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Advice on recovery from vulvar wide local excision

Leannadk
Posts: 9
Joined: Jan 2012

I am having a wide local excision to remove vulvar squamous cell carcinoma on Tuesday. I am very nervous about the surgery and recovery and would love to hear from anyone that can advise me about what to expect for the recovery and what if anything you did to help the recovery process.

funbeadgirl
Posts: 181
Joined: Jan 2009

Sorry to hear you have had to postpone your surgery but best to be healthy before your body has to recover from a surgery.
Just a few ideas that were helpful to me when I had my vulvectomy, I used a squirt bottle(like a ketchup bottle) with warmish water in to flush area after using the bathroom. You can find them at grocery store or walmart in kitchen supply area.
I also lived in nightgowns, and didn't wear underwear for a long time. If I had to go out, I wore yoga pants in 2 sizes bigger, so fabric would not rub on wound site.Or I wore a skirt and went commando.I had full pelvic radiation also at that time, so it was necessary for me to avoid contact with anything against my skin.
During first week, I used an ice pack wrapped in a towel on the area to bring down the swelling, elevated leg on the side of surgery, and just moved slower and got lots of rest.
Every one will have a somewhat different experience, but I found the recovery to be not too terribly bad. I am sure your doc will give you pain meds, use them but also take something for the constipation they will cause. I am sure your doc will go over a lot of this with you too, actually his nurse might be a better help to you since they are the ones that deal more with patients.
Take it one day at a time, you will get through it. I am sorry that you have to deal with this, be strong and remember that cancer does not define you as a person,but will give you the opportunity to learn about yourself and you will see how many people care about you.

kohara1
Posts: 8
Joined: Jan 2012

I have been thinking about you and I hope you are healing well.
I started back to work last Wed.
I have fatigue after 3pm and sitting is still difficult. I work then come home and crash.
Looking forward to feeling better.
Take care
Kohara

Littlejfroglegs's picture
Littlejfroglegs
Posts: 3
Joined: Apr 2017

I'm a 41, almost 42yo single mother to an amazing little 5 yo boy.  I was recently diagnosed with VIN III after a biopsy and then oncology/gynecology surgeon consult at which time I was scheduled for a Wide Local Vulvar Excision Surgery on April 11th, 2017.  It all happened so fast, I didnt know what questions to ask.  After all, when you hear "Cancer" you think of life saving measure (type questions), not esthetics or anatomy post surgery.  

Journal entry:  I'm 6 days out from an Upper Vulvar Wide Local Excision surgery.  I can manage pain mainly with ibuprofen.  Still very tender and sore.  Quite a bit of swelling (from what I can tell) still. Bruising starting to appear above incision area.  Dissolvable stitches are still intact.  I don't understand what was removed or how the stitching was done.  Nor, what I'll look like down there.  I was told that my clitoris was not removed, but I'll be honest.....I don't recognize myself!! I look downward and all I see is swelling, bruises and skin stitched together where there never used to be.  I'm numb and don't want to probe around with my fingers and risk an infection or disturbing the stitches.  I'm scared and confused and angry and feel left in the dark.  My post op/next appointment, isn't until May 3rd, 2017.  I feel like I'm going crazy!!  

 Can anyone help me out?  Has anyone else experienced this?  Can anyone tell me if theI've had a similar experience and if the surgeon "relocated/reconstructed" any anatomy?  

 

Sincerely, 

a single, scared mom

 

cath5712
Posts: 2
Joined: Aug 2017

I'm sure at this point you must be healed.  I hope after the swelling went down that you looked good as new. 

Cathy

Nelle
Posts: 1
Joined: Apr 2017

I'm a 40 year old, single mum to a beautiful, almost 5 year old boy. I had an operation for VIN iii on Monday, so I am 6 days post op and still in a fair bit of pain. I had quite a bit taken; from bottom of vagina to 1 cm before anus. I'm bruised and sore, although I have good pain melds, it doesn't really take all of it away. I'm feeling pretty emotional about it all, previously I felt fine about having the surgery(I have the best surgeon in Australia who specialises in this area) but now I'm nervous that the results will come back as cancer. I am fortunate that I have a good support as a single mother, my family have stepped up while I'm healing.

cath5712
Posts: 2
Joined: Aug 2017

I have VAIN II and took vaginal chemotherapy (effudex), which gave me chemical burns on my perineum and in the vagina.  I had vaginal and vulvar surgery May 26 2017.  Today it is Aug 2 and I am still in some pain.  My perineal area is unrecognizable and looks grotesque.  No one prepared me for what I have been through.  The doctor told me it would be like an epesiotomy.  Boy, was he wrong!  At first the recovery was very painful.  I'd say an 8 on the pain scale and I was out of work for 6 weeks because the sutures popped open  due to the weak damaged tissue in that area. Now the pain it is probably a 3 or 4.  I wear dresses or yoga pants, nothing tight or restrictive.  I take Advil and have to lay down several time throughout the day to relieve the pressure of sitting on the area.  I have a pillow I sit on in my car and at work.  Fortunately my boss allows me to work from home half the day so I can be in a comfortable position.  My experience was a nightmare.   Most of the problem was due to the Effudex destroying my healthy skin.  I am now going to gyn/onc specialist, which I recommend. My gyn doc did the surgery and I really do not think he was experienced with this at all. Has anyone had issues with Effudex (5FU).  I am single as well and this has affected my life in so many ways. :-(

maryg_789
Posts: 2
Joined: Aug 2017

I had surgery on July 7, and yes, any "real estate" I had in the perineum area is pretty much gone now. I understand how you feel--it's quite jarring to see your anatomy mangled. I will post my own entry later, but wanted to let you know you're not alone. Sorry you/anyone has to go through this. Hang in there... 

maryg_789
Posts: 2
Joined: Aug 2017

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. Smile

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