Advice on recovery from vulvar wide local excision

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 

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.

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?

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

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...

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.

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. 

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, 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.

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.

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. 

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