dear friend,
I am sorry that you are going through this, and I hope for you that your further testing will not show it to be cancer. I did not have VIN, I am a vulvar cancer survivor, but do know the feelings of fear and uncertaintly that come with the process you go through to get a diagnosis. All I can say is... "Don't go past where your at right now", that is what my husband said to me the day I found out I had to have another round of radiation and then chemo.In other words just deal with what you have now and don't worry about the what ifs before you know for sure, you will waste precious emotion on something that may never materialize. I am so happy to hear that your PCP immediately referred you to you gyno,because she did not know what it was, sounds like a humble doctor. Then to have gyno refer you to a gyno/onco, that is amazing, it sounds like they are not wasting any time with helping you. I have read so many stories of women with similar issues that have been put off by docs because they think it is just an itch or a pimple. There are so many different issues that can affect the vulvar and vaginal area that are NOT CANCER, but the sooner they are checked out the better..which is what your docs have done for you.
There are many resources available also if you are out of work, talk to your employer, social worker at gyno/onco clinic, they should be made aware if you are in financial straights, it is all confidential.
Worst case scenario..if it is cancer, it is probably caught early, and with the advanced treatments today, you will do fine.A positive attitude is very important to try to maintain , I have been through a lot in past 3 years, 3 cancer diagnosis, 5 surgeries, radiation twice and currently going through chemo ( had one yesterday), and I still am functioning and happy. Yes I do have a bad day once in a while, I usually give myself 15 minutes to have a pity party, then I get on with my life. I have too much to do yet, that I am not letting cancer control me, I control what affect I allow the cancer to have on me.
The first cancer diagnosis I received, the first thing I thought was that I would not see my grandkids grow up, so your own mortality does come to mind, that is normal, but you just can't let it control your every thought. You will have many feelings: anger, sadness, despair, etc...all normal, journal them it will help.
Leo Buscgalia said...Worry never robs tomorrow of its sorrow...it only saps today of its joy", he is a motivational speaker.
It sounds like you are in very capable hands. Write down all your questions for doc, take someone with you as an extra set of eyes and ears, and talk to nurses about your fears and questions,I have found them to be a wealth of info and compassion. I wish the best to you I will be thinking of you and I pray every day for those facing the uncertain, let us know how you are doing.