CSN Login
Members Online: 3

You are here

Vulvar Cancer

TJperdue's picture
TJperdue
Posts: 13
Joined: Jul 2016

i went for my annual and Doctor saw an area of concern. He did a punch biopsy and said it was VIN and I was scheduled  a partial vulvectomy. He took more off than was planned.  Went back for my checkup about 5 days later and my pathology report showed no clear margins. Squamous cells and also an area of invasi squamous 2.8 into basement membrane   I am scheduled to see oncologist on Wednesday. Any info or advice is welcome. Thanks in advance

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2713
Joined: Mar 2013

Tjperdue, I am sorry to hear your news.  I hope you are working with a gynecologic oncologist who specializes in gyn cancers.  They have taken extra training for these women's cancers.  There are some really good women here but it can be quiet sometime.

TJperdue's picture
TJperdue
Posts: 13
Joined: Jul 2016

Yes my next appointment is with a GYN Oncologist. I'm just curious what will happen at visit. What to expect

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2713
Joined: Mar 2013

TJ, that is good to hear.  If I had to guess I would imagine they are going to tell you what kind of "plan" they have made to help you fight this.  My recommendation is if you can take someone with you who knows how to takes notes so you can put your full attention on the doctor.  This will give you a second set of ears and the notes are for you to look back at later, read, maybe form questions that you can call back to the office with.  I know this is overwhelming.  You will have a team to help you.  I remember a lot was thrown at me at the meeting and I was glad I had someone with me.  If something pops in to your head - ask it.  They will want to make sure you understand what is going to happen and that they have answered all your questions.  Another reason to have someone take notes.

I was lucky my BFF came and had started a note book with the first visit.  We noted any visit and each chemo.  That was good to know because I was able to tell them what worked and what didn't.  She was great, she sat there and wrote - she didn't look at the doctor - that was for me.  Hopefully you have someone who can make the trip with you.

TJperdue's picture
TJperdue
Posts: 13
Joined: Jul 2016

Thank You!  Yes my husband is going with me. I'm still recovering from my partial vulvectomy. 

SLW2016
Posts: 7
Joined: Jul 2016

Hi.

I hope you are doing well. I was hoping you cpuld share some of your symptoms if you had any? I'm in the process of all of this... 

TJperdue's picture
TJperdue
Posts: 13
Joined: Jul 2016

In 2015 at my GYN appointment I had some places my GYN froze off. No biopsy. They were like itchy bumps. i seemed a bit better but seemed like it was itchy and burned after sex and urinating. Mine was close to my vaginal opening. Anyway I assumed it was the same thing so I just figured I would get him to freeze more off at my next yearly visit. As soon as he looked he asked me how long it had been they way.  He did a biopsy and as soon as I got home I got a mirror to look. Mine looked like and ulcer with a sheer white coating.  Other than burning and itching I had no other symptoms. It would bleed a little after sex. 

SLW2016
Posts: 7
Joined: Jul 2016

Thank you for responding. Although the situation is not the best for both of us- it's comforting to hear from someone. 

I am so worried about my white spot/lesion. I wish she would have done a biopsy to begin with instead telling me to try this antibiotic for 7 days- then call her if it's still there. I posted on this forum a few days ago with my story.. If you can find it please read it and see if my symptoms match yours. 

I tested negative for yeast, uti and BV. Yet she put me on this antibiotic just in case that's what's causing my symptoms and white area. I will keep you posted once I know more. i just feel so alone right now. 

 

TJperdue's picture
TJperdue
Posts: 13
Joined: Jul 2016

I would just tell your doctor that you would feel better if she did a biopsy. If they refuse make an appointment with another doctor.  It's really hard to know without a biopsy. My invasive area looked like a kinda raw area like an ulcer. It's has a thin sheer like coating over it.  I really had not other symptoms other than itching and pain and burning after sex

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2713
Joined: Mar 2013

TJ, please let us know how your appointment goes tomorrow.  Good luck

TJperdue's picture
TJperdue
Posts: 13
Joined: Jul 2016

2nd surgery is scheduled for August 1st. Would have been sooner  but 2 oncologist will be doing the surgery and one is out for 10 days. The current plan is remove 2 Sentinel nodes and remove all external genitalia except clitoras. In the area of invasive cancer which is right at my vaginsl opening they are going as deep as they can without messing with my sphincter making me have to have colostomy. They will take tissue from my upper leg and fill that area back in. I am so thankful now they have figured taking off so much extra skin is not necessary. So I wont have to have those skin graphs. I am 90% recovered from last surgery. I feel ok other than worried about my weight loss and some intermittent shooting pains in my vaginal area. I have lost 10 pounds since 6/29. Energy level very low.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2713
Joined: Mar 2013

TJ, maybe you can ask if there is a dietician you can talk to who will help make a plan so you can keep the weight on.  It never hurts to ask.    

TJperdue's picture
TJperdue
Posts: 13
Joined: Jul 2016

Went to see oncologist today to go,over surgery. Not news I wanted. Because my tumor is midline and its location they will have to cut through my anal sphincter and do some work on anus. They are going to reconstruct as much as possible and hopefully I will regain control.  I am so fearful of that.  Because it's midline and tumor size I automatically have to have node removed on each side. I will be in hospital for 2-3 days and will go home with a cath and possibly up to 3 drains.  One in each groin and one where they remove tumor. Said she will not know until surgery. My oncologist was not comfortable doing this alone so one of her more experience partners is doing most of the surgery. They will both be in there. I was first told everything but clitoras would be removed but now just more whacking and hacking. Ugh. I almost wanted it all gone so I don't have to go thru more surgeries. But each Doctor feels differently on what to do.  I will try and post update after surgery. It will be Aug 1st

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2713
Joined: Mar 2013

TJ, I am sorry to hear about your news.  No doubt that was hard to hear of different thoughts on how to operate on it all.  Prayers for you and look forward to hearing how you are doing with your recovery.  Hugs.

TJperdue's picture
TJperdue
Posts: 13
Joined: Jul 2016

had my second surgery Monday. There were 3 oncologist there and I guess after I was out they went about surgery a different way which was good because it was better for me. They ended doing what they called a horse shoe surgery. They were able to take out are in perineum and sew back with skin there. They did not have to take skin from my leg Which would have required longer hospital stay. They took off another area of labia and did the lymph node mapping and tooK on one on each side.  Initial test of lymph node is negative but still has to be dissected to be sure. It along with the area they removed the tumor shovel be back by Thursday.  I had a catheter for the night I was in the hospital but they took it out before discharge. I am so swollen I have to press my tummy to get urine to come out.  I got home yesterday afternoon and laid down because I had zero sleep since surgery. I woke up 2 hours later in extreme pain.  My husband applied the cream they sent home with us and I just laid there with my legs a little open and let it set. It did help thank goodness. I was surprised they use Silvadene cream (burn cream) for surgical incisions but it worked for me. i am pretty much just going from bed to bathroom. Hubby taking good care of me however I have a question. My lymph node incisions are not really bothering me they just feel weird. I walk funny and I just don't want to do anything wrong. I know with my first surgery I felt better if I reclined and o my legs far apart but it's not so good with this. It feels funny when I do. Can anyone please give me some helpful tips. Do's and dont's?   Thank you

ConnieSW's picture
ConnieSW
Posts: 1469
Joined: Jun 2012

but am so glad for you that the surgery was a bit better than anticipated.  I hope the tests come back good, your pain is controlled and healing goes well.  Do I assume they didn't have to mess with your anal sphincter?  That would be such a relief.

 

connie from the uterine board

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2713
Joined: Mar 2013

TJ it is good to hear from you but I am sorry you are experiencing the pain and discomfort.  I would suggest you just taking it easy and find out what helps you the most - it sounds like you are doing that now.  Hopefully they gave you some guidance before you left the hospital on what you can/can't do - and don't hesitate to call the office if you have concerns - that is what they are there for.  

Be kind to yourself.  You just went through some pretty big surgery.  Hugs

TJperdue's picture
TJperdue
Posts: 13
Joined: Jul 2016

The good news is they took out and checked 3 lymph nodes and they were all negative.  They also think they got all of that tumor. But we know how this works. You get rid of some and get more.  There was an area she was taking off during surgery that she seemed to not be that concerned with. She did a wide something excision. Can't think of the exact term. However the pathology on that came back showing carcinoma in situ at 12 and 6 margins so we all know what that means. More surgery. She said we would not even discuss it until I heal from this one.  I wish she would have taken my whole labia off.  It was already 1/3 gone from last surgery. I just really don't want to keep going back for surgery. Too hard on me.  I see why doctors are aggressive and take off stuff right away. Figures I would get the one who says lets just mutilate you little by little ugh.  My husband and I have talked and agreed that if she only wants to go in that same area and not remove the whole labia that we are going to look for a new oncologist.  The way I see it is that my clitoras is fine and she keeps fooling around it could spread there and I don't want to take the chance. By chopping on me also takes away my ability to have cosmetic reconstruction. As far as the questions you asked about sphincter, they did go in that area but not as deep as planned.  They started on the inside of my vagina and cut all the way to and through my anus. I won't be sitting in a chair for awhile. I'm so bruised down there it is hard to look at.  Still having to wear pads. I think I will heal faster when I can just air out.  It is still so swollen I can't tell much about it. My husband puts my cream on.  There are many questions I have when I go to appointment Tuesday because my surgery plan changed after they put me to sleep. I was too out of it and in too much pain to understand right after surgery. My oncologist went on vacation to I will be seeing her PA. I think it's mainly to check my incisions. My groin incisions seem fine.  They just feel weird.  I feel so lucky that it had to spread to my lymph nodes but at the same time I don't feel like I can celebrate yet.  I am now worried about that area there is the CIS.  Atleast will be 2 months before anything can be done and don't know who fast it can grow.  If it ends up growing and invades basement membrane then have to worry about lymph nodes again.  I will be fine after I heal but right now being in pain and having 2 surgeries in 6 weeks the last thing you want to hear is another surgery

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2713
Joined: Mar 2013

Oh TJ, I am sorry.  I hope your healing is speedy.  Please let us know if you learn anything different on Tuesday.

Laura2051
Posts: 34
Joined: Aug 2016

Dear TJ,  I am a vuvlar cancer survivor, still recovering from my surgery. You are not alone! I will pray for you. I had a radical vulvectomy and a groin dissection. My cancer spread to my lymph nodes in my groin so they got removed along with my clitoris where the cancer started. Of course they did a clean margin around it. I still have to do radiation and chemo when I heal more. I still have a catheter in due to swelling. I understand what your'e going through. The silvadene cream is an anti infective, Lidocaine is the burn cream. I have to use both. I'm so glad your husband is so supportive. My husband is supportive too! You can beat this! Just take it one day at a time. If you have to have surgery again you can do it! You sound like one strong woman! We are stronger than we think we are.

TJperdue's picture
TJperdue
Posts: 13
Joined: Jul 2016

Thank you all so much. I went for follow up today. Went well. Just have a small tear in one incision and she thinks i have a hematoma in right groin. it has been bothering me. It feels like a golf ball.  Pretty much bed rest until I go back on the 24th.  I am guessing my next surgery won't be until mid October. She just said we would not even discuss it until I am healed from this.  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2713
Joined: Mar 2013

TJ?  Laura?  How are you ladies doing?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2713
Joined: Mar 2013

TJ and Laura -  you ladies truly are remarkable.  God bless.

mbz
Posts: 3
Joined: Oct 2016

I finished radiation 6 weeks ago. I noticed afterwards that there is a bump with white stuff over it. Went to radiation doctor today, he said he is pretty sure it is swollen tissue from the radiation. I had sq cell stage 1

Has any one had this and can you get vulva cancer again this soon. I hope this website is still current, I wish I could hear from someone if they have had the same experience. 

Subscribe to Comments for "Vulvar Cancer"