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Vulvar Cancer

Leannadk
Posts: 9
Joined: Jan 2012

I was just diagnosed last week with vulvar cancer. I see the gynecologic oncologist on January 26. I would appreciate any advice that any of you that have been through this can give. I do not yet know the stage other than it is a vulvar squamous cell carcinoma. I was told that I would need a wide excision surgery to remove the lesion by my gynocologist. This is all very scary to me. Would love to hear any advice or info on the surgery and recovery.

kohara1
Posts: 8
Joined: Jan 2012

Hi
I was diagnosed with Vulvar Cancer (stage 1b) in November. I understand how you feel.
I had never even heard of this type of cancer...
After my initial biopsy results I made an appt with my GYN/Oncologist - then I researched the cancer so I would know what questions to ask. The National Cancer Institute has good info about Vulvar Cancer - staging info, surgery & treatment option info.
I had a wide excision Nov 10th in a outpatient setting in Philly PA. The recovery was not that bad. I was given pain meds, a long ice pack that I filled with crushed ice(really good for the 1st 2 days)- My Dr told me to get antibiotic ointment (over the counter) and another ointment used to prevent pain & itching.
Sitting was difficult -laying with leg elevated worked well (elevate the leg of whatever side of labia is being removed...) or reclining in a big chair with my leg over the arm of chair helped to keep the pressure off my wound.
Dr told me to do this:I used plastic squirt bottles to stay clean(keep in each bathroom & in purse when I went back to work)Your local home health pharmacy should have these.
I filled this with water & gently flushed the wound area after each trip to the bathroom.
I patted myself dry & then applied the ointment.
After a shower I used a small hand towel to pat myself dry & then I used a hair dryer on cool to make sure I was completly dry & then more ointment.
The first week I was sore & tired -I had my sugery done on a Thursday & went back to work on the Next Tuesday - but I would suggest taking off week if you can. It took about 4 weeks to feel completly healed. The stiches disolve on their own. I had just a bit of itching as the wound healed - & the ointment helped.
I hope this info helps you.
Do you have a good local support network of friends & family? This is helpful.
Having good girlfriends that I could discuss my diagnosis and pray with has been very helpful. I have found that "vulvar" cancer is hard to chat about. When people find out that I have cancer - they want to know what kind...I tell my closest friends - but others I say I have a gynocological cancer. I hope I can work through this - because I feel woman need to be aware of this type of Cancer.

FYI:
I went back to the GYN/Oncol after 10 days for a post-op check & found out at that time that I have invasive cancer - stage 1b. It is early - but does require that
I have more surgery -scheduled on Feb 1st. (Partial vulvectomy & lymph nodes removal in my right groin)This sugery will be more extensive as they have to go deeper & wider to remove all the cancer - I may need a skin graft to close the wound area. My Dr says to expect 6-8 week reovery.If it is in my lymph nodes (my staging will change)& I will need radiation & possible chemo - if not I will need to see the GYN/Oncol every 4 months for 5 years so he can keep an eye on me - as this type of cancer likes to reappear - so additioanl surgery may be required over the years.

Thanks for reaching out through this support group. It helps having someone else who understands what I am coping with.

One thing I know for sure is that we are stronger than we know we are.
Rest well & ask for help when you need it.
Best wishes for your speedy recovery

Kohara1

Leannadk
Posts: 9
Joined: Jan 2012

thank you so much for responding...the information you shared is so helpful to me. i am sorry that you have to have another surgery.

angel_eyes
Posts: 5
Joined: Jan 2012

Thank you for the information you shared. I was diagnosed with VINiii with suspicious growth just after Christmas. I had a wide excision on Jan 24th to determine if cancer was present. I am trying to recover from surgery and have been very uncomofotable and quite concerned about infection. I will try some of your suggestions and hope they help with the healing process. Unfortunately for me we are still waiting for path reports so we know exactly what we are dealing with.

I am so happy to have found this site. This topic is so difficult to find information on and I have no friends or family living near me so my husband and I trying to take things one step at a time.
Thank you for sharing and I wish you all the best.

Car6166
Posts: 4
Joined: May 2019

Thk you so much for sharing your experience. I am waiting to be sceduled for my surgery .Dr wants to do both sides at once apparently he thi KS it is on both sides I am a 75 year old woman in fairly good health but still fighting having this surgery .I had surgery sceduled about month ago  chickened out. Went to see radiation and chemo dr. Who refered me back to surgeon so not. I am waiting to reschedule .I am pretty tuff but this surgery sounds awful. Please keep posting your experience it is so important 

Toast
Posts: 46
Joined: May 2010

Did you have your surgery?  I had vulvar surgery nine years ago.  It was scary but I'm glad I had it.  The recovery wasn't as bad as I feared and I've been very lucky to have no recurrence.  I hope you are doing well :)

Car6166
Posts: 4
Joined: May 2019

No surgery at this time. I decided to go with radiation will keep updated possible surgery later.4th week radiation.   

funbeadgirl
Posts: 181
Joined: Jan 2009

I am amazed by how many women diagnosed with vulvar issues such as VIN and cancer feel so alone. I know this is a rare situation, but seems like there are more and more cases being diagnosed. I was diagnosed with vulvar adenocarcinoma in Dec. 2008, had a partial radical vulvectomy with sentinel lymph node biopsy, turns out it was stage3, so I had 33 radiation treatments. I did quite well with healing process and tried to move on with my life. I subsequently was diagnosed with unrelated thyroid cancer 6 months later, and made it through that also. I decided right in the beginning that I would not be afraid or ashamed to tell others what type of cancer I had..kohara you are absolutely correct when you say women need to be informed about this cancer, I would tell anyone that would listen about it. Knowledge is power and women need to know what to look for.
Unfortunately my vulvar cancer metastasized to my right femur last year and I had surgery to remove it and more radiation and currently having chemotherpay.I still feel like I will survive this, and docs are treating it aggressively to give me the best results. I feel good except the first couple days after chemo and I have no reason to believe I won't continue to be okay.
I guess the message in all of this is: be aware of your own body and be pro-active in getting right treatment. Help other women to understand this also.
Kohara I sensed a your kindness coming through your experience, and I am very appreciative for you and the other ladies here sharing there own experiences.
My wish is for even this rare cancer to become recognized as much as breast cancer is. Hang in there all of you.

angel_eyes
Posts: 5
Joined: Jan 2012

I am so sorry to hear all that you have faced in your fight. I can't imagine the fight you have had with your diagnosis, and will pray that your treatment goes well.My doc keeps telling my how fortunate i am that my diagnosis is only vin 3 and not cancer. My frustration is that when I went in for post-op only 8 days after surgery my doc informed me that they found more sites of vin 3 and I would have to use some creams after my incision heals. He also told me that since it is only vin3 there would be no need for me to see a gyno/onco. I have been trying to do as much research as possible to ensure that I can ask the right questions.

Thank you for sharing your experiences. I wish you all the best.

Leannadk
Posts: 9
Joined: Jan 2012

You are such an inspiration...thank you for sharing your story. I am sending most positive thoughts your way.

Leannadk
Posts: 9
Joined: Jan 2012

You are such an inspiration...thank you for sharing your story. I am sending most positive thoughts your way.

kohara1
Posts: 8
Joined: Jan 2012

Good morning
Checking in to see how you are doing. I had my surgery feb 1st so I am 3 weeks post op today and doing well. I came home with 2 drains and last Friday I had my final drain removed. Yeah!
I had wonderful news that my lymph nodes were negative for cancer.
Oncologist was able to get a clean margin so now I will see him
every 4 months for 3 years and then 2x a year for 2 more years.
I am still sore and tired but I can see my progress each day.
I should be ready to return to work in 3 more weeks.
What's new with you?

Leannadk
Posts: 9
Joined: Jan 2012

Hi Kohara..that is great news about the negative lymph nodes! I had to have my surgery postponed twice as I came down with bronchitis and then pnuemonia. I am now scheduled for my wide local excision on Tuesday....I am nervous and a bit scared for the recovery....hoping for clear margins. Thanks for checking in:)

Leannadk
Posts: 9
Joined: Jan 2012

Hi Kohara..that is great news about the negative lymph nodes! I had to have my surgery postponed twice as I came down with bronchitis and then pnuemonia. I am now scheduled for my wide local excision on Tuesday....I am nervous and a bit scared for the recovery....hoping for clear margins. Thanks for checking in:)

kohara1
Posts: 8
Joined: Jan 2012

Hi there,
Glad your surgery is almost here. We have a lot in common. My surgery was to have been in January and I got sick just like you.
After a series of meds, inhalers and steriods I was ready for surgery.
I found the waiting time to be filled with anxiety. VERY difficult as I had myself mentally ready and then had to reschedule to Feb 1.
Please feel fee to contact me on my email if you have any questions or concerns.
Kohara127@msn.com
Have you had surgery before? They will give you something in your IV to help you to relax before they put you under.
For my 1st sugery in November ( i was in/out home the same day) My Dr gave me lots of local pain meds so I was numb for my long car ride home. I also had oral pain meds.
Both really helped.
My Feb surgery - I was on major meds when I came home from
hospital stay(2 nights) and then I made sure I continued pain meds on schedule. Pain meds are notorious for causing constipation.
Something some Drs forget to mention... My Dr made sure I had stool softener before I left the hospital. That is something I learned the hard way when I had my mastectomies 8 years ago. That is just a comfort tip... Especially after our type of surgery!
;-)
Best wishes

Leannadk
Posts: 9
Joined: Jan 2012

Yay! surgery is now behind me!! The time in pre-op seemed to last forever I was so nervous until they gave me the happy meds in the IV... now I just have the 10 day wait for the pathology reports...hoping for celar margins. The pain has not been too bad....just very, very tired the past 2 days and sitting is very uncomfortable unless sitting on the donut cushion and even then I can last only about 15 minutes before getting really sore. Was happy to finally be able to take a shower today but surprised at the discomfort just from the water running down me. I am very relieved to have the surgery over and just praying that they got it all.

kohara1
Posts: 8
Joined: Jan 2012

I hope you have had a good couple of days.
Glad all went well. The waiting for results can seem like forever.
Trying to find clothes that don't pinch the wound area has been a challenge for me.
I am hoping to be released to go back to work mid March.
Next week is 6 weeks since my surgery. Take care

Rest well.
Kohara1

funbeadgirl
Posts: 181
Joined: Jan 2009

Kohara1, I am SOOO happy that your lymph nodes were negative and the margins were clear! Such good news for you. It sounds like you are doing well in your recovery, it is an inspiration for the other ladies that will have to go through it also. We must support and cheer each other through this ordeal, because we both know what an isolating experience this can be.Visiting the doc on a regular basis is good because they keep a close eye on you for any possible future issues.

I have just 1 chemo left , it will be on March 1st! I am so ready to be done with all this and start on a consistent path to recovery. I am feeling the cumulative effects of the chemo now, but I am doing just fine and looking forward to being more active once I get my strength back. I am so inspired by the strength I see from others going through treatments, it really spurs me on to do the same.

"What lies behind us, and what lies before us are small matters compared to what lies within us" quote from Roger Crawford

kohara1
Posts: 8
Joined: Jan 2012

It will be here soon. I am glad you can see the end in sight!
Best wishes to you. I hope you have a celebration planned!
Thanks for your kind words. I am concerned about the cancer reoccurring.
But for now I am living in the moment (until my 4 month check up...)
Take care of yourself and thanks for your support.

littlesister6
Posts: 1
Joined: Feb 2018

I was recently diagnosed with Vin III, I was in complete shock.  I am scheduled for a wide local excision tomorrow.  I am petrfied of the recovery after reading about how some women have had horrific experiences.  My gyn seems nonchalant about the surgery and recovery, however, I cannot be off of work and have to wear pants.... and from what i am reading, I may not be able to do either for a while.  I have been over researching but feel the more I know, the less anxious I will be, however, that is not the case.  I just want this all behind me.

Can someone tell me what to expect after the surgery? How long the recovery is? Do things ever go back to looking and feeling normal?

Laura2051
Posts: 34
Joined: Aug 2016

I was just checking in and saw your post. I am a vulvar cancer survivor. It will be 2 years for me in June. I check in periodically to see if I can help someone else going through this. I had a much more radical surgery so I can't say how long it will take you to heal but I can give you some pointers. First of all are you seeing an oncologist?  I am not familiar with VIN , I had squamous cell carcinoima stage 4. After surgery you will probably get a squeezable water bottle to use after voiding (peeing). That is very helpful. Also after showering I still use my blow dryer on cool setting to dry myself in that area. Ice packs between your legs will help with swelling and pain. Wear granny panties and when home go commando.

 Believe me when I say that how you think will help you, The mind is so powerful and as you think your body will become. Believe you will be well and heal quickly. Think positive good thoughts, Pray. Love yourself. Your body wants to heal. Forgive yourself and others. You can get through this and come out stronger and more resiliant. Take each day as it comes and be grateful for all you have, especially loved ones in your life. Little sister, this is a bump in the road for you, not the end. You can do this! I will check in to see how you are doing.

Madchiefsmom
Posts: 3
Joined: Jul 2017

i too understand.  i was diagnosed with stage 3 vulvar cancer with lymphnod involvement 8 months ago. i am not going to lie to you, the surgery is a tough one to recover from.  i agree with laura, going commando is good at home, but if you need to wear something outside the house, the best adivce i have is to go buy some mens boxer briefs.  yes mens!  that way nothing is rubbing in the fold of your groin.  the pee bottle was helpful  before you go the bathroom fill it with warm water and spray yourself as you pee.  i had lymph nodes removed at the time of surgery so i had a drain as well.  infections are common post op, yes i had a skin infection.  do your best to keep yourself clean down there, i used alot of aquaphor to keep the skin soft. .  post-op sitting hurt, standing hurt, riding in a car was awlful.  the best postion i found was lying down with a cool pack against my vagina and a pillow between my knees to keep things from rubbing.  i had to have the same surgery again one month later as the first one they were unable to get enough sentinal nodes, so the 2nd surgery they went deeper for the inguinal nodes.  recovery/  from the surgery/  i was doing ok after 4 weeks.  DO NOT push yourself, take time to heal and let someone help, S>O>, husband, sister or friend etc.  do not feel embarassed at the fact that someone might have to keep on eye on things down there.  i was very lucky, my husband stepped up and helped.  have they said anything about radiation and chemo yet?  probably will discuss this after surgery after they find out your stage.  i will keep an eye out for you, and feel free to ask anything!!!!!!!!!!!!!

Gayle57
Posts: 1
Joined: Jun 2018

Hello everyone, I was diagnosed in March and im scheduled for surgery one week from today. It’s been a journey! 

I was first diagnosed with this 17 years ago at the age of forty. I went to my GYN for just a regular checkup. I felt nothing wrong. During the exam he asked me if I had any burning, itching, pain and I said no but he could see it. He immediately did a biopsy and it came back positive but since the edges were clear all I had to do was follow up with a GYN/oncologist and get checked out. After a year or so I didn’t need to go back. It still worried me but I was diagnosed right after 9/11 (and my DH & I work for one of the airlines that were inv that day) and I knew immediately after the doctor said the word ‘cancer’ that I would be alright - there were a lot of people (some were my co-workers) that had it so much worse than my problem - they never got a chance to go home a few days before. That’s how I coped. 

Fast forward to this year and it’s back and worse this time. Unfortunately I didn’t recognize the symptoms right away because I had none the first time and that was so long ago. When I finally went to my GP in February she misdiagnosed me. It wasn’t until March that she sent me to a GYN and he confirmed what I had & sent me to a GYN/oncologist. I was supposed to have my surgery earlier than this but because I’m also a cardiac patient (open heart in 2007) he needed a clearance from my cardiologist and after work ups and testing he found that 3 of my 4 heart valves aren’t working correctly ☹️ but he went ahead and cleared me because he said it was important to get this done now. So I’m having a partial vulvectomy next Tuesda. I am more nervous about this surgery than I was about heart surgery - I think it’s mainly because of where the surgery will be and it seems (at least in my own mind anyway) like the recovery part will be painful. 

I just needed to finally talk to others who understand what I’m going through. If anyone has any tips for preparing for surgery, day of surgery and recovery I would love to hear from you. 

God bless you all!

Car6166
Posts: 4
Joined: May 2019

 I was diagnosed with vulvar cancer approx  5 months ago .Vin 111  pre cancer .refered to oncologist surgeon at well knowen medical center . He just examined me and sceduled me for complete removal of my vulva plus removal of limp nodes. .When i went for pre op i requested less evasive surgery. He said if i needed less evasive surgery that  what he would of rec less. He said it was to deep for just parcial .I decided not to have the surgery and went home. I then saw my primary dr.who was not happy and refered me to a radiologist  .He wanted to start radiation asap and ordered a pet scan that showed no limp node involvement and cancer was not seen any place else. That was the first test I have had . B efore I could start radiation he said I had to see chemo dr.  which I did. The chemo dr.refered me back to the surgeon . He did not rec. any TX until I saw the surgeon again stating that was the best treatment option to try and work things out.I have another appointment this Tues. Will update soon ..I am 76 years old and really struggling  with this as all of you have .Thank you all so much for sharing your experience it is so important .

Car6166
Posts: 4
Joined: May 2019

Any info greatly appreciated

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2584
Joined: Mar 2013

MistyCabin and Car6166, I am a visitor from the Uterine board (we gyn cancers have to stick together) but I wanted to pop in and say it gets quiet on your board, but I hope you continue to post and support each other.  As you can see, others have been here before you and it you are not alone.  

 

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