Vulva cancer

2

Comments

  • Toast
    Toast Member Posts: 45 Member
    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

    Glad you are getting past

    Glad you are getting past that infection!  Hoping things will start moving at a better pace!  Waiting is the worst!!!

     

  • Andeoup
    Andeoup Member Posts: 29
    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

    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.

     

     

  • BoulderJoy
    BoulderJoy Member Posts: 1
    Vulvar cancer

    Hi Annett, I hope your surgery went well. I was recently diagnosed with vulvar cancer and had the same surgery to remove the lymph nodes in my groin about a week and a half ago. I start my radiation/chemo regime on 19 October.  Seems there aren't a lot of us fighting this cancer. Pretty rare. Anyway, I'm Joy and I'll send positive energy your way.

  • Toast
    Toast Member Posts: 45 Member

    Vulvar cancer

    Hi Annett, I hope your surgery went well. I was recently diagnosed with vulvar cancer and had the same surgery to remove the lymph nodes in my groin about a week and a half ago. I start my radiation/chemo regime on 19 October.  Seems there aren't a lot of us fighting this cancer. Pretty rare. Anyway, I'm Joy and I'll send positive energy your way.

    ???

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

     

  • annett
    annett Member Posts: 45
    Andeoup said:

    It can be a rough false start

    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.

     

     

    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

  • annett
    annett Member Posts: 45
    Andeoup said:

    It can be a rough false start

    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.

     

     

    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

  • annett
    annett Member Posts: 45

    Vulvar cancer

    Hi Annett, I hope your surgery went well. I was recently diagnosed with vulvar cancer and had the same surgery to remove the lymph nodes in my groin about a week and a half ago. I start my radiation/chemo regime on 19 October.  Seems there aren't a lot of us fighting this cancer. Pretty rare. Anyway, I'm Joy and I'll send positive energy your way.

    Welcome BoulderJoy

    Joy I am sorry we meet this way and on this site, but it is a good place. We can travel our journey together! My inner thighs are still sore and somewhat numb but I can live with that. My surgery is 3 1/2 weeks out. I am doing well so far. On the Vulvar board we are few but we are mighty! I did sign into the macmillan.org.com board it is in the UK. Seems there are a lot more ladies with this over there. It is a good site to look at. Prayers and blessing to you, Annett

  • Andeoup
    Andeoup Member Posts: 29
    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

    Good luck with your post op appt.

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

    Sincerely,

    Mary 

  • Andeoup
    Andeoup Member Posts: 29
    annett said:

    stage 111 vulvar

    Well I have been told officially I have stage 111 Vulvar Cancer and am 8 days away from surgery. Not looking forward to it much. They going after lymph nodes first and try to shrink mass/lump then a second surgery if needed. Sheesh just killing time here I guess.  Love and prayers to all, Annett

     

    Annette

    I am so sorry and I praying for you. 

  • Andeoup
    Andeoup Member Posts: 29
    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

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

  • annett
    annett Member Posts: 45
    Toast said:

    ???

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

     

    I only had one lymph node

    I only had one lymph node positive in my groin area. (they still took all of them out) I never noticed anything with this cancer only the lump in the vulva. Annett 

  • annett
    annett Member Posts: 45
    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!

  • ccfighter
    ccfighter Member Posts: 476
    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!

    Annett,
    Good luck on

    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.

  • Andeoup
    Andeoup Member Posts: 29
    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

     

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

  • Toast
    Toast Member Posts: 45 Member
    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!

    Thinking of you Annett and

    Thinking of you Annett and sending healing, happy, healthy thoughts your way!!!

    Smile

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    Andeoup said:

     I was just checking in on

     

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

    Ditto.  I hope they check in

    Ditto.  I hope they check in again soon.  They are an inspiration.  

  • Andeoup
    Andeoup Member Posts: 29
    Toast said:

    ???

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

     

    Toast

    No I only noticed the vulva lump. 

  • annett
    annett Member Posts: 45
    Toast said:

    Thinking of you Annett and

    Thinking of you Annett and sending healing, happy, healthy thoughts your way!!!

    Smile

    update

    Hello all, I am doing great as far as I can tell my vulvar cancer mass has disappeared! I had 8 weeks of chemo and 35 rad treatments concurrently with last ten as boosts. I will go Jan 18th for petscan and then Jan 25th to surgeon to get results and checked. So far so good! Keeping my fingers crossed and hugs and prayers to all.

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    annett said:

    update

    Hello all, I am doing great as far as I can tell my vulvar cancer mass has disappeared! I had 8 weeks of chemo and 35 rad treatments concurrently with last ten as boosts. I will go Jan 18th for petscan and then Jan 25th to surgeon to get results and checked. So far so good! Keeping my fingers crossed and hugs and prayers to all.

     

    Great news, annett!!  

    Great news, annett!!  

  • Toast
    Toast Member Posts: 45 Member
    Andeoup said:

    Toast

    No I only noticed the vulva lump. 

    Andeoup

    Do you mind it I ask if it was visible?