Vulvar Cancer

NoTimeForCancer said:

Tjperdue, I am sorry to hear

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.

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

NoTimeForCancer said:

TJ, that is good to hear.  If

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.

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

SLW2016 said:

Symptoms?

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... 

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. 

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 said:

TJ, please let us know how

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

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.

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

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

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.