Question re: Vulva Biopsy

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!

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!!!!

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***

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.

 

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***

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***

 

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 you

when you go to the DR. Sometimes it is hard to remember everything.

Good Luck!

 

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.

S

Hello,

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.