CancerCompass message board discussion started by WCD1000 on 9/11/2007 http://www.cancercompass.com/message-board/message/all,16077,0.htm Mon, 06 Oct 2008 00:00:00 GMT Mon, 06 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/  just went in for my yearly pap today and had my doctor look at a dark pigmented spot on my upper left side of my labia. This mark has been there for a couple of years and there are a few round frekled brown spots also. Not sure how long they have been there for though. It was only recently that I got paranoid because I would have this persistent itch that I started looking up these symptoms on the internet. I thought maybe the itch was a result of me shaving everyday. So, I decided to get a Brazilian Wax and now the itch is gone and I was able to closely examine my vulva area. My doctor said the dark pigmented area does not look like Vulva Melanoma. But he can do a biopsy so that I can feel better. So, I had the biopsy done and it was nearly painless except for the numbing part. I don't feel any pain right now. What is the recovery time for such a procedure?Any one else here had this procedure? And what was your experience like? Thanks in advacne for any advice. WCD1000 Tue, 11 Sep 2007 00:00:00 GMT Could you tell me how your md numbed the area before the biopsy?  I've had the surgery and it did not hurt as much as the two biopsys which were done without any numbing.  I really can't have another bio w/o some pain medicine.  Please give me some advice - thanks jamesmom Tue, 11 Sep 2007 00:00:00 GMT Hi,My doctor used Lidocaine . The only thing I felt was a pinch from the needle to number the area. I didn't feel any of the snipping of the skin.  It's been 6 hours now and I still don't feel any pain. Hopefully, it will remain that way.  WCD1000 Tue, 11 Sep 2007 00:00:00 GMT Thanks for your reply - maybe my pain was caused my inflamation of area.  I had a left vulvar invasion squamous cell carcinoma surgery 6 weeks ago. If you'd like to hear about it, let me know and I'll give you the blow by blow, otherwise thanks again, and I hope you remain strong and committed to getting the best care for you. jamesmom Thu, 13 Sep 2007 00:00:00 GMT HelloI just read your message and saw you recently had surgery for Squamous Cell Carcinoma, I had SCC of the vulva over 6 years ago, had a radical vulvectomy and am doing really well now, thankfully!!!Its very early days for you right now and I know in time you will start to feel a lot better and if you feel like talking about this I am here to listen to you.Take care and look after yourself and if I can help in any way please let me know.I hope your weekend is a nice restful oneLove Carol (UK)   Carolvaco Fri, 14 Sep 2007 00:00:00 GMT I just came back from my appt at M. D. Anderson's Cancer Clinic in Houston.  They are going to do lazer surgery to get rid of all the scar tissue from my prior surgeries, then have me come back every three to six months for testing.  The VIN was not invasive, not in my blood stream, but level III.  Is this what you had.  You had a radical vulvectomy, I had feared that would be what they would recommend.  Did you ever have lazor surgery?  Thank you, so glad you are finally well.  I am fearful of the lazor, but will do whatever I have to do to get well.S luckyme Wed, 19 Sep 2007 00:00:00 GMT Hi S, I am sorry you have to have the laser done to removed the scar tissue from previous surgeries,  I do hope this works for you and you will not need any more surgery,Its good they will be keeping an eye on you afte this to make sure the VIN does not return. I did not have VIN I had a lump which they said was cyst for a long time but when they removed it they found it was invasive cancer, and I had to have the radical done.I was never lasered at all, I just had the cyst removed and then 3 weeks later was in the hospital for surgery which was back in 2001 so I am now over 6 years cancer free and keeping very well and hope to stay this way,I do have an aftercare booklet which we as a group have all pulled together which has lots of tips in, you can also view this on my website at www.vaco.co.uk and I am sure there will be some information in there which will be useful for you.I am not too sure if I am allowed to put my link in but will give it a go, if not I will try sending my email so you can access this info,Have you got the date for surgery yet? I am  thinking about youTake care Carol   Carolvaco Mon, 24 Sep 2007 00:00:00 GMT Thank you Carol.  I will have my surgery on Nov 1, have to go there on the 31st for pre surgery testing.  I am happy that you are cancer free and I appreciate your kind words.  Not looking forward to this procedure, but we do have we have to do and life goes on.  At least mine is non-invasive, far less serious than yours was.  You seem to have done well and your attitude is wonderful.   Again Carol, thank you.  I'll report on how it goes so others will know what to expect.  Noone has told me, other than my doctors.  Real experiences are much better to learn from.Sheryl luckyme Mon, 24 Sep 2007 00:00:00 GMT Hi, I too had a biopsy for Vulvar Cancer last week and my doctor used liocain in a needle to deaden the area before...The initial inserstion of the needle hurt, I won't tell you differently, but only for the seconds it was put in and then nothing and nothing afterwards...I felt great afterwards and now, so I do hope you will continue your treatments, etc... Unfortuantlely, I received the dreaded phone call from my doctor two days later and it was positive, stage three, so I go in Oct. 2 for some more test to see how far its advanced and to where and then we will go from there for treatment...Funny thing is, I hadn't gone to my GYN in about 10 years as I didn't think I had too because I had a complete hysterectomy...Boy, was I wrong! I went in because of the bleeding, hurting with urination and thought I had a bladder infection and fallen bladder again, so any women out there, you "MUST" go to your Gyno at least once a year...I also hear Vulvar Cancer, because its so rare and been misdiognosed as a yeast infection and other things...My doctor iniatially treated me for a bladder infection...Best Wishes To You, Deb*** Memmawof9 Wed, 26 Sep 2007 00:00:00 GMT Thanks so much for your reply.  I can say, as so few can, I know how you're feeling and thinking.  BUT, I'm a great example of what a good outcome is and, honestly, I am not a "everything will turn out fine" "think positive thoughts" kind of person.  Don't get too rattled and try to keep your sense of humor.  I told one md I was looking for the after market for an only slightly used clitorios, and I enjoyed the odd look on his face.  I, too had a total hyster. in the 80's, so I sorta feel the vula cancer was just a very slow growth left over.  Anyway, pleae take your time in finding a surgeon, I went thru 4 at top comphrensive cancer centers before deciding on the one who was a fit for me.  Please take the time and borrow the money if you have to to get all the opinions you need to feel secure.  Oh, yeah, make your bedroom as cushy, comfortable and easily cleanable as possible before.  You might as well have all the comforts - TV, dvd, radio, baskets of towels and sheets.  Please let me know how your feeling. jamesmom Wed, 26 Sep 2007 00:00:00 GMT Hi, thank you so very much for your quick response...As you can imagine I'm having some difficult times dealing with this new dreaded news...I've just been to a web-site of some vulvar cancer patients and read every story, which left me really scared of the painful treatments, but also information I was looking for and what I had to look forward too...Ha! (www.vaco.co.uk) I will just have to wait until Oct. 2, to see what the path will be...I think for me right now, its just the waiting...So are you cured of Vin 111, or just have to keep it in check? How long have you had it and, what have you been through? Any information would be greatly appreciated...I will say, I am a Christian, have alot of faith in prayer...I just want this gone...:o) I have (9) grandchildren who are only from the age of 13-5 to see graduate from college...Do you think I'll have a chance of that, as I have read this is a rare cancer and only about 3,900 people have been diognosed with it and 850 deaths...I'm not afraid of death, but I'm just not ready yet...I still have three children and my (9) grandchildren that need their Mom and Memmaw around to worry about them...LOL! You take care and Best Wishes, Deb***P.S. Could you please also tell me any experiences that you have gone through with this? Good or bad? Thanks So Much! Memmawof9 Wed, 26 Sep 2007 00:00:00 GMT I'm sooo very sorry I've not read my email sooner - Tomorrow is thebig day for you, and, take a deep breathe, it's not going to hurt as much as you imagine, you're going to be in a better mood than you think you will be, and, do not, under any circumstance, mop your kitchen floor one week after the operation - you will break your stitches and be in bed for a little longer.  Take all the pain medicine you are offered - I tried to limit myself 'cause I also suffer from constipation and hemroids - but you will be given meds for that too so take the pain pillls.  I found some "granny" underwear thru Lane Byrants large women's catalog and now wear them inside out because of the seams.  You probably will want to pee sitting facing the wall - it helps with the urine being in contact with the incision.  I used large tableclothesfrom Goodwill -duly Clorixed- for a bed pad for about two weeks 'cause you aren't going to want to wear a pad, and there won't be that much bleeding, just a little now and then (when you sneeze, cough) and those gauze plastic pads were uncomfortable.  I promise to read my email sooner - please if you read this today, do fun things - go shopping, have a big dessert, buy those grandchildren small toys from dollar store so when they come to visit, you can see the smiles and they will remember.  Let me know how you are!!!! jamesmom Mon, 01 Oct 2007 00:00:00 GMT Aww, thank you so much for the information. I think it's just the waiting that is the hardest on everyone. We really just don't know what to expect, as I was so dazed when the doctor called and said the biopsy revealed, Vulvar Cancer in stage 3, and she wanted to do this other test to see how far it has advanced, I just said, " thank you" and hung the phone up...I then wondered, how she knew it was in stage 111 just from the biopsy? How could she tell this if she didn't know how far it had spread? Ya know? I should have asked her. Anyway, my oldest daughter came in from Colorado, my other daughter is coming in from Texas tonight, and my son will be there with me, so that will help. Also of course my husband of 35 years will be there...They are all taking me to the Casino tonight, so that will be fun, if just for a while... :o) I will try and get back with you as soon as I can after the procedure...Don't know if I'll be able to sit at the puter? You think? What stage are you in, and what is your prognosis? Any information will be greatly appreciated...Thank you so much, Deb*** Memmawof9 Mon, 01 Oct 2007 00:00:00 GMT Hey You, hope you won at that casino!!!  You sound like my kinda gal.  Please, again, do not take all medical advice as gospel - I've seen 5 cancer surgeons, and to say they are not on the same page would be putting it mildly.  I have/had a high stage 2, no chemo or radiation - just followup frequently.  The constant itching is still with me and it's troublesome, but I will take it compared to what some women have to face.  Good luck today - let me know how you are. jamesmom Tue, 02 Oct 2007 00:00:00 GMT  On 10/2/2007 jamesmom wrote:Hey You, hope you won at that casino!!!  You sound like my kinda gal.  Please, again, do not take all medical advice as gospel - I've seen 5 cancer surgeons, and to say they are not on the same page would be putting it mildly.  I have/had a high stage 2, no chemo or radiation - just followup frequently.  The constant itching is still with me and it's troublesome, but I will take it compared to what some women have to face.  Good luck today - let me know how you are.Hi!, I'm doing good! :o) It was a piece of cake...Found out it is all contained in a few spots down there and they are going to schedule me for surgery to take it out and nothing was said about chemo or radiation...I go to University of New Mexico Hospital and they have the best Cancer Center and GYNO in the nation...They are wayyyyy up there...I found alot of information out that I didn't learn on here...Most of it was not to believe all of what you read on the internet... ;o) I can't tell you how relieved I am! Whewwww! One thing is, there are only 3 stages of this type of Cancer, not four and if it hasn't spread, then surgery will probably be all I need, also, they said, when you hear the word, Cancer(period) is in stage 3, yes, that is very bad, but stage 3 of this vulvar cancer is absolutley not the same...We all laughed about it and what I had read and what I "thought" I was told...Yes, I do have stage three, but quite different than regular stage three cancer...Not at all as bad...WHewwww! Sure made my day! Ha! All they did was use a magnifying type thing with vinegar on the end and it makes the cancer show up if it had spread...It wasn't at all painful, the least little bit...They gave me a real web site that will tell you the truth about this, that only doctors evidently know about, which is called: UPTODATE...www.uptodate.com...My doctor said I probably wouldn't understand some of the doctor lingo they use, but I'm sending it to you anyway...Maybe you could refer this to your doctor, because some things are being done by doctors for this, which is excruciating and all uncalled for...Yup! I don't mean to tell you this isn't an important thing to get taken cared of, because it is...It can develop into something that will take your life if it spreads, but there are new things they are doing with it, that are alot more un-invasive...Anyway, thank you so very much for getting back so quickly, and no, I came home a loser from the Casino...Ha! ;o(...We had soooooo much fun though! :o) Write back when you can, and I do hope all this information will be helpful to you and anyone else that reads this, if they can...If you want to put it on the regular site, be my guest... :o)Not sure if only you and I see these replies? You take care my new friend...Deb*** Memmawof9 Wed, 03 Oct 2007 00:00:00 GMT Hi, yes I would love to hear all about it, as I am having the same surgery within the next few weeks...Any information would be greatly appreciated, Thanks Again, Deb*** Memmawof9 Thu, 04 Oct 2007 00:00:00 GMT  On 10/3/2007 Memmawof9 wrote: On 10/2/2007 jamesmom wrote:Hey You, hope you won at that casino!!!  You sound like my kinda gal.  Please, again, do not take all medical advice as gospel - I've seen 5 cancer surgeons, and to say they are not on the same page would be putting it mildly.  I have/had a high stage 2, no chemo or radiation - just followup frequently.  The constant itching is still with me and it's troublesome, but I will take it compared to what some women have to face.  Good luck today - let me know how you are.Hi!, I'm doing good! :o) It was a piece of cake...Found out it is all contained in a few spots down there and they are going to schedule me for surgery to take it out and nothing was said about chemo or radiation...I go to University of New Mexico Hospital and they have the best Cancer Center and GYNO in the nation...They are wayyyyy up there...I found alot of information out that I didn't learn on here...Most of it was not to believe all of what you read on the internet... ;o) I can't tell you how relieved I am! Whewwww! One thing is, there are only 3 stages of this type of Cancer, not four and if it hasn't spread, then surgery will probably be all I need, also, they said, when you hear the word, Cancer(period) is in stage 3, yes, that is very bad, but stage 3 of this vulvar cancer is absolutley not the same...We all laughed about it and what I had read and what I "thought" I was told...Yes, I do have stage three, but quite different than regular stage three cancer...Not at all as bad...WHewwww! Sure made my day! Ha! All they did was use a magnifying type thing with vinegar on the end and it makes the cancer show up if it had spread...It wasn't at all painful, the least little bit...They gave me a real web site that will tell you the truth about this, that only doctors evidently know about, which is called: UPTODATE...www.uptodate.com...My doctor said I probably wouldn't understand some of the doctor lingo they use, but I'm sending it to you anyway...Maybe you could refer this to your doctor, because some things are being done by doctors for this, which is excruciating and all uncalled for...Yup! I don't mean to tell you this isn't an important thing to get taken cared of, because it is...It can develop into something that will take your life if it spreads, but there are new things they are doing with it, that are alot more un-invasive...Anyway, thank you so very much for getting back so quickly, and no, I came home a loser from the Casino...Ha! ;o(...We had soooooo much fun though! :o) Write back when you can, and I do hope all this information will be helpful to you and anyone else that reads this, if they can...If you want to put it on the regular site, be my guest... :o)Not sure if only you and I see these replies? You take care my new friend...Deb***There are IV stages of vulvar cancer. Stage IV is divided into A & B.Research is very important. Make sure someone else is with youwhen you go to the DR. Sometimes it is hard to remember everything.Good Luck! Lableme Sun, 07 Oct 2007 00:00:00 GMT  On 9/19/2007 luckyme wrote:I just came back from my appt at M. D. Anderson's Cancer Clinic in Houston.  They are going to do lazer surgery to get rid of all the scar tissue from my prior surgeries, then have me come back every three to six months for testing.  The VIN was not invasive, not in my blood stream, but level III.  Is this what you had.  You had a radical vulvectomy, I had feared that would be what they would recommend.  Did you ever have lazor surgery?  Thank you, so glad you are finally well.  I am fearful of the lazor, but will do whatever I have to do to get well.SHello,I am new here.  Been reading your questions/answers since June. It has really helped to know I am not alone.   It is still hard to explain to people.  I have no HPV Virus and pap smears are normal.    I had a partial skinning vulvectomy with a skin graft on July 2nd.  The surgery was not fun. The recovery has been a long physical and emotional journey.  A lot of hurry up and wait.  The results were that it was Stages 2 & 3.  They got all of that but the margins weren't clear.  I am now waiting until November to do the Vinegar test (?) and more biopsys. He said he wanted to see if my immune system would kill off the cancer cells that were left.  I guess that is the hardest part.  Waiting to heal but yet in the back of my mind the what if's start. Now I am still pretty sore and just as I am getting used to all of this he will cut on me again.  I know from the first go around with the biopsy they aren't fun either.  But you know the one thing I have learned with all of this is that not matter how bad I think I have it someone else has it a lot worse.  If you keep that in mind that seems to help.  Thanks for listening.     tekawood Mon, 08 Oct 2007 00:00:00 GMT