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Vulva cancer

annett
Posts: 45
Joined: Aug 2015

Well finished Pet Scan looks good except for mass. Maybe a couple suspect suspect nodes which will get checked in surgery which will be Sept 9th 2015. Can't wait to get this mass out! Any comments on how the surgery heals in that area or advice. Thanks Annett

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

annett, vulvar cancer is probably one of the more rare gynecological cancers.  This thread can be a little quiet but hope someone can chime in and give some advice. 

Prayers for you dear!

annett
Posts: 45
Joined: Aug 2015

Thank you for the reply. I appreciate it. I do keep checking back in here and there. Prayers to all

 

annett
Posts: 45
Joined: Aug 2015

Have had all pre-surgery tests completed now. It has been confirmed I have stage 3 Vulvar squamous cell cancer. The Doc said she wants to remove all lymph nodes in groin area. Then I get rad and chemo concurrently. Then if mass does not shrink she will do surgery on it. So for now just hanging in until Sept 9th.

 

ccfighter
Posts: 476
Joined: Jan 2012

I'm sorry that you have found yourself here in the cancer battle but glad you found us on CSN.  It sounds like you have a good plan in place and are moving forward toward your cure.  There are a few others here with vulvar cancer that post occasionally.  I have cervical cancer so don't have a whole lot of info on your specific type of cancer, but wanted to say that you will do great, and be through it before you know it.  Back to a clean bill of health.  Hugs and best wishes for a speedy recovery.

annett
Posts: 45
Joined: Aug 2015

CCfighter, Thank you for taking the time to comment. It means a lot and I too am glad I found this site.

Lovingly, Annett

SUNSET
Posts: 6
Joined: May 2016

Annett my mother has vulvae cancer..she had a vulvectomy..now 2 yesrs later it is back..she is going to go for radiation have you had radiation?

 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

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.

annett
Posts: 45
Joined: Aug 2015

Thanks for the heads up. My gyn onc did mention lymphedemia. However, asking and measuring ahead just in case is a great suggestion. I made a note so I can call and discuss it with them. If you or anyone else has more info I will gladly take it all down. Smiles you have a great day! Annett 

funbeadgirl
Posts: 181
Joined: Jan 2009

Hi Annette, I'm sorry you have to go through this, I have vulvar adenocarcinoma, it is different than your type but I did have a partial radical vulvectomy back in 2009. I would highly suggest that you ask your surgeon about Sentinel Node Biopsy and do some reading about it on American Cancer Society website. I did not want all my lymph nodes removed and requested my surgeon to do the SNB, your doc will be able to explain to you if this is a viable option for you. It might be best to contact doc now before surgery, in case he needs to set up differently for the surgery. Cancer is different in each person, so don't be concerned if he recommends something different than what another person has had, but it doesn't hurt to ask. I wish you the very best and hope you get through this successfully! Be strong!

annett
Posts: 45
Joined: Aug 2015

Thanks funbeadgirl for the heads up I am making a list of questions to call and ask before my surgery. I will add this one. I believe it was addressed in the beginning but I can't remember how it turned out. Best to inquire again.

Thank you kindly, Annett

annett
Posts: 45
Joined: Aug 2015

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

 

Judemo
Posts: 107
Joined: Jun 2014

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/

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

Annett, I am so sorry. All of it is overwhelming.  Take a breath and tell us how you are doing. 

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

I am so sorry and I praying for you. 

annett
Posts: 45
Joined: Aug 2015

First thank you gals for your support and prayers! I had a Bilateral sentinal inguinal lymph node dissection and a  full inguinofemoral lymph node dissection. I also had Exam by radiology under anestesia checking the Radical Vulvectomy part out. This was to determine how best to shrink that lump/mass trying to prevent surgery on labia (vulvectomy). I had a women gyn onc surgeon, her assistant was a women gyn onc surgeon as well. I actually had a team of most all women. I must say I believe they are very wonderful ladies. Very competent and capable. I am doing great after the procedure and only spent one night at hospital. I have about 30 staples (15 each side) and still have 2 drain tubes. I will get further results from pathologists. Dr. says she is very optomistic about my cure.They have set up all appts for follow ups and chemo. I see radiologist on 17 to determine that end of things. I begin chemo on the 21st and am scheduled for 6x once a week for 6 weeks.  I will also get staples out the 21st. I don't know about the fricking drain tubes tho lol. I will try to update as I continue this journey. I have wonderful family and physicians. Praise the lord I am doing great and having no pain from surgery! Prayers,Hugs and Blessing to all. Annett  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

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
Posts: 45
Joined: Aug 2015

Hello thanks for the reply and I am kicking like crazy! Prayers and hugs to all, Annett

 

ccfighter
Posts: 476
Joined: Jan 2012

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.

annett
Posts: 45
Joined: Aug 2015

Thank you as well CC and hugs back at you! Annett

annett
Posts: 45
Joined: Aug 2015

 I am 4 days post op and doing great! Doing well. Trying to rest get ready for the next round. Hope you all are well and Hugs. Judemo I signed up at the MacMillan site. I like it it is great. Thank you Annett

annett
Posts: 45
Joined: Aug 2015

It seems I will not be getting chemoradiotherapy for a couple of weeks. I need more healing and iinfection is in left tube. Got antibiotic for that. Staples are good come out 21st. I only had 1 positive node on right side same side as lump. Left side was clear. Won't have rad on left. Just on right and tumor. Sounds like chemo once a week and rad 5 days a week for 6 weeks when it starts. Doctors are optimistic that they can cure me. Hope everyone is good. Prayers , annett

annett
Posts: 45
Joined: Aug 2015

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

Toast
Posts: 46
Joined: May 2010

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

 

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

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
Posts: 45
Joined: Aug 2015

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

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

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

Sincerely,

Mary 

annett
Posts: 45
Joined: Aug 2015

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

SUNSET
Posts: 6
Joined: May 2016

Oh my...why did you have all the complications?  

BoulderJoy
Posts: 1
Joined: Oct 2015

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
Posts: 46
Joined: May 2010

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

 

annett
Posts: 45
Joined: Aug 2015

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 

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

No I only noticed the vulva lump. 

Toast
Posts: 46
Joined: May 2010

Do you mind it I ask if it was visible? 

annett
Posts: 45
Joined: Aug 2015

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

annett
Posts: 45
Joined: Aug 2015

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
Posts: 476
Joined: Jan 2012

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's picture
Andeoup
Posts: 29
Joined: Apr 2013

 

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

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

Toast
Posts: 46
Joined: May 2010

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

Smile

annett
Posts: 45
Joined: Aug 2015

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's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

Great news, annett!!  

annett
Posts: 45
Joined: Aug 2015

I had petscan and tests in Jan 2016. Got the all clear from all Docs involved! I am scheduled for more tests March 2016 as a follow up just to be sure its all gone! Then I expect regular maintenance tests will be scheduled. I have resumed almost all my activities and am doing really well! Praise the Lord! Good luck to all who have to visit these boards. I wish you the best! I will check back in now and then. Remember the power of Prayer and a positive attitude. Love to all,

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

That's wonderful annett!!!  Take care and LIVE!

ccfighter
Posts: 476
Joined: Jan 2012

Awesome news!  

SUNSET
Posts: 6
Joined: May 2016

Will you wonderful ladies share with me how you managed with radiation.  My mother is 86..she had a vulvectomy. 2 years ago and it is back...thank you..I am learning how to maneuver on this site sorry if duplication. .thank u

Monica710
Posts: 1
Joined: May 2016

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.

2changes's picture
2changes
Posts: 24
Joined: Sep 2014

I also have vaginal cancer since July 31 2014 just finished my radiation (3rd) this time on my vulva. Its been 7 wks my side affect are horrible the pain has been tough the swelling hasn't gone down and my skin is hard I don't mean to scare you I'm hoping someone has advice for me also I understand when you say you feel alone unless someone walks in our shoes they will never understand staying hopeful and faithful is what I do also venting on this blog

2changes's picture
2changes
Posts: 24
Joined: Sep 2014

Hi had vulva radiation 7 wks ago ive had pelvis radiation a yr ago for vaginal cancer this time it is horrible does anyone have ADVICE the pain is horrible the swelling hasn't gone down and my skin is so hard ive tried soaking zinc oxide due to lessions so far nothing is working I'm desperate and impatient. Do I have to wait a few more wks? Please any advice

2changes's picture
2changes
Posts: 24
Joined: Sep 2014

Im truely sorry to you your. Famfrieds I shouldn't have venting on my horrible experience.
So Here we go my advice is always tell the doc whatvever discomforts you have wear loose fitting. Cotton cloth also amazan has cotton pantt liners again imnsorry shoulve been more supportive

Stay strong

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