Vulva cancer

annett, with the removal of lymph nodes it can lead to lymphedemia.  That's ok, it is better to know in advance as there are things you can do.  The lymph nodes, as you may know, remove fluid from your body and it is a pretty neat network throughout your body.  Most of the women with gynecologic cancer have some form of a compression garment, pantyhose, knee highs, etc....so check with your doctor if you can get your leg measured now so they will know what your leg was BEFORE surgery and can be ready to start treating if if fluid builds up.

I am not trying to scare you, just trying to help prepare you.  I remember thinking I had a blood clot since my leg was swollen, and after finding out it wasn't from an ultrasound, was determined to be lymphedemia.  The physical therapist who specialized in therapy for cancer patients, had to measure my leg and kind of guess when it started to look like the other one and I thought to myself, "Self - this had to be a know, possible side-effect.  Why wasn't I prepared???" 

Maybe you can see if your doctor can recommend one of these therapists.  I wish I had known in advance.

I am so sorry and I praying for you. 

Annett. you really do "sound" good!  And it sounds like you have a good team on your side!

Ask us anything and keep kickin' it!

Annett,

im so glad your surgery went smoothly and you have a good plan in place for curative treatment.  This all sounds great.  Keep recovering and building back your strength.  You are going to do great.  Hugs.

It can be a rough false start off and on. Be csreful mine started out okay then became a nightmare in a 4 month period of time. I also had a Left hymen-vulvectomy, left inguino-femoral lymph mode, deep femoral lymph nodes, and cloquet lymph nodes and soft tissue, dissection and removal and resection. I am 2 Years 4 months out and now have lymphedema from toes to under breast both legs. In addition I have developed  Femoral mononeuropathy, Polyneuropathy associated with another disorder, Sacroiliac joint inflamed, Sciatic nerve lesion, Idiopathic peripheral neuropathy, Lumbosacral plexus lesion, Lumbosacral spondylosis without myelopathy, Sciatica, Enthesopathy of hip region. I have had 2 lymphatic infection and was in therapy for almost 9 months. I have had 16 nerve blocks since May 2015.  The first illness that I developed was Collagenous colitis, the next my MRI showed that (every 4 months) that I had deleoped Ischiogluteal Bursitis, Torn hamstrings, Tendinosis and partial-thickness tears at the insertions involving the right greater than left hamstring tendons. This is worsened in the interval. There is also mild strain of the posterior right obturator internus muscle. I have been unable to walk, sit, stand, sleep without pain. Some damage was due to a 5 hematomas from surgery and one exploded and blew the surgery site out and I had to heal inside out. So many other problems from this nightmare. Very much sucks. 

Be careful and watch your steps.

Did any of you ladies notice soreness in your lymph glands before your diagnosis?

Annett,

Good luck on Wednesday.  I'm sure you will do Great.  I'm glad that you are healing and feeling better.  Chemo/radiation was not so bad for me, fatigue my biggest complaint.  I hope it is easy for you.  Big hugs.

I have been dealing with recurrent vulver cancer and just recently my doctor found found a vaginal lesion. Surgery and biopsy show stage 3 Vin with a centimeter of rogue squamous cell carcinoma. I have been recommended to have radiation treatments. I am very anxious about doing radiation. I have read numerous articles about the burns and short term effects. I also read with interest your thread on late stage effects of radiation. I am not sure whether I can actually go through the radiation, it terrifies me. I, like Sunset ,would appreciate any help on dealing with the radiation. I know this is probaly the correct thing to do so I am trying to get my head in the right place . i am feeling pretty alone in trying to deal with this.