Advice on recovery from vulvar wide local excision

NoTimeForCancer

Womenfly said:

UPDATE: I just had my laser surgery on 1/9/2018

my GYN oncologist advised me to have a laser procedure using a CUSA device.  I had one area that had already been biopsied as VIN 2-3.  During the surgery, she found another area and lasered it as well.  So far my recovery has not been too bad. I had a partial vulvectomy via CUSA.  I use a squirt bottle to dilute my urine so it doesn’t sting and it also helps keep the area clean.  I am taking stool softeners. I use a hair dryer on cool setting after I use my squirt bottle to dry everything.  I don’t have any stitches.  I’m waiting for my path report to come back to see if anything further needs to be done.  I have a follow up appointment in a week now to check and see how I’m healing.  I wear no undies and just dress type things for now.  No pants.  I’ll have to be watched closely because these things can recur.  I’m trying to stay positive and concentrate on healing.  It really wasn’t too bad for me.  Hang in there and stay positive.

how are you doing, Womenfly?

how are you doing, Womenfly?

chatterbox13

Wide local excision left vulva lesion, Cystoscopy

I had the above procedure on the 29th January and still quite uncomfortable.  The stitches have not yet desolved so that would be the reason.  I also get very itchy (especially at night) and wonder do any of you have this as well.  I don't see the Oncologist again until the 28th March and then once a year after that.  In between I am to see my Gynaecologist every six months for checkups.  I still am not wearing undies as this would definitely aggravate the situation so whenever I go out I wear long skirts.  At home I mainly stay in a nightie as this is so comfortable.  I wanted to join this group so I have contact with other people who have had this and so I have someone to talk to.  My result was that they got all the cancer and I am now cancer free but have to have the above checkups to keep an eye on me.  At the beginning I had cream to rub on the cut but now just leave it as is.  Hoping to see some of your replies to this.  Thank you 

 

Kim88

Excision left open!

Hi all,

Had surgery a week ago in UK and excision left open to heal i.e. no stitches. Wondered if anyone else here has any experience of this? Reason I'm posting is that the area started bleeding again yesterday. I assume this is to be expected, especially as I take anticoagulants, but would appreciate advice,

Thank you xx

NoTimeForCancer

Miss Kim, I can't give you

Miss Kim, I can't give you any advice on how to take care of this.  Call the doctor's office and see what they have to say.  Hugs dear one.

Ladysmurf

Kim88 said:

Excision left open!

Hi all,

Had surgery a week ago in UK and excision left open to heal i.e. no stitches. Wondered if anyone else here has any experience of this? Reason I'm posting is that the area started bleeding again yesterday. I assume this is to be expected, especially as I take anticoagulants, but would appreciate advice,

Thank you xx

Hi Kim, they did that to me

Hi Kim, they did that to me for my first op. It took a long time to heal. However as you are on anticoagulants I would definitely check out with your GP. I had a wide local excision last week, only this time I have lots of stitches, hope you are recovering well x

vsinn2000

I am literally in tears! I

I am literally in tears! I have found no else before this to answer questions.  I was diagnosed 1030/2017 via biopsy of a large lesion, with vulvar cancer. It's large, 7 cm long and 3 cm deep, in peri area. The first doctor wanted to go straight to surgery and do a colostomy bag and urine bag (not sure what it' called) and just remove all my lady bits. I nearly had a heart attack.  Second opinion - we did 6 weeks of chemo and radiation and the area looks closer to normal than it has in ages. Yes, I confess to pictures. I go May 1 for a repeat PET/CT scan to decide next step. They are saying surgery most likely. I'm scared to death. I made the mistake of looking up reconstruction surgery on the internet. How horrible is this going to be? Can someone explain if they've had this surgery?

vsinn2000

NoTimeForCancer said:

purplebunny, I am a visitor

purplebunny, I am a visitor from the Uterine board and wanted to welcome you. It can be a little quite here sometimes, and I know what it meant to me to have women telling me what to expect when I was going through everything.  I would say vulvar cancer is rare, but there sure seems to be more of you ladies popping up on here and I wish people would try to come back more often.  

Please be kind to yourself.  You have 'sisters' out here in the gyn cancer area. 

Vulvar cancer

I am so glad I found this. Are you a moderator? I'm looking at this surgery in a couple of weeks and cannot believe how terrified I am. I sent a message to chatterbox and left a post but I'm desperate for information so I can try and accept it ahead of time. The reconstruction surgery looks horrific and I don't know if I can make myself do this.

vsinn2000

Kelli K said:

Getting this done on the 12/23

Hi....I am new, but not new to VIN.  I was diagnosed in March of this year and had an ablation done.  It seemed ok, but got irritated over the summer.  I went back and he said it was fine (I didn't think so).  I went to my 6 month follow up and I was hoping that he would do a biopsy because I knew something was wrong.  He did and it is back so I am getting a wide local done to get it out (for good I hope).  I am not nervous, but I am wondering about healing and how it will work after??  Can anyone offer advice on functioning after (going to the bathroom, getting a shower, and being active).  I am happy that I am getting it taken care of. 

My gp also blew it off and

My gp also blew it off and sent me home with a mild steroid cream. I'm furious about that. Now after chemo and radiation I am facing surgery and reconstruction. 

MamaTo2

im really hoping this is still an active thread as I couldnt find any other info online! I had my wide local excision on 4/27/18 and post op was 5/2/18. It’s now 5/5 and I’m still in a decent Amount of pain. at my post op, the doctor said it was healing well, but I was just looking  down there by using a mirror and it appears that the incision is opening?? Is that possible? I know to call my clinic but I thought I’d try people who have been through this first. There’s no bleeding so I’m just very confused. Any advice, tips or tricks would be greatly appreciated. 

hope4everyone

Mamato2..my experience

I am not sure how wide my excision was in comparison to yours, but it was very wide compared to the original lesion ( I had a basal cell carcinoma on the outer lip of my labia-long story).   My doctor gave me a little jar of lidocaiine to dab on the area and that helped a bunch.  It did take awhile to heal and I was a bit concerned about week 4.  ( I was due to follow up after 8 weeks).  She told me I could come quicker if I wanted her to check it and I decided to wait.  Then, it healed quite suddenly between week 5 and 6. By the time I went back, it was barely visible, and it was a BUNCH of stitches to begin with. They disssolved very very slowly, but I do remember a spot that felt open, though I did not look.   I did notice when I leaned against a counter or sink, I would have a twinge.  I think some nerves were cut because it was a deep excision.

 

In any case, don't hesitate to call your doctor.  I am sure they will reassure you or take a look.  I also hope that your healing speeds up...

oldwhitehairedlady

going in for the excision this afternoon...

Freaking out. I have been reading this thread as I really have no idea what to expect and my research that brought me ultimately to this trhread was also kind of frightening...

NoTimeForCancer

OWHL (OldWhilteHairedLady - I

OWHL (OldWhilteHairedLady - I hope you don't mind).  Please let us know how you are doing.  As a visitor from the Uterine board, we still support our other gyn sisters.  Hugs.

KAHHMA

Post-Op

I am six weeks from my wide excision yesterday and can say I finally feel 100%. Unfortunately, we did not get clear margins so I am waiting on scheduling to call me from my local friendly gyn oncologist to determine what is next. Healing and pain wasn't intolerable but it wasn't fun for sure.

WhereTheSunDontShine

maryg_789 said:

Vulvar Cancer/VIN (NOT genital warts!)

Recommendations for anyone recently diagnosed:

 

In addition to asking lots of questions:

 

1. Prior to surgery, Ask about "Back-up" plan. Originally my surgery was supposed to be excision on left side, laser ablation on right side. Apparently, the area to be cut (specified radius from site of cancer) encompassed the area that was to be lasered, so everything ended up getting cut out; no laser. This was a "surprise" to me--see next point...

 

2. Ask your doctor to "draw" the proposed incision on you, prior to surgery. Wish I had done this. Although he verbally described the surgery, I guess I didn't really comprehend that he would/could take a different course while I was already unconscious on the operating table.

 

3. Record conversations w/ doctors if possible. Easy to forget stuff that was said. Ask if it's okay if you want, check your state laws for recording stuff, whatever;)

 

4. Get specific post-op info! I did not even know Dermabond was used on me until I called the next day and spoke to a "doctor on call" (it was a Saturday). I knew subcutaneous (dissolvable) stitches would be used, but NO idea Dermabond was going to be used. I found this to be a HUGE mistake/error? Very painful when it is applied to your pubic region. No idea how to "care" for this. (I'm still kind of angry about that)

 

5. Sounds weird, maybe, but I took pictures of my "area" before the surgery and every now & then afterward (to check healing, etc.) Seems like a large part of VIN and vulvar cancer is "skin checks" for discoloration, new developments as a course of "follow up" treatment? I know it's difficult for ME to remember what it looked like, let alone a doctor keeping track.

 

Hope those help. Here's my story-- maybe to help other women who aren't sure of what to do, and so other women don't feel all alone in this. It's scary, and a bit traumatic.

I had very small bumps? ripples? near the bottom of vaginal opening, on my inner labia for 6? 7? years. They were less than a pinhead size and brushed off by a previous gynecologist as just "wear & tear". I'm 47 now, and not sexually active for the last 2 years, gave up seeing gynos/doctors as I feel great, generally. One of these bumps starting growing--came to the size of half a pea in about 3 months. Went to see  a gyno and they convinced me it was genital warts!  Hahahaha...even though I explained my history AND the HPV test was negative.

They removed the large one & a few of the small ones--biopsy showed cancer. Off to the cancer doctor!

The 1st one I saw examined me, said she needed to have my biopsy "re-examined" for more precise details (???).  Next thing I know, I'm getting a call from her nurse to schedule surgery. I had to make an appointment to speak w/ the doctor as I had no info-- what type of cancer, what stage, etc.  NOTHING.

Doctor did not seem interested in discussing options, but I found out the large one was Stage 1A cancer, and the smaller ones were VIN 3.

Found a different doctor--supposedly the BEST in my area for this type of cancer.He explained a lot more than the 1st one, answered all my questions, but I think it boils down to "you don't know what you don't know"...hard to come up with questions when there aren't many "real people" down-to-earth resources.

I had a "radical wide local excision" on July 7 this year, and a month later, I am still trying to heal. I wish my post-op appointment had been 1 week after, not the 2 weeks they gave me. Stitch broke & I also now have a "skin separation"--doctor didn't seem concerned when I saw him 2 weeks ago today, but I don't think it's healing correctly. I'll see him again next Tuesday/week from now.

Anyway, I have very little support (no family nearby, no husband/boyfriend) and I feel that with this type of cancer (vulvar) being uncommon, there aren't enough resources/voices for the patients going through it.

 

 

If you've read this much--thank you. Again, I hope this helps others. 

Thank you. Any additional thoughts?

I appreciate you sharing your story. I'm meeting with my gyn oncologist tomorrow about surgery.

Now that you are almost a year post-op, I wondered if you have any more learnings to share and more importantlyy, how are you feeling?

WhereTheSunDontShine

Advice?

I'm new to this site 

I'm seeing the gyn-oncologist tomorrow to discuss the surgery. I'm trying to come up with questions before I go in so I can be as organized as possible. For example, I want to know about pain, deformity and recuperation. I want to know how aggressive he knows he plans to be. How often follow-up will be and will they include a biopsy every time. Are there other questions you think I should ask?

Additionally, I am a rape and incest survivor. All of this is triggering those memories, nightmares and depression about the trauma I've already sustained.  This feels like one more aggression. And while I know doctors and nurses (as well as others) are there to help, I feel like I am losing control of my body to others who will forget they are dealing with a person, not just a disease. Any words of advise?

 

NoTimeForCancer

WhereTheSunDontShine, I am a

WhereTheSunDontShine, I am a visitor from the Uterine board because a few of us visit it our gyn sisters.  I am so sorry about what you are going through, and I cannot comment on what you should ask, but I wanted to add that one of the women on the Uterine board had shared a similar past history of abuse.  If I recall, we all felt that it was important for her to let the office know. I think they will want to know and will better be able to help you.  Maybe you can call ahead and speak to a nurse.  I am sending you peace and strength.

 

tab73

Post operative surgery.

Hi! I am 45, from Brisbane, Australia and had a wide local excision of the vulva (VIN 3) of the lower opening to the vagina and of the perineum on June 20th 2018, and the possibility of a Flap reconstruction which wasn't necessary in the end, thankfully.  Great to find this site. As everyone here, I was petrified about the surgery but due to our fantastic healthcare system here in Australia, I felt very confident (although super nervous) going into surgery. My recovery was fairly good, although painful, I was suprised at how fast I recovered, even with a few infections thrown in in the last few weeks... 

I had a great support network around me. My mum taxied kids to school for a week and did all the household chores for me while I recovered after the surgery. It certainly wasn't easy or painfree... but 3 weeks out and I'm feeling a lot more mobile. I still have the stitches in which is a concern for as I though they would be disolvable, But will be calling my case manager in the next couple of days to check in whether this was the plan? (I wasn't old anything about the sutures or when they are due to come out)... I'm assuming they will come out when my surgeon sees me next at the end of this month (July - 6 weeks post op).

I was seriously scared about all of this, but am so glad that when I went for my regular pap-smear the GP I saw was cluey enough to realise that that particular area on the outside of my vagina didn't look quite right and referred me to the Gyno clinic at my Hospital. From There, it was a 2 month turn-around from diagnosis to surgery as I was considered high-risk and a Category 1 patient. 

Much strength to my sistars dealing with the same issues... I am happy to answer any questions as I am still on sick-leave at the doctor's orders.

Take Care,

Tab

Melissa Kaye

Feel alone and lose

Im 36 Its 2 am and I have so much on my mind I went searching for someone I could relate too and possibly talk to.I was diagnosed with VIN stage 2 a couple of months ago I went in for a prolapsed uterus and itching that wouldn’t go away for at least 8 months. The doctor took a biopsy and couple a weeks later told me it was a precancerous condition that had to be dealt with ASAP. I was floored and in total shock I honestly haven’t been the same since. I had a hysterectomy for the prolapse and a wide vulvar excision for the VIN. He stitched the area up and i went home a couple of days after. I’m now 9 days postop and the incision has completely opened which is horrifying and scary. The doctor said he could try and stitch it back but a lot of times it comes back open, I go back Tuesday to see what it looks like. The patholgy report came back VIN 3. My doctor consulted with a cancer doctor who said it was best to wait for this incision to heal and in 3 months take another biopsy to see if they got it all. Now I’m washing the wound and putting selvideen on it per he doctor. I don’t feel myself anymore.  I’m terrified at what I’m going to look like down there when it’s all healed. They also found rectovaginal endometriosis during the surgery so just another thing added on my plate. I look down there and don’t see a light at the end of this long tunnel that has began. I also feel lonely, disgusted,and embarrassed that I’m never going to have a normal relationship with another man because of this. Im trying to act strong for my kids and friends because everyone just tells me it’s all ok and acts like I’m not suppose to be devastated by it all. I just felt the need to reach out to someone.

Utahnative

Vulvar Precancer VIN 2-3

I wanted to share my experience so that it may hopefully help others. I would first like to say that everyones experience will be different depending on the extent of the disease and the areas that it involves. I had a diagnoses of VIN 2-3 with high grade cells. I have an excellent gyn-oncologist that gave me all my options and explained both the surgery and the recovery time. I am 62 years and have a type of VIN that is not thought to be caused by HPV. This disease is thought to be increased in smokers, I do not smoke. I had a mole on my vulva that a urologist saw during an exam for a urinary issue. It was bi-colored tan and dark brown. She said I should have it checked because it had characteristics of melanoma. So I had the mole biopsied by my primary care physician. It was not melanoma, but it was squamous cell VIN 2-3. So I was referred to my current gyn-oncologist. He suggested a wide excision of the area where the mole was and laser for all other areas. The diseased area is seen after swabbing the area with acetic acid. He showed me with a mirror how extensive it was. It included diseased areas of the clitoral hood, edges of labia minora and the largest area was the entire perineum and area around the anus. I had surgery just 6 days ago. I had surprisingly little pain days 1 and 2. Day 3 was by far the worst. My pain was more associated with constipation from the opiode (dilaudid) that was given to me post-op. I had not taken any percosets. The meds I was given was percoset, ibuprofen, stool softener, zofran (for nausea, as percoset make me ill), lidocaine cream for pain and silvadene antibiotic cream. I added miralax daily to prevent further constipation and continued the stool softener as well. Moving my bowels is particularly painful as the area all around my anus was lasered and is extremely tender. I am confused about some of the other people who posted that they went without underwear. I have drainage that requires changing a pad 5 or 6 times per day. The drainage seems to be coming more from the lasered areas than from the incision. I really can't even see the stitches because it was lasered over as well and looks like a huge (1 1/2 inches) scab. The excised area was by far the most painful. It still is 6 days later. The whole area was so swollen, it was hard to even recognize which areas of my anatomy were which. I can see why so many women get scared and worry if they will ever look the same. My surgeon told me that in 6 months I will hardly be able to tell that anything was done. I hope that will be true. I am most concerned however about whether I will need to be retreated. He explained it something like this: 60-70% of women will be treated once and considered cured, then of the rest of patients that get a second treatment the cure rate goes up to about 80%, then of the patients that are left and get a third treatment then it is at a 90% cure, some people will go on to receive a 4th treatment. He had said to me that people do not die of this precancerous condition, that may be true, but I read some studies that show that 3% or more go on to become true invasive cancer. The cancer is still treatable, but I assume the treatment will be more aggressive. I have not read further because I hope to be in the 97% cured category. I have used a hand held mirror to examine the area daily to make sure it does not look infected. It is horrible to look at, but each day as the appearance improves it decreases my anxiety. I highly recommend cleaning the area with a hand held shower at low pressure and low temperature 2-3 times per day. Only air dry or very gently pat it dry. Some suggest a hair dryer, but I did not need to use it. If you don't have a hand held showerhead, buy a squeeze bottle that others have suggested to keep the area clean. You do not want to rub the area. Don't sit flat unless you have to. Lie down or use a recliner. And take it easy. Don't return to work for at least 2 weeks unless of course you have to. I am retired, so best case scenario. I read some of you are younger and have young children. Accept any and all help you are offered. My sister stayed with me 2 days and it was so helpful. I also stocked up on convernience foods and cleaned my house extra well so that I did not have that to worry about. I also continued to ice the area for the first 5 days, I think I can stop now as the swelling is much less now. I was very scared of the pain and although it is pretty miserable it was not as bad as I thought it would be. But again, everyones disease and pain tolerance is different. I wish you all the speediest of recoveries and a full cure. 

jgal

maryg_789 said:

Vulvar Cancer/VIN (NOT genital warts!)

Recommendations for anyone recently diagnosed:

 

In addition to asking lots of questions:

 

1. Prior to surgery, Ask about "Back-up" plan. Originally my surgery was supposed to be excision on left side, laser ablation on right side. Apparently, the area to be cut (specified radius from site of cancer) encompassed the area that was to be lasered, so everything ended up getting cut out; no laser. This was a "surprise" to me--see next point...

 

2. Ask your doctor to "draw" the proposed incision on you, prior to surgery. Wish I had done this. Although he verbally described the surgery, I guess I didn't really comprehend that he would/could take a different course while I was already unconscious on the operating table.

 

3. Record conversations w/ doctors if possible. Easy to forget stuff that was said. Ask if it's okay if you want, check your state laws for recording stuff, whatever;)

 

4. Get specific post-op info! I did not even know Dermabond was used on me until I called the next day and spoke to a "doctor on call" (it was a Saturday). I knew subcutaneous (dissolvable) stitches would be used, but NO idea Dermabond was going to be used. I found this to be a HUGE mistake/error? Very painful when it is applied to your pubic region. No idea how to "care" for this. (I'm still kind of angry about that)

 

5. Sounds weird, maybe, but I took pictures of my "area" before the surgery and every now & then afterward (to check healing, etc.) Seems like a large part of VIN and vulvar cancer is "skin checks" for discoloration, new developments as a course of "follow up" treatment? I know it's difficult for ME to remember what it looked like, let alone a doctor keeping track.

 

Hope those help. Here's my story-- maybe to help other women who aren't sure of what to do, and so other women don't feel all alone in this. It's scary, and a bit traumatic.

I had very small bumps? ripples? near the bottom of vaginal opening, on my inner labia for 6? 7? years. They were less than a pinhead size and brushed off by a previous gynecologist as just "wear & tear". I'm 47 now, and not sexually active for the last 2 years, gave up seeing gynos/doctors as I feel great, generally. One of these bumps starting growing--came to the size of half a pea in about 3 months. Went to see  a gyno and they convinced me it was genital warts!  Hahahaha...even though I explained my history AND the HPV test was negative.

They removed the large one & a few of the small ones--biopsy showed cancer. Off to the cancer doctor!

The 1st one I saw examined me, said she needed to have my biopsy "re-examined" for more precise details (???).  Next thing I know, I'm getting a call from her nurse to schedule surgery. I had to make an appointment to speak w/ the doctor as I had no info-- what type of cancer, what stage, etc.  NOTHING.

Doctor did not seem interested in discussing options, but I found out the large one was Stage 1A cancer, and the smaller ones were VIN 3.

Found a different doctor--supposedly the BEST in my area for this type of cancer.He explained a lot more than the 1st one, answered all my questions, but I think it boils down to "you don't know what you don't know"...hard to come up with questions when there aren't many "real people" down-to-earth resources.

I had a "radical wide local excision" on July 7 this year, and a month later, I am still trying to heal. I wish my post-op appointment had been 1 week after, not the 2 weeks they gave me. Stitch broke & I also now have a "skin separation"--doctor didn't seem concerned when I saw him 2 weeks ago today, but I don't think it's healing correctly. I'll see him again next Tuesday/week from now.

Anyway, I have very little support (no family nearby, no husband/boyfriend) and I feel that with this type of cancer (vulvar) being uncommon, there aren't enough resources/voices for the patients going through it.

 

 

If you've read this much--thank you. Again, I hope this helps others. 

Same Same

maryg_789 My type of vulval cancer and VIN sound very similar to yours. I am 4 weeks post surgery and still healing. Have also had some stitches break and skin separation which Doc says should heal. She keeps telling me that the area is very forgiving!! Just wondering, now that you are nearly 2 years down the track, how everything has gone for you.

Judy