Vulva cancer

annett said:

3 weeks post op

Hello all, I have still got tubes in from the node surgery. Hoping to get them removed in a couple of days. I am very anxious to proceed to the treatmnent part of this journey even tho it may be a rough road. I want to start ridding myself of this cancer. Patience is not on my side. I hope to start the first week of october as stated before. I am a couple of weeks behind due to that infection at node site which took a bit to get rid of. I am feeling pretty good all in all. I do have inner thigh numbness and soreness which is common in extensive groin node surgery, I have been told. Just venting and waiting. Hugs to all, Annett

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.

annett said:

Thanks for the heads up

Thanks for the heads up Andeoup! I am sorry to hear so much is happening with you. You have endoured a lot. I do know it can get ugly I am just going for all the positive I can get! The good Lord will guide my path to recovery however it shall go! At this point I am still doing good and go for post op with surgeon on the 5th of Oct. If all is well will get clearance to start treatments on the 12th. Bless you and I hope you get pain relief somehow. Annett

I pray that you will continue to heal successfully. I will be thinking about you.

Sincerely,

Mary 

Judemo said:

What a shocker

Annett, I'm really sorry about what your going through.  That just plain sucks.  I don't have vulva ca but deal with endo-cervical adenocarcinoma.  I actually have not been on here for some time due to a new job and family matters but I did happen to read the thread you started.  Please lean on us girls here ok?  We are here for you.  It's all such a whirlwind isn't it?  You find out the news and then bang! Your life changes and now your focused on your DX!!!  I do recall thinking the worst when I was first DXd! I was so nervous and anxious! But I gathered as much information as I could and learned so much from the wonderful gals here on CSN!!  They literally put me at ease after explaining to me that I probably was NOT going to die anytime soon! LOL, but instead, told me to relax, take a deep breath, make a list of questions to bring to the docs.   They began explaining to me about my type of cancer and they shared their stories with me and I began to feel better.  Knowledge really is power.  I asked a gazillion questions on this website.  I received a gazillion answers and that is how I learned about my type of cancer.  I was then able to ask the right questions at my appointments.  I did not like my first gyn onc DR and have had to change gyn oncs, but you ask as many questions as you need to and take someone with you to all of your DR appts.  My husband came with me to all of my appointments.  It helps to have someone remember what has been told to you.  My first DR just didn't want to talk to me or explain anything to me.  I highly recommend 2nd and 3rd opinions, as well as all the other women on here (they are the ones who encouraged me to get a 2nd and 3rd opinion and I am so greateful for their encouragement!).  You are going to get through this!!  Another great website for vulva ca is Mcmillan cancer support website.  You might get more ressponses from the ladies there about what you are going through as there are many more people with vulva ca actively on that website daily who share your exact DX.  They can walk you through step by step what to expect ok?  So go check out that website.  I was initially told I had endometrial cancer that spread to the cervix and also VIN III and VAINIII. I didn't end up having the VIN/VAIN (was wrongly DXd).  My original gyn/onc never apologized for that!  They never acknowledged their mistake!  They put me through a lot of turmoil for nothing.  Anyway, we will be thinking about you and keep us informed on your progress ok?  Here is the link to Macmillan

www.macmillan.org.uk/

I learned quote a bit from the UK site. I am praying for your healing. 

annett said:

Just another update

Hello everyone. Hope this finds all doing well and going on with life. I am finally doing good after node surgery. Healing nicely and awaiting treatment. It starts wednesday the 13th,Oct. Got the okay from onc surgeon and the rad team of docs. It will be chemoradiotheray. Cisplatin with Radiation concurrently.  I still have the tumor and they still think they can now make it dissappear totally. I pray so. Mentally I am ready to get this show on the road! Everyone is right the waiting is the worst of all. Hugs to all!

I was just checking in on everyone. I am glad to read everyone doing okay. Praying for you Annett And Boulder Joy!